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Posted in Dr Michael Walsh - Bris- ??? Anyone on 25 Mar, 2014 - 5:48 am

Hi Kathleen,
i can't see how having a one-off consultation can help you - unless he's laying on hands, or something. And what do you do for follow- up?
I in no wish to denigrate Dr. Walsh's services.
cheers peter.


Posted in Glad I found you on 15 Mar, 2014 - 5:29 am

Thanks Roger, i've updated my protection.
My apologies for any offence caused.

regards Peter.


Posted in Stuck in Prison on 11 Feb, 2014 - 7:50 am

G'day mate, long time no hear.
Are you saying motorcycles are a bad thing for CH, or that actually doing something was wrong? P.s, motorcycle was my only transport in Perth, and i've bit the road at high speed. Hurts like blazes.
Shrek, Fresh air is your friend with CH, and obsessing about a constant, steady heartbeat is self defeating. You ( in my opinion) are contributing to your worries by worrying too much.
Your mother is to be admired, but if i were she, i'd shut down your internet and TV. Running a business is fine, but not off your back. Just my opinion.
chee4rs peter.


Posted in Another new member on 31 Jan, 2014 - 1:42 am

Hi Elaine,
sorry, i missed that you'd tried oxygen.
When you say you tried imigran (sumatriptan) tablets and that they didn't work, did they completely do nothing, or were they just too slow in their action?
I ask this because, although they work for me, if i don't feel the initial start of an attack, the tablets can take an hour or even a second tablet to have any effect.
If i catch the first sign of an attack ( a sort of peppery tingle at the hairline of my forehead ) and take a tablet then, then i only get about ten minutes of hell before it's over.
I never had any success with the nasal spray, but i'm told it's as much to do with how you do it as anything else. A bit like o2 i suppose...
I must say i'm doing alright with Batch's vit D regime so far. I much prefer to put less medication into me if i can, especially when none of it is specifically designed for CH.
When it comes to your GP, try showing a diary of your attacks, meds taken etc. They will have more to go on, and understand you're not just seeking attention or serious meds - if you don't already keep a diary, that is.
Good luck to you.
cheers peter.


Posted in Happy Birthday to a Friend we Lost on 29 Jan, 2014 - 12:24 am

Matt,
it's just about a year since Barry died.. I saw the message in The West Australian last year when i was on holiday in York. My mum asked what was wrong- i said i was mourning someone i'd never met but had helped me immensely. She understood, as mums do.
I regret not having let his family know how much he's helped me.
Thanks to Barry.
cheers peter.


Posted in Another new member on 29 Jan, 2014 - 12:16 am

Hi Elaine,
welcome to the forum, and sorry you had to find us. Have you tried oxygen; Batchs' vit D regime and all?. They're low cost, high effect, and minimal as far as your body is concerned.
We used to be very involved here, but we're all on recess. Post away. we'll help if we can.
cheers peter


Posted in chronic clusters on 03 Jan, 2014 - 9:14 pm

Hi Mike, nice part of the world you're in,
good beach too ( or used to be, i haven't been for a while- i'm from the hills) .
Wow, heart attack at 38 is hectic- was it lifestyle related? Some believe CH is diet / lifestyle related, which is the path i choose. Better diet etc makes a huge difference, but does take 6 months or so to kick in. It's not impervious, just resistant. Whether or not it's worth it is up to you.

I know some people say it's god's wrath and all, but surely we can't ALL have guilty consciences?
What about non-religious people, or the redeemed? Do they even get CH? (There's a study worthy of a grant).
When you say you were initially acute, do you mean the attacks were bad? Not having a go or anything, it's just that acute isn't a usual term with CH. All attacks are bad, and some are worse than others, but none are mild. There's a psychological terror that goes with CH too- more so than other types of headache- not demons though. Stay positive Mike- you CAN help yourself get better.
cheers peter


Posted in chronic clusters on 03 Jan, 2014 - 11:45 am

G'day Stevienic (is that Steve?)

Sorry you had to find us here, hopefully we can do some good for you and your partner.

I'm guessing you know Cluster Headache (CH) is considered to be either episodic, or chronic. Episodic sufferers have their run of clusters, then go into remission - for how long is very individual. Chronic sufferers don't get any sort of extended break between bouts, so for Chronic to go into remission, it would mean that the clusters are episodic again. I know this is possible because it happened to me after 4 years as chronic.

It's possible to go from episodic to chronic. Chronic doesn't mean attacks are worse than for episodic, just that they're constant- which is bad enough.
As far as I know, all CH attacks are considered acute medically.

No-one really knows what causes CH, so it's impossible to say why they start in the first place, but there are plenty of theories.
There is also no specific medication for CH- it's a case of trial and error until you find something that helps. Keep track of what's been tried, and ALWAYS check yourself what the doctor prescribes. Some meds require ECG's etc which doctors don't always follow up on.
Some of the migraine treatments also help CH, which is lucky. Imigran, and the other Triptan drugs, are very commonly used to abort an attack.
On the natural side, oxygen in very high doses can kill an attack if used immediately and correctly - refer to B.T.C. O2 treatment on the left.
Many of us are experiencing relief through the "water treatment" i.e. drink a glass every time you pass a tap, and through Batch's Vit D etc regime.
try also to eat unprocessed food as much as possible, so avoiding nitrates and preservatives and other chemicals.

Lastly- make sure your partner has been diagnosed properly. It's very possible to have symptoms that seem to point to CH, but actually be something different.
Read up as much as you can. There's lots of good info down the left there.

We here will do what we can to answer questions and give support- but do keep in mind we can sometimes be slow in responding. There's not very many of us here icon
Best wishes.
Peter.


Posted in New with CH on 30 Dec, 2013 - 11:05 am

G'day Bernie. Sorry about the lack of response- that happens here sometimes.
You did get it though- neck an ice cold can as soon as you feel an attack coming on. Supposedly the cafffeine and taurine does something, whatever. It does seem to help sometimes.

I love that you're downing beers to check your meds actually work. I wouldn't dare.
good luck to you.
cheers peter.


Posted in GREATER OCCIPITAL NERVE BLOCK on 07 Dec, 2013 - 6:54 pm

Invasive anything is never simple, Kim, but i'm also of the don't knock it brigade.. Have a go if you can and it won't damage you.
If I get to Vic Park in the new year, Kim, would you be up for a coffee? I'd like to pick your brains on this.
cheers Peter.


Posted in New to here but not new to CH on 04 Dec, 2013 - 11:45 am

Wow,
mega help here. Luke, Freddo; G'day.
Luke, check out the info down the left there, it'll give you something to go on with. Meds to kill an attack (abortive); others to keep them at bay ( preventative); ways to live your life that might help keep attacks away.. Good luck,
cheers peter.


Posted in GREATER OCCIPITAL NERVE BLOCK on 04 Dec, 2013 - 11:37 am

G'day Kim,
i'm late to the party again. As i understand it, the procedure you're talking about is a stab in the dark at best. I wouldn't do it.
cheers peter


Posted in Sumatriptan 6mg auto injectable on 07 Nov, 2013 - 4:07 am

Hi Mandy.

There's heaps of things you can try before $70 a jab preventatives. Besides which, 6 mg is way high to start with.
I think you're asking how to self- inject? You should ask your doctor- (and they should have bloody SHOWN you what to do ).
i can't get them here in Russia, i can only get the regular tablets, but i'm grateful for them, believe me. And they're enough, so far.
How's your diet, Vit D levels and all that? Good luck to you,
cheers peter.


Posted in botox? on 30 Oct, 2013 - 6:57 am

Hi Hazza, welcome to the forum, sorry you had to find us.

Are you diagnosed with cluster headache, or have chronic daily headache? Not quite the same thing- but still horrible though. Make sure your doctor is treating you for the right thing.

Lot's of info on CH and others down the left there, including botox. Those that have tried don't consider it effective for CH, but it could be right for you. What works for one might be useless for another- who knows?
Fresh food , vit D and lots of water helps in some cases, if you want a non-pharmaceutical solution. Good luck to you.
cheers peter.


Posted in Deseril Discontinued? on 22 Oct, 2013 - 6:40 am

G'day Chris- long time between posts.
yes, it's mostly discontinued, but if you're lucky you might find a dispensing Chemist to fill your prescription for you. (they're the ones that actually make your medication, not just grab a packet off the shelf.) I don't have a list, but they are out there somewhere.
Apart from that, maybe your doctor can suggest something similar? Good luck to you.
cheers Peter.


Posted in a little off beat humor on 13 Oct, 2013 - 10:01 am

Yep, Kim,
that'll stir things up- good onya.
cheers peter.


Posted in Long time sufferer on 05 Oct, 2013 - 4:07 pm

Hi Gail.
I 'd guess yes (for your mum i mean). Too many medications treeats none of the symptoms, just rebounds on the sufferer.

CH, and hayfever, eczema and chronic bronchitis ? Not indicated usually. Avoid antihistamines to treat CH though- they'll block your sinus's and your headd will exlode.
Avoid too much medication altogether, if you can.
Easier said than done i know. But the less your body has to cope with, surely the better ? Fitness starts with the mind Katy. I get the feeling you're on your way.
cheers peter.


Posted in Subconscious Mind on 03 Oct, 2013 - 8:48 am

Hi Katy,
I think you're right in that some people use ( or adopt ) a medical condition to have an excuse , but i'd bet CH is not one of those conditions. CH is not well known enough and it's not self explanatory, and there's easier conditions to mimic.
Stress and fear can trigger headaches, but they're not quite the same as CH. Mind you, it's possible to have more than one type at once, god forbid.

The person who commented "it's all in your head or you're bringing it on yourself" is just ignorant. Ignore their comments. If you really have CH, then they have no right to comment.

If they DO have CH they may comment, but then they wouldn't say what they did.

Have you tried Oxygen to stop an attack? It works for lots of people and is fairly easy to find.
cheers peter


Posted in Long time sufferer on 02 Oct, 2013 - 5:40 am

Hi Gail,
you mean the taking of the meds killed her? Your Mum? There was a lack of understanding and information back then, and not a lot of understanding in the world . Coping used to be a stiff upper lip and grin and bear it. Or g u r n and bear it. Quite another whole world compared to now How sad it is.

Gail- ( this is only my opinion) there's a few of us sufferers here, some have suffered more than that others. but except that we're crap at posting regularly, we're universally positive about beating CH.
if we can help, we do. Sometimes we're not on the mark- you'll need to verufy that- but surely you check that anyway?
Best wishes and good luck to you,
cheers peter.


Posted in Long time sufferer on 29 Sep, 2013 - 4:41 pm

Wow Gael-wyn welcome to the forum; that's 39 years you've been suffering if my maths isn't wrong. It's good to hear your attacks are easing. Quite a progressive Neuro you had there too.
I've also done the pressure thing on my neck, temple etc. I actually knocked myself out once. I don't recommend it as a treatment though. The rebounds are immense.
Lots of info and friendly shoulders here, and please share your findings if thats alright.
cheers peter.


Posted in Exercise and CH on 27 Sep, 2013 - 8:43 am

Hi Katy,
I try not to put too much weight on words- regardless of the book. What happens to you might not have ever been covered before.- maybe you're unique?

Batch's Vit D regime is covered in many places- have a look, you'll find them.
cheers peter


Posted in Exercise and CH on 25 Sep, 2013 - 7:49 am

Hi Katy,
hopefully it's just a horrible co-incidence.
what happens if you scale down the fitness regime? Say, walking on the beach every day and only fresh unprocessed foods, instead of full on? Maybe that'll be enough to keep you active without triggering attacks.
If nothing else, it might help eliminate causes and triggers.
BTW, it's possible to drink tons, but not uptake water properly. The effect will be the same.
Have you tried Batch's Vit D regime? It has helped many CH sufferers.
best wishes Peter.


Posted in Sufferer for 10 years on 25 Sep, 2013 - 7:28 am

Nicely put, Alex.
However, the original premise for the thread has been deleted, so surely the whole thread should go to?
No point for its existence otherwise.
cheers peter


Posted in Suffering? Never quite sure at the moment... on 25 Sep, 2013 - 7:24 am

G'day Frosty. Sorry about the delayed response.

Are you looking over the precipice, or overlooking the precipitate? (sorry was two birthday party's tonight - you'll get No sense from me )
I'm slightly older, and attacks have decreased, compared to before. I stopped smoking too, at the time.
i also get that about to happen feeling- i try and pull my head in for a while. I snack out on prunes, drink water like I want drowning, and sit in the sun ( if I can). It works sometimes.

As a personal thing Frosty. If you've done a bout of CH, had it stop for a while, then it hit again,
there'll be a fear in you that can't be erased.
I use that "impending" feeling as an imbalance warning from my body and mind, and I start making soups and stuff for myself. Doesn't always help, but certainly doesn't hurt.
cheers peter.


Posted in Sufferer for 10 years on 22 Sep, 2013 - 4:43 pm

Thanks for that Colin. Cheers too, Alex.. I know i'm a loud mouth bastard, but Kim's not.
cheers peter


Posted in Sufferer for 10 years on 22 Sep, 2013 - 10:31 am

Wow, SKW,

methinks you do protest too much.
cheers peter.


Posted in Sufferer for 10 years on 20 Sep, 2013 - 9:27 am

Thanks Kim
Tough being a sandgroper sometimes eh?
cheers peter


Posted in Sufferer for 10 years on 20 Sep, 2013 - 12:57 am

Hi SKW,
i'm sure Brisbane headache centre is happy you're spreading the word for them, but please don't multiple post the same message under different headings.

I seem to recall we've been down this road before though, and there was absolutely no connection between CH and the stated manipulation therapy.
cheers peter.


Posted in Why Russia? on 18 Sep, 2013 - 12:44 am

G'day Alex,
I've been here 16 years, but am now looking to return to Australia.
It has certainly been an adventure.
CH sufferers are not well catered to in Russia. A lot of the medical practices are so outdated it's pitiful. No such thing as home oxygen- too much of a fire risk in high density housing. Imigran tablets and nasal spray are available, no injections. They are all hideously expensive- no PBS here. Generic version tablets are available thank goodness, but are still $10 each. Opiate painkillers used to readily available, not any more. You'll also need to visit a doctor every time you need a prescription- no such thing as repeats here.

Still a great place to visit though, especially St. Petersburg.
cheers peter.


Posted in Mindfulness on 17 Sep, 2013 - 7:10 pm

PM sent.
The book is "The Power of One" by Bryce Courtney.
Specifically it's the bit where PK learns how to go to a special place in his mind to escape his tormentors.
Not the same as CH, but still relevant. Well- to me anyway icon.
cheers peter.


Posted in Mindfulness on 17 Sep, 2013 - 3:22 am

Hi Alex. No i'm not religious. I despise religion.
i am interested in spirituality though.

cheers peter.


Posted in New to site on 16 Sep, 2013 - 9:38 am

Don't you love it CH people- "one of the side effects helps CH".

Man , beta blockers can shift your entire being. Personally- my hands and feet felt detaxched. i asked for something else.
There's lots of info around, click down the left there.
cheers peter.


Posted in Mindfulness on 16 Sep, 2013 - 8:11 am

Lol, the road of discovery is long, little grasshopper icon. It sounds as if you've reallzed you are the strength you need.
Did you read the book i mentioned?
cheers peter


Posted in Sufferer for 10 years on 16 Sep, 2013 - 7:44 am

Shrek / Alex, g'day. How's Wollongong? Birthplace of another great Australian - Wayne Gardner icon.
Vixen, i'm no doctor. But to me it's simple- when your body's overloaded, that overload manifests itsrlf in different ways: CH, migraine in all its forms, other malaise.
Nausea points to liver function though - maybe get that checked too. Your doctor said no oxygen Jo - if he thought you've not got CH, then that's what he'd say.
Running into walls i can empathize with, but twitching all down one side is not usual for CH, As far as i know. What's your medication regime? Maybe that's the cause.

It sounds to me as if you've actually found a doctor you can work with, Jo- positive things are happening icon
cheers peter


Posted in When to start Complex B supps on 14 Sep, 2013 - 4:05 am

G'day Muppetts,
correct, it is a Vit D regime. That's the one, not Vit B.

Batch's regime is Vit D3 Zn Mg. Vit B too probably wouldn't hurt . I add lots of Vit E to my regime- seems to work for me so far (touching wood icon)

cheers peter.


Posted in Mindfulness on 14 Sep, 2013 - 3:45 am

G'day Alex / Shrek,

Maybe me- the "10 year anniversary thread" . I'd insert the link, but i always get it wrong.

cheers peter.


Posted in Sufferer for 10 years on 09 Sep, 2013 - 1:08 am

Hi Jo,
What you're going through is quite common. Because it's so rare, most doctors simply have no clue about CH. There are quite a few types of headache with similar symptoms- some of them treatable, some not. CH doesn't have a specific treatment, only trial and error.
A CT or MRI scan is usually done just to make sure you don't have a brain tumour, again, it's about getting the diagnosis right.
You ask about oxygen in another post- have you actually tried it? The reason I ask, is that if it does help, you definitely have CH because Oxygen doesn't stop attacks for other types of headache ( as I understand it. I'm no doctor- this is just info i've picked up along the way).
To make things more confusing, oxygen doesn't work for everyone.

Do you keep a diary of your attacks? Make a record of when you get them, how long they last, intensity, what meds you take and their effect ( all that sort of stuff). When you see your doctor or neurologist, that information will help in the diagnosis stage.
If one neurologist said one thing, but your records show something else, a new doctor will sit up and take notice. Actions speak louder than words here.

Many of us here have had dramatic improvement by using Batch's Vitamin D regime, and by going to a more fresh food / no processed food diet. If you haven't tried it, have a go, but give it a fair go. It may take some time to see improvement.
Good luck, and let us know how you get on.
cheers peter.


Posted in Sufferer for 10 years on 08 Sep, 2013 - 6:08 am

Hi Jo, welcome to the forum. Wow, that's quite a vent you had there.
Not sure if i can say anything to help, but here goes.

First- There's no one pill to pop to stop CH. Treatment consists of working out what works for you.
Second- chronic Paramoxyl Hemicrania is not CH. The treatment is not the same.
Get yourself properly diagnosed, then at least you'll be treating the correct condition - bear in mind you could have more than one thing wrong.

You need to help yourself if you want rid of your headaches Jo. The info down the left there is worth a read- plenty of good advice there.
Good luck to you, and your daughter too.
cheers peter.


Posted in New to site on 05 Sep, 2013 - 2:06 am

G'day Owen,
tanks come in different sizes - if you can, set up a rig in each place you're going to be. Check the B.T.C. O2 treatment link on the left there, if you haven't already. B.T.C. stands for Barry T. Coles. He was our super guru on oxygen, but sadly died earlier this year.

Why does Vit D help? Who knows? We don't even know what causes CH yet. It does seem to work though and is surely a much better solution than a swag of medications not really designed for CH anyway.

If i'm in cycle, I can make an attack start in minutes- half a glass of beer and wham! I can't think one to start though, and not sure I want to. icon

cheers peter.


Posted in Doc says CH, I'm not so sure? on 27 Aug, 2013 - 11:54 pm

Hi Chooka,
The way to approach this situation, is to ask your doctor what is the difference between the various conditions, because the info you've read is causing you some confusion.
That way your doctor will need to at least look at the other conditions. There's a few conditions which mimic CH- some respond positively to treatment, some not so.
If your doctor won't be open minded, find another one who will.
yes you will need a referral to see a neurologist. Doctors will usually order an MRI or other scan to rule out space occupying lesions too.

There's no quick answers unfortunately. Only you can really know what your symtoms are. Keep notes to show your doctor- length of attack, when you get them, severity, stuff like that. The more information you can givee, the better your doctor can diagnose you.

The info on the left there has a list of commonly prescribed meds, if something doesn't work after a reasonable trial, ask for something diffferent. An accurate diagnosis is your first priority though. Good luck to you.
cheers peter.


Posted in Help on 16 Aug, 2013 - 10:18 am

Hi Debbie, welcome to the forum. Alison, ask your doctor to recommend someone competent... not every doc will know what you're talking about.
you are in familiar territory- we're all trying to work out what makes these things happen, and how to stop them.
These days I'm favouring a less meds more fresh life ,which so far hasn't made things worse. Change of season can be a bear though.
Best wishes to all
cheeers peter.


Posted in I am still here--long time no speak on 15 Aug, 2013 - 11:17 pm

Hi Heather icon,
sorry, i've been away too and didn't see this.
It's full on summer here (raining, 16 deg), so I don't plug in the computer so often- must enjoy the weather while I can. Yes, sixteen deg. That's summer here. Rats.

Are you having a go at the vit B regime? It might turn you green at last.
I hear you on the personal coping bit- that's important for all of us.

I'm glad you're coping again, Heather. Regards to you family and I hope you turn green soon.
Love Peter.


Posted in New to site on 07 Aug, 2013 - 4:21 pm

He he, Colin- I reckon we all choose pain free- how that happens depends a lot on ourselves.

how ya goin Owen? That pressuring your arteries (if that's what you do) is not uncommon. I've used the same technique just to make myself pass out- probably not healthy, but without pain is better than with.
Waking up isn't always fun though. best wishes to you all.
cheers peter.


Posted in Long time sufferer.. First Forum post on 07 Aug, 2013 - 3:46 pm

That's fine Mardi. Any time attacks are less than full on, something is going right.
You'll have to have a hunt through medications and treatments to find what you're looking for- it's in there somewhere.
i wouldn't worry about overdosing on Vit D- it can't be worse than having to stick a needle into yourself. But there again, i'm not a doctor. Best wishes to you.
cheers peter.


Posted in Long time sufferer.. First Forum post on 05 Aug, 2013 - 3:11 pm

Hi Mardi, welcome to the forum. Sorry you had to be here, but lots has changed recently so maybe some good will come of it.

Attacks returning after a long time free is the pits. They seem to hit harder, stay longer, and hurt more, especially after you'd hoped they've gone.

Me- I don't count one day at a time. You said yourself your bouts last eight weeks or so, mine too- so I count from 10 weeks. I know I can get through it; i've done it plenty of times, but this way i'm in charge, not the beast. It still bloody hurts though.
Have a go at Batch's Vit B regime and all that natural stuff down the left there, if you haven't already. It seems to do the trick for a lot of people, me included.
Fingers crossed your bouts will be less frequent, and milder too.
cheers peter.


Posted in Help on 31 Jul, 2013 - 5:43 am

Hi Alison,
Wow. If you're sure you have Cluster Headache (CH), then only you can help you. We'll do what we can too, but
There's no instant cure. You've got to help yourself.
What there is, is heaps of info- down the left there - which YOU have to read. Don't keep yourself miserable. But why no oxygen around your kids?? You can't secure meds?
If you have young children and need help coping, then say something to your doctor. Immediately. please. Best wishes to you Alison,
cheers peter


Posted in Lsd for CH`s on 26 Jul, 2013 - 7:05 am

Hi Toddy,
your boss must be VERY tolerant! icon I'm jealous, if dropping acid is returning your life to normal. I LONG for a normal life...
No really- you'll find it's not a cure, but it is one of the more enjoyable treatments out there. Just be careful- do your research.
cheers peter.


Posted in New and struggling badly on 26 Jul, 2013 - 6:56 am

Hi Trent,
welcome to the forum- sorry you had to find us.

First place to go is the info on the left.
I see you've already used some info, keep on reading buddy! icon It's heavy going sometimes, but worth it.
For low cost things that might help, read B.T.C o2 treatment - oxygen helps better than half of sufferers, but you have to do it right. Also read Batch's vitamin D regime, and the water treatment. There's diet posts buried in there somewhere too- well worth a hunt. Eating naturally fresh food where possible helps a lot of people too, me included.

We're very rare, Trent, we CH people. Many doctors have never treated one, but thanks to the internet, awareness is getting better. We're not worth a lot to the pharmaceutical companies, so not so much research gets done. Don't hold your breath for a cure.

Most of what you read on the left is what members have discovered / uncovered and shared. A lot of different stuff from a lot of different people. Good info- But don't take their word for it- test it, check it, make sure it's right for you. Some medications have different names but the same ingredient, so check safe dosage and interactions- you're the only one who can really do this.
If you can, Involve your doctor by keeping a diary , though if they've already taken heed of this site's info, then it sounds like you've got a good 'un. icon
CH has no cause and no cure Trent, but we'll all do what we can to help, just remember there's not so many of us, and a reply sometimes can take a while. Good luck.
cheers peter.


Posted in new on 26 Jul, 2013 - 5:39 am

Hi Colin (and Sara),

good to hear you're finding relief Colin. Looking forward to a bout is a new one on me- i hope you don't have an unpleasant surprise.
As Sara said- you will have to adapt any regime to fit yourself. Keep a record of what works (or doesn't). It gives your doctor more to go on, and shows you're pro-active in managing your condition.
You did the right thing in ditching your crap neuro- if they're no help, find one that is.
Best wishes to you.
chers peter.


Posted in My new 'cocktail' on 19 Jul, 2013 - 11:41 pm

Hi Cads,
Feeling lost is understandable, but you're not alone. We'll help how we can.
It's not unusual for meds to stop being effective, in fact it's quite common.
Topamax (topiramate), does seem to work for CH, but the side effects are severe- exactly as you describe and more.
Do you take Imigran at the very start of an attack? That's when it's most effective- that can also make you feel tired and washed out.

Ask your doctor about oxygen- it can help.
have a read of the stuff down the left there, the more you know the better help you can get.
Keep a diary of meds you're prescribed and what combinations you take them in. If you have a bad reaction (or good one), you will be able to let your doctor know with precision what you've taken.
good luck to you.
cheers peter.


Posted in Another Newbie to your site on 19 Jul, 2013 - 11:27 pm

Hi Merl1n,
as Kim said, we're not doctors; you will have to check things for yourself.

With cluster headache, CAT scans and MRI's are done to rule out anything else, but as you've already got something else, it's anyone's guess. There could be more than one thing going on though.

One thing you could try is pure oxygen at very high rates (read B.T.C. O2 treatment on the left there), because oxygen therapy can stop a CH attack. It doesn't work for everybody with CH, but it does work only for CH (as i understand it).
Sorry for being so non-specific. Try and keep a diary of your headaches too- it will give your doctor more to go on. Good Luck.
cheers peter.


Posted in Cefaly - Using Tens technology on 14 Jul, 2013 - 2:38 am

Hi Roger,
maybe delete the last couple of posts? then future members won't know of this.
cheers peter


Posted in Cefaly - Using Tens technology on 09 Jul, 2013 - 8:15 am

Squabble? I don't do squabble Roger. Thanks anyway.
cheers peter.


Posted in Why Russia? on 01 Jul, 2013 - 8:41 pm

As most of you know, i've been living in Russia for nearly 16 years. I've been asked why heaps of times.
it's snot freezing cold in winter. Summer is about 8 weeks long. It's dark, dank and dirty the rest of the year.
BUT- by some oversight i'd forgotten to pay my electricity bill for 13 months, and when I realised, i went into cold sweats.
I have a home theatre. The amplifier pulls 1.3 MW/h flat chat, twin subs pull more, as does a 50" plasma. There's a kitchen hi-fi system as well as a valve headphone rig, besides the usual home appliances.
My bill came out to (including penalties) 12 thousand roubles- about $30 per month. icon
Ok, that's not a great reason for being here, but it was a pleasant surprise. I thought i was going to have my pants pulled down.
I asked why it had been allowed to go so long; Power cannot be shut off here, by law.
Then there's unlimited internet access for $20 a month. Income tax at a flat 13%, fillet steak at $10 a kilo, and the girls are stunning, if high maintenance.
Still doesn't make me less home sick sometimes, but for that quality vodka is $10 a litre. (i joke). Well, a little bit.
Anybody passing through is welcome to look me up.
cheers peter.


Posted in Barry T Coles on 01 Jul, 2013 - 8:13 pm

Yes, I must admit to a sinking feeling when i read his death notice in "The West Australian" whilst on holiday in York.
My mum saw me and asked what was wrong. When i told her, she said "well, his life served a purpose in helping others, and his spirit is surely in a better place now". Tha'll do fo me.
The best we can do is to ensure his words of wisdom remain to be seen and continue to help others.
Grief should be brief.
cheers peter.

Forgot the "Tha'll do fo me".


Posted in Hi another uk newbie to this site on 30 Jun, 2013 - 4:52 pm

G'day Kim,
that was super lucky for you. I usually have to stand near the toilets/ hostess space- the air seems fresher and is definitely cooler.
As i understand it, it's specifically opiate based painkillers that can get you into trouble in muslim countries. Not something i want to test though, if you know what i mean.

cheers peter.


Posted in prednisone on 29 Jun, 2013 - 2:15 am

G'day Bren, glad we've been of help. This site probably saved my life too.
i hear you on the lonliness bit. I developed CH here in Russia. trying to make myself understood was a mind trip.
The bizarre thing was when I finally went to a neuro, he didn't say anything about Imigran! I found out about that from here (thanks Roger), then discovered Imigran and tramadol were over the counter at the chemist.
Tramadol - no script, because heroin was cheaper so the junkies didn't go for it. Weird place this sometimes. now it is script only, which means a trip to the doctor every time- no repeats in Russia.
Sorry to Wrighty for highjacking the thread icon
cheers peter.


Posted in Hi another uk newbie to this site on 28 Jun, 2013 - 10:28 pm

Cheers Ben. possibly a good sub- directory... info for travellers.

I can't remember who or when, but somebody did post that they informed their airline about their CH at the time of booking, and the airline laid on O2 should they need it.
i'll bet a motza it wasn't Qantas though.
cheers peter.


Posted in prednisone on 28 Jun, 2013 - 8:57 pm

I also did hard yards on this stuff- actually dexamethasone- but similar. I will NEVER touch it again.
I would rather eat someone else's nostril hair. All it did was alter the time of my attacks so i didn't know when they would happen anymore.
i also put on 18kg in two weeks. Weight gain is a known side effect- my neuro just didn't tell me. That's when i started researching any meds for myself.
I should've been suspicious at the full ashtray and vodka glasses on my neuro's desk- live and learn, i suppose.
Sorry gasmanbren- i've not said g'day before.
cheers peter.


Posted in Hi another uk newbie to this site on 28 Jun, 2013 - 8:44 pm

G'day all,
apologies for the slow reply- i've been camping. Gotta enjoy the warmth while you can in Russia icon

yes, I took Imigran into Australia- declared at customs. You're permitted 3 months supply, (at 300mg per day) but take a doctors letter with you. i would recommend declaring ANY meds- getting it wrong would be an extra headache you can do without. i've never had a problem by being up front about things.
You will have to jump through hoops to get a script in Aus- backwards over-regulated nanny state that it is. O2- good luck with that.
Re: painkillers- beware if opiate based and you're flying through Dubai or any other muslim country- you could end up in jail, script or no.
cheers peter.


Posted in US Supreme Court unanimously rules that genes extracted from the human body are not eligible to be patented. on 20 Jun, 2013 - 10:34 am

...If Monsanto no longer own the patent on seed stock like a GM developed strain of Canola, how are we going to feed the masses? They deserve the right to protect their IP and research efforts, but at what cost to mankind?... YEAH! What cost to Mankind? The bloke on the farm next door has his hard won organic status stripped, then gets sued by Monsanto for the cost of the cross pollination. What cost to humanity?
The subsistence farmer in India now has a non-regenerating crop and must cough up every year forever after. and not just there either.
Insulin for a buck? I bet Dr. Fleming didn't get a lot from penicillin either, apart from feeling good. There should not be a patent on making people feel fine. cheers peter


Posted in Batch's anti-inflammatory regimen for CH on 19 Jun, 2013 - 2:26 pm

Woohoo Ben, i didn't see you were green, good for you. Thanks Batch and the researchers too.
cheerts peter.


Posted in US Supreme Court unanimously rules that genes extracted from the human body are not eligible to be patented. on 19 Jun, 2013 - 2:14 pm

Eh? "Nor would removing patent protection on genes hamper medical research, he said. "It's absolute nonsense that patents hinder research". Whatever.

No patents on genes is a good thing, But "these synthetic DNA sequences include so-called cDNA -- the "c" stands for "complementary" -- which are edited forms of a gene, with extraneous stretches excised"... amounts to the same thing anyway.
cheers peter.


Posted in Once a month vaccination against CH - Antibody targets CGRP release on 09 Jun, 2013 - 10:23 am

Is vaccination the right term? That's usually reserved for contagious diseases.
Whatever, I hope something comes of it.
cheers peter.


Posted in My alternative treatment on 31 May, 2013 - 10:58 am

Here, have an extremely expensive bottle of water...
But, state of mind plays an enormous part in healing for those susceptible to placebo, so who's to judge?
I expect substancially more flavour in any expensive bottle i buy though.
cheers peter.


Posted in One more gene, research funding and Presenteeism on 27 May, 2013 - 9:53 am

The reason i keep harping on finding a cause, is that a targeted response needs to have a target, and wiping something out becomes a whole lot easier when you know what it is. The method used at the moment is to keep throwing meds until a reaction is seen, then try and deduce what was cause and what was effect, and can the effect be maintained without killing the cause,
I respect the right of the investor to expect financial returns; i'm also aware enough to know that CH is the very unglamourous cousin to migraine without hope of attracting serious research funding, and the best we can hope for is accidental discoveries.
The thought of a gene being shown to cause CH does not fill me with joy either. Humanity's track record on gene manipulation is onerous to say the least.
You cite a dedicated goup of carers owning their own patent as being a win over the drug companies. I consider that excellemt, but of no real signifigance , when gene patenting without the consent of the owner is considered acceptable business practice in the medical discovery world. If the big pharm companies put their minds to it, any action such as the SF group can be stalled and delayed so long everyone in the group would be broke or in an old age home.
I AM an optimist, Ben, really. I'm not so cynical in real life.
I do get annoyed at the control and manipulation of the general public that passes for government these days. Natural plants get banned, will even land you a jail sentence just for using it, yet all they do to you by and large, is make you feel good. And yes i'm aware some users experience psychotic episodes, that's probably going to happen whatever they use.
The drugs that we use to combat CH are all aimed at treating the symptoms. Why? Well, first the cause has so far escaped discovery, and second, a cured patient no longer needs medication. And that's where i'll stop, before i blow a fuse.
cheers peter.


Posted in Shadowing on 26 May, 2013 - 5:49 pm

Hmm- don't like their definition of shadowing. For me the precursor to an attack is a peppery sort of tingle above my left eye at my hairline. That tells me i have about 10 mins before it's full on.
Meds taken immediately can prevent things actually getting too painful.
If an attack presents but doesn't ramp up then to me it's a shadow. The start of a cycle gives me a hint too, by light shadowing for a few days a month or two early. I had strong shadowing for the few months leading into my CH proper starting- scared me witless.
Possibly the most dreadful feeling I ever had though, was realising CH had returned after a long break. I didn't realise that was a possible scenario then, and it nearly broke me.
I've been shadowing a fair bit lately but no real attack- (long may that continue), which is about my normal cycle, so hopefully it'll be over in a hurry. Good luck to all.

cheers peter.


Posted in Financial coping strategies during CH cycles on 26 May, 2013 - 3:46 pm

Ha. I just wrote a post somewhere that says more or less exactly what has already been written here (minus the personal bits) I love the willingness of the CH community to share info and support each other without pretence. I don't see that with other groups. Maybe it's because all of us know exactly what everyone else is going through.

I haven't had to worry about financial support up til now, but that's going to be tested soon. No cheap meds or health coverage here either. Some things need a prescription- rare, but increasing- and you must see a doctor EVERY time. no repeat scripts.
My yearly exam for my work visa is nearly $500, and i'm liable for the lot. But disposable income seems to be more abundant here for some reason- nothing empirical to back up that feeling though.

I've been extraordinarily fortunate professionally, as circumstances and luck has meant that CH has had no impact on my casino career whatsoever. I lost very few work hours, and my duties were never hampered in any way by CH. Problems started when the casino closed and i was transferred to the hotel though- very many dead spots of air, in stairwells and such, and an almost instant trigger to me. I made suggestions- all were ignored. I've since resigned, so financial struggles could well be nigh. I'll post any results...
cheers peter.


Posted in is this even working on 26 May, 2013 - 2:21 pm

Sorry for coming in so late. G'day Sonja- very detailed info, great to see. Is that a Jamaica flag flying as your avatar?
Perth seems to be well represented in the CH stakes, worst luck. Mind you, i saw a doctor in York recently for something else, but asked how he would treat my CH. He replied- oxygen, so at least some progress is being made.
Not much help to you, Sonja, but good luck in being pain free. Your treatment philosophy is very much like the one i am slack about maintaining for myself. Less toxins in the body is surely better than heaping more in.
Best wishes to you.
cheers peter.


Posted in One more gene, research funding and Presenteeism on 26 May, 2013 - 1:54 pm

Curse my cynicism, but i can't help wondering the purpose of isolating the defective gene. i wouldn't be surprised if such gene identification ends up impacting a persons medical status and insureability. I will be delighted to find i'm totally wrong, but too many years watching our medical system exploit the " treat the symptoms not the cause. again, and again and again, no known cure because there's no definitive cause, and almost ALL the medications are prescribed "off-label" i.e. they primarily treat a different condition, but have been found to have some benefit for CH.
WE'RE NOT EVEN WORTH OUR OWN MEDICATION !!! It would cost way more to find a CH cure than the miserable numbers of CH sufferers return in revenue, so it's good luck with hunting out a regime that helps without having truly horrific side effects. and without taking you years. Every regime is a "best fit" lucky dip of meds for us, so we have to cross check our medications for suitability and safety while hoping for efficacy. Truly unfair in a condition with such a high desperation factor.
It's tough to stay strong. It's tough to ride out a public attack without feeling shame, especially as we know the usual reaction to a witnessed attack will be "all those histrionics for a headache?" or Toughen up princess.

Well, we ARE a tough lot. The personal challenges we each have to overcome in living with CH must not be under-estimated; and i shouldn't over-estimate expectations of support from our pathetic excuse for a public service either.
CH sufferers are the most supportive of any self help group i've come across, BECAUSE we've had to help ourselves by sharing information and learning from each other- we had to... no-one else knew anything about CH, including your doctor.

It's getting better. Thanks to the web, we're all better informed and better able to be pro-active in managing our CH, rather than just accepting the pro-offered diagnosis and box of pills.
My apologies for the cynicism in my rant. I hope i'm shown to be wrong. But if we keep at it, we'll find a range of treatments that actually work for us, and i'll bet they'll be naturally occuring too. Would the pharmaceutical companies try to restrict the availability of the natural product to force sell their chemical versions? Surely that couldn't happen. Could it?
Thanks for the info Ben, very interesting reading, especially the research budget figures. Actually that was horrifying.
Best wishes to all.
peter.


Posted in 10 Year Anniversary on 26 May, 2013 - 11:46 am

I've said it before- CH sufferers are some tough cookies.
Excellent post Shrek.

I also don't "suffer". In an attack, my concentration is on reaching my little island a la PK in Bryce Courtenay's "The power of one". I'm actively dealing with, not suffering the attack.

I also don't get lonely, despite regularly being alone. For me, loneliness is a state of mind, not of being.
Good luck to you Alex in battling your conditions. State of mind is critical. Don't dwell on lost chances or what might have beens. As with anyone coping with a chronic illness, you need to start putting the CH attack you know is coming down as part of the days activities (sorry, can't think of how else to put it), instead of a blight ruining your days
Just for the record, i went from episodic to chronic and back again after being 4 years chronic.
I rarely comment on treatments (unless of the covering yourself in oil type), but i'm definitely of the less is better school of thought. All of them are just band-aids though. Until we discover the cause of CH, a cure is unlikely.
best wishes to all,
cheers Peter.


Posted in Opioids don't work in CH. on 25 May, 2013 - 1:25 am

Duly noted, Ben. And no, i'm not fishing. i wish nothing more that collectively we beat this thing.

Shanno, not to make you nervous, I went from episodic to chronic, and stayed chronic for 4 years. This was when i had no idea what was going on- a too scary situation for too many people.
i developed my own systems for coping (none that i recommend) - including necking a bottle of vodka within 40 mins- this gets you past the brain response of an alcohol induced CH attack. So far, no neurologist has explained why that should be- OR that on a hangover day i NEVER suffered an attack. Physically, possibly the body just has too much to cope with- but please don't take this as a potential escape. Anything that doesn't manifest itself at the time, WILL come to visit you. I vouch for this.
Anyway, keep strong people. I'm starting to shadow for the dreaded oncoming season; Is there any other condition which does this?
it's just coming up for summer here- today is even 15 degrees. Woo-hoo.
cheers peter.


Posted in Opioids don't work in CH. on 22 May, 2013 - 1:35 am

Ben, I don't believe you took the time to read Alex's post, otherwise you would know he agreed with you re: opiate/ opioid use and CH, i.e. not a good idea and generally ineffective in relieving the immediate pain.
I would go further, however, and say that no-one has the right to question anyone elses regime for coping with CH, whether or not that regimes efficacy is medically proven. "whatever gets you through the night", and all that.
If it all boils down to a sufferer developing an addiction through tolerance because their opioid use has the perceived result of dulling the pain of an attack to tolerable levels, or they kill themselves- which is better, and who gets to judge?
Good posts from both of you.
cheers peter.


Posted in Noises during and post c/h attacks on 21 May, 2013 - 6:58 am

Hmm, intriguing. i get a distinct 'pop" as when your ears pressurise on a plane or when diving. then the attack is over.
When I first started contracting CH, i went and asked to have my ears syringed to clear wax; that's how sound felt to me.
I hope someone is correlating these experiences...
cheers peter.


Posted in The Oprah Effect on 27 Apr, 2013 - 8:02 am

I think you'll find Ben, that most medicines get developed because of their commercial potential. CSIRO used to be independent guys, but not anymore.

I trawl endlessly when researching reported results, and realized how bogus they could be when I came across the oil smearing thing on alternative medicine sites- they were reporting it as fact. Their sites warn to do your own research, so hopefully people did.

There's shades of preying on the vulnerability of the patients too- most of us would do or try anything in the middle of a bout.

You're right about Oprah, Ben; if she supports something it generally takes off. But that's because she's perceived to be genuine.
It boils down to not believing everything you read, and do your own research bearing that in mind.
cheers peter.


Posted in Ambulance cover on 21 Apr, 2013 - 2:25 pm

Call an ambulance for a cluster attack? Never have, and i never will. Well, hopefully. Not for drug interactions either, but I didn't have CH then icon
Thanks for the excellent info Ben; worthy of a link on the left even.

I thought you were going to go into the liability of it all Ben- CH sufferers are really in a void, legally.speaking. You're found to have medication in your system, but it's not approved for CH- you're now drug driving. Insurance won't pay in a smash. You're in court and in serious trouble. Not wishing that on you Buzz, Get healthy first, then worry about what's going to happen about it.

WE need to get recognised. Having a non-recognized condition is ridiculous in this day and age.
cheers peter.


Posted in What works for me on 20 Apr, 2013 - 10:59 am

G'day Benny,,
I remember you going through this- every two years makes it a worthwhile treatment.
Good to see you post, and good luck.
cheers peter.


Posted in Don't Drive.... on 20 Apr, 2013 - 10:55 am

Ouch. Yes, sound advice. i hope they're understanding.
cheers peter.


Posted in Miscarriage; a little word with huge consequences on 20 Apr, 2013 - 10:53 am

My condolences to you for the loss of your child, but if you check you'll find I specifically pointed out the castor oil treatment advocated by one poster was medically unsound and potentially extremely dangerous. Just to clarify; was castor oil involved in your miscarriage in any way?
i do hope you can come to terms with your loss and make a happy life for yourself again.
regards Peter.


Posted in Suffering alone in a Western Australian mining camp on 03 Apr, 2013 - 3:36 pm

Hoppy, I don't know what has caused you to remark that "Ben is in a crabby mood again", but please don't, it has no place in this forum.
Sonja, no disrespect, but Les (if it's the Les on this site), was advocating slathering yourself head to toe with castor oil for 18 hours as a treatment for CH. This is in no way a medically recommended treatment, and in fact is downright dangerous, so beware taking people at face value. There are plenty of crackpot treatments out there- some are ineffective, some harmless, some ludicrous and some really dangerous. It's up to you to sift through them.
Ben can come across as abrupt, but that's been caused by a lifetime of mistreatment and by being a guinea pig for the system. His information is medically sound.
It's important to the forum that everyone has a voice and is allowed to be heard, but the information has to valid and relevent.
cheers peter.


Posted in These therapies stopped C H Dead on 02 Apr, 2013 - 11:04 am

Many, many years ago a poster on this site (can't find it though) went on a very strict diet similar to the one you've described and enjoyed excellent results. Diet I can understand and accept making a significant difference to CH. Massaging urine into my body, or even worse drinking it, I cannot understand. Urine contains the excreta your cells don't need, so how can putting it back into your body help?
Desperate people do do desperate things, but i'll leave that to you and the castor oil set.
cheers peter.


Posted in Norgesic on 04 Feb, 2013 - 10:24 am

Urk, coming back after two years is a bit cruel, although that has happened to a few here. Wishful thinking is a good thing though- if we didn't have hope life would be very nasty indeed.
Do keep in touch with us as to how you get on. Maybe have a read of the info down the left there, there might be something new that works for you too.
cheers peter.


Posted in Norgesic on 04 Feb, 2013 - 9:49 am

G'day Shaun, welcome to the forum, and thanks for the info... but WOW! That's a HELL of a lot of paracetamol you're taking. It wouldn't be much good stopping your attacks only to suffer kidney damage.
You mentioned you'd discussed this with your doctor, were they concerned at all?
Good luck to you regardless,
cheers peter.


Posted in For those on long-term, high-dose Vitamin D supplements for CH. on 03 Feb, 2013 - 7:04 pm

Apathy- I know the feeling.
The heads been fine so far, Ben (touch wood)- no problems on the long haul flights; no worries on the Indian-Pacific where the environment is totally controlled (unless you stand between the carriages). I had a lung problem when I first got to Aus so saw the Doc which he treated no worries. I also asked what he would do for CH- he said Oxygen! This an Indian doctor in the tiny town of York, 100 k's east of Perth, so there's hope for the world yet.
Sorry you're suffering mate. I don't fancy the kidney stone thing, but to date i'm not a stone former, although my twin sister is. Hopefully they'll bypass me (sorry ^_^).
cheers peter.


Posted in For those on long-term, high-dose Vitamin D supplements for CH. on 03 Feb, 2013 - 11:02 am

G'day Ben,
thanks for the info.
Sorry I haven't been posting lately- i'm on holiday with no access to (or real desire to access) the net.
I did think of you the other day when I heard a doctor suggest a Vit D level check for my friends geriatric mum. First time i've ever heard it suggested.
cheers peter.


Posted in Why me.....????? on 10 Jan, 2013 - 12:34 pm

Hi Benjamin, very sorry to hear you're suffering. No, you're not the only one.
Firstly, if you are seriously thinking of harming yourself- get some professional help. We're fellow sufferers, but not trained medical staff. We will support you when we can, but that might not be enough for you.
Secondly- read up on the information on the left there. There are medications that can stop an attack, you don't say if your doctor has prescribed any of the known cluster headache treatments, as opposed to amoxycillin and the like, but something should give you some relief.
Third, stop feeling sorry for yourself- that won't help. Talk to your partner about it, maybe show them the "what's it like" info so they have a better understanding of what you're going through. Be pro-active in your treatment- ultimately you are the one who will benefit.
Good luck, Peter.


Posted in Old anti-inflammatory thread on 08 Dec, 2012 - 11:28 am

Hi Ange,
good to see you're progressing icon
Don't fall for the "tiny tabs" crap. Bust a pill in half if it'll get used.
Were you metaphorically heading over to Batch, or physically? I'm thinking that's serious reseach.
cheers peter.


Posted in JUST HAVING A BITCH on 08 Dec, 2012 - 9:03 am

G'day Kim,
i'll be flying in to Perth Sun night/ Mon morning (02.00) If you're up, i'll have some time for a chat.
cheers peter.


Posted in LITHIUM on 05 Dec, 2012 - 2:55 pm

"Arms stuffed" Ben? You don't say icon good post though.

Kim, I concur with Ben- don't get involved with lithium . i also don't touch steroids any more, but that's just me.
For me, Kim, i don't bother with preventatives, i just carry imigran everywhere to deal with the moment, as it were. Less must surely be more with CH, no?
cheers peter.


Posted in Hello from Gold Coast on 05 Dec, 2012 - 2:45 pm

Hi Ange, welcome to the forum, hopefully we can do you some good.

I don't wear contacts, so can't contribute, but i want to ask- dry eye in general for both eyes during your season, or only for the sore side? I use "sore side" loosely, you understand.
icon
I would have thought mothers group would be an ideal place to have an attack, but then, not being a mother, i'm not privvy to the goings on there. perhaps not so nice.

Kids cooped up? Not if your profile photo is anything to go by.
Go slowly Ange, all questions can't be answered instantly.
cheers peter.


Posted in oxygen availability on 04 Dec, 2012 - 2:02 pm

G'day Mick,
will you have access to a locker, or the like? You'll need to ask around in the location- possibly adapt to survive. Welders oxygen might do, in a pinch- the mask will be the key factor.
Do remember, we're not doctors, so do your own research- your life is the one effected.
And welcome to the forum icon
cheers peter.


Posted in oxygen availability on 03 Dec, 2012 - 10:16 pm

G'day Kim,
i've never used O2- never had the chance, but long flights almost always trigger an attack in me regardless of in-season or not- poor air quality or something. I just go and stand in the hosties bit- the air is always fresher and cooler, which helps.
Carrying a re-breather mask is clever.
i'm flying to Perth next week - I hope I don't need to ask...
cheers peter.


Posted in a little off beat humor on 03 Dec, 2012 - 8:56 pm

Here's some flying type humour- mostly pilot to Air traffic Control. I was learning to fly aeons ago, so maybe I find these funnier than they really are.
cheers peter.
======================================================
Here are some conversations that airline passengers normally will
never hear. The following are accounts of actual exchanges between airline pilots and control towers around the world.
>
> Tower: "Delta 351, you have traffic at 10 o'clock, 6 miles!"
> Delta 351: "Give us another hint! We have digital watches!"
=====================================================
> "TWA 2341, for noise abatement turn right 45 Degrees."
> "Centre, we are at 35,000 feet. How much noise can we make up here?"
> "Sir, have you ever heard the noise a 747 makes when it hits a 727?"
=====================================================
> From an unknown aircraft waiting in a very long take-off queue:
> "I'm f...ing bored!"
> Ground Traffic Control: "Last aircraft transmitting, identify yourself
> immediately!"
> Unknown aircraft: "I said I was f...ing bored, not f...ing stupid!"
=====================================================
> O'Hare Approach Control to a 747: "United 329 heavy, your traffic is a
> Fokker, one o'clock, three miles, Eastbound."
> United 239: "Approach, I've always wanted to say this... I've got the little Fokker in sight."
=====================================================
> A student became lost during a solo cross-country flight. While
> attempting to locate the aircraft on radar, ATC asked, "What was your
> last known position?"
> Student: "When I was number one for take-off."
=====================================================
> A DC-10 had come in a little hot and thus had an exceedingly long roll
> out after touching down.
> San Jose Tower Noted: "American 751, make a hard right turn at the end
> of the runway, if you are able. If you are not able, take the
> Guadalupe exit off Highway 101, make a right at the lights and return
> to the airport."
=====================================================
> There's a story about the military pilot calling for a priority
> landing because his single-engine jet fighter was running "a bit
> piqued." Air Traffic Control told the fighter jock that he was number
> two, behind a B-52 that had one engine shut down.
> "Ah," the fighter pilot remarked, "The dreaded seven-engine approach."
=====================================================
> Taxiing down the Tarmac, a DC-10 abruptly stopped, turned around and
> returned to the gate. After an hour-long wait, it finally took off. A
> concerned passenger asked the flight attendant, "What, exactly, was
> the problem?"
> "The pilot was bothered by a noise he heard in the engine," explained
> the flight attendant. "It took us a while to find a new pilot."
=====================================================
> A Pan Am 727 flight waiting for start clearance in Munich overheard
> the following:
> Lufthansa (in German): "Ground, what is our start clearance time?"
> Ground (in English): "If you want an answer you must speak in English."
> Lufthansa (in English): "I am a German, flying a German airplane, in
> Germany. Why must I speak English?"
> Unknown voice from another plane (in a beautiful British accent):
> "Because you lost the bloody war."
=====================================================
> Tower: "Eastern 702, cleared for take-off, contact Departure on
> frequency 124.7"
> Eastern 702: "Tower, Eastern 702 switching to Departure. By the way,
> after we lifted off we saw some kind of dead animal on the far end of
> the runway."
> Tower: "Continental 635, cleared for take-off behind Eastern 702,
> contact Departure on frequency 124.7. Did you copy that report from
> Eastern 702?"
> Continental 635: "Continental 635, cleared for take-off, roger; and
> yes, we copied Eastern... we've already notified our caterers."
=====================================================
> One day the pilot of a Cherokee 180 was told by the tower to hold
> short of the active runway while a DC-8 landed. The DC-8 landed,
> rolled out, turned around, and taxied back past the Cherokee.
> Some quick-witted comedian in the DC-8 crew got on the radio and said,
"What a cute little plane. Did you make it all by yourself?"
> The Cherokee pilot, not about to let the insult go by, came back with
> a real zinger: "I made it out of DC-8 parts. Another landing like yours and
> I'll have enough parts for another one."
=====================================================
> The German air controllers at Frankfurt Airport are renowned as a
> short-tempered lot. They not only expect one to know one's gate
> parking location, but how to get there without any assistance from
> them. So it was with some amusement that we (a Pan Am 747) listened to
> the following exchange between Frankfurt ground control and a British
> Airways 747, call sign Speedbird 206.
>Speedbird 206: "Frankfurt, Speedbird 206 clear of active runway."
> Ground: "Speedbird 206. Taxi to gate Alpha One-Seven."
> The BA 747 pulled onto the main taxiway and slowed to a stop.
> Ground: "Speedbird, do you not know where you are going?"
> Speedbird 206: "Stand by, Ground, I'm looking up our gate location
> now."
> Ground (with quite arrogant impatience): "Speedbird 206, have you not
> been to Frankfurt before?"
> Speedbird 206 (coolly): "Yes, twice, in 1944, but it was dark, and I
> didn't stop."
=====================================================
> While taxiing at London's Gatwick Airport, the crew of a US Air flight
> departing for Ft. Lauderdale made a wrong turn and came nose to nose
> with a United 727. An irate female ground controller lashed out at
the US Air crew, screaming:
> "US Air 2771, where the hell are you going?! I told you to turn right
onto Charlie taxiway! You turned right on Delta! Stop right there. I know
> it's difficult for you to tell the difference between C and D, but get it right!"
> Continuing her rage to the embarrassed crew, she was now shouting
> hysterically: "God! Now you've screwed everything up! It'll take forever to
> sort this out! You stay right there and don't move till I tell you to!
> You can expect progressive taxi instructions in about half an hour and
> I want you to go exactly where I tell you, when I tell you, and how I tell you!
You got that, US Air 2771?"
> "Yes, ma'am," the humbled crew responded.
> Naturally, the ground control communications frequency fell terribly
silent after the verbal bashing of US Air 2771. Nobody wanted to chance
> engaging the irate ground controller in her current state of mind.
> Tension in every cockpit around Gatwick was running high, until an
> unknown pilot broke the silence and keyed his microphone, asking:
> "Wasn't I married to you once?"

Hee-Hee.


Posted in a little off beat humor on 03 Dec, 2012 - 8:35 pm

Hee-hee. I'm delighted such humour is still around - PC get nicked.
cheers peter.


Posted in oxygen availability on 03 Dec, 2012 - 8:29 pm

G'day Mick,
I'd be surprised if Ben's not correct about personal air tanks on planes- they are effectively small bombs, afer all.
Ring the airline- some are very accommodating in allowing sufferers access to O2- somebody did post about it, but I forget where.
good luck.
Peter.


Posted in Some hope yet after two years on 30 Nov, 2012 - 10:59 am

Hi Scullyuma,
wow, that's a tremendous first post. Welcome to the forum, and thanks for sharing.
There has been some talk about drinking a very cold can of red bull or the like (pepsi recently has been included)- no-one knows why, but the caffeine content may have something to do with it. Just watch the sugar content, especially if it's high fructose corn syrup- possibly bad for CH in its own right.
cheers peter.


Posted in MediFocus Guidebook Cluster Headache on 22 Nov, 2012 - 6:53 am

Hi Ben,
I agree with you- I download ALL of the books and information you link to, precisely because I KNOW it will not always be available - just one advantage of having had a Librarian for a father. Most of it is repetitious (not always a bad thing), but almost all of it is, as you said, overwhelming and/ or so scientific in content as to be virtually unreadable.

So let's write a "cluster headache for dummies" book, although I wouldn't call it that.
Clear, concise and easy to understand, even with an app to link to. OK, there i'm being facetious, but the rest, not.
cheers peter.


Posted in MediFocus Guidebook Cluster Headache on 22 Nov, 2012 - 5:31 am

G'day Ben,
Meh. Far too many generalizations for my liking, but i'm sure it will explain a lot for first time sufferers looking for easy answers.
They've got a cheek copyrighting it though- most of what I read is in the public domain.

Maybe we should get together and write a "Sufferers guide to Cluster Headache". sub-titled "what your doctor doesn't know about CH".

cheers peter.


Posted in Doctor thinks I may have cluster headaches, I'm not so sure on 20 Nov, 2012 - 5:00 am

Double post hidden, James.
When you say 'Consult health care provider- apply directly to forehead", do you mean give them a head-butt? I've certainly felt like doing that sometimes. i am joking of course. icon

Sean, as others have said- your symptoms present more like migraine than CH, but the conditions are not mutually exclusive. N.B. i'm not a doctor either.
If you're not happy with your diagnosis, get another one from a different doctor and/ or neurologist. Incorrect diagnosis is very common.
The same goes for treatment- it might take a lot of experimenting until your doctor finds a course of treatment that works for you. Keeping an accurate diary will also greatly help your doctor during this period.
Good luck to you, and let us know how you're getting on.
cheers peter.


Posted in New Stimulation methods for the Acute Treatment of Cluster Headache on 17 Nov, 2012 - 7:32 am

Rats, I couldn't get the download, temporarily unavailable. i'll try later.
thanks Ben.
Cheers Peter.


Posted in New Stimulation methods for the Acute Treatment of Cluster Headache on 17 Nov, 2012 - 2:31 am

G'day Ben,
very exciting (pun intended), but if the boffins can work out that this helps, how come they can't work out why?
Surely, if they know why something helps it must point to what is causing the problem in the first place. Or am I just naive? Or cynical?
Perhaps there's just too much money in treatment to strive for a cure...
Whatever, I hope you find relief soon. And go easy on your RSI, I should be back in Aus soon, and i'd like to hear you play.
cheers peter.


Posted in Hello from Hong Kong on 15 Nov, 2012 - 7:46 am

Hi All,
thanks for the contact, Kurosaki, maybe Roger can add a "non Aus" page to the practitioners list?

Geez, Ben, i pay nearly $15 per sumatriptan pill here, twice that if it's Zomig. No such thing as concession in Russia- well, not for sumatriptan anyway.
Oxygen at home in Russia, forget it. Not that I want to have to, but using oxygen is something i can look forward to trying when i'm back in Aus.

James, you're probably aware of this, but just in case- you might have to let a doctor diagnose you with CH when you're back in Aus. I know i'm going to have to do it, as I have no medical history of CH in Australia.
If a bout starts for me and the doctors won't help, then as you say, it could become a life-threatening situation for someone...
cheers peter.


Posted in Pepsi on 14 Nov, 2012 - 1:31 pm

Hi Sara,
i can't remember where i read it, but it was a long while ago.
I haven't read the book, but I have seen quite a lot of erroneous information about sugar in all its forms.
I have a degree in catering and hotel management, and part of the course involved food science. So drawing on my memory (from 25 odd years ago) and I stand to be corrected if someone more energenic cares to trawl the net- there are 3 types of sugar and their inverse form, hence 6 types, they being; Sucrose, glucose (dextrose), lactose, galactose, fructose and maltose. (ouch, my brain hurts already) icon.
Now, all of these sugars occur naturally, and if what we eat has no added sugars, then none of those sugars really do much harm.
Where the hurt starts is with the alarming amounts of added sugars in the foods we eat, and especially when those sugars are artificially manufactured, as is the case with High Fructose Corn Syrup or HFCS.
Fructose is fruit sugar i.e. the reason a ripe piece of fruit is deliciously sweet, and will not do any harm if all you are doing is eating that piece of fruit. If that fruit is turned into juice and then sweetened with HFCS, then you are doing your body a dis-service.

Essentially, if you cut out added sugar from your diet (as I have) then you will improve your health, but it's important to differentiate between ADDED sugar, and naturally occuring sugars. Especially- look at that can of pop for the type of sweetener used- in developed countries it is probably HFCS because it's cheap. In lesser developed countries or in countries that grow a lot of sugar, sucrose is probably the sweetener, and in normal doses is not so bad, but high quantities should be avoided.
Just one final anecdotal point- i saw a documentary which mentioned HFCS, and which gave the astonishing info that rats and cockroaches will not TOUCH HFCS. That in itself should be enough of a warning to us.
cheers peter.


Posted in Hello from Hong Kong on 11 Nov, 2012 - 6:42 pm

Hats off to any doc that checks hs textbooks.
I'm also all for dispensing chemists too- they're usually better informed than most.
cheers peter


Posted in IV Lidocaine on 11 Nov, 2012 - 6:26 pm

Relief within a week, Heather?
I had virtually instantaneous relief, and long lasting (five weeks) when i gave up smoking. Other drugs were involved, but the effects were dramatic. Topamax I ditched cold turkey. Apart from some weird dreams, no noticeable badness.
Get a big fat dose of Calvin and Hobbes up ya Heather, it'll make all your ramblings bring you joy.
cheers peter.


Posted in New Study: Your 3D Smartphone Device to Blame for Headaches on 11 Nov, 2012 - 6:05 pm

Heather, i remember my mum dialling the exchange for a trunk call, and asking for York 29 please. then the lady at the end plugged you in, and timed you in 3 mnute intervals. And if you were nice, she'd give you an extra half minute when you were saying goodbye.
A different era, but not so long ago.
cheers peter.


Posted in Hello from Hong Kong on 10 Nov, 2012 - 2:08 pm

G'day James, sorry, coming in late here.
You don't say, Jim, if you had to selfdiagnose when you were in Hong Kong. Or just self administer? I hope you weren't treating your pain instead of the cause.
I'm NOT looking forward to going to a Chemists in Australia and asking for something. Russia, sometimes, is so much simpler,
cheers peter.


Posted in IV Lidocaine on 10 Nov, 2012 - 10:14 am

Hi Heather
wonderful you're feeling better. icon

A medical question please Heather, if you will. Have you been on a drip as well? The reason I ask, is that a due attack didn't happen for me when I was hospitalized and on a drip, and that got me thinking that maybe the direct injection of the water flushed cells more efficiently, or something.
Whatever, i hope you're green directly, and stay so.
cheers peter.


Posted in CH Survey on 10 Nov, 2012 - 9:51 am

No, gnfb, not confrontational; sceptical. Are you, yourself, not overly defensive?
For my part, I don't use a smartphone, so my question was attempting to ascertain the value of utilizing such a device.
Your response confirms for me- no value at all.
cheers peter.


Posted in CH Survey on 09 Nov, 2012 - 8:25 am

Hi There, gnfb.
May I ask please, what possible purpose a CH app would serve?
Also, why don't you include some information about yourself to possibly explain your reasons for wanting to develop such an app?
cheers peter.


Posted in SUMAVEL - Needle-less Imigran on 09 Nov, 2012 - 6:27 am

Ha. Thanks again, Ben. I'm delighted to be of assistance, as this site and it's members have been for me.
I've been extremely fortunate, in that I have been able to work around my CH, and that my friend is my boss, so getting time off would be possible if required. So far i haven't had to ask (touch wood), but what that has meant is there's a layer of stress removed from my life which others have had to cope with in theirs.
Does stress make a difference? I don't know. As a casino manager working in Russia I know all about stress, but it's a different stress to having to cope with CH within the workplace with unsympathetic conditions and bosses. That's somewhere I don't wanna go, but might soon have to.
cheers peter.


Posted in Pepsi on 09 Nov, 2012 - 5:04 am

Hmm- possibly a caffeine connection there somewhere.
I hope they're using the light variety- the regular stuff is choc-full of high fructose corn syrup- itself a possible trigger for CH.
cheers peter.


Posted in LIGHT RELIVE on 09 Nov, 2012 - 5:00 am

G'day Kim,
I did guess she was going to be about 60, but she got a few things wrong, like TV and penicillin- both pre WW2.

Regardless, it's still a thought provoking list.
I'm nudging 50, and one of the biggest differences IMO between my generation and all future generations, is that we know what it is to have absolutely no contact with the outside world, and no way to MAKE contact i.e. to be completely isolated.
I remember on a camping trip, would have been mid eighties- one of the guys pulled out a satellite phone and called a buddy of ours in Singapore. I though, well, that's it. There's no such thing as isolation anymore.
Good to see you're green, Kim.
cheers peter.


Posted in IV Lidocaine on 08 Nov, 2012 - 5:31 am

Hi Heather,
very sorry the botox didn't work for you, but it was a long shot anyway wasn't it?
Fingers crossed for you that the lignocaine does the trick again and your festive season IS festive.
I hope your hospital stay is short and sweet icon
cheers peter.


Posted in SUMAVEL - Needle-less Imigran on 08 Nov, 2012 - 5:24 am

G'day Ben,
thank you for your kind words. 500 posts eh? I really must start using my time more constructively...
I agree with you about previous generations and their sense of humour. They would have had to have had one, or gone mad.
With no internet to turn to for information, they would've been locked into one doctors opinion or diagnosis, which we all know would probably have been wrong. Then factor in that Imigran wasn't available until the early 90's, and you have people doing really hard yards.
The one point in their favour, is that they wouldn't have expected instant answers and cures, as we the IT generation do.
It's a shame that mis-diagnosis was so common, otherwise we could determine if the incidence of CH is on the rise compared to previous generations and therefore look to recent changes in lifestyle and eating patterns as a cause.
Still, we all keep battling on. I'm quite sure a breakthrough will come, and be due to analysis of sufferers records. I hope we're around to enjoy the breakthrough and relief.
cheers peter.


Posted in Cleveland Clinic Names Top 10 Medical Innovations for 2013 on 07 Nov, 2012 - 5:21 am

G'day Ben,
i've just found out the younger brother of my best friend and boss is this guy, whom i've known for 25 years...

Dylan Edwards, PhD
Director, Non-Invasive Brain Stimulation
and Human Motor Control Laboratory
Burke Medical Research Institute
Assistant Professor of Neurology
Weill Cornell Medical College

so i asked him about CH. he said "he's not keen on the headaches himself". I replied that neither am I, but I don't have a lot of choice. Anyway, despite it seeming to be his field of endeavour, no help there, unfortunately.
funny place sometimes, this world.
cheers peter.


Posted in SUMAVEL - Needle-less Imigran on 07 Nov, 2012 - 5:12 am

G'day James, Ben and all,
as i said to you, Ben, i started losing circulation in the middle fingers of my left hand during my last bout, and it was only because of Shell's warnings that I realised what was going on.
They're back to normal now with no harm done, but it could have been way worse. A croupier missing fingers isn't much good to anyone.
cheers peter.

P.S. Did you know in the days before political correctness, the Civilian Maimed and Injured Association used to call themselves The Stumpies and Gimpies Association? Probably had thicker skin back then...


Posted in Cortisone on 03 Nov, 2012 - 1:20 pm

Re-named, Rich, to spare your blushes.
cheers peter.


Posted in Cortisone on 03 Nov, 2012 - 1:18 pm

Hi all,
A quick google would suggest oral cortisone is best avoided- some of the side effects are plain nasty. Not altogether unlike Prednisone, if you think about it, but not quite the same.
good luck to you, Rich. I hope it does the trick.
cheers peter.


Posted in SUMAVEL - Needle-less Imigran on 01 Nov, 2012 - 4:34 am

Interesting Ben.
No splitting one of these into multiple doses though...
cheers peter.


Posted in 3 weeks in a row on 27 Oct, 2012 - 12:56 pm

G"day Gavin welcome to the forum- sorry you had to find us, but maybe we can do you some good.
Just to clarify first though Gavin, when you say Cluster Migraine do you mean Cluster Headache and Migraine? it's possible to suffer from both (God forbid) , but they are separate conditions.
Have you tried Oxygen when an attack starts? That's a high success treatment, which if it stops an attack positively points to Cluster, although Oxygen doesn't work for everyone. Or for Migraine.
Zomig is used to treat both, but if I had to wait an hour to see if the first one worked, i'd be jumping out the window icon
Were you stressing out when you started the riding with your son? That might have had something to do with it. i do hope you didn't stop the riding though.
Check out the info on the left there, plenty of good useful stuff- something to go on with anyway.
Let us know how you get on.
cheers peter.


Posted in Hello from Tamworth on 25 Oct, 2012 - 10:24 am

G'day Noelly - Noel, I presume?
Welcome to the forum. Belmont as in sandgroper? 15 years is a hell of a break- bottle whatever you did to make that happen and sell it icon
But seriously, have a read through the stuff on the left, a lot has changed in the last 15 years, maybe something there can help.
cheers peter.


Posted in Hello from Tamworth on 21 Oct, 2012 - 3:25 am

G'day Countryboy,
you can just ask for Imigran you know. Most doctors have limited knowledge of CH and presume the same applies to everyone else. If something works for you, you should tell them so.
Hopefully you're right though, and your cycle will end soon icon
cheers peter.


Posted in in the green! ....but now what on 18 Oct, 2012 - 9:25 pm

Hi All,
good to hear, Brodie, although 5 days is too short for me to start celebrating.
You should be talking to your doctor, just to keep them in the loop, and to let them know that something is working or going right for you.
Whatever it is, fingers crossed it keeps you green, and Ben's advice is good- read up on everything. Staying green must be worth the effort, No?
And FYI, I have had periods of "green" ranging from days (which is why 5 days would have me cautiously optimistic, but not celebrating), to 18 months- I missed a cycle which was quite the most pleasant surprise of my life, although there was always the lurking dread it was just late. Enjoy it while you can icon
cheers peter.


Posted in Hello from Tamworth on 18 Oct, 2012 - 9:13 pm

G'day countryboy and all,
It sounds as if your doctor is thinking migraines, countryboy.
Regardless, an MRI or CAT scan is fairly routine for everyone, just to definitively eliminate space occupying lesions. Go along with it, if it's not going to cost you much. Working with your doctor will do you more good than going against them - so long as they're not just trying to milk your wallet.
Good luck to you.
cheers peter.


Posted in Unsure, can anyone help? on 18 Oct, 2012 - 9:05 pm

Hi Archgirl, welcome to the forum.
You raise good points. I've found the same thing, although I can't say it's worse than the original CH attack. icon
cheers peter


Posted in Not good news but getting better on 18 Oct, 2012 - 9:01 pm

Good to hear, Barry.
Fingers crossed things keep improving.
cheers peter.


Posted in Equinox on 18 Oct, 2012 - 9:00 pm

G'day Ben,
really sorry to see this. You go red just as I change to green.
i'm surprised you don't exploit a new GP to see if they can't find something else that has been previously overlooked (such as your low Vit D levels). Fresh eyes, and all that? Not very heartening if they completely ignore a history such as yours though.

Best wishes to you for a speedy return to green.
cheers peter.


Posted in Newbie from Sydney - Mum of 7 year old sufferer on 11 Oct, 2012 - 4:20 am

[quote]kyles said:
I honestly don't think they know the answers. It is a bit of trial and error.
Kyles"[/quote

Actually, the specialists don't know the question, let alone the answer. The "why" still hasn't been answered, nor has the "how".
All the meds for CH have been poached from other conditions when they were found to help- Zomig being a possible exception.
Have you tried oxygen yet- one of the safest, fastest abortives, and undoubtedly has the least side effects.
cheers peter.


Posted in Equinox on 11 Oct, 2012 - 4:10 am

No worries Ben, Katherine, and apologies to Brodie.
I mis-read Brodie's post as sharing the information contained in the spreadsheet, rather than the spreadsheet itself.
I also advocate keeping exact information, if only to show your neurologist that you are actively involved in the management of your CH, and therefore expect them to take it seriously too.
cheers peter.


Posted in Cannabis (Marijuana) on 11 Oct, 2012 - 3:58 am

I also have considerable experience with pot. Since contracting CH i have occasionally smoked hashish with no percievable detrimental effects.
When i first started smoking grass back in the 70's, ( cannabis, marijuana, weed, call it what you will), was ALL naturally grown for a measureable THC content of around 3 - 5% (and cost next to nothing). Modern hybrid strains grown hydroponically can get up to around 20% THC. The difference in "high" is remarkable.
The low strength variety - Sativa or Indica, produces an altered perception of time with mild euphoria, lots of giggles, then munchies followed by a sound sleep.
The high strength variety produces an extremely unpleasant "darkening" of the thoughts and a paranoia verging on mania- absolutely no enjoyment to the experience at all.
Add to that; the high strength article is frequently packed with chemicals which a careful grower would ensure are leached before picking, but as it's grown by people looking to turn a profit no such care is taken. It's not known what effect those chemicals have in the long term, but severe respiratory problems are certainly present in the short term.

As you say, Brodie, best to steer clear altogether.
cheers peter.


Posted in Equinox on 08 Oct, 2012 - 11:42 am

But hang on katherine, equinox and solstice are different ^_^. How are you going to quantify each event within the parameters of your own CH? That's intense.

Back away from the computer screen, Brodie. Really. managing CH is you managing your own health, so get used to it. Your intensity and frequency graphs have no relevance to anyone else, but if they help you cope we'll try and help too.
cheers peter
p.s. Is Southport Qid or S.A?


Posted in Newbie from Sydney - Mum of 7 year old sufferer on 08 Oct, 2012 - 11:23 am

"Fentanyl (morphine) and a concoction of drugs for a week . She was discharged on prednisone, topiramate, intranasal immigran, diclofenac, endone."

Wow- i took 40 years to build up to that level of medication. All due respect, Kyles, go the other way. Not more toxins to the body- less. if you don't be tough now, it's a lifetime of misery.
regards peter


Posted in Left or right sided on 08 Oct, 2012 - 11:17 am

CH unilateral, katherine- you're the ambidextrousity in the equation.
I'm a leftie- the thought of a whack from the right literally sat me on my arse. But i'm right handded and left footed so go figure.
I'm strangely confident, Ben, we'll get there. We'll nail a cause and thereby be able to identify a cure. I anticipate resistance.
cheers peter icon


Posted in Does a 70% reduction in frequency make me green? on 08 Oct, 2012 - 10:49 am

It's not a fear, Ben, it's a dread (as i listen to Janis Joplin ). Very specific word.
It's a known quantity - and so much frightening because of it.
And oh yeah, I know that.
But, i'm yet to have an attack on Australian soil yet too. I'm sure that's going to be interesting.
cheers peter.


Posted in Does a 70% reduction in frequency make me green? on 08 Oct, 2012 - 10:05 am

WOW, hella post brodie.
Having a good day- for sure. Remember what you did to make that happen, then repeat..., possibly for the rest of your life.
sometimes taper sometimes POP. You studying something?

Katherine- may I recommend jacking the Vit D to max? As well as eating properly, good food, fresh air- the usual shit. I just got back from Belarus; the difference in quality of air between there and here is asotnishing. The cyst thing-that['s like a zit right?
i'm close to green, Ben- about 20 days, but saying so will jinx that, and that scares me more than anything.
cheers peter.


Posted in Painkillers causing headaches on 25 Sep, 2012 - 5:31 am

G'day Sid the Kid. Welcome to the forum, sorry you had to find us.
Yes, you're not alone.
You can always introduce yourself via the New Members section, but nobody's going to jump down your neck either way.
If you're new to the treatment side of CH, I would suggest you have a good read of the information down the left hand side there- as new things get tried, we find new ways to relieve symptoms, and very often it's not from the medical side of things.
You should do your own research though- not all suggestions are valid, and not all work for everyone.
We're fellow sufferers, not medical professionals- despite the fact some here know more about CH than many of the doctors in the country.
If you want to go med free, there's oxygen treatment, Batch's vitamin D/mg/ca treatment (works well for me) Check Barry T. Coles posts for info on both- also water treatment i.e. drink more water.
if your doctor prescribes you meds, check up on what's been given. Sometimes there's conflicts between meds, or they flat out are inappropriate. It's your body, so do your research.
Apart from that, ask questions, we'll do what we can to help, or just provide support if you need it.
Good luck.
cheers peter.


Posted in Painkillers causing headaches on 22 Sep, 2012 - 5:42 am

Typo fixed, Ben.
When this bout of mine started, I basically took an Imigran anytime I thought an attack was going to start, so I was going WAY over the 300mg daily limit. I take no other meds.
I started to lose circulation in the fingers of my left hand, and then realized I was getting medication overuse headaches as well. The feeling was completely different to a cluster attack- no way to mistake it. From then on I never went over 300mg a day, but more importantly, I realized that a lot of the time, i'd been taking a pill when it was really only a shadow and could be ridden out.
I doubt i could go cold turkey during a cluster bout though...
cheers peter.


Posted in Oxygen Supplier's page on 20 Sep, 2012 - 4:56 am

G'day Roger,
I would be astonished if there wern't emphysema sufferers here- the smoking rate is anywhere from 40- 60%, depending on who did the survey. That said, average life expectancy for males is low 50's, so maybe they all die before emphysema sets in.
I was told by my neuro that home supply of oxygen is forbidden due to the fire risk- picture a Russian male half way through a bottle of vodka, lighting a cigarette while he's sucking on oxygen. He'd go up like a Roman candle, along with everyone else in the apartment block...
cheers peter.


Posted in Oxygen Supplier's page on 19 Sep, 2012 - 1:53 pm

Cheers Roger, don't be sorry about having lots of work!
and a good suggestion from Barry...
Now if anyone can suggest a method whereby I can get my hands on oxygen in Russia, I would be delighted- meds cost me $1500 last month icon.
I might go with Barry's suggestion of welders oxygen but with a medical regulator.
cheers peter.


Posted in Noise triggers? on 19 Sep, 2012 - 12:05 pm

Ugh, Katherine icon. I'm glad that's something I don't have to go through.
I will say though, the few times i've thrown up with CH (usually from over-medicating), the attack has immediately stopped, but I don't know if that's from the meds i'd already taken or if something else happened inside my head.
cheers peter.


Posted in Noise triggers? on 18 Sep, 2012 - 9:31 am

Hi guys,
I don't have any noise triggers. I live in an apartment, so silence is impossible, so I go for "white noise"; specifically water running- no need to worry about wasting water around here- and as i'm usually in the bathroom during an attack, this helps to drown out all other noises and calm me down.
I'm yet to experience the joy of having someone else around when i'm suffering an attack, so that's something to look forward to in the future.


Posted in Unsure, can anyone help? on 14 Sep, 2012 - 7:11 am

Hi Tasha,
very sorry to hear you're in the wars. i don't know if we can help you per se, but we can give you some support and a shoulder to cry on.

First, you should understand that suffering from one type of headache doesn't exclude you suffering from another type (or more), so there could be some other type of headache on top of CH. CH can cause tension type headaches, but they must be treated differently.

There are many different drugs for treating CH, if one doesn't seem to be doing any good, ask your doctor to try you on another one. For example- you take Relpax, which is eletriptan. The triptan group of drugs is commonly used for treating CH, but not all of them work for everybody. Ask your doctor to switch you to Sumatriptan (Imigran), which is the oldest variant, and is available in fast acting pills, nasal sprays and injections. Beware though- You MUST wait at least 24 hours when swapping between one triptan and another.
Ask about oxygen. If you take oxygen at a very high rate, right when an attack starts, it can stop an attack in it's tracks- but this will only work for CH.
If you don't already, start a diary tracking your headaches. When they start, when they stop, what meds you took, intensity and location, other factors such as bushfires in the area, a fuel spill; all that sort of thing. You must be totally honest and accurate though. The more information you can give your doctor, the better decision they can make.

Be VERY careful about using narcotic painkillers. They usually don't do much to help with CH, but addiction is the same for CH sufferers as for anyone else, and you don't need that extra problem on your plate too.
Lastly, read up on as much information as you can- perhaps there's something your doctor has missed; your knowledge might help them help you.

That's it for now- good luck to you Tasha.
cheers peter.


Posted in Imigran is a miracle drug! on 12 Sep, 2012 - 6:00 am

Hi Unique, welcome to the forum, although i'm sorry you had to find us.
Yes, most of us here use Imigran or one of the other triptan family of drugs. I'm a bit of a wuss- I don't take Imigran as a last resort, I take it as soon as I feel an attack coming on. That way the torture of waiting for it to kick in is minimized.
Some sufferers latch on to an oxygen bottle instead of taking Imigran, done early enough and done right can mean no Imigran is needed. Have a read of the O2 treatment link on the left there.

Unfortunately, none of us really know why we get CH; nor do any doctors for that matter. The best we can do is try and stay positive, keep a track of all that happens, and hope we stumble upon a cure or regime that minimizes our suffering.
Good luck with your CT scan.
cheers peter.


Posted in Signing up :-) on 10 Sep, 2012 - 3:14 pm

G'day Robbie,
yep, if you can get through your attacks without using anything, then that's the way to do it for sure. Does the water have to be ice-cold? cos that helps me too.
Ben, i reckon they're just controlling a potential source of LSD. I actually did get relief with cafergotot- i felt a bit dis-jointed though.
cheers peter.


Posted in Smell triggers? on 10 Sep, 2012 - 3:04 pm

Kim, good to hear from you.
That bush must serve a purpose, don't you think? Most of the earth given talents have been exterminated before we've really understood their purpose- this looks like another one that could die unexplained. Let's hope not.
cheers peter.


Posted in Smell triggers? on 10 Sep, 2012 - 2:58 pm

G'day Allan- Skinny Mick. Is there a Fat Mick? Welcome to the forum.
Is that a gremlin in your avatar?
cheers peter.


Posted in Smell triggers? on 08 Sep, 2012 - 1:25 pm

LOL, yes, I had images of Datura in my mind- i'll tell you the story some time of friends of mine that experimented with it and lived to tell the tale- funny, but scary.
Wiki says chewing on the leaves of some variants of your nemesis will give you cyanide poisoning- good reason to have it eliminated from the planet- just don't burn it...
cheers peter.


Posted in Anyone tried Capsaicin nasal spray? on 08 Sep, 2012 - 1:16 pm

Hi BlueDevil,
good point. I've just had a hunt and couldn't find any information relating to quantities of ingredient in the Sinol spray.
Homeopathic doesn't always mean active ingredients are diluted to the the point of invisibility, but just stating the product is homeopathic raises red flags.
Rinar's web-site has a link to the product information insert, which tells you a metered dose contains 4 micro-grams of capsaicin; I could find no such product information at any of the Sinol sites I checked.
Perhaps they're trying to attract that end of the market too?
Unlikely i'll find it here, but if I do, i'll report any results.
cheers peter.


Posted in Smell triggers? on 08 Sep, 2012 - 12:21 pm

G'day Ben,
perfumes don't usually bother me, but sometimes in cycle they can trigger me, but not always.
This tree with white flowers- describe the flowers please. Are they large and pendulous, say 15cm or so, shaped like the bell mouth of a trumpet?
cheers peter.


Posted in Nerve Implant on 08 Sep, 2012 - 12:15 pm

Gawd, Matt. Sounds like a rock and a hard place to me. 10% chance is doctor speak for no chance. Is the surgeon not confident about re-attaching the lead, or about any implant in general working?
I also didn't realise pain management and pain relief were mutually exclusive- I would have thought a pain management program would go together to assist in reducing your use of pain killers, but what would I know?

I would suggest you get the "nothing left to try" type of thought out of your head though Matt. You must keep believing a cure is right around the corner, if only to keep yourself sane.
I'd love to get involved in a CH foundation; not much I can do from here, but good luck with it and i'll help out anyway I can.
cheers peter.


Posted in I am back--and green! on 08 Sep, 2012 - 8:14 am

G'day Heather and Ben,
I'm slowly coming to the realization that CH sufferers are nothing more than guinea pigs when it comes to medications.
All of life is cause and effect, but because there is no defined cause for CH, only effect can be analyzed. Best case scenario for botox only manages 10%, which is little better than hit or miss, but if you happen to be one of the 10%, it's as good as the lottery.
I'm also coming to realize that when I try something, I expect it to work immediately, which is naive of me, to say the least. When I alter some part of my medication, diet or lifestyle, I should give it three months or so before deciding it is a waste of time.
Vitamin D, Ben. I couldn't agree with you more. Especially as I KNOW I was severely lacking in the past.
Further to PBS and Imigran, the U.K. has now approved a 50mg variant for OTC. What bliss! no having to beg for a script, just ask your Chemist. I guess they finally realized no-one would touch the crap if they didn't have to...
cheers peter.


Posted in South Australia on 08 Sep, 2012 - 7:11 am

Hi Chele, welcome to the forum, and thanks for the info. I've added it to the thread about capsaicin spray in "medications".
cheers peter.


Posted in Anyone tried Capsaicin nasal spray? on 08 Sep, 2012 - 7:09 am

Chele just made a post in "members", saying her husband uses Sinol nasal spray. Principal ingredient is CAPSAICIN !!!
So there's another one guys, go to it. I'm going to see if I can find it here...
Thanks Chele.
cheers peter.


Posted in Anyone tried Capsaicin nasal spray? on 08 Sep, 2012 - 7:00 am

They snorted TOMATO JUICE, Les? I'm guessing attacks would stop when you're dead...
cheers peter.


Posted in Low BP and High Pulse on Isoptin - how low/high is too much? on 08 Sep, 2012 - 6:48 am

Hi Katherine,
very sad to hear things have gone sour again. Can you think of anything you've done differently that might account for it? Something you've eaten or been eating- less water perhaps, or a drop in vitamins?
Bear in mind, your good patch might have been because of something you started well before then- change (good or bad) isn't always immediate.
Here's hoping you get back to good times soon.

cheers peter.


Posted in I am back--and green! on 06 Sep, 2012 - 10:06 am

Thanks heather, yes, been red since early June, although it seems to be coming to an end (frantically looking to touch wood). I was thinking at the time how well it fitted with Ben's solstice theory. I previously had remembered bouts starting with change of seasons, but in hindsight did recall a bout starting in June some years back.
I'm not complaining mind, it hasn't been too hectic, although the first week seemed to hit really hard- maybe because it'd been a goodly while without an attack. I ramped up the vitamin D and the vegetables and fruit, and within the month my attacks were bearable, but maybe I was just catching them earlier. There were a few that had me feeling frantic and having to use all my tricks and willpower to hang in there, but not so many.

Did you do anything different that might have triggered your attack? Maybe just air quality? It's so damn frustrating when you feel you're making progress, only to get walloped once more. I can't recall anything which has given me such a feeling of dread as CH has.

Botox is an interesting thing- if it takes months to work, how do they know the cycle hasn't ended by itself? But you're right- having started, it's not logical to stop without completing the treatment. You'd forever be wondering what if...?
Cross fingers it was just a last little twitch and you stay green.
cheers peter.


Posted in I am back--and green! on 06 Sep, 2012 - 5:14 am

Hi Heather,
great news! I'm dubious about botox having anything to do with it- from what i've read it should have had some effect almost immediately- but hey, who's to say?
Whatever- green is green, and long may you remain so icon
cheers peter.


Posted in Low BP and High Pulse on Isoptin - how low/high is too much? on 29 Aug, 2012 - 8:02 am

Hi Katherine,
that sounds suspiciously like your Doctor is pissing in the wind. Keep doing what you've been doing- if you've gone from hundreds down to dozens of attacks, you're doing something right.
With luck, you'll soon be green icon
cheers peter.


Posted in Dihydergot (Dihydroergotamine) on 29 Aug, 2012 - 12:21 am

Thanks Yazzzzy,
just checking- is a migraine anything like a cluster attack?
cheers peter.


Posted in Thank you on 28 Aug, 2012 - 1:20 am

Good onya Jay.
Yep, Ben's possibly the most knowledgeable guy out there- he's done it tough. He's not the only one- Matt (silentplanet), Shell, and her man Corey, done and doing hard yards, but always willing and happy to help. Barry T Cole too; he knows more about o2 therapy than anyone in Aus. His American buddy Batch made a breakthrough and gave it to everybody. Thanks Batch icon.
CH people are special, Jay. Not one in a million, mind, just one in a 100 thousand, but still exceptional.
You're twigged it though- read everything, try what sounds right- it's up to you to help yourself, and maybe help us all too icon
Good luck to you
cheers peter.


Posted in Supporters tips on 27 Aug, 2012 - 3:10 pm

Hi Kurosaki,
welcome to the forum, very sorry you had to find us.
Most of us here know what it is to suffer, but there's surely nothing more heartbreaking than being the mother or spouse of a sufferer.
There's a heap of information on the left there, sift through it to arm yourself with knowledge.
You mention your son tried oxygen- maybe re-visit that to see if the method used was correct. Done incorrectly, it's ineffective, and many doctors are not familiar with the effective method. Seach through Barry T. Cole's posts- he's the full bottle on O2.
Also, may I suggest you start a post yourself, (we don't bite) that way we won't get cross threaded or lose you in the confusion?
Just click on the "start new thread" thingie at the top, not really important which one- supporters, sufferers, newbies, chat- we'll pick you up regardless, and do what we can to help.
cheers peter.


Posted in Not good news but getting better on 27 Aug, 2012 - 2:48 am

Good to hear, Barry, and thanks for posting.
Best Wishes to you.
cheers peter.


Posted in PARC - Treating Headache conditions in South Australia on 26 Aug, 2012 - 3:34 am

G'day Ben,
you're right- "taking one for the team", as it were, shouldn't be baulked at. Matt (Silent Planet) springs to mind here. Onya, Matt.

Your anecdote of the unfortunate lady highlights to me the dangers of a financially motivated medical system; doctors going for the pricey option, rather than best care. Perhaps they should sign an hypocritical oath. Fortunately the Australian medical system hasn't yet gone the way of the U.S. system, but the signs are there. Apologies to the right minded medicos out there, I have no wish to disparage you.
As with you, Ben, I'll only go under the knife when i'm certain everything medically possible has been tried and failed, and that includes ME doing everything I can too, because I know i'm a long way from that having happened yet. Best wishes and,
cheers peter.


Posted in PARC - Treating Headache conditions in South Australia on 25 Aug, 2012 - 5:27 am

G'day Ben,
yes, very interesting, particularly Pr. Rolan's precis of Cluster Headache. Far and away the most accurate description i've ever read.
I'd be delighted to participate in a study on CH, but the thought of deliberately triggering an attack is frankly terrifying icon. Still, no progress without sacrifice, is there?
cheers peter.


Posted in Questions; on 23 Aug, 2012 - 3:55 am

G'day Gunnolf,
sorry to hear you're suffering so much, hopefully we can answer some of your questions in a way that makes some sense to you.
As Matt says, we aren't doctors, so check all information for yourself.

First and foremost; it's entirely possible to have more than one condition at the same time, so when your doctor says you have severe migraine, it doesn't mean you ONLY have migraines.
If you haven't already, you should start a diary listing symptoms, strength of attacks, length of attacks, time of day, what medication you took, when you took it (at first sign of an attack, some time into an attack), did it do anything (helped a bit, no help at all, stopped the attack, made things worse- that sort of thing); what did you eat and drink that day; and any other things which you feel might have had something to do with an attack- very smokey day, fuel spill in the area, whatever. The more information of this sort you have, the better for your doctor to make an informed diagnosis. It's extremely important to be totally accurate, though. Generalizing won't do you any favours here.

As BlueDevil says, there's plenty of things that can help besides meds - oxygen can work wonders if done right, and if it DOES work for you, then it's a pretty sure bet you've got CH too.
Do read up on the information on the left, maybe print out the leaflet which will help explain what's going on to your co-workers, boss, family and friends.

We know what you're going through Gunnolf, and we know it's scary. Ask questions, we'll help if we can.
Above all, if it all starts getting too much for you, get professional help fast- pain management units can help you cope while you're finding a medication regime that works for you.
Good luck to you,
cheers peter.


Posted in The Treatment Roundabout on 20 Aug, 2012 - 6:37 pm

Good, Ben, but would've been better with your guitar instead of the piano. The possum or rat made me laugh, as did the pharmacist with the huge grin.
I concur with the commentor - never give up.
But surely; when responding to "it's all in your head", the verdict can only be justifiable homicide?
cheers peter.


Posted in The battery-powered gadget that can zap the agony of migraine on 20 Aug, 2012 - 3:01 am

Hmm. Well, i'll be keeping my money in my pocket for now.
I'm always dubious when a reason for use starts with "data suggests..." but then i'm an incureable cynic.
Thanks for the info Les.
cheers peter.


Posted in Anyone tried Capsaicin nasal spray? on 19 Aug, 2012 - 11:00 am

EEK! Cop grade pepper spray is in the 3 million scoville range. pass! I accidently got CS gassed once due to wind driftage, when living in South Africa. Very unpleasant.
Suffering that deliberately would take some guts.
Those capsaicin studies sound as if they totally burn out the receptors in your nose, Ben. I wonder if permanent damage occurs?
cheers peter.


Posted in The CH brain on 16 Aug, 2012 - 10:10 am

I must say, Ben, i'm delighted you're back posting. You're a fount of obscure knowledge, providing plenty to be going on with.
Long may it continue icon
cheers peter.


Posted in Anyone tried Capsaicin nasal spray? on 16 Aug, 2012 - 10:03 am

You are absolutely correct re: better management of cold in these parts, Ben. all apartments here have state supplied heating running through a radiator system- hot water is piped throughout the city, under roads, in apartment stairwells, everywhere. Double and triple glazing for all windows, walls a metre thick on the old buildings, stuff like that. It's a nightmare in summer though, as the buildings are designed to trap heat.

Cayenne is not your only source of capsaicin, Ben. it's possible to buy pure capsaicin- it'll probably have a red skull and crossbones on it though, the stuff can stop your heart. From memory the heat unit is called the scoville (something like that), which isn't especially accurate as a scale, but it's all there is. Without getting into some hybrid strains of chili, a really hot habanero chili or scotch bonnet is 300 000 scovilles or so, whereas pure capsaisin is 16 million or so. Do beware.
A better source for making your own, Ben, would be to cut open some really hot chilis, scrape the white rib like bits from the inside that the seeds are attached to (the most potent bit) dry it out, grind and make your spray. From memory (as is all this information- I make no promises it's accurate) capsaicin is oil soluble, so a water based spray would mean all the capsaicin says in the organic material, thereby making it more difficult to effectively land a dose. An oil based spray wouldn't need to be so accurate, due to the spray spread. This is also why drinking a glass of water does nothing to cool your mouth when you've blasted it with chili, but a glass of milk does help.

i'd be a bit careful about all this, Ben. You might find yourself a candidate for those nut-jobs that made a film a while back, doing bizarre things to themselves. What was it called? Careering down hills in wheelie bins, and giving themselves paper cuts to the scrotum, that sort of lunacy. But good luck anyway, i'm morbidly curious to know the result icon
cheers peter.


Posted in The CH brain on 16 Aug, 2012 - 9:24 am

G'day Ben,
indeed interesting. But I was under the impression opposites apply when talking about the brain, i.e left side of brain controls right side of body etc. So should an increase in grey matter on the affected side really be considered as a deficiency on the opposite and therefore controlling side?
Or should I just go and have a lie down? icon
cheers peter.


Posted in Anyone tried Capsaicin nasal spray? on 16 Aug, 2012 - 3:06 am

G'day all,
I've not used capsaicin spray, but i've heard of its use.
Mace is the ground up outer shell of nutmeg, Ben, and a serious irritant. I'm also not about to try snorting anything. As my mum used to say- the only thing you've allowed to put up your nose (or in your ear), is your elbow icon

Les, i've also found getting rit of the snot in my sinus relieves the pain- I just hang upside down to help the drainage - apologies for the eww nature of the mental image. Now I want someone to explain to me why that snot is being generated, and from where.

Hmm, "bone-chillingly cold", Ben? I wonder if we have the same understanding of that- I suspect not icon.
Do let us know about experiment results, people, if only to warn us off if there's an adverse reaction.
cheers peter.


Posted in Not good news but getting better on 11 Aug, 2012 - 3:22 am

Good to hear Barry.
Maybe do the windows as well? icon
cheers peter.


Posted in Does a 70% reduction in frequency make me green? on 09 Aug, 2012 - 7:37 am

hi Katherine,
going from three or more attacks per day to one is almost like not suffering, but i don't tempt fate, so it's either full on, or full off. Mind you, only a CH sufferer could go through an attack a day and consider it not really suffering- anyone else would be in the emergency room screaming the walls down.
But you're 100% correct re; finding an understanding neurologist and a medication regime that works. The difference is fantastic when you feel you're actually getting somewhere with your treatment, as opposed to the despair felt when nothing seems to help.
Great to hear, and fingers crossed for you getting rid of them completely.
cheers peter.


Posted in On the road again on 03 Aug, 2012 - 4:39 am

Wow- i could use a getaway like that, Heather. I hope you have a great time.
Can't you get one of those mini-solar panels for power? You only need 6 volts or so. Then just leech off stray signals...
cheers peter.


Posted in Not good news but getting better on 02 Aug, 2012 - 3:31 am

Hi Barry and all,
very sorry to hear this, Barry, but if anyone can beat this, it's you.
Best Wishes and good luck.
peter.


Posted in Survey of effectivness of online support groups for headache disorder sufferers. on 22 Jul, 2012 - 3:15 am

Hi Heather,
yes, the "using alcohol to cope" was another one of the belly laugh questions.
When this cycle of mine started, I told all of my buddies i'm on the wagon until end of August. "Why so long? they asked- you said with luck the cycle should only last around 6 - 8 weeks."
True, said I, but if I set the date, then i'm controlling it, not it controlling me.
"But how can you go without a drink that long, that easily?" they asked.

Because avoiding a cluster attack is probably the strongest incentive on the planet. icon

As Heather asks, do the survey if you've got the time, folks. The more exposure we get, the more chance we've got of being taken seriously.

cheers peter.


Posted in Survey of effectivness of online support groups for headache disorder sufferers. on 21 Jul, 2012 - 4:47 am

Done, and good for a belly laugh or two, too.

Some of the questions are interesting, in that they don't reflect the rareness of CH and therefore the specific nature of the support we give each other.
Other types of headache have much broader parameters, so IMO it's less likely a sufferer feels someone else knows exactly what they are going through. Here, I know (for e.g) Heather knows ABSOLUTELY what i'm going through, and I also know she goes through exactly the same thing as me, as does Barry, Sara, and everyone else. I doubt other types of headache sufferers can have that empathy - does this make sense?

I had to laugh at one question which asked "Do you try to think about your headaches less by SLEEPING ! " Um, NO icon.

cheers peter.


Posted in calm cluster headaches with KUDZU on 19 Jul, 2012 - 4:33 am

Apparently Kudzu is one of the 50 fundamental chinese medicinal herbs, and although the ailments treated isn't as spectacular as the list above, it's still pretty impressive.

I personally don't have an opinion on the product (not having tried it), and I certainly wouldn't dismiss it out of hand, but as i've said before; it's all well and good to say x product will help with CH, but why the hell can't anyone get down to the nitty gritty and tell us WHAT is causing CH?
If we knew that, then the cause could be tackled, instead of just symptoms treated, because I for one am sick and tired of loading my body up with "medicines", knowing full well i'm going to have to do it again all too soon.
cheers peter.


Posted in Nerve Implant on 15 Jul, 2012 - 3:28 am

Ha. Your pain specialist is disappointed with your implant? You're the one it's not working for.
Really, that just sucks, Matt. He couldn't wait until after your holiday to have told you?
Thanks for the update, and good luck to you.
cheers peter.


Posted in Fitness levels on 14 Jul, 2012 - 10:53 am

Hi guys,
i've thought about this a lot too. I was a heavy smoker, started at age 11, stopped at 22 then started again at 26. I didn't drink until I was early 20's, and not much then. Smoked a bit of pot and stuff, nothing too hectic, which is to say i've tried almost everything, just didn't get involved with it. I played a lot of sport until I was late 20's, rugby union, karate, squash, canoeing, bushwalking- all sorts.
CH started when I was 37, while working in one of the higher stress jobs going i.e. casino manager in Russia. Back then I was a heavy drinker and smoker, no fitness regime at all (how quickly life changes). I'm not convinced stress was a factor though.
I stopped smoking again at 43, and noticed an immediate drop in intensity and length of cluster attacks, and shortly after that went from chronic back to episodic in cycle.
I firmly believe diet plays a major role in CH, and that eating fresh, unprocessed food and "keeping yourself regular" goes a long way to reducing attacks, and/ or lessening the effects of them.
If a build of toxins causes CH (and i'm not suggesting it does, but it's a possibility) then eating right will help reduce those toxins, which even if that's not the cause of CH, can't be a bad thing for your body.
One benefit of physical fitness is increased oxygen carrying capacity in the blood, and as oxygen is a proven aid in the treatment of CH, it stands to reason that better fitness can only help.
I don't get enough sun, and certainly not enough fresh air, and i'm sure both play their part in my CH. No science to back any of this up, just personal observation and intuition. It would be interesting to collate everone's personal observations, maybe there's a common thread somewhere we're not picking up on yet.
cheers peter.


Posted in Roger Roger Roger on 14 Jul, 2012 - 3:31 am

G'day Chris,
I think you're right. There is no question we as humanity need to tread more lightly on the planet, but that's not going to change while we continue to embrace the financial system that exists at the moment.
HOW that system still exists, is beyond me. It proved itself to be non-viable 4 years ago, and should have been consigned to the scrap heap, instead it was revived (with tax-payers money), to be bigger and badder than it was before, which means it's really too big to die.
Given that we were in an ice-age ten thousand years ago, it's not difficult to accept that there is some form of global warming going on; whether or not that global warming is causing climate change is a debatable point. I continue to be astounded by the arrogance of humanity in believing that the scant knowledge we have of previous weather events(400 000 years or so), can in any way be considered empirical evidence of global patterns and /or representative of the previous 13 billion years. Who knows, the past half million years might be just an exception to the norm!
We now have a carbon tax. Big deal. This will change nothing. And don't get me started on the utter farce that is carbon credits.
I don't believe the world has a chance while consumerism is the driving force on the planet, and until the whole world gets on board and says STOP, nothing is going to change.
I just hope i'm not around to see the world implode.
cheers peter.


Posted in Roger Roger Roger on 13 Jul, 2012 - 5:06 am

Wow, Chris. There's a bit of stirrer in you, isn't there?

I also do not like to judge others, but I do wonder how serious people are about the environment when they could cycle or use public transport to get to work, but use their private cars instead.
Similarly, paying lip service to the environment but then getting the latest 3D TV or other such consumer item just because it's the latest is fairly common.
The push towards electric cars is a case in point. I presume most people don't consider how the electricity is produced, because in Australia it's usually from coal fired power plants and no less toxic to the environment than a petrol powered car. Then when you factor in the manufacture of some of the nastier bits of those electric cars- like the batteries, and the fact that they must be replaced every five years or so, and the old ones disposed of somehow, they lose some of their "saving the environment" gloss.
The strangest thing though, in terms of fuel economy and CO2 production, is that, regardless of make, none of the "hybrid" cars come close to the levels set by the eco-diesels in real world tests. Figures of 230+ mpg are not repeatable under real driving conditions, making the whole system suspect anyway.
Me, i ride a motorbike.
cheers peter.


Posted in cluster and migraine on 08 Jul, 2012 - 4:49 am

G'day Deano, welcome to the forum, sorry you had to find us.
Yes, it is possible to have both migraine and cluster headache, and what a crap combination they are.
First off, read up as much information as you can, because most doctors don't know cluster headache, or how to treat it, so you have to be able to guide them. It's possible you have a type of headache that is similar to CH, but not the same.
Some medications are used for both migraine and CH, but might be used differently. Imigran (sumatriptan) is one that is used the same for both- taken as soon as you feel an attack coming on.
A lot of people find breathing pure oxygen at high rates effective at stopping a CH attack, but it must be done correctly, and as soon as an attack starts. Also drinking tons of water, and eating fresh food instead of processed can help.

Some doctors will just prescribe strong pain-killers, despite the evidence that they are mostly ineffective against CH, and can lead to addiction and making things worse.

Whatever meds you are prescribed, Deano, do your own research on them. It's not uncommon for doctors to prescribe a course of treatment that really has benefit to the patient at all, and some of these meds can be nasty.
Keep a record (diary) of your attacks, their length and strength, and what you ate or did that might have caused or influenced them. This will help your doctor, and possibly reveal a pattern to you.

Well, that's it. Do read up on the info down the left. Ask questions, we'll do what we can to help. Bear in mind we're not doctors, but we know what you're going through.
Good luck to you.
cheers Peter.


Posted in Tax time - what medical expenses do you claim on 07 Jul, 2012 - 10:42 am

Wow, is THIS a can of worms...
I don't get to claim, but at a guess, i'd say that you must have bought the product from a chemist to be able to claim it. So even if it was doctor recommended, if it was bought anywhere other than at a chemists, it won't pass.

I see another potential pitfall here, people, but I do hope i'm wrong.
Cluster headache being the affliction it is, very few medications are actually SPECIFICALLY indicated for it's treatment. For example, neither Imigran nor Maxalt is specifically indicated for the treatment of CH, so theoretically the ATO could argue the purchase of those meds is not related to the illness. Talk about adding insult to injury.
Good luck with the claims.
cheers peter.


Posted in on 02 Jul, 2012 - 3:37 am

Yep, the jury's out on this one- no proof one way or the other, which is to say, it's possible.
I've never had a severe head trauma, but I played rugby union as a second row for 19 years for split eyebrows and busted teeth etc, and also had encephalitis as a two year old, so who knows?

Seeing as there is no definitive known cause for CH, it's questionable to rule out anything.

cheers peter.


Posted in Reaching Out on 29 Jun, 2012 - 8:48 am

Hi Matt,
yep, good thing. Try the tax office for information on charities; you'll need something similar to a tax file number, i'm sure.
We'll need to be a registered charity to get any support on the Ride for Awareness anyway. Let me know how I can help, only not for a few weeks- it's flat out mayhem here at the moment.
cheers peter.


Posted in Harry Potter gets CH on 28 Jun, 2012 - 4:18 am

Hi Emma, Heather and all,
I know i'm cynical, but it's my opinion that an informed patient takes much more time during a consultation, and is less inclined to just take a prescription and leave, thereby reducing the doctors number of consultations in a day.
The best doctor I ever had, yonks ago, would hum and hah when told the symptoms, then (if necessary), would say "not sure about this", and reach for one of the many text books on his book shelf to check the information. This showed me he was not just taking a stab in the dark, and was not so egotistical as to pretend he knew everything and might possibly endanger a patients health because of it.
I'm with Heather on this one- ditch the bum and find a neuro that listens to you.
cheers peter.


Posted in New to this and scared on 28 Jun, 2012 - 4:00 am

Hi Lea,
welcome to the forum.
I'm not familiar with Maxalt (you mention you use it in another post), but one of the known side effects is "sudden numbness or weakness, especially on one side of the body". Perhaps that was the reason?
Also (and I don't mean to be getting on your case here), you mention you use Imigran injections, as well as Maxalt. I do hope that's not on the same day- that is a potentially very dangerous thing to do, although your doctor should have pointed that out.
Always check for yourself what meds you're prescribed, different doctors use different methods for treating the same thing, sometimes there can be an unintentional conflict.
Sorry, lecture over. icon Good luck to you.
cheers peter.


Posted in Harry Potter gets CH on 21 Jun, 2012 - 3:10 am

Although I wouldn't wish CH on even my ex-wife, this is indeed great news. Hopefully he will get chased for more info about it.
Anyone know if he rides a pushbike? Let's invite him on the ride for awareness icon.

cheers peter.


Posted in ultimate irony on 18 Jun, 2012 - 10:37 am

Hi All,
as some of you know, I've been in the hospitality/ casino/ hotel business for 25 odd years, and part of my routine is to check rooms before and after guests making sure things are alright.
There's always things being "souvenired" from rooms, but the item that is most nicked from rooms is... the Bible.
Surely the ultimate irony?

cheers peter.


Posted in shadows on 16 Jun, 2012 - 7:01 am

Hi Emma,
although not so easy to do, staying positive is a major factor in coping with CH. It helps keep you focused on helping yourself. If you stay positive, it gives you the strength to maintain an accurate CH diary, which in turn might point the way to something that helps your CH, whether it be through nutrition, or isolating a trigger, or whatever.

There's lots of info down the left there, as well as links to further reading. Study up, the more you know, the better you can make informed decisions for yourself.
cheers peter.


Posted in bottled oxygen vs oxygen machine. on 16 Jun, 2012 - 6:46 am

hi Emma,
welcome to the forum. You haven't had much of a response from what i've seen.

I personally have no experience with oxygen, but i'm familiar with the fundamentals. To be effective, o2 has to be delivered at a much higher rate than that used for other medical conditions- anything up to 25 lpm. An oxygen machine (from the quick google I just did), is only good for around 10 lpm, not usually considered effective for CH, although YMMV.
I hope this helps.

cheers peter.


Posted in The Watson approach - Zero validity in treating Cluster headache. on 10 Jun, 2012 - 3:39 am

..."This suggest a 'primary headache' mechanism may lie dormant in infrequent headache sufferers"... page 5.
I'm in awe. Got a head? You have the potential for a headache.

One point though, Ktulu2; as you're advocating transparency, shouldn't you disclose the name of the specialist?
cheers peter.


Posted in Vote for my business? on 08 Jun, 2012 - 3:03 am

G'day all,
I wouldn't care what I was voting for; if it helps you, Roger, you got my vote.
Without you and this site, i'd probably be dead.

As I understand it, we can vote for you every day, not just once, right? What's the cut off date for this?
cheers peter.


Posted in Botox--here I go! By Dusker on 26 May, 2012 - 2:59 am

Hi Heather,
OUCH! $1500 is a huge jab, I do hope it works for you.
On a lighter note, that's a very hip looking avatar- is that your daughter with Missy? icon

cheers peter.


Posted in young family on 25 May, 2012 - 3:47 am

G'day Paddy, sorry to hear you're suffering.
It's perfectly understandable you avoiding contact and not wanting anyone to see you in that state, but it's not a solution.
I presume your partner is aware of your CH and why you might go missing sometimes? Trying to go it alone won't help either of you.
Please, find a supportive doctor and get some medical relief- abortives like Imigran or oxygen can reduce your suffering tremendously, and long term preventatives will hopefully give you back some quality of life.
Best wishes to you and your family,
Peter.


Posted in preventative meds on 25 May, 2012 - 3:33 am

icon, that's an understatement, Chris, but i'm very glad it works for you. In hindsight, if my neuro had told me i'd swell up like a balloon and stack on weight if I so much as looked at a stalk of celery, I probably wouldn't have such an aversion to prednisone (or dexamethasone in my case). But as he didn't, and I was on really high doses for 2 months, and it took me two years to almost get back to my normal size, it would take something extraordinary to make me try it again.
Chris, I'm not surprised having the 'big guns" in reserve is comforting for you, and certainly not oddly comforting. Knowing you have a back up plan is a dream. Your fitness and cycling possibly limits the side effects too, and more power to you because of it.

cheers peter.


Posted in oxygen therapy - purchasing on 25 May, 2012 - 2:59 am

G'day Daniel and all,
Also worth considering, is that by paying rental you don't get stuck with an out of date bottle you then own and can do nothing with.

cheers peter.


Posted in Nerve Implant on 21 May, 2012 - 2:53 am

G'day Matt,
should we be thinking that no news is good news? I'm hoping that you're away up north and everything is OK.
cheers peter.


Posted in Propranolol on 19 May, 2012 - 3:36 am

Lauren, Absolutely do not stop taking propranolol without your doctors knowledge- this one can trigger a heart attack if you stop abruptly.
I've used this one, but it was many years ago, and it didn't agree with me at all, although it could have been an interaction with another med.
I personally am of the opinion that relying on meds is fine for treating the symptoms, but that it doesn't treat the underlying cause, (which i'm certain is due to a physical imbalance somewhere in the system), so I will continue to try and redress the imbalance and hope something will click one day and the meds can get launched out the window.
cheers peter.


Posted in Cluster headache and other trigemino-autonomic cephalgias. on 19 May, 2012 - 3:19 am

Hi Kim,
fire off a P.M. to Barry T Coles- he's a sandgroper and a private citizen, yet oxygen is the main weapon in his arsenal against CH. He might be able to help explain the ins and outs of scoring an O2 intro, something I have absolutely no experience with.
I am fairly certain that a neuro has no more prescribing power than an ordinary GP, so if a neuro can prescribe it, so can a GP. I stand to be corrected, should anyone have more knowledge on the matter.
Pete, arm yourself with as much information as you can, so that YOU can do the suggesting to the neuro. Hoping they do leaves you open to an unsatisfactory conclusion, especially if you then have to wait a few months for another appointment.
cheers peter.


Posted in preventative meds on 18 May, 2012 - 3:43 am

Hi Ladies,
good topic, this one. I personally do the same as Heidi, in that I cut right back on the only regular med I take (topamax) when not in cycle, then ramp up when in cycle.
For meds like verapamil, you should ask your doctor about a lower dose when not in cycle, but certainly don't just stop without the knowledge of your doctor.

Katherine, i've not heard of verapamil being used to break a chronic sufferer; has your neuro been successful in the past with this treatment? My neuro put me on very high doses of Dexamethasone (similar to Prednisone, a corticosteroid), which has disgusting side effects but seems to be a front line treatment in such cases.
I should add, that in my case it didn't break my cycle, but it certainly altered it. I also put on 18kg in two weeks, but that is apparently a known side effect- my neuro just neglected to mention it to me.
So, Donna, ask your doctor about lowering your dose, but don't stop without permission, you could make things worse. Fingers crossed for you going green too.
cheers peter.


Posted in Hello to all on 14 May, 2012 - 5:28 am

G'day Paul,
Swan View, eh? Nice part of the world. I grew up in Darlington, just up the hill from you.
On the diet side of things- try and cut out anything processed, and eat as much fresh and/ or raw food as possible. Also try and drink a glass of water every time you walk past the water cooler or tap (but remember to keep up your vitamins and minerals ), this seems to help reduce intensity and duration of attacks in a lot of people, although why is a different story.
Good luck to you, and let us know how you get on.

cheers peter.


Posted in Mother's Day on 14 May, 2012 - 4:45 am

Hi Heather,
thank you for this, I didn't realize it was Mother's Day in Aus, so will fire off an e-mail immediately. Here we celebrate 8th March (Ladies day).
I remember when your Mother passed away, Heather, in what must have been a truly horrible patch for you. It's small consolation, but the belief she's in a better place and/ or not suffering can help ease the longing. No reason not to celebrate the time you did have together, either. Special people stay special forever, don't they.

cheers peter.


Posted in Imigran on 10 May, 2012 - 3:09 am

Hi All,
+1 on the 50mg tablets, no point using a sledgehammer to crack a walnut, and you're good for up to 6 attacks a day (God forbid). I also find if I take the tablet at the first sign of an attack, the attack will be aborted in about 20 mins. If I miss the first sign of an attack and it's already ramping up before I realize, then it will take up to an hour to be effective.

I'm not a big fan of the sprays- how you use it plays too great a part in it's effectiveness. I find I end up swallowing most of the dose due to my ineptitude (extraordinarily foul taste too), and there's no generic version here so the price is ridiculous.

I've not used Maxalt, Sara, but just as a reminder- Maxalt is Rizatriptan, and as a triptan should not be taken within 24 hours of another triptan (sumatriptan, zolmitriptan et al.).

cheers peter.


Posted in Medication Overuse Headaches on 07 May, 2012 - 3:48 am

Hi Nell. welcome to the forum, good to see another sandgroper here, but sorry you had to find us.

Yes, MOH is possible from sumatriptan- well, all of the triptans really, but less common for CH sufferers than migraine sufferers for some reason.
What makes the neurologist think it's rebound headaches? Are they different from your partner's usual CH attacks? If they are not a different type of headache, then they're not MOH.
Endep (amitriptyline) is fairly commonly prescribed for CH, but it won't stop an attack. My neuro said it was really more to help sleep than anything else. What sort of levels must L ramp up to? No level of Endep will prevent or stop an attack, but high levels can turn you into a different person, and cause their own problems when reducing dosage later on.

Does your partner use Imigran injections or tablets? The reason I ask, is that if Sumatriptan has stopped working, then maybe a switch to one of the other triptans will help.
i can't get injections here in Russia, so only tablets, but for me, when a cycle starts, if I find Sumatriptan doesn't stop an attack, then I know I need to swap to Zolmitriptan for that cycle. One or the other has always worked, although it's VITAL you put a clear 24 hours in when swapping from one to the other.
We've had members that have benefited from nerve block injections, but I have no experience with them.
I presume after so long with CH your partner has tried oxygen and all the rest?

Anyway, bottom line is that if you're not happy with the neuro's diagnosis, walk away.
Do read up on the info down the left there, maybe something new or that you haven't tried will jump out.
Good luck, and let us know how you're getting on.
cheers peter.


Posted in Aspirin for shadows on 06 May, 2012 - 10:52 am

Hi guys,
on the subject of meds, some members have found 900mg Aspro clear works great if taken early in the attack (better than other variants of Aspirin) , others use Neurofen Zavance for the same reason.
Please, may I caution you to WRITE DOWN, what you're taking and the times you take it, because although most of us could and would do anything to stop the pain, it's easy to forget just how much you have taken, and it's really easy to do damage somewhere else in your system by accident.
Verapamil is a calcium channel blocker too, which is why it helps in CH. If your doctor prescribes you higher doses of Verapamil, they should also be doing ECG's and kidney and liver function tests too.
Take care of yourselves, please.
cheers peter.


Posted in New to forum long time CH alien on 06 May, 2012 - 10:30 am

Sara,
geez what rotten luck!
Can you think of anything that's changed that might have brought it on? I hope it's just a blip, and you're back to green soon.
cheers peter.

Lauren, good to see you back on the board icon,
Green and seen, just perfect.
cheers peter.


Posted in New to forum long time CH alien on 06 May, 2012 - 10:25 am

Hi zRoyz. Roy, maybe?
I get triggered on long flights, i've always put it down to less oxygen in the cabin, but you may be right with cabin pressure. Hunt through Barry T Cole's posts for information about oxygen. All the hints and tips are there if you sift long enough. He has big bottles at home and tiny ones that go everywhere with him, well worth a look.
In the same place there will be info from a guy named Batch, many have found relief with his regime of Vitamin D and Mg- not scientifically accredited but who cares if it works. And for the record, I understand said accreditation is being worked on.
Good luck with the cafergot, do let us know how you get on.

cheers Peter.


Posted in A Cure for Cluster headaches!!! on 06 May, 2012 - 10:10 am

Hi all, and welcome to the forum, Peter Parker. (isn't that spiderman?) .

BlueDevil, sorry, missed your post from Feb. Yes, I too am aware heaps of meds have their roots in nature; what bugs me is the pharmaceutical companies make sure the naturally occurring substance becomes unavailable, usually by getting it placed on the banned or restricted list, so that natural supply becomes blackmarket supply at hyperinflated prices and questionable content, and secondly they isolate the component that seems to do the trick without spending too much effort on WHY it does the trick which might track back to what is actually causing the problem in the first place.
The drug companies (although not only) also tend to "steal" the information about natural remedies from the traditional owners, then patent it, thus denying the traditional owners their due intellectual rights- quinine being one that springs to mind.


I fully appreciate the drug companies not wanting to kill the golden goose by actually curing people instead of keeping them coming back to the dispensary window; it just irks me that those not wishing to take pharmaceuticals are not permitted to use the naturally occurring product if they want to.
I've not tried shrooms in relation to CH, but I would like to legally be able to, should I so choose.
cheers peter.


Posted in Nerve Implant on 05 May, 2012 - 3:09 am

Well, I hope you stay feeling good and no infection; maybe the stick was the problem? Having to cancel your trip away would be the pits.
Best wishes to you all,
cheers peter.


Posted in Nerve Implant on 04 May, 2012 - 2:57 am

Aw rats, Matt, sorry to hear that, I was hoping they'd got it right this time. Is it your body rejecting the implant, do they know?

Heather, also sorry to hear this. Good luck with the shoulder op though.
cheers peter.


Posted in Lump on the back of head? on 03 May, 2012 - 8:33 am

Hi Lauren,
unfortunately the titles have fallen off a lot of threads on this forum for some reason, so cross-referrencing is not so easy, but years back we had a thread about healthy living and it's effect on CH.
For many people, me included, dropping proccessed foods from the diet, and particularly anything that might contain nitrates (food preservative), and eating as much fresh / raw food as possible, combined with a high intake of pure water, has meant a major improvement to length, strength and frequency of attacks, as well as to length of cycle. This has meant cutting out McD's and the like, but that's not been such a hardship.

Some years ago I met an old bloke in South Africa when I was holidaying there, who suffered a ruptured bowel (sorry for the graphic nature (ahem)) and had to have colonic irrigation treatment to clean him out (urg). Well, according to him, and I have no reason to dis -believe him, he's never had an attack since. So perhaps colonic irrigation could help, I don't know. I would think a raw/ fresh diet should go some way to achieving the same end result icon
Do ask about Imigran (sumatriptan). it's available as fast acting tablets, nasal spray and injections, and is the oldest of the triptan drugs and possibly the widest used. There's also Zomig (zolmitriptan) and a couple of others, but i'm not familiar with them.
Anyway, that should give you something to go on with.
cheers peter.


Posted in Into another cluster period on 03 May, 2012 - 5:39 am

Hi Anie,
unfortunately, doctors are quite often in the dark about what to do for CH sufferers, so you end up being a guinea pig while they raid the meds cabinet to see if anything works.
For your own sake, read through the list of treatments on the left there. From your post, it sounds as if you've not tried Imigran or any of the other triptan type drugs - these can stop an attack in it's tracks, although they are not pain-killers as such.

I think what Matt and Sara are trying to say, and I agree with; your system of treatment is not really treating the CH, only the pain. it's also potentially damaging to you. Treating the pain is important, of course, but the right preventatives could mean there's less pain to deal with.
You need to find a doctor you can work with, that listens to you and understands CH. Not always easy, I know, but if you can find one you've got a much better chance of working out an effective treatment package. Good luck to you.

cheers peter.


Posted in Lump on the back of head? on 03 May, 2012 - 5:09 am

Hi Lauren, sorry to hear you're suffering again.
Re: propranolol. I was prescribed it long ago, and from memory dropped it fairly quickly. You might find, as I did, weight gain and tiredness are also side effects of propranolol ( as they are for a lot of meds for CH), so it might not do much good, but it's only you that can find that out.
With regards to lymph nodes and CH, I would caution you strongly about attempting the treatment described by Leslie. It worked for him, but in all the material I could find on castor oil poultices, slathering yourself all over with it for 18 hours is NOT mentioned (unless it's actually his posts), and in fact extended contact with the skin is specifically proscribed as potentially highly dangerous. Castor oil poultice is also not mentioned in connection with CH unless it's by Leslie, although the magic of the internet now links castor oil to the treatment of CH because of those posts. Proceed as you wish, but do so with caution, and do your research first.
Best wishes, Peter.


Posted in I am off again--AGAIN--and now I am back-- on 29 Apr, 2012 - 4:21 am

Hi Heather,
best wishes to you for successful procedures - with luck the botox will stop your attacks and leave you looking like 27 icon. (I was going to say with skin like a teenager, but that could be red and spotty too, so better not to go there).
Hurry on back, Heather, when you're up to it. You're the number 1 empathetic greeter around here, although Sara is doing a wonderful job too, Thanks Sara.
Fingers crossed for a green outcome icon
cheers peter


Posted in Nerve Implant on 27 Apr, 2012 - 3:23 am

G'day Matt,
regardless of anything else, no infection so far is way better than last time. I hope it stays that way, AND does the trick too. Best wishes to you and family.
cheers peter.


Posted in Cutting Edge Treatments For Migraines on 21 Apr, 2012 - 10:19 am

I'll think about it if I can work out what you're saying, Les. Your posts are a little hard to follow sometimes.
cheers peter.


Posted in Results from the United States Cluster Headache Survey on 13 Apr, 2012 - 3:46 am

Hi All,
I don't wish to poo-poo the survey at all (or the good doctors testimony), but despite the impressive title proclaiming itself the largest one ever undertaken, there were still only 1134 respondents of which 318 were female.
Of those 318 females, exactly half (50%) said pregnancy improved their condition, and 50% said they did NOT improve.
We have one new nember here who stated she had her first ever attack while pregnant; some others improved, some did not.

The best conclusion then, is that sure, ask your doctor, but there's no statistical evidence supporting hormone imbalance as a cause for CH.
I would also suggest that a total of 1134 respondents is too few a number to extrapolate any significant findings; add a couple of zeros and you'd be getting somewhere.
Find the cause of CH (if there is only one), then a cure might follow, everything else is just band-aids.
cheers peter.


Posted in on 09 Apr, 2012 - 3:10 am

Hi Shell, sorry, I missed this post. PM sent.


Posted in Just diagnosed with Cluster headaches on 08 Apr, 2012 - 3:14 am

G'day Annette,
for your own sake (and your doctor), you need to write down a full and complete description of your attacks/ episodes, as some of what you're saying doesn't fall into the "usual" symptoms for CH.
For example, most of us have an almost instant attack from drinking anything alcoholic, in fact it's one of the ways we know a cycle has started, although i'm sure there are exceptions to the rule.
Anyway, do keep a diary, and do keep your fingers crossed you don't have CH. Then you just have to work out what is the matter. Get a referral to a neurologist- they should order an MRI scan just to rule out some other cause.
Good luck to you.
cheers peter.

Oh and Happy Birthday icon


Posted in 30th Anniversary of CH and Still going Strong! NOT HAPPY JAN! on 07 Apr, 2012 - 3:39 am

G'day Pete,
Yeah, 30 years sounds like long enough icon
I use Imigran tablets, no injections available here in Russia, and they work pretty well. I also hang upside down which seems to help, but i'm blowed if I know why.

The Mg, Ca and D3 thing Sara referred to is courtesy of a US sufferer; many people have had good results from it. Search through Barry T Coles posts for top advice on Oxygen therapy too.

Good luck,
peter.


Posted in Just diagnosed with Cluster headaches on 07 Apr, 2012 - 3:26 am

Hi Annette,
welcome to the forum, sorry you had to find us. You need to be aware that Cluster Headache is very rare, so most doctors don't know about it. it's also easily confused with other types of headache, some of which are cureable (CH is not).
Down the left hand side there is all sorts of information about symptoms, treatments (natural and chemical), what you can do to lessen the severity of attacks etc.

When you say "the pain would not go away for two weeks", do you mean the pain was absolutely constant, or that you had repeated attacks throughout the two weeks?
For your sake, and to assist your doctor, keep a record of your attacks, the intensity, length, what you've eaten or drunk that day, any medications you've taken- stuff like that. The more information you can give to your GP the better. Perhaps ask for a referral to a neurologist- preferably as soon as possible.
If you DO have CH, there are medications that can stop an attack in it's tracks. The oldest and most widely used is Imigran (Sumatriptan), followed by Zolmitriptan and others (all from the Triptan family)
For many people, breathing high rates of pure oxygen also will stop an attack in it's tracks. The technique must be done correctly, but if it works for you, your body will thank you for avoiding using the usual drugs, which can knock you around a bit. As Matt ( Silent Planet) said, Barry T Coles is the guru, search his posts for top advice.
OK, that should keep you going for a while. As Kim said, most of us are NOT doctors, just fellow sufferers. Always do your own research, and that includes on what your doctor tells you and prescribes you - they don't always get it right.

Feel free to ask questions, we'll do what we can to help.

cheers peter.


Posted in Cutting Edge Treatments For Migraines on 07 Apr, 2012 - 2:53 am

As usual, here we go treating the symptoms again. I'll be much happier when a definitive reason and/ or cause for CH is discovered, if indeed, we all have the same cause. Then the boffins can set about finding a CURE, instead of lining the pockets of the drug companies with their treatments. Pardon me, rant over.
Nice find Les.

cheers peter.


Posted in Ride for Awareness on 02 Apr, 2012 - 3:13 am

There you go Chris icon.
I don't know why the headings keep dropping off, it sure makes it difficult when trying to cross reference a subject.
I'm also guilty of not being around very often- we're just starting the silly season here, so it's all hands to the pump for the next few months.
I'll give my casino mates another shout, they were busy last time I asked.
cheers peter.


Posted in Second Opinion on 01 Apr, 2012 - 4:29 am

Hi Katherine,
well done, some progress at last.
Have a hunt back through for Barry T. Coles' posts- he explains oxygen useage in excellent detail, something even doctors sometimes get wrong. Oxygen therapy has to be done correctly or it's less to non effective. Good luck and
cheers peter.


Posted in So excited! on 01 Apr, 2012 - 4:18 am

Hi WhitsundayGirl, and welcome to the forum.
It's very good to see you're not suffering at the moment, long may that continue for you. I would caution you against assuming you have CH, there are other types of headache which can mimic CH closely. The reason I say this, is that depending on the condition, it might be cureable. Not , unfortunately, the case with CH, but we live in hope icon

i can't help you with restless leg syndrome, as i'm not a sufferer, perhaps others can? Do read up on the info on the left there- there's all sorts of useful stuff. Hopefully something will be of help.
Any questions or you just need to vent, we'll do what we can to help.
best wishes,
peter.


Posted in just for the sake of talking on 31 Mar, 2012 - 2:55 am

Hi Sarah,
thanks for the update, and best wishes and good luck to the both of you.

cheers peter.


Posted in Nerve Implant on 19 Mar, 2012 - 3:41 am

G'day Matt,
here's wishing you a winner this time. Just for curiosity- any tea tree oil in the body wash? Sorry if that's too personal.

cheers peter


Posted in still here... on 19 Mar, 2012 - 3:33 am

Hi Lauren,
Love and Peace to you icon. Yes, it's a horrible feeling, waiting for something dreadful you know is inevitable. I started shadowing this week- i'm not sure if it's because it's due (which it is), or because i've been extremely foolish lately and abusing my body with excessive alcohol, crap (delicious) food like pepperoni pizza with blue cheese and bacon, lots of chips and dips- stuff I usually never touch. Whatever, i'll take it as a warning and pull my head in and hope it doesn't go full blown.

The good guys have said it all, Lauren. Keep in touch, you might be able to help someone else on the site. And if you don't keep coming back, how are you going to know when we've discovered a cure? icon

Look after yourself eh? You never know, you might miss an expected bout- It does happen.
cheers peter


Posted in Back to Red on 27 Feb, 2012 - 2:50 am

Aw rats, Sara., sorry to hear this. Here's hoping they don't hang around long.
It is coming up to the season though, for those that are the seasonal type. No, wait, i'm usually March / April for the Spring bout.
I don't know any more- we didn't adjust clocks this year in Russia so i've woken to daylight almost every day and completely missed my Autumn bout. Coincidence? I have no idea, but i'm not complaining.
Best wishes to you Sara.
cheers peter.


Posted in Nerve Implant on 20 Feb, 2012 - 3:39 am

Geez Matt, you're a real trooper. I hope it all goes well for you.
cheers peter.


Posted in Botox can help! on 20 Feb, 2012 - 3:36 am

Hi Felicia, welcome to the forum.
I see from your profile you're "currently suffering"; has the botox worn off, or what's happening there?
Does the botox actually stop your attacks, or just lessens them? Inquiring minds want to know icon
Some members here have tried botox, with varying results, so your input will be very useful.
cheers peter.


Posted in Ultimate Price on 20 Feb, 2012 - 3:28 am

Hi Matt, very sorry to hear this.
As Kim said, it's hard to know what to say at such times, except I hope it all comes right for you and your wife.
Best wishes,
Peter.


Posted in Ergotamine on 07 Feb, 2012 - 6:23 am

G'day Matt, yep, that's what I was looking for. I know Methysergide can cause major arterial problems.
Rich, do you ever get the feeling your hands and feet aren't quite attached? Not a biggie, it's just the main thing I remember of Methysergide. Actually made me think of my student days...
Good luck Rich, keep us informed eh?
cheers peter.


Posted in Another new member on 07 Feb, 2012 - 6:08 am

G'day Rob, glad you found us, sorry you had to. 24 years is a decent stretch, hopefully coming to an end soon.
Re: oxygen. How about trying it from the other end i.e ask the oxygen people what paperwork they need to deliver to you. It might be easier than you've been led to believe. (Apologies if you're been there already.)
Definitely see a neurologist, and present information for them to work with. Time of attack, strength, length, meds taken and effect, that sort of thing. Same for your GP.
Mind you, if your regular GP only sees you as repeat prescription gold, then Yes, find another doctor.
Any questions, please ask away. We'll do what we can to help.

cheers peter.


Posted in Ergotamine on 06 Feb, 2012 - 3:02 am

G'day Rich,
wow, that's good to hear. A couple of questions, just for clarity- what's the name & strength of the tablets, and do they contain caffeine as well (like cafergot that used to be available)
Do you need to taper off after the attacks have subsided? And are there any side effects you've been told to look out for?

cheers peter.


Posted in Imigran overdose? on 05 Feb, 2012 - 10:47 am

Hi Al,
you'll find out very fast that most doctors simply aren't aware of CH, which is really not surprising as it's extremely rare. Hence the need to read up as much as possible. You never know; upon diagnosis it could turn out to be something else. There's one type of headache, similar to CH but only found in females that is completely cureable. Try an get an appointment with a neurologist (easier said than done I know); they will generally order MRI scans to rule out anything else causing the attacks.
Re: Imigran; maybe try the pills at 50mg. That way If your partner finds she's having more than 3 attacks in a day (not uncommon), she still will be within the accepted limits. Personally, I find the 50mg works fine, but that's for you to find out.
Other things you can try: avoid processed foods, especially those containing nitrates (salami, sausages, deli meats in general) avoid fast food, drink LOTS of water, but do maintain vitamins and minerals.

It's a lot to take in, but remaining positive is also really important, for both of you.
Good luck,
Peter.


Posted in Imigran overdose? on 05 Feb, 2012 - 4:36 am

G'day Al,
very sorry to hear your partner is suffering, we'll do what we can to help.

First, are you sure it's Imigran (sumatriptan) she's taking? It was my understanding the tablets only came in 50 and 100mg form. Or is there an "0" missing from your post? It's absolutely essential this information is correct. 300mg of Imigran is considered the maximum for any given 24 hour period.

You really need to get an accurate diagnosis, Al. There are many different types of headache, and some of them mimic CH quite closely. After a proper diagnosis, she can begin managing her condition. CH is not cureable, but remission is possible.

Have a sift through the information down the left hand side, there's a heap of good stuff there. Standard treatments, non-drug treatments, Oxygen therapy etc.

The "practitioners" heading lists Doctors who are familiar with CH, and yes, there's not many of them, although the list is by no means complete.
As a guide to help your GP/ neurologist, keep a record of attacks; length, strength, medication taken, food or drink consumed that might have caused the attack, as well as the time of the attack. The more information you can provide, the better your doctor can decide what to do.
Also of vital importance is to keep a record of what medications are prescribed, and to check up on them yourself. Some drugs have different names but the same ingredient, making overdose a possibility.
Good luck to you and your partner, do ask any questions you have, we'll answer the best we can. But do get an accurate diagnosis as soon as you can, ok?
cheers peter.


Posted in Energy Drinks Oxygen & others on 30 Jan, 2012 - 10:09 am

"learn from each others experience" Too right Barry.
It's a daunting task, but i'd love to see ALL this information collated and cross-referenced, because surely sooner or later a commonality will become evident and so point to a cause.
The human body is amazing though; something as vital as the hypothalamus can go wonky yet we still survive, relatively unscathed. Marvellous.
cheers peter


Posted in Energy Drinks Oxygen & others on 30 Jan, 2012 - 3:12 am

Barry, you're a fount of information icon.

Do you think anything particular was causing the short term memory loss?

cheers peter


Posted in A Cure for Cluster headaches!!! on 30 Jan, 2012 - 3:04 am

Good Heavens, who would have believed it? A naturally ocurring substance potentially has medical benefits.
Now watch the drug companies ramp up an extermination program...
I wouldn't mind taking part in such a study icon

cheers peter


Posted in How is everyone going? on 30 Jan, 2012 - 2:58 am

G'day Rich. Ouch, that's nasty. Do you remember doing something different or something changing in the last week to cause an escalation of attacks? It might give you something to work with in reducing your attacks.

cheers peter.


Posted in How is everyone going? on 29 Jan, 2012 - 3:01 am

G'day Tara, good to hear from you, and congratulations on staying green.
Avoiding alcohol can never be a bad thing icon, although it can get tedious explaining why to folks, especially in australia.
I LOVE red wine, but haven't touched it for a couple of years; no idea if it helps or not. I missed my "start of Autumn" bout, same as two years ago, so i'm now wondering what my cycle is. Not complaining, mind you, just unsure. Still don't leave the house without Imigran in my pocket though.
Best wishes to you for a totally green year Tara.

cheers peter.


Posted in I'm new here on 28 Jan, 2012 - 3:15 am

G'day Dave,
re: sumatriptan tablets (non- fast acting). They're the only form I can get here in Russia, although the nasal spray is available at a hideous price.
For me, if I take a tablet immediately I feel the start of an attack, the attack will be aborted in about 20 mins. This still gives about ten minutes of hell, but exactly as Andre said, I know it will soon end.
If I miss the first sign an attack is coming, then it can take up to an hour to kill the attack.
For me, the first sign is a sort of peppery sensation high on my forehead at the part point of my hairline, then I know i've got about ten minutes before the attack fully ramps up.
I've not tried Maxalt (rizatriptan), but if I find sumatriptan doesn't abort an attack, I know for that season I must swap to Zoloft, which is zolmitriptan.
With all of the triptan group, you MUST put 24 hours between varieties, so no taking riz or zolmitriptan within 24 hours of sumatriptan.
Good luck to you,
cheers peter.


Posted in Energy Drinks Oxygen & others on 27 Jan, 2012 - 4:22 am

G'day Dan, had a good Aussie Day? Yes, Taurine is the key ingredient (apart from the caffeine), from what I understand it acts as a turbocharger for everything else that's taken, increasing your systems uptake. Barry wrote some info about it a while back, have a trawl through his posts for it.

cheers peter


Posted in Nines ACA on 27 Jan, 2012 - 3:26 am

Hear hear. Roger deserves the recognition. I'm a bit far away unfortunately, as i'm very used to having a camera in my face.
A NFP organisation is also a good idea, Matt- Ben and I have already had a think about it, but we need a legal mind to help. Is there a lawyer in the house? icon
I'll see if I can dig up any info; it'll save me freezing my butt off outside (it's gonna hit minus 25 tonight...)

cheers peter


Posted in CH in the ACT on 26 Jan, 2012 - 4:35 am

Hi Andre, my apologies to you, my response is rather cynical when I read it on a new day. Please don't take my rudeness as indicative of this site- mostly we're very nice, me included.

cheers peter


Posted in CH in the ACT on 24 Jan, 2012 - 2:09 pm

G'day Andre,
marvellous you're pain free mate.
You have a quite forceful way of putting yourself across, Andre, i'm interested why that is. You're one of the lucky ones, of course, your doctor knew CH and the best treatment immediately.
Most of us go through hoops before that, but when we do get a break, it is nice.
good luck to you Andre, I hope you stay green.
cheers peter.


Posted in Maybe this is for you or This works for me maybe it will works for you on 21 Jan, 2012 - 4:06 am

Hi Patch,
good to see you're not suffering, or your poor eyeball. Long may it continue icon

cheers peter.

Oh and Ben- A Datsun 120Y hitting 200 clicks? Not even if you drove straight off the edge of the bight icon
P


Posted in Passed my use by date. on 20 Jan, 2012 - 3:10 am

Gosh, Ben, a second opinion having merit- who'd have thunk it?
Just kidding, your comment re: long term GP and patient relationship is spot on. It's all too easy for both to get into a groove and forget to look further.
I do hope you're back on the path to relief.
cheers peter


Posted in Rebound Headaches on 19 Jan, 2012 - 4:39 am

All good, Barry.

Yep, Sara, that's something I didn't realise either. We learn something new every day, and frequently it's because of Ben icon

cheers peter


Posted in Rebound Headaches on 17 Jan, 2012 - 12:46 pm

Ben, it was not a mistake, it was an error. You knew it might not be.
If you know, it's an error, not a mistake, but it would be both not to hope and believe there is a solution to CH.
cheers peter


Posted in Steroids on 17 Jan, 2012 - 12:25 pm

Hi Guys (ha ha) Chris, that's you too...
Katy, my view is well known re: prednisone. I would rather eat someone elses nostril hair than touch that stuff again. A 200kg shrieking mess of angst i'm happy to avoid being.
Personally, I can deal with topamax (topiramate) , but then I have a driver.
If I had to drive, or ride (as is usual in W.A.), i'm not sure i'd be so comfortable.
(your milage might vary, and I sure hope it does. )

cheers peter


Posted in The Larrikin Laureate on 17 Jan, 2012 - 11:59 am

Barry, your mate is exceptional. I can hear a stubbie box being thrummed in acompniament (if that's a word)
Most excellent,
cheers peter.


Posted in Sp02 levels (oxygen levels) on 15 Jan, 2012 - 3:36 am

icon Good ponderings though, Barry. Just thinking though- cooler air should be more dense, therefore having more O2, shouldn't it?
Another reason I feel there's a connection between high CO2 levels (or low O2 levels) and CH, is I ALWAYS get an attack on long haul flights, irrespective of being in season or not. I then go and stand in the air hosties spot- which has cool fresh (er) air being pumped in and the attack goes away.
At home I also use one of those swiss aerobic balls (like a space hopper without handle bars) to sit on- you have to sit upright- and I block my good nostril and deep breathe through the other one. It gets a bit snotty sometimes, but that's the least of my concerns in an attack. It seems to help, possibly because my minds on other things than the pain, but also possibly because i'm consciously breathing right and expelling more CO2. I also hang upside down, which really clears the sinuses and allows good deep breaths. Whatever works is good, right?
cheers peter.


Posted in Time of year on 15 Jan, 2012 - 3:14 am

G'day Guy, good to see you've gone green icon

Katy, Ben was asking if anyone noticed their attacks coincided with the solstices i.e. longest and shortest days of the year. To many people the start of a bout seems to occur around about then.
For me, it's not the solstices but the change of season from Summer to Autumn, and especially from Winter to Spring (bear in mind i'm in the northern hemisphere, so back to front from Australia) .
Why is it so? Who knows, it just is. Except for the last couple of years i've missed bouts completely- which i'm not complaining about- it's just a little weird. Whatever, we keep on trying to understand what the hell is going on, and try and come up with some way to keep the attacks under control. Good luck to you,

cheers peter.


Posted in New to site on 13 Jan, 2012 - 10:36 am

Hi Katy,
welcome to the forum, sorry you had to find us.
Sara has said all that needs to be said, thanks Sara icon
We sometimes can be a little slow in responding, especially now our best greeter (Heather) is on holiday. She's also suffering at the moment, but determined to not let CH ruin all her fun.
As Sara said, there is medication you can take to stop you throwing up, your GP will know it.
There's also a printable page somewhere in the information detailing what you're going through (courtesy of the British O.U.C.H. group). This will help your friends, colleagues etc understand what's happening, and why you sometimes have to miss social events or duck out early without saying goodbye.
The main thing is to arm yourself with as much information as you can. Do keep a track of your attacks- the more information you can give your doctor, the better they'll be able to help you.
Best wishes to you Katy, I hope we can find something to help you.

cheers peter


Posted in No longer Suffering on 13 Jan, 2012 - 3:09 am

G'day Nick,
welcome to the forum.
I'm curious- what is it about CH that made you associate them with knots in your calves?
And in the same vein, what causes the knots in your calves?

cheers peter


Posted in Passed my use by date. on 13 Jan, 2012 - 3:04 am

G'day Ben,
first, thanks for your kind words. I enjoy your contributions to the forum immensely, long may they continue- which leads me nicely into a question;
What do you mean- Passed your use by date? Your post implies you have nothing left to contribute to this forum, I beg to disagree. Even if we don't see you participating in discussions on a regular basis, it would be nice to know you're still there in the background, keeping an eye on things, and throwing in some food for thought occasionally.
Do look after yourself, Ben, I still hope to meet you some day.

cheers peter.


Posted in Untitled on 11 Jan, 2012 - 10:21 am

Hi Sheree,
sorry you had to find us, but as Matt said, we'll do our best to help. Just a word of caution for your Mum to go easy at the doctors. It's not unusual for a GP to know nothing about CH (it is that rare, but we're working on it), and they can sometimes get the hump when you know more than they do, and suggest treatments.
You still have to get the right treatment though, and the information down the left there should give plenty to go on with. Good luck to you and your dad,

cheers peter


Posted in on 11 Jan, 2012 - 10:06 am

G'day Kim,
good to see you're gone green.
I'm of the same opinion as Ben- NO neurologist can definitively say what's going to happen, because they're as much in the dark as you (we) are. And for what it's worth, my attacks have waned and lessened as i've gotten older, not increased- perhaps in part due to the lifestyle changes i've made, but who knows?
Best wishes to you for staying green icon

cheers peter


Posted in Does pregnancy stop cluster headaches on 11 Jan, 2012 - 9:57 am

Les, the adrenal and pituitary glands are directly controlled by the hypoathalamus- they do not work interactively per se. Think of it as a dictatorship, if you like.

Also, I can find no logic in your tenuous link between the adrenal gland and the "fight and flight" effect influencing CH. Stopping drinking redbull or caffeine may work for you, but the opposite is true for many sufferers. Not to mention that many CH sufferers do not suffer from RLS.
cheers peter


Posted in Does pregnancy stop cluster headaches on 11 Jan, 2012 - 9:36 am

I'll simplify that even further, Roger.
If 26% say no CH when pregnant, then more than 7 out of ten did NOT agree that pregnacy stopped CH- that would statistically rule out pregnancy as postively influencing CH in women.

cheers peter


Posted in Beware Mushroom hunters - Death caps put three in hospital on 07 Jan, 2012 - 3:38 am

I too am sad for the family loss, but do understand the reason it happened. Picking and eating wild mushrooms is great fun, and a very common pastime in Asean countries, as well as in Russia, but I wouldn't consider doing it unless I was in the company of an expert picker FROM THAT REGION.
In my opinion, that it occurred in a restaurant only becomes relevent if the chef was in the habit of using wild ingredients for customer meals as well- this point is unclear. I've been working in the hospitality industry for around 30 years, and it still astonishes me that people are so blase about eating out. ANY meal can have dire effects. A scrap of dirt clinging to a potato could be enough to give you botulism, any egg can carry salmonella.

Despite the tragic loss of life, I do hope the government does not have their usual knee-jerk reaction and demand casual pickers have to pass a test and procure a licence before picking anything. For food professionals, perhaps.
Dan, I don't think you're stupid. Using nature's bounty is a great part of life. I hope you're allowed to continue doing so unfettered by the red tape so beloved of modern society.

cheers peter.


Posted in Pulling out for a while on 05 Jan, 2012 - 4:38 am

Hi Heather,
best wishes on your travels. For lenses, if you need to save weight, just take a multi purpose lens like an 18-200 if you have one. It will cover just about everything satisfactorily without being brilliant. Barring that, choose what you think will cover most situations. I have a Canon, not Nikon, so don't really know the common lenses for you.

Thank you for your very kind offer to post some Promite, but i'm fairly sure it won't clear customs. Friends have tried before, and customs were certain hashish was hidden inside and confiscated it.

Don't forget to check if your medication is allowed in France, and what quantities you're allowed to take in. A mistake might make for a dreadful holiday. As an example, taking any sort of codeine/ panadeine etc through Dubai can get you into serious trouble- prescription or not.
Best wishes for a happy holiday,
cheers peter.


Posted in Untitled on 01 Jan, 2012 - 3:27 am

Christmas and New Years, flat out lokking after everyone elses parties. Tomorrow morning, it's my turn icon
Best wishes to everyone- keep up the good work, those who have managed to turn green. For the red ones- it's your turn in 2012.

cheers peter.


Posted in Untitled on 29 Dec, 2011 - 12:50 am

Wow. Well, it's extreme, but at least you are forced to take it easy for a while. Take care of yourself, Ben, and we'll see you back fighting fit in the new year.
cheers peter


Posted in Untitled on 25 Dec, 2011 - 3:08 am

The ultimate in nitrates Ben, is nitroglycerine, as used by heart patients. I read one medical report which said it was 100% effective in triggering an attack for "in-cycle" patients. Scary road to go down...

cheers peter.


Posted in Inverting the head, a.k.a. The vampire bat treatment on 20 Dec, 2011 - 9:57 pm

Yep, I only jumped on the thing out of deperation, and was ASTONISHED when the attack eased faster than usual. I'm not taking any blood pressure meds, nor calcium channel blockers or the like, so bear that in mind. As I said previously, i'd already taken an imigran pill, so knew it could have been down to that, but it was too fast.

Whatever, I swing on the thing every day- I love it, but then i've always been a bit strange icon

cheers peter


Posted in Maybe this is for you or This works for me maybe it will works for you on 18 Dec, 2011 - 4:22 pm

Chamsin - this one is pronounced 'hum sin" in Israel, and describes the hot blast coming off the desert plains (literally 50, as in degrees). There used to be a law that if a man killed his wife after three days of "chamsin", it was ruled justifiable, due to the extreme conditions. I'm not certain if it applies the other way around icon and I don't think it still applies...

To those CH'ers heading to Europe- consider a stop in St. Petersburg, Russia. I would be delighted to meet you and put faces to names. I can help with visas, transport, accommodation etc. if you want, just give me some warning. I can even loan some extra warm clothing, in case you aren't equipped adequately. I wasn't, the first day I landed here- a Drizabone is not enough for minus 15, but then clothing suitable for Arctic conditions is not commonly available in Australia, and it's a PITA to carry around with you.
My services are FREE, but a jar of Vegemite, or preferably Promite, will ensure undying gratitude...icon

cheers peter


Posted in No Brainer... on 17 Dec, 2011 - 10:57 am

Hnn- sounds too nasty to me. At the risk of stating the obvious, Ben, why not ditch the prednisone?
good luck anyway. You're right about Michael Hedges- absolutely brilliant.
cheers peter.


Posted in Maybe this is for you or This works for me maybe it will works for you on 17 Dec, 2011 - 4:14 am

Sibelium (flunarizine) and Verahexal (verapamil) are both calcium channel blockers. Overdose of calcium channel blockers is extremely dangerous, and the biggest cause of poisoning deaths in the U.S. Proceed with caution.
regards, peter.


Posted in Live Chat on 14 Dec, 2011 - 4:24 am

Thanks Barry, I'll try that.
cheers peter


Posted in new file names. on 14 Dec, 2011 - 3:44 am

Hi Barry,
no, it's not really cold yet, not even any snow. No wind either. I am not cold walking around in a suit without overcoat, but if the wind gets up, it's a whole new ball game.

No gas needed for a heater, all buildings in the city have a in-built radiator system fed by hot water, the roads do too. The one problem is the city decides when to turn the system on, and off, so if the weather is unseasonal (like now), the apartment can get roasting hot.
There is a charge on my rates for the service, but that also includes an on-call plumbing crew (free) should something go wrong with the heating. Good system.

cheers peter


Posted in Inverting the head, a.k.a. The vampire bat treatment on 12 Dec, 2011 - 5:56 pm

Ha! The V2v3 area, Heather? Perhaps not an M.D., but R.N. (ret) is more professional than most of us. Let's face it, if there were no nurses, society as we know it would implode.
And still nobody has answered my question from yonks ago- to wit: why and from where is the production of snot in CH? There's no foreign body lodged in the sinus, no virus causing an infection. How come with CH there's copious snot?

Also, how come if I get rat-arsed drunk (Bladdered, as it were), I will NEVER suffer an attack the next day? N.B. this is NOT a recommended alternative treatment. In the first place it costs way too much, and in the second place the rest of your body will fall apart too.
Brendan, on long haul flights, hang around (pun intended) where the stewardesses do their thing- there's more oxygen in the air there, and it's colder. On some carriers, if you let them know you suffer CH, they'll hook you up to an oxygen bottle if required. I can't find the post to link too right now, but if you dig a bit, it's there.
cheers peter


Posted in Don't Let The Beast Rule Your Life on 12 Dec, 2011 - 5:31 pm

G'day Matt,
i'm gutted there's no sunshine in your eyes.
I know this is way forward of me to suggest, but if the meds aren't working by going higher in dose, the try going lower in dose. Ease it on back- especially the amytriptaline, For your purposes, 250mg a day won't help in the long run, it will just create another brick for your load and turn you into something you weren't.
Matt, if you're dreading the Christmas parties, don't go to them. Buy a couple of ginger beers and sit on the beach with your family. Don't restrict yourself to conforming with society's constraints- find something you can do around the fact that you suffer CH. Learn something new,a language, how to fix household items, whatever; you must look forward with hope, Matt. It WILL get better, you must believe that.

cheers peter


Posted in Live Chat on 12 Dec, 2011 - 3:44 am

G'day Matt,
it's a tricky one, this live chat. I'm night shift and Northern Hemisphere, so difficult to get the times right. I've checked in there once, but no-one else was awake... We'll get there eventually.
I was wondering if there's a way of knowing who's in the chat room, in case avoiding someone is desireable?
best wishes
peter


Posted in It's not easy being Green... (pointless trivia) on 12 Dec, 2011 - 3:23 am

Hooray!
Congratulations Tara. Do enjoy your green time; hopefully you'll stay and offer encouragement to those still red, as well as new members seeking information.
I've always found the point of going green a mixed emotion- on the one hand there's joy at the attacks staying away, but it's mixed with the dread it's just a false alarm. In those situations i've always found the return bout to be far worse, due to the initial elation and then crushing realisation it's not over. Very disappointing, and tough to deal with.
Best wishes to all for a green 2012,
cheers peter.


Posted in new file names. on 11 Dec, 2011 - 3:12 am

Yep, i'm an uncommon sort of person, Kim icon What other Aussie would live in Russia. It's already down to zero degrees and won't climb over that until April icon
I used the same method as you, Kim, but if the thread has no name, you have to check all posts that fall within that date to find the right thread.

I remember you having re-named files, Shell, that's what prompted me to pitch in too. I didn't realize the tags were dropping off again. One for Roger icon

cheers peter


Posted in Botox on 10 Dec, 2011 - 11:42 am

I re-named at least one thread about Botox last night. Dig further back. Ben has also posted on the subject- possibly a link too (if I know Ben)

cheers peter.


Posted in new file names. on 10 Dec, 2011 - 7:26 am

Hi all.
FYI- i've put a name to a few threads that didn't have them, trying to use something appropriate to the main content e.g. Oxygen; Verapamil or whatever.
These are not new threads, just that when I was seaching for a post, an un-named thread made it more difficult than it needed to be to find a post. There might already be an easy way to do that, but i'm a luddite anyway icon

I'll carry on renaming too, as time permits. It will make it easier for cross-referencing in the future.
cheers peter.


Posted in Inverting the head, a.k.a. The vampire bat treatment on 10 Dec, 2011 - 7:16 am

G'day Virzitone, welcome to the forum, sorry you had to find us.
It's taken me a while to find (it didn't have a name), and I'm too dense to know how to link to it, but in "Questions and support" find "contributing factors" I wrote how one of those inversion table swing you upside down thingies did me a lot of good. Come hell or high water, i'll have one of them in my house forever.

cheers peter.


Posted in Do your own research on 09 Dec, 2011 - 5:43 am

Aha. I just read your "about me", Les, and I think I understand you better now.

I'm curious about when your doctor diagnosed you, and what he said. From reading your information, there might be more than just CH happening to you.

The reason I say this, is that some of the ailments you describe are not specifically associated with CH, and the same with some of the triggers, so it could be that you're lumping everything together as CH symptoms, when really there could be something else going on, and needing different treatment.
For example, stress, smoke and perfume have no efect on me with regard to CH, but all three trigger a migraine attack in my sister.
Maybe something to think about.
cheers peter.


Posted in Test yourself to find out how toxic you really are. on 08 Dec, 2011 - 11:33 pm

Leg troubles? It looks as if Chris is sitting comfortably to me.
Fire is not a toxin, Les, although it's byproducts if inhaled are. I didn't at any stage say there is no link between toxins and CH- in fact I have previously said I believe there might be some correlation.
I dispute your claim there is a link between fire, perfume and CH. Neither fire nor perfume ha ever caused me any ill effect, in cycle or not. The same with worms stealing vitamins and minerals. Were it that simple, a multivit every day would cure you.
You assume too much about people without stopping to find out first, Les. To quote you- "do your own research".
Good luck in your search for a cure. I doubt the cause is a simple one, but the treatment could well be (mushrooms, anyone?).
cheers peter.


Posted in HOPE - 9 REASONS WHY AN AUSTRALIAN COULD CRACK THE CH PUZZLE IN OUR LIFETIME. on 08 Dec, 2011 - 7:09 am

Ha. Ben, i'm seeing this after sending the PM.

Look after yourself eh? We need your insightful input.

cheers peter.


Posted in Do your own research on 08 Dec, 2011 - 6:43 am

Les, mate, you don't know enough about me to allow an opinion on how I think.
What you COULD do though, is click on my name, then on my posts, and you'll find that I said basically what you're saying, but about five years ago. So, actually, you DO think like some of us, certainly me, you just haven't taken the time to listen or read about us first to find that out.
Honest, there's some smart people here, and most of us do do our own research. We're all fully aware that there is no definite cause for CH yet, so any treatments must be hit and miss and/ or just treating the symptoms.
Sorry, I don't mean to be having a go at you, Les, but you've sort of jumped in full bore. No worries, we're all dealing with CH in our own ways. If you can show me a link between worms and CH, i'll read it for sure. icon

All the best to you and yours, too Les, and a safe and happy 2012.
I'm permanent night shift, so that's when I can chat (Northern Hemisphere though icon)

cheers peter.


Posted in Test yourself to find out how toxic you really are. on 08 Dec, 2011 - 5:47 am

Boo Boo, I understand your desire to spread information you feel is useful, but please! Restrict your links to material that DIRECTLY refers to cluster headache.
The site linked above is so general in it's content it's positively dangerous- there are no absolutes in medical diagnoses such as that site describes.
By all means link to information about cluster headache treatments that are irregular, but only if they're specifically for CH, OK?
Thanks, and best wishes.
cheers peter.


Posted in are they finally over? on 07 Dec, 2011 - 6:48 am

Laksh, a doctor is best for help. Tell us about yourself, how you are treating yourself etc in a new post, that way you won't get buried under other information.

I'm the same as Barry, Tara. Two weeks after the last attack, try a glass of wine. If no attack, you're clear until the next season- hopefully in a very long time icon

cheers peter


Posted in restles leg syndrome on 05 Dec, 2011 - 3:11 am

What's EHS Barry? Is that like a gun has gone off inside your brain, with a flash and a bang- almost like a huge electric shock? If so, i'm familiar with it. Almost always at the point of falling asleep.


Posted in A Cure for Cluster headaches!!! on 02 Dec, 2011 - 9:45 am

Hi Kim,
nope, can't help you with that one. Well outside my sphere of knowledge icon
Is there an upper limit to be avoided (as in poisonous/ dangerous)? What's the most LSA ever measured in one seed? Take that as a baseline and work backwards from there.
cheers peter


Posted in desperately needing help. losing my mind................ on 02 Dec, 2011 - 9:37 am

Hi Adam,
very sorry to hear you're suffering. When you say no legal medicine does any good- has your doctor tried you on any of the tripans i.e sumatriptan (Imigran) zolmitriptan (zomig) or rizatriptan (Maxalt)? They're no fun as in "recreational", but they do stop attacks in most people, it's just a case of finding the one that works for you.
Your doctor is not being unprofessional in not prescribing you stronger (narcotic) pain relief, quite the opposite. In the first place, they generally don't help, and in the second place you have a history of drug use/ abuse which, if your doctor ignored and prescribed you narcotic painkillers, would leave him open to a malpractise lawsuit. To get help, you have to help yourself.

Your attitude is vital in dealing with CH, Adam. Thinking of yourself as broken, defeated etc is not going to help you, nor will it inspire a pain management team or doctor to go out of their way to help you. If they know you're using street drugs, they're not going to want to be near you, let alone help.
Get to work on treating your mental illnesses, and your CH. If it's the same as last time, it will pass, then you'll have relief. As you say, your wife and boys deserve better, so show them you can be better.
If you are feeling suicidal, then get professional help. We're not doctors, but we can lend you a shoulder to cry on, or just listen while you vent.
best wishes to you
peter


Posted in Causes on Facebook on 02 Dec, 2011 - 2:55 am

Hi Matt,
not sure what a causes page is, but facebook is blocked for me at work so it's not somewhere i'm active anyway.
chers peter.


Posted in Untitled on 15 Nov, 2011 - 5:08 pm

G'day Matt, good advice from you, as always. I can't add much, except that Amitriptyline isn't much of a smile maker is it. What it will do is change the YOU your family are used to to someone they don't know. They need to know that.
Matt, You've had a shit few months; a potential cure turned nasty so all that Hope turned sour on you. Let it go, Matt. You've gone where none of the rest of us have dared go yet, that's REAL hero territory.
I'll be honest, i'm shedding tears for you right now. Sorry i can't ease your load mate.
Best wishes to your family too
love, peter.


Posted in No sleep = no pain??? And what are the jumpy legs? on 15 Nov, 2011 - 7:40 am

Hi Tara,
Ben's mid 30's, been suffering almost continuously since he was in nappies, so yes, he knows a bit about CH.
Take care avoiding sleep to evade an attack, Tara. You can delay the inevitable, but like the sunrise, sleep will come at some stage, and when it does, you're going to get hit with the whole series that you tried to avoid, all at once.
Establish yourself a rhythm or pattern and try and stick to it, it will make things easier in the long run.
Read the information here, Tara, it WILL help, really.
best wishes
peter


Posted in Untitled on 15 Nov, 2011 - 7:09 am

As I said, Ben, the neuros are taking stabs in the dark because they don't REALLY know what's causing the problem. This is also why i'm in awe of Matt, allowing the medicos to push the frontiers by using his head. At some stage it better work Matt, so I can buy you a beer or J.D. But I also know you're doing it because that's how much your family means to you. Respect.

cheers peter.

p.s. I LOVE the smell of solder, reminds me of my dad.


Posted in Untitled on 15 Nov, 2011 - 5:58 am

Really, Ben. Why not? So long as you're careful and don't fry your brain, for sure give it a go.
As far as i'm concerned, until there is a definitive cause for CH (can there be only one?), and therefore a known point to attack, just about anything goes in trying to combat symptoms- short of putting a bullet through the offending eye, which I would of done a few years back, if i'd had a gun handy.
Hopefully by experimenting with such things a breakthrough will be achieved, and won't the drug companies spit chips icon

cheers peter


Posted in Treatments on 13 Nov, 2011 - 3:28 am

Thanks Stone, very interesting. Mandrake was used by the Greeks and Romans as an anti-convulsant, and those guys did know a thing or two about medicine. I'm not convinced on homeopathy, but herbal medicines certainly have their place in society. Best wishes for you staying pain free.
cheers peter.


Posted in oxygen availability on 13 Nov, 2011 - 3:07 am

Good news, Neil.
Barry, you're a wizard. How do you do that?
Kim, a GP should be able to give you a letter for oxygen, check past posts of Barry's (was a while back) for information. It may have changed since then but there's no reason it should have.

cheers peter.


Posted in Circadian Solstice??? on 12 Nov, 2011 - 3:02 am

Well Ben,
"Delayed Sleep Phase Type" just described me to a T. Fortunately, I (and my parents) recognised this as my character and not as a fault, and had me do a Diploma in Hotel Management and steered me into the hospitality industry, thus using it to my advantage.
I don't consider Circadian Rhythm Sleep Disorder to have any impact on me re: CH, so that's one aspect I can cross off.
Thanks for the info, Ben. I always knew I was "special", now I know why icon

cheers peter.


Posted in Are they cluster headaches? Who can diagnose me properly? on 11 Nov, 2011 - 6:40 am

Spot on Chris.
Almost certainly the Maxalt that caused the wooziness; all of the triptans do to a certain extent.
I would not put the doctors dismissal of oxygen down to ignorance, Tara. There's no kickback system from God, so natural remedies are not favoured by the medical fraternity. That said, I would want a little more information about the ingredients used in the homeopathic remedy suggested elsewhere before investing in it too. As I said before, I have a healthy dose of cynicism in me icon


Posted in Untitled on 11 Nov, 2011 - 6:23 am

Hi km,
maybe put it down to the combination? Don't think of the diet change in the same way as the prednisone, I implore you. You should look on the diet change as a lifestyle change, and think of it as your body and mind thanking you. Prednisone is NOT good for you, even if it stops a CH cycle. Switching your eating habits to include mostly unprocessed foods and a good intake of water IS good for you. Just make sure you maintain a balance of vitamins and minerals in your system- preferably naturally- and you can't not feel better.

I in no way wish to diss you, Chris. I'm delighted prednisone works for you. Personally i'd rather eat someone else's nostril hairs than touch that stuff again, but there you go. But you do seem to have a fairly healthy lifestyle anyway, so maybe that's the difference. Who knows?

cheers peter.
.


Posted in Are they cluster headaches? Who can diagnose me properly? on 10 Nov, 2011 - 4:45 am

And you are absolutely correct to not take his word for it, Tara. ALWAYS do a check on any meds you are prescribed. It's very common to have the same active ingredient in a differently named med which can result in too high a dose being taken. Also, keep a record of what you take and when. It's easy to be forgetful on some of the common CH meds- dosing too often, or too much in any given 24 hour period can be really dangerous.

As you will be seeing different doctors, who will each have their own approach to your treatment, it is really up to you to make sure what has been prescribed isn't a dangerous combination. They should know too, but they won't have complete information, or might just make an error. It's your body, you must look after it.
Endep is Amitriptyline, a common anti-depressant which can also help you sleep without actually being a sleeping pill. In the dose and time frame you've been prescribed, it shouldn't do much in the anti-depressant direction.

Maxalt is rizatriptan, one of the newer of the triptan family of drugs used to treat migraine. It seems to be getting more attention from GP's as a CH treatment, although I can't find any information specifically supporting it's use in CH. (Bear in mind, Tara, I have no medical training whatsoever, just a healthy dose of suspicion in all things medical) The usual triptan prescribed is Sumatriptan- very effective- and the oldest of the family.

I presume your doctor explained how to take Maxalt? As with any of the triptans, it's important to take the prescribed dose IMMEDIATELY you feel an attack start.

It's possible that the medication does not help. If that should be the case, see the doctor again and specifically ask for sumatriptan (Imigran), do check for alergies / contraindications first though. It is by far the most effective for CH. You really also should discuss oxygen treatment with the doctor too- you don't need to wait for your appointment with the neurologist.
OK, that's it. Good luck, and fire away with any questions. We'll help if we're able to.
cheers peter.


Posted in Ride for Awareness on 08 Nov, 2011 - 3:31 am

hi guys,
just now listening to Goanna -living on the razors edge. Great old Aussie band. Not about CH but seems all too appropriate.
I've been in the hotel and casino business for 25 odd years, and i've got some people who know how to make things happen. My good mate Bendigo knows how to get this sort of thing happening, He does the Aussie Millions at Crown- i'll get onto him.
It's sad to say, but the serious media is not going to be interested in our plight. Hmmm, I know what i'm going to do today. icon
Matt, anything concrete in mind? I'm a dead set loser on a pushie, but I can walk forever. Either that, or put a motor between the two wheels, then i'm laughing.
Too late for this year, but best to choose an "off season" for those of us who enjoy such a thing (sorry Matt), otherwise it's gonna be a shambles.
Ben, what's the chance of some Neurological support? If we can get a serious medical figure to accompany us, that clout is going to be priceless.
Heather, spiritual support or not, we're going to need sandwitches and cups of tea on the way, maybe schedule an east coast holiday instead of Vienna? Do this and i'll shout you the Empress suite at Taleon Imperial Hotel in St. Petersburg, plus tickets to the Marinskiy theatre, anytime you and your stronger half is up this way.
It's going to happen! (could be a catchcry for CH)
best wishes to all
peter


Posted in Are they cluster headaches? Who can diagnose me properly? on 07 Nov, 2011 - 7:11 pm

Hi Tara
Sara is correct about hospital visits, unless you're in a small town where they know you, you'll be fobbed off as a junkie at best.
You must see a doctor, and at least get some attack aborting medication like Sumatriptan or Zolmitriptan. It's not a pain killer, but it will (usually) stop an attack in 20 mins or so, provided you take it immediately you feel an attack start.
Pain killers don't usually work, but apparently Aspro clear at 900mg can help, as can Neurofen Zavance. I've not tried either, do your research and make sure you're not taking too much of anything, ok? And see a doctor. Don't wait 3 months for the visit to the neuro, you'll be a basket case by then.

Cheers peter.

p.s. Hope you're alright Heather.
P.


Posted in Untitled on 07 Nov, 2011 - 3:26 am

G'day Matt,
Sorry, didn't see this. Not much I can say, except best wishes to you and your family. You've been an inspiration to us all with your strength in the face of your challenges, I hope things turn around for you soon.

cheers peter.


Posted in Are they cluster headaches? Who can diagnose me properly? on 06 Nov, 2011 - 10:48 am

Yep, that's the right attitude Tara. There is plenty of treatments that will ease the burden, it's just that for CH there is no cure as such. For most of us, it's a case of doing the best we can with the cards life has dealt us. Take some time and go through the information on the left there. Maybe you'll find something useful.
I know in my case, i've been doing it fairly easy for the last few years (frantically touching wood) after having made lifestyle changes because of CH. Faily simple stuff like altering diet can have a profound effect, without having to go all radical.
Anyway, talk to a doctor about your concerns, and hopefully you'll get some positive answers.
Best wishes
peter.


Posted in Are they cluster headaches? Who can diagnose me properly? on 06 Nov, 2011 - 3:56 am

Hi Tara, very sorry to hear you've suffered so long.
I don't know Smithfield, but if you look on the left there at the "Medical Info" section, click on practitioners, then NSW, those doctors listed know what they're doing with regards to CH and other types of headache. You understand, even if your symtoms match very closely those of CH, you really need a professional to see you to diagnose you properly because there's so many types and sub-types of headache.
Hopefully one of those doctors is in your area or close to it, and you'll be able to get a definite diagnosis and the treatment that goes with it. Good luck.
cheers peter.


Posted in Untitled on 05 Nov, 2011 - 10:42 am

Hi Kerri,
Yes, this is a vile ailment, no doubt about it. There is a school of thought that reasons it's to do with the body being burdened with toxins- this then knocks other things out of whack, principally the hypothalamus, and so the cycle goes on. No-one really knows.

When I was first diagnosed, my neuro put me on dexamethasone - a nastier version of corticosteroid than prednisone- at 30mg per day for 6 days, then 25mg for 5 days down to 5mg for ten days (total 30 days) then when I didn't respond I had to do it again. I'd already put on 18Kg in the first two weeks and felt like utter crap but stuck at it. Basically all it did was alter my cycle so that I didn't know when an attack was going to occur. So it didn't work for me. It does for some people, but everyone's different.
My neuro didn't tell me about Imigrin, I found out about that from this site (thanks Roger icon) .

Drinking LOTS of water, avoiding processed foods, lots of fibre to keep things (ahem) moving, these are all things that people over time have said helped them.
Have you looked into getting a supply of oxygen? Seach through the forum for posts by Barry T Coles, our resident guru on oxygen. He swears by it, and it's by far the least damaging, effective treatment, if it works for you. It's important to use it properly though. Most medical literature says to use 7- 10 litres a minute, but almost any CH sufferer will tell you that's nowhere near enough, levels of 15 to 25 litres per minute are required to knock out an attack, and that the technique is especially important.

Do go back to your neuro and discuss your case. Don't pretend it's not happening. There's a huge range of treatments out there (none of them are a cure though), you just have to keep seaching until you find whichever ones work for you.

Do pay attention to what medications are prescribed for you Kerri. Ben, Matt, Alex and others will tell you it's all too easy to get hooked and cause yourself even further grief later on. Far better to not go down that road if you can avoid it.
Good luck to you, and fire away with any questions.
best wishes peter.


Posted in Untitled on 04 Nov, 2011 - 4:01 am

Hi Kerri,
yes, dietary changes can make a huge difference. If you cut out processed foods and eat raw and/ or unprocessed foods, your whole system starts to detox. I have found it a huge help. Cutting out sugar from your diet is also a big help, but simply eliminating processed food will cut a huge chunk of sugar from your diet. In particular, avoid foods containing High Fructose Corn Syrup, a highly processed form of sugar not naturally sourced, and found in a startlingly high number of foods. There are some posts about sugar in other sections, just be aware some of the information is utter nonsense. As always, do your own research from as many different sources as possible.

I do hope prednisone works for you, but be aware it might not. Chris has had good success with it, I did not, so don't be disheartened if your results aren't ideal.
cheers peter.


Posted in Understanding this headache on 01 Nov, 2011 - 3:36 am

Hi km,
I can only get the tablets here in Russia, so i've no experience with the injections. I used the spray once, but I didn't do it correctly and ended up swallowing most of it without and benefit. Foul taste too.
I get woken up by the first twinge of an attack - my brain has trained itself to. I take a tablet immediately, so by the time the attack really ramps up, there's not long before the sumatriptan kicks in.
I previously had a VERY heavy session with Dexamethasone - similar to Prednisone- and will never touch it again. Horrible stuff.
It's very common that what worked for one bout of CH either doesn't work for the next one, or just doesn't work as well as usual. If I find sumatriptan doesn't kill an attack, then I know for that cycle to switch to zolmitriptan, although waiting the mandatory 24 hours when swapping one for the other is cruel torture.

Chris, when you were on Atenalol, did it feel like your hands and feet weren't attached to your body? I had the strangest feeling from that. Not unpleasant, just sort of disjointed .

Best wishes to you, km. Chris has just "gone green", let's make the same thing happen for you.
cheers peter.


Posted in Supporters tips on 01 Nov, 2011 - 2:47 am

Hi Marni. Very sorry you had to find us, but we'll do our best to help. What your husband's diagnosis means (if it's correct), is a very trying time for all of you.
If you can, sit down with your husband and go through the information on the left there. It will help both of you understand what's going on.
In particular, the "what happens" and "Whats it like" under medical info, and "supporters tips" in member pages.
After that, the information on medication- both natural and pharmaceutical- and how to keep track of it. You should be aware that it's very common for the prescribed medication not to work. You mustn't lose heart, there's a huge range of treatments, some work for some people but not for others.
High flow oxygen is very effective, but it must be used immediately an attack starts. The time it takes to get to the doctors means it's probably not going to be effective. There's a whole host of info there on how to use oxygen correctly, and how to get a home supply. Do try and give it a real go, it's by far the least damaging to the body.
Good luck to you both,

cheers peter.


Posted in Hello. My name's Leigh. on 31 Oct, 2011 - 3:30 am

Very possible to be dormant for a long stretch then attacked again.
You need to speak to your doctor about your medication. Sandomigran is not a usual first choice medication for CH. It is prescribed for migraine, which is completely different.
Maybe also ask about injectable Imigran or tablets instead of the nasal sprays. It might then be possible to take a smaller dose, but more times a day, if that's what you need.
Read up on all the information on the left there, Jamo. The more you know, the better your doctor can help you.

cheers peter.


Posted in Understanding this headache on 29 Oct, 2011 - 3:12 am

Good work, Ben!
Bellie, take care here. Although SUNCTS is a spot on match to your symptoms, you still need a professional to diagnose you. If you TELL the doctor, they could well get the hump and so not offer their best.
Better to request the doctor "explores the possibility" of there being a different cause. i.e. SUNCTS. You need to work with your GP- that's the only way you'll get access to specialists.
Yes, it is common to feel shattered after a series of attacks, medication can do that do you as well.
Please, do not be concerned about asking questions- whether it's CH or not, we're happy to help. I know i'm speaking for Ben here too- if we can restore quality of life to anyone, we're delighted.

cheers peter.


Posted in Understanding this headache on 27 Oct, 2011 - 3:11 pm

icon, I can promise you, Bellie, we all hope and pray the attacks will go away.

It's also pretty common for us to get doctors that don't recognize or correctly diagnose us initially. These are fairly rare conditions, which is why we have to be pro-active about managing it ourselves.
Cross your fingers, that they've gone away.
If not, What I would suggest, is you keep a record of your attacks, length, time of day etc.
Also what medication you take and whether it does any good or not. This way you will have a lot more information for your GP to work with. For you, the length of the attack and the frequency is very important information - be as accurate as possible.
Best wishes, Bellie.

cheers peter.


Posted in Understanding this headache on 27 Oct, 2011 - 3:38 am

Hi Bellie. Soryy to hear you're suffering so much, hopefully we can be of some confort and help. First question- are you female? If you are you might be in luck.
Did your doctor diagnose you as having cluster headache? I am NOT a doctor, or any other sort of trained medical person, but the short description of your symptoms you give sounds more like Paroxysmal Hemicrania. Read up on the info on the left under "Medical Info", what's it like etc, then read up on Paroxysmal Hemicrania. After that, if you think the doctor might have got it wrong, then go back and see them and say so, and discuss it with them, because there is a proven treatment for PH (which is why I said you could be lucky).
If it's not, then you're back to square one, and we'll try again. Good luck.

cheers peter.


Posted in Cluster Busting on 26 Oct, 2011 - 3:55 am

G'day Dave,
double post, i know, but better safe than not. Shell put some info about busting- different to mushies but apparently just as effective and less potential for getting in trouble.

Do as much research as you can to make sure you understand the product first though eh? With some of those type of things if your minds not in a good place to start with, it's only going to get worse. And that's without the headaches.
I have no experience with any of them, but I would if I could. I firmly believe there's a natural cure for every ailment, it's just we don't know about it yet, or we're not allowed to use it. Go well mate.
cheers peter.


Posted in GLOBAL YEAR AGAINST HEADACHE 2011 on 24 Oct, 2011 - 3:03 pm

G'day Ben,
just looking at that name- i'm guessing it's going to be close to me. I wonder if a cross border forum might be possible.
Thanks for the heads up, this is really intriguing.
cheers peter.


Posted in HELP Do I suffer from cluster headaches, severe migraines or menstrual migraines on 23 Oct, 2011 - 9:46 pm

Hi Jakkss, are you Scottish? Wow, Australia is a fair step from home. Don't worry about it- the old you is there, she just has to find her feet. Steady as she goes.
cheers peter


Posted in Status on 23 Oct, 2011 - 4:10 am

G'day Alan- just saw this. Fantastic ! !

Fingers crossed for you too, Chris.

cheers peter.


Posted in Hello. My name's Leigh. on 23 Oct, 2011 - 4:07 am

G'day Jamo, welcome to the forum. Maybe you can tell us about yourself in "members" or "treatments"?
I'm not familiar with Sandomigran at all and i'd be interested to know your experiences with it, did you suffer any side effects, that sort of stuff.

cheers peter.


Posted in Hello. My name's Leigh. on 23 Oct, 2011 - 4:02 am

G'day Leigh,
you should be concerned if your doctor is lumping migraine and cluster headache in the same basket- they're not the same and the treatments can overlap but they're not identical.
Don't be too hard on your doctor if they're not familiar with CH, it's a very rare condition. That's the reason sufferers tend to know more about it than a GP would, and the help of a neurologist is essential.
I'm not familiar with Sandomigran (good thing too, looking at the side effects), but from a quick scan of medical sites it's not a first choice CH preventative. Do read up on preventative and abortive treatments- the more you know the better it is when you discuss matters with your doctor, but do remember to tread lightly. Some doctors (especially if you're new to them) will be highly offended if they think you're trying to tell them their business.

cheers peter.


Posted in HELP Do I suffer from cluster headaches, severe migraines or menstrual migraines on 23 Oct, 2011 - 3:48 am

Hi Jakkss,
wow, what a horrid set of symptoms you've got. I'm afraid we're the wrong people to ask for a diagnosis- we can give you a shoulder to cry on and advice from our experiences, but we're not doctors.
You don't say if you've been seen by a neurologist- if you haven't, that would be my first recommendation, followed by an ear, nose and throat specialist.
It could be that there's more than one medical condition happening to you at the same time, so trying to fit your symptoms to just one ailment might not be possible. That is why you really need to see a specialist- which is easier said than done, I know.
That said, we will try and help you as much as we can. Sift through the information on the left there, maybe start a headache diary if you don't already have one. Feel free to ask questions- we'll answer them as best we can.

best wishes,
Peter.


Posted in Hello. My name's Leigh. on 22 Oct, 2011 - 3:15 am

G'day Leigh, and welcome to the forum. Very sorry you had to be here, hopefully we can be of some help- maybe with support when you need it, or even a new avenue of treatment you didn't know about yet.
There's tons of information on the left there to sift through when you can. Ask questions if you like, we'll do our best to help.

Cheers peter.


Posted in Psyclobin (hallucinogens as CH treatment) on 21 Oct, 2011 - 5:50 am

Hi Dave. Did you read Shell's posts as well? It's not just mushrooms, apparently there are seeds that work as well, which you can buy over the internet.
I have no experience with these so DO YOUR HOMEWORK. read up on it as much as you can- it's not a "silver bullet" miracle cure, but it has helped some people in some situations.

cheers peter.


Posted in Supporters Of CH Sufferes on 16 Oct, 2011 - 12:38 pm

Good on you Matt. You couldn't be more right- without support we'd all be well and truly screwed.
Mind you Matt, you and your family has had an horrendous patch to have had to cope with- your missus must be a saint.

You could say Shell is the supporters rep, and a fine one too icon

Keep looking forward, Matt. If for no other reason than to reward the effort your family has gone to for your sake. You're obviously worth it.

Cheers peter.


Posted in Time to "fess" up on 15 Oct, 2011 - 7:25 am

Dear Heather, very sorry to see you red again. I'll be crossing fingers it's a very brief stay. Best Wishes to you and you support crew (husband).

And Barry- keep em coming icon

cheers peter.


Posted in just how far can you go on 15 Oct, 2011 - 7:17 am

Ben, IIRC, the therapeutic dose is well below the "recreational" dose, to the extent that a rebound should not occur.
Is there a specific variety to be used? I recall going through the market in Amsterdam (before the sale of fungii was banned) and the various types were named and the effect stated. Some were speedy, some were trippy, others floaty- you get my drift. I was alone so didn't indulge, and now they're banned because too many idiot foreigners got trashed and ended up in the gutters drooling on themselves icon

Maybe try the gold tops, not the blue meanies icon


Posted in What Works For Me on 15 Oct, 2011 - 6:50 am

Heather and I were actually discussing this previously- meds working one time and then not the next i mean- to the extent that I realized that many of the treatments that I determined were crap really wanted revisiting. It's altogether possible that it was only for that particular cycle a med was ineffective, so i'm starting a cross reference type chart. Unfortunately all previous information of mine wasn't with this in mind, so will be inaccurate and not to be trusted.

I'm all for trying any wild ideas, Kim, and there's a lot of info here. Others have said blasting themselves with the coldest airconditioner they could find helped, so I DID try that. (Opened the window here in winter icon) it helped, but didn't stop the attack. But hey, whatever gets you through the night, right?

Best wishes to you Kim,

cheers peter


Posted in What Works For Me on 15 Oct, 2011 - 3:06 am

G'day Kim, sorry about not replying, I don't see this thread unless I scroll the page, which I don't.
Yes, this could be interesting, if a lot of work. Going back through 5 years or so of posts is not something Roger is going to want to do icon
It's coming up for winter here so I might get motivated and start extracting the pearls of wisdom buried within. For me- and I only discovered this last season- swinging upside down on one of those gravity inversion thingies busted an attack about 60% of the time (without meds), although a couple of times I couldn't stay still long enough.

cheers peter


Posted in A Cure for Cluster headaches!!! on 05 Oct, 2011 - 2:52 am

LOL. Not really a cure Shell. A cause would have to be identified first.
What it is, is an extremely effective natural treatment denied us by the powers that be because the drug companies can't control it.


Posted in Posting Photo's on 02 Oct, 2011 - 6:59 pm

No hosting site here Barry but AAARRGGGHHHH. I haven't tasted Vegemite on toast in at least two years, and i'm just now snacking on a bowl of pelmeni cause that's what there is instead icon
I'd be scared of what would end up on a russian photo hosting site, they have a certain reputation, if you know what i meanicon

Oh but that Vegemite is sweet. And Geelong won.
It's gonna be a bright, bright sun sunshiney day

cheers peter


Posted in Untitled on 02 Oct, 2011 - 2:51 am

Hi AMG. Welcome to the forum. Maybe better to introduce youself and your husband in "Our Members" or "Currently Suffering" as a new thread, that way you won't get buried by other posts.
Rest assured, being scared is not unusual. There's a ton of information down the left there, have a read, ask questions, we'll do what we can to help.
cheers peter.


Posted in Hello everybody on 30 Sep, 2011 - 3:12 am

G'day Alan, I've stopped smoking twice- first time for four and a half years, this time one week shy of five years. Don't ask why I started again after so long, i'm just an idiot.
It's my own system. If you like, i'll PM you how to do it.

Apart from that- what Heather said. Go through all the info there on the left, ask questions, and between us all we'll try and put you right.

cheers peter.


Posted in Sp02 levels (oxygen levels) on 29 Sep, 2011 - 11:51 am

Yes, Neil. I've mentioned this before somewhere. I'm really sensitive to reduced oxygen levels. Where I work has "dead spots" , from poor design, and it's insta-trigger for me.
Not the same thing as you, of course, but low oxygen all the same. Same story on a long haul flight, in season or not.
It does sound like your lungs might have suffered some damage along the way though. Does the air-con filter the air or change the humidity or density in any way?
Maybe because there's less variation in the temperature, it's easier on your lungs?

"But I always sleep with a fan on and the window open" Bloody hell, Ben. I'm the same, except the window sometime closes icon
cheers peter.


Posted in Hello everybody on 29 Sep, 2011 - 11:13 am

G'day Alan. Welcome to the forum, and sorry you had to find us. Hopefully we'll be able to help you. Yep, stopping smoking did me some good.
cheers peter.


Posted in just how far can you go on 29 Sep, 2011 - 10:38 am

If you think about it Alex, getting an implant when you're not in a cycle means your Neuro won't know if the implant's successful, so he'll want you to stay being attacked, won't he?
Best Wishes, Alex, I hope it all goes easy for you.
cheers peter.


Posted in Just wanted to say HI and apologise for my being MIA! on 29 Sep, 2011 - 10:20 am

Hi Shell, Heather and I were asking ourselves where you were just the other day. Welcome back icon . And only CH people apologize for going through hell. Congratulations to you and Cory, I don't reckon anyone can doubt the strength between the two of you.
Love and best wishes
Peter.


Posted in The answer ive been looking for? on 25 Sep, 2011 - 10:41 pm

Hi OverIt. I can't tell you if you have CH or not, but you want to check out the information on the left there and see if it fits. You could have a combination too.
There's also a lot of information about current treatments both natural and chemical, the more you know the better you can discuss matters with your doctor.


Without wishing to be flippant, get used to trying a variety of medications. There's no absolute treatment for CH (if that's what you have), most of us go through dozens of variants before something helps, and that might not work next time.

One of the great dangers with CH is the potential for "taking the easy way out". Do talk about this with hubby, and/ or professionals, before things get too much for you.

We're also here if you need to ask questions or just vent, although we're not always super quick at responding.
So, that's it from me, try and be strong.
Cheers peter.


Posted in Anyone else's CH go to eleven? on 22 Sep, 2011 - 10:00 am

Hi guys,
been a bit busy over here.
Glad to hear you're ok, Ben. A narrow escape. I'm in agreement with Sara, Heather and the others- rate non CH pain as if you are a non CH sufferer.
Touch wood, i've not seriously injured myself since CH inflicted itself upon me, but a while back I picked up a splinter when I rammed a sliver of parquetry floor horizontally into the ball of my foot.
Being a guy, I figured it would pop out by itself after a while, but after two weeks, when I couldn't put my foot down and the veins in my leg were purple all the way to my groin, I thought, ok, time to see the doc. First he asked why we guys always wait until we're just abut to die before seeking help, then he picked up a syringe of local, and said THIS IS GOING TO HURT. The first jab went between my toes into the ball of my infected foot, the second went between my big and second toes from the top of my foot. He was right, it did hurt, but I was thinking meh, not as bad as a CH attack.

To finish off- Ben, buy yourself some Crocs or the like. You can kick furniture as hard as you like, your toes will be safe. They've saved my tootsies numerous times.

Cheers peter.


Posted in I'm going to get flamed over this but please try it! on 17 Sep, 2011 - 3:59 am

No flaming, Shrek. Ben swears by Aspro clear (i think that's the one), so why not Nurofen Zavance?
Not that I can get my hands on either of them....
cheers peter.


Posted in Untitled on 17 Sep, 2011 - 3:00 am

Yep, I agree with this too. If you think about it, it's the general awareness of a condition that is the main factor.
So, what's the next step?

cheers peter.


Posted in Recent Research on Hypothalmic Involvement on 15 Sep, 2011 - 4:08 am

Hmm. I think the second part of their conclusion is suspect, to say the least. The first part is self evident, give that attacks can occur when one is not sleeping.


Posted in Let the fun begin!! on 08 Sep, 2011 - 3:31 am

Hi Bobby (and Sara),
most people love the start of Spring- not CH people icon

A fizzy drink you say, Bobby. That's a new one on me, but I like a sparkling burgundy, so why not icon
I am joking of course- alcohol is not my friend during my season.

A very warm welcome to you Bobby, good thing Sara picked up on it- I didn't notice.
Good grief Sara. 0.1% of the population suffers and you bump into two others in as many weeks. I've met one ex-sufferer in 10 years...
Cheers peter.


Posted in Psyclobin (hallucinogens as CH treatment) on 08 Sep, 2011 - 3:15 am

I've not had the chance to try shrooms since i've had CH, but I would, in a heartbeat, if I could.


Posted in My Introduction on 08 Sep, 2011 - 3:12 am

Hi Shrek and welcome to the forum. It's sad you have to be here, but i'm glad you found us. I do hope our usually friendly bunch gives you a better welcome than you've received so far.

That's quite a story you've got going there. We have another life long sufferer here in Ben, how you guys coped with childhood and CH has me in awe. As I think it best to avoid treatment p*ssing contests I won't put your list up against Bens, but suffice it to say between the pair of you there wouldn't have been much missed.

The cigarette part of your "abort an attack plan" is hysterical, but hey, whatever works. I quit nigh on 5 years ago and noticed an immediate decrease in attack intensity and duration, as well as other, non CH related, health improvements.

Good luck to you in your battle with yourself and your meds. I believe Ben also had similar experiences- fortunately I can't get a lot of that stuff here in Russia, so i've been spared that particular load.
Best Wishes to you,
Cheers peter.


Posted in Untitled on 05 Sep, 2011 - 2:46 am

G'day Ben and all,

Ha. Some of these are great.
"So what's wrong with you?"
"I've got erythromelalgia of the head"
icon

But can you imagine staggering out of the disabled stall of a public bog and having to say it's been because of a "Horton headache". You wouldn't get out alive.

The difficult part about finding a name, is adequately describing the condition without really knowing the cause. All the suggestions so far completely skip the cluster aspect. Staying as close to the original as possible, something like Cluster Head Pain Syndrome. Better copyright that, Roger. icon

Cheers peter.


Posted in Quit SUGAR! on 04 Sep, 2011 - 3:46 pm

Gabrielle, I do apologise. I knew as I was typing it, I was sounding like a lecture.

I like when you get to ..."but I have come to realise that the consumption of anything with added sugar, or even concentrated fruit sugar is doing me harm... " ,
I agree- far too much of our lives are processed, Gabrielle.


Posted in Thank you. on 27 Aug, 2011 - 4:18 pm

Hahahahahaahaha. Hysterical laughter fades off into the distance...

Rick- you must get used to something very fast- Cluster Headache is rare, and so is the Doctors that know anything about it, so YOU need to start learning about your medication.
It's a pain, and a hassle, but it might save your life. Any quack who says ANY med has no side effects is a quack. And saying a corticosteroid has no side effect is just false. borrowed from one of the better med sites out there thanks to them :

Here's a list of side effects for Prednisone:
headache
dizziness
difficulty falling asleep or staying asleep
inappropriate happiness
extreme changes in mood
changes in personality
bulging eyes
acne
thin, fragile skin
red or purple blotches or lines under the skin
slowed healing of cuts and bruises
increased hair growth
changes in the way fat is spread around the body
extreme tiredness
weak muscles
irregular or absent menstrual periods
decreased sexual desire
heartburn
increased sweating

Some side effects can be serious. If you experience any of the following symptoms, call your doctor immediately:

vision problems
eye pain, redness, or tearing
sore throat, fever, chills, cough, or other signs of infection
seizures
depression
loss of contact with reality
confusion
muscle twitching or tightening
shaking of the hands that you cannot control
numbness, burning, or tingling in the face, arms, legs, feet, or hands
upset stomach
vomiting
lightheadedness
irregular heartbeat
sudden weight gain
shortness of breath, especially during the night
dry, hacking cough
swelling or pain in the stomach
swelling of the eyes, face, lips, tongue, throat, arms, hands, feet, ankles, or lower legs
difficulty breathing or swallowing
rash
hives
itching

NO side effects huh?
Always check for yourself. Two different places might prescribe you the same product but under different brand names. They won't know this, so you must start checking that sort of stuff for yourself- it really could be a matter of life or death. Not trying to scare you or anything icon
On to Maxalt (Rizatriptan). One of the triptan family i haven't tried, so no comment from me. New drug it might be, Rick, but you are new CH patient, so you need to do the basic stock standard treatments first. That's Imigran (Sumatriptan) The first of the triptans developed for Migraine, and by good luck, worked for cluster headache.
With the tablets Imigran, not Maxalt (probably a 50 mg), take it with a sip of water as soon as you feel an attack start. Some people slam dunk an icy cold can of red bull and say that can stop an attack too.
It's like reading an medical encyclopaedia, but dig into Ben's posts for really valuable info.
Anyway, that should be enough for you to go on with for now, Rickicon good luck
cheers peter


Posted in Untitled on 27 Aug, 2011 - 1:33 pm

You can't use chronic, Matt. It's a status, not a severity. Hmm. Not sure i dig that..
"so what ails ye, lad?" "I've got vascular head pain". Uh-huh.
i agree with you though, it's a pain it the (eye)balls to explain what's wrong.
Good luck with changing a medical term, it's a fairly rare event. Wnat is the Latin for "red-hot ice pick through the back of my eye-ball?


Posted in Thank you. on 27 Aug, 2011 - 12:05 pm

G'day Matt.
Respect, sir. and tough break on the implant not "taking".
You motivated me to drag out my first instructions, which read like this:
( these are Dexamethasone, not Prednisone but roughly the same shit.)
Tablets at 50mg, 6 now. , then 6 per day, evening after eating for 5 days, then 5 tablets for 5 days 4 for 5 3 for 5 etc until 1 for 10.
I put on 18kg in two weeks.
I went back to the dude, and had to do the whole regime AGAIN! The only good thing, is he'd put me onto Zaldiar, which is Tramadol, so i wasn't scared about pain.
He DIDN'T tell me about Imigran, but hey, his MRI machine was available and almost free.


Posted in Left or right sided on 27 Aug, 2011 - 11:43 am

LOL, Rick, needing sleep is something we all get used to after a while.

No list yet. We've only just really started the process.
As to The out of body feeling- I can say sort of, but it's not like seeing myself lying on the bed, or anything like that.


Posted in It begins.... on 27 Aug, 2011 - 11:26 am

G'day AD1210,
bloody hell, I thought i's opened my cluster diary by mistake- your story is so famliar.

Taking too much paracetamoi, Ben, was what really motivated me to get help. Here they're Solpradeine not Panadeine but same thing. I was downing 5 at a time, then 2 hours later 2. I knew it was too much paracetamol.
That was when I discovered that if I drank enough alcohol fast enough, it would go past the "trigger an attack" effect, but, the drawbacks were immense. One thing I did discover, is I never get an attack on a hangover day. Ever.

Good luck to you, AD1210. I do hope for your sake you don't start associating Endone and CH together. No good can come of that.
Ask any questions, read the blurb on the left. If you want help, we'll do what we can.

Cheers peter


Posted in Thank you. on 27 Aug, 2011 - 11:01 am

Wow, I knew Prednisone was nasty, but to give you a second case of chicken-pox? I thought we could only get it once? Or did you have mild, semi doses or something, Ben?


Posted in Chronic Pain as a recognised condition on 27 Aug, 2011 - 9:26 am

I know i'm going to sound negative here, which i don't overly mean to, but geez Ben, your first few sentences demonstrate why I preclude anyone buggering around with my bits and pieces until it's a given
In hindsight, it sounds more and more likeliy Matt was a bit of a guinea pig, but hey, if the Wright Bros didn't strap themselves in and have a go, we'd still be sailing round the world, so thanks for being a pioneer, Matt, and good luck Ben. This'll be a new kind of wait for you, still pain at the end but good.


Posted in Thank you. on 26 Aug, 2011 - 2:03 pm

G'day Rick, there's some disturbing elements in your messages, i hope we can bring you some peace of mind.

Most of us have survived by not staying in our rooms; but getting out there and trying to find out why on earth this started on us.
"only taking x quantity" is not the right attitude, Rick. Be aware of what you take with Cluster Headache, because in blink of an eye you'll be taking a hatful, and some might conflict. I'm NOT any sort of qualified medical person so treat the value of my advice as it's cost- nothing- Ditch the Prednisone. Very slowly, under your Doctor's guideance. After 8 weeks it's time you were off it. You should have Imigran tablets, sprays, or injections by now. The injections can stop an attack in 5 minutes.

You don't need a support crew, Rick, You need you to keep a strong head, Rick.
We know your pain, don't allow it it beat you.

I'm peter, any time i can help, just scream.


Posted in Thank you. on 25 Aug, 2011 - 1:48 pm

"you are coming to Australia" Hey? where did you get that from Heather ?


Posted in oxygen availability on 25 Aug, 2011 - 1:42 pm

Oh you old smoothie.


Posted in Left or right sided on 25 Aug, 2011 - 7:56 am

G'day Rick.
Welcome, sorry you had to find us.
Hey, Do your arm tingles happen before the attack to give a warning?
We're starting to cross-reference symptoms.
Cheers peter.


Posted in Chronic Pain as a recognised condition on 24 Aug, 2011 - 4:16 am

[quote]Dusker said:
"Matt and Ben
Powerful words gentleman.

From powerful gentlemen, Heather. And include Barry in there too.
It's a rare disease, and it seems to hit rare people (that's you too, Heather. Your gentle encouragements have, i'm sure, been invaluable to countless new menbers of this forum).
Good luck, Matt. You too Ben.
I'm on tenterhooks waiting the change of season, but hey, it might not show.
Best of luck to all, peter.

Ben said " For me it was a case of "When you got nothin' - you got nothin' to lose".
I just wanted to say,great song, especially the Rolling Stones' version on their "Stripped" album.


Posted in Oxygen again on 21 Aug, 2011 - 3:06 am

Hi Kim, welcome to the forum, good and bad to see another sandgroper here. As I understand it, all you have to do is open an account with BOC to be able to order medical oxygen (will take a week or so).
Barry T Coles is the man to turn to (and dare I say it), the full bottle on oxygen. icon Geez, that's atrocious- go to your room...
cheers peter


Posted in Untitled on 17 Aug, 2011 - 2:56 am

No news is good news, i hope?
Best of luck to you Matt.
Cheers peter.


Posted in Pituitary gland question... on 14 Aug, 2011 - 6:43 am

Hi Ben,
I know what you mean about media reports- I stopped believing them the first time I went overseas (to South Africa) in1989. From what the media was saying, all the blacks would be jumping into the gutter when a white walked by, separate doorways, etc etc. Nothing could have been further from the truth. I got there two months before F.W. de Klerk was elected, so P.W. Botha was still president, and as staunch an Afrikaaner as could be.
I first worked at the Wild Coast casino, at the edge of the Transkei. There were black staff, white staff, cape coloured staff all working together, no separate facilities or conditions. Then I went to the Ciskei and it was the same. I did see media reports (BBC) which told such a pack of lies it was breathtaking.
Since then i've lived and worked in Israel and Russia, and by and large the slant on the story always depends on who is telling the story. I've seen the same story told on the news by the BBC, CCTV (Chinese news service in english), and then Euronews, and it's difficult to tell it's the same story sometimes.
The medical system in Russia is quite good for those that have registration, or that have enough money- say 5 or 10 dollars- to leapfrog their names to the top of the list, then you'll get free GP and hospital admission. The level of CARE you get then depends on many factors- who you are (famous family, influencial friends,got money, medical insurance etc). In some places you will need to buy your own medication, bandages etc.

It is not good to be a poor nobody. You will be admitted to hospital, but could die on a guerney in the corridor.
It took me 4 years and a half a dozen doctors to be diognosed with CH. My first Neurologist didn't tell me about Imigran, I only found out about that from this site (THANKS ROGER icon) Possibly saved my life.
I've already worked on getting my medical records translated and in order before lobbing back in Aus, but actually getting myself into the system hadn't occurred to me- good thinking Ben.
Ha to same day MRI- I went from GP to Neurologist, then MRI, then back to Neurologist in about 6 hours. The longest I waited was in the traffic jam getting to the hospital. The way you guys talk that would take weeks in Aus. My MRI was also to confirm no "space occupying lesion", same as yours. After that they were sure it was CH.
I have to have a medical each year (which I do privately, costs about $500) for my business visa . I have a GP consultation, drug screen, VD/AIDS screen, and chest X-ray (TB screen), last year I got an appointment in 2 days then was in and out of the clinic in 45 minutes. All done, results and certificates available after 48 hours.
Bizarrely, my neurologist was smoking cigarettes and swilling vodka during my consultation- gotta love Russia icon

Cheers all, peter.

go "green" in your profile Ben, worth a try...


Posted in Quit SUGAR! on 14 Aug, 2011 - 3:17 am

Hi Gabrielle,
i've heard this theory before,and in fact another menber also told me the same thing and how it helped him.
Just one point though- table sugar is sucrose. There are (from memory) six sugars. Glucose (dextrose), sucrose, fructose, maltose, lactose and galactose, basically three sugars and their inverse. Somebody with more energy than me can google it and correct me- this is from my college days some 27 years ago.
Most foods that have high aounts of sugar added have the fructose variety because it is cheap to manufacture. Read the ingredient list on products and you will likely see High Fructose Corn Syrup. Avoid this if possible. Fructose in itself is not bad (think natural sweetness of ripe fruit) but HFCS is an artificially manipulated product, fairly recent in our diets, and best avoided.
I think you're correct though, Gabrielle, in cutting out sugar. It's an unnecessary part in most of our diets.
And congratulations on being CH free icon

Cheers peter.


Posted in Pituitary gland question... on 13 Aug, 2011 - 3:14 am

LOL Ben, this would be hilarious if it wasn't so scary. I haven't lived in Perth since 1993 and Aus since 1997, so i'm unfamiliar with the system now.
Here in Russia there is free treatment for the masses, but i'm told they have to make a small "donation" or they get to wait awhile too. There's free dental too, but a tooth will be hoiked out rather than filled; it's quicker and cheaper.
I'm not eligible for free cover so i've always paid, but even for a specialist the wait is negligible, like same day. When I needed an MRI scan, the appointment was made for the very next day, and cost me just over $100.
Good grief, it's no wonder there's unprecedented amounts of opiates being prescribed by GP's if it takes 18 months or more to get to a PMU. It's this sort of horror story that makes me wonder about heading home again. Not to mention Topamax and Imigran is OTC here, no need to sweat on getting a prescription first.


Posted in Pituitary gland question... on 12 Aug, 2011 - 10:23 am

G'day Lauren and Stretch.
Lauren, I hope your GP realised the list of meds is not meant to be taken all at once icon I think it's HORRIFYING you're having to wait 3 months to see a specialist, obviously i'm out of touch from too long out of Aus.
Stretch, sorry to hear you're suffering again, I hope your bout is short and not too savage.
Cheers peter.


Posted in From Circadian Rhythm to the Hypothalamus on 12 Aug, 2011 - 10:10 am

Hi Ben. Well, i've just done a quick search on testing for hypothalamus dysfunction, as opposed to function, and there are as many different tests as there are functions controlled by the hypothalamus (which stands to reason).

The one thing that stands out to me, is that in all of this we are looking for A cause for CH, when in actual fact there might be different causes for different people, which could well explain why some treatments work for some people and not for others.

Does this help at all- well probably not, but I do think that NOT being trained specialists is an advantage in that we're not constricted by generally accepted theories or practises, and so are more likely to think "outside the box" because we don't have that box in the first place.
Cheers to all, peter.


Posted in Untitled on 11 Aug, 2011 - 3:31 am

Good luck to you, Matt.
Cheers peter.


Posted in X Cluster Headache Sufferer on 11 Aug, 2011 - 3:29 am

Thanks anyway Michael, but I come to this site for that. Why not put your story here, as others have?


Posted in Fantastic website for a CH newbie! on 11 Aug, 2011 - 3:25 am

Hi Ben and all.
re: Red Bull, it's my understanding the taurine in RB is the good guy.
There is some evidence to suggest taurine does plenty; perhaps some of the actions also cross over to assist CH sufferers, although i'm unaware of any specific studies on CH and taurine.
I've never used O2, as medically it's not available for home use here in Russia, but if I had the chance I would.
I've gone back over previous treatments in case a combination wasn't tried, or circumstances weren't right, or whatever. Surely O2 is worth another try for you, Ben?
As we know from Matt's case, an implant might not lead to less meds, just different ones.


Posted in Wikipedia?? on 07 Aug, 2011 - 3:30 am

Hi Kazza2, Guy, Ben and everyone,
welcome too, Kazza2, very sorry you had to find us. As has been noted previously, not all info ends up in the seemingly logical place, but trawl through and you'll find a heap of good info to arm yourself with for your meeting with your Neuro.

You're so right about dyed on doctors, Ben. I saw one in South Africa when I was on holiday, and he went crook at me for supposedly being a smartarse, and he qualified as an M.D. in 1963 blah blah blah. So I asked if there'd been NO advances in CH treatment since that time, at which point the consultation ended icon.

Thanks Guy, but not my babe in arms. I'm of the "happy to hand them back at the end of the day" set.
I'm also getting anxious- Autumn will be starting in 6 weeks or so, which usually heralds the start of my worst bout, so it's time to start stocking up on Imigran again. Rats.
cheers to all, peter.


Posted in Wikipedia?? on 06 Aug, 2011 - 3:27 am

No worries, Ben, I was just concerned you'd fallen out with your guru.
Good thing his folks didn't name him Will...


Posted in Wikipedia?? on 05 Aug, 2011 - 3:08 am

Had a rough day, Ben? Your third paragraph there is a touch acerbic, even for you.
icon
Personally, I think if someone feels that giving themselves a helping hand works, then have at it. If nothng else, it's a blinder of an excuse...


Posted in Wikipedia?? on 04 Aug, 2011 - 3:47 am

icon. Wow, Chris, that's a helluva post to come back with.
I don't know I could swing into action, or concentrate on the job at hand icon, when an attack is imminent.


Posted in Circadian Solstice??? on 25 Jul, 2011 - 12:48 pm

Hiya Ben,
very glad you're cautiously optimistic, I know the feeling well; dread mixed with elation.

"...diaries, my record is consistently inconsistent." By who's definition, Ben? Maybe your body clock doesn't have 24 hours- perhaps it's got 27 hours . icon
I sometimes wonder if having to alter natural rythyms to conform to society's requirements isn't enough to knacker an hypothalmus by itself.
I'm also relieved you noticed a "pop", Ben. Now i know i'm not nuts icon

Respect to you, Matt, for trying the implant. Matt, in your place, i'm not sure i'd be so brave.
And yet i still can't shake the feeling that's treating the symptom, not the cause. I'm holding thumbs for you mate, i hope it works for you.
Cheers to all, Peter


Posted in Circadian Solstice??? on 21 Jul, 2011 - 8:51 am

G'day hadenough,
not exactly circadian rhythms or boby clocks, but i found when my neuro put me on Dexamethasone (more or less the same as prednisone), all it really did was interrupt my cycle, and then alter the times of my attacks, so that instead of being on top of an attack i had no idea when one would strike. Between that and putting on 18 kg in two weeks, i've since decided i'd rather eat someone elses toenails than touch corticosteroids again.
I'm sure your students found it funny when you were dropping your r's in the classroom icon, why is a different matter...
Ben, cheers for the heads-up on the book, i'll try to find it later.


Posted in Untitled on 13 Jul, 2011 - 3:33 am

Geez Matt, You are a guinea pig. They're using you to work out the best way to attach one of these things to a human! It just goes to prove the lengths we'll go to avoid CH. Good luck to you, Matt, I hope they get it right before they turn you into swiss cheese.
cheers peter


Posted in Thankyou on 13 Jul, 2011 - 3:26 am

Bewdy- good to hear, Paul. This is the sort of thing that keeps us all going.
It doesn't sound right to say "with luck we'll never have to see you again", but you know what I mean icon.
And just because you're green doesn't mean you have to stay away - a problem shared, and all that... you can lend support through positive experience, no?
Best Wishes for a long break to you.
cheers peter


Posted in Pituitary gland question... on 09 Jul, 2011 - 3:53 am

Hi Lauren,
Your mum is right- you should see a specialist. Whether or not they will be able to provide answers is another matter, but they should be able to eliminate areas of concern too.
Eating regularly (and sensibly) is important for physical well-being. I've found if I eat fatty foods before sleep a CH attack seems worse, but that could just be absorption of medication being hindered, I don't know.
My advice to you- unqualified as it is- is to look after your health as best you can. Sensible diet, exercise and fresh air, so at least you know you've eliminated as many potential causes as you possibly can. That at least will give your specialist/ neurologist something extra to go on with.
Best wishes to you Lauren, and chin up. Between us all we'll get you through.

Cheers peter.


Posted in Circadian Solstice??? on 09 Jul, 2011 - 2:54 am

Hi Ben, Lauren and all,
I'm sure you're correct, Ben, in thinking we're not singlehandedly going to crack the cause of CH, but by putting all known and surmised causes together we're creating a huge database of experiences for further analysis.
Now all we need is someone to start collating and cross -referencing the information for commonality. Bags not me icon
Definitely not a Saturday arvo task, that one, but surely a worthy recipient of a grant. Anyone know how to go about applying for one?


Posted in Circadian Solstice??? on 08 Jul, 2011 - 6:57 am

I suppose I should also mention I work night shift, exclusively so, and have done for more than 25 years. In fact I got into the hospitality industry (and by default, the gaming industry) because i'm a night shift person.
I'm the third of five children (and a twin, breech birth), all born before the oldest was 5. My brothers and sisters are normal- me not.
At the end of the day when my poor old Mum was just wanting to collapse into a chair, I would spark up and start charging around, and stay up half the night- this when I was two years old. "PLEASE go to sleep, Peter" croaked Mum, but no chance of that. I must have driven her to distraction.
I knew very early on that night time is the right time for me, but here in St. Petersburg that can mean I don't see daylight for a week or more in winter, which doesn't particularly bother me, except I can sometimes have difficulty nodding off to sleep if it's not daylight outside.
Where Circadian Rhythm and bodyclocks fit into my particular case I don't know, but they're surely different to most people. It will be interesting to see a medical viewpoint on Circadian Rhythm.


Posted in Untitled on 03 Jul, 2011 - 4:44 pm

G'day Cleo,
tell us about Mexico Beach- if only to take your mind off reality. Very sorry to see you're suffering.
Hmm, so if it's not approved by the FDA then surely any medical insurance companies would cry foul and not cover the procedure? That's not something i'd be comfortable undertaking in the U.S. of A .
Regardless, good luck to your friend, and you.
cheers peter.


Posted in Circadian Solstice??? on 03 Jul, 2011 - 4:35 pm

G'day Ben and all,
i'm late picking up on this, it's high summer here and everyone's working flat out.
Grannysa, (Sara), did you feel a "pop" in your head , or anything like it, when your cycle stopped? Just curious. Sweet to hear (and see) you're green icon

I absolutely don't fit a solstice, but i do a change of season. Specifically the start of Autumn and the start of Spring- four to six weeks Autumn, 6 - 8 Spring, as it was. End of October, and start of April. But then I missed a year and a half (effectively 3 bouts). I'm optimistic by nature, and when a bout stopped i'm sure i felt it; but missing a season had me confused. Just delayed, or runs on the Julian calendar, or something, i don't know. Northern hemisphere, perhaps.
Interesting subject, Ben, i'd like to pick your brains sometime.
cheers peter.


Posted in Forgive me,the devil made me do it. on 03 Jul, 2011 - 4:04 pm

These were sent to me by a good friend in South Africa, exactly one year ago. He knows a laugh, and trying not to take everything too severely, is the way to get by. I do apologize if these jokes are outrageous, it's been a while since i walked an Australian street.



Q. What's a mixed feeling?
A. When you see your Mother-In-Law backing off a cliff in your new car.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Q. What's the height of conceit?
A. Having an orgasm and calling out your own name. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Q. What's the definition of 'Macho'?
A. Jogging home from your vasectomy. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Q. What's the difference between a G-Spot and a golf ball?
A. A man will actually search for a golf ball ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Q. Do you know how New Zealanders practice safe sex?
A. They spray paint red X's on the back of the sheep that kick! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Q.Why is divorce so expensive?
A. Because it's worth it!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Q. What is a Yankee?
A. The same as a quickie, but a Guy can do it alone. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Q. What do Tupperware and a Walrus have in common?
A. They both like a tight seal.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Q. What do a Christmas tree and an RC Priest have in common?
A. Their balls are, in the main, just for decoration. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Q: What's the difference between purple and pink?
A. The grip.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Q. How do you find a Blind Man in a nudist colony?
A. It's not hard.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Q: What's the difference between a Girlfriend and a Wife?
A: 45 pounds.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Q: What is the difference between medium and rare?
A: 6 is medium; 8 is rare.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

OH, don't groan. You know darn well you're going to send this on to somebody.
Live well, laugh hard, & love dearly! (Harry)

Regards to all sufferers, Helpers, and concerned friends and family.
cheers peter.


Posted in Dizzy spells ... on 12 Jun, 2011 - 3:20 am

Hi Lil,
how frustrating for you and Ben- as if CH isn't bad enough by itself.
10L a minute is on the low side for O2 therapy, is it helping?

Is Ben on any meds for controlling blood pressure? Are the dizzy spells happening without a CH attack, or only at the same time?
When was the last time Ben had an MRI or the like? Not wishing to be alarmist, but maybe wise, just to be sure nothing else is going on. I suppose after a week in hospital that has all been done? Has anything else changed from Ben's last episode?
Not a lot of light shed there, i'm afraid, but good luck to you both.

cheers Peter.


Posted in New and hopeful on 20 May, 2011 - 5:00 am

Hi Jane,
welcome to the forum, and my sympathy for having to find us.
I too am delighted to hear a GP picked up on your symptoms so rapidly; it will save you a whole heap of anguish not having to convince someone what you're going through.

Do read up via the information stored down the left, there's a lot of good stuff there. Keep a track of what you're prescribed and follow your GP's directions, but also cross-check for yourself. Ask questions, vent if you want to. We'll help as much as we can.
Best Wishes and cross fingers you don't get any more attacks.

cheers peter.


Posted in do you feel scared in the day... on 20 May, 2011 - 4:19 am

Hi Lauren,
welcome, and sorry you had to be here.
No, you're not the only one frightened of going to sleep, i'd be surprised if any of us haven't delayed the inevitable at some stage or another. Unfortunately it does tend to become a vicious cycle, as lack of sleep does seem to ramp up the intensity of an attack (at least in my case).
Vent away, Lauren, as much as you like. Between us we'll try to help you as much as we can. Ben and Shell are the go-to's for the academic stuff, their wealth of knowledge and experience is invaluable to us all. Heather (Dusker) keeps everyone's spirits up but is away for a bit, and I chime in when I can, but it's the busy season here so that's less often than usual.
Try and stay positive, Lauren, which is easier said than done, I know. The medical profession is doing more and more research on CH every year, so we're not the forgotten ones as once was, but by and large sufferers know more about CH than the average GP so be prepared to tell your GP you want referrals to specialists if they're not inclined to oblige, and don't be shy about seeking a new GP - most of us go through a few before we find one that is proactive.
Best Wishes, Lauren, and don't lose heart.

cheers peter.


Posted in Taking a breather! on 08 May, 2011 - 4:09 am

G'day Ben Heather Matt Squid and all,
a bit late, but best wishes for a great break, Heather. I concur with Ben; you're the Best
icon.
G'day to Squid, a sandgroper eh? Perth hills used to be home for me. Very good the acupuncture did the trick for you, i've not tried it (and wouldn't over here) but might give it a go back in Aus. Like Ben says, if standing on your head in a cool room helps, go for it. I hang upside down, which seems to help, heaven knows why.
We're settling into spring here and my bout is over as defined by the glass of beer test. I must admit it was truly frightening for having returned after two years without a real bout, but ultimately it was only three weeks long, with one really bad week, and even then the worst attack peaked around a strong 7.
Cheers to all, good luck and best wishes.
Peter


Posted in Untitled on 25 Mar, 2011 - 4:53 am

Also WOW. Well written, Ben.
Dday2, do check out the treatments list on the left there, maybe something will work for you, or at least help. Buried somewhere in the forum is a post from a guy up Cairns way (Kuranda?) who says he radically changed his diet and stopped getting attacks. Who knows? As Ben said, learn as much as you can. I hope things go well for you and yours.
cheers peter


Posted in Untitled on 16 Mar, 2011 - 7:17 am

Hi Ben,
I think you're entirely justified your rant. Your point about no visible problem therefore no disability in particular, as i'm sure most of us have experienced that at some time or another. Pipe dream or not, your knowledge and experience would make you an ideal representative for a CH awareness group, should such a thing ever develop.

Keep doing what you're doing, because in exposing us to your knowledge, you're enabling us to expose that knowledge to those we know, and slowly but surely CH will come to be understood by the general public.

cheers peter.


Posted in Untitled on 14 Mar, 2011 - 5:15 am

Thanks very much for these links, Ben. Much appreciated.
cheers peter.


Posted in Untitled on 10 Mar, 2011 - 10:41 am

G'day Ben, Heather and all,
I've been using a BEKO brand air purifier thingie for a few years.Does all the same stuff, and yes, I feel some benefit. Possibly just better air quality, but as you say- i'll take a 5% improvement any way I can.


Posted in Untitled on 03 Mar, 2011 - 3:54 am

Hi Ben.
Very glad to see you back. May I extend a personal apology for having offended you, it was very much unintended.
cheers Peter.


Posted in Untitled on 02 Mar, 2011 - 10:25 am

LOL Hi Heather. I'm not as weird as all that, honest. The swing table thing was quite popular in the middle '80's and I tried one then, but i's only because my buddy was moving to a smaller house he dumped it at my place.
Not wishing to be gross but it has to be asked- WHY do our noses run so much during an attack? Runny nose is normally the result of an infection or invasion. CH is neither, so what causes the snot?
When I started getting CH, nobody could tell me what it was, and to make matters worse I had to try and explain things in Russian. It wasn't until I stumbled into an untried clinic with my head exploding that I was told what it was; Funnily enough, by an Australian doctor named Bruce. Swear to God. The only Aussie Bruce i've ever met. But it wasn't until three years after that, when I found this site, that I heard of Sumatriptan. Three Neurologists and one GP didn't tell me about it.
Apart from that, I figure if the boffins don't really know what's going on, it's up to us to explore EVERYTHING and isolate what works. Like the getting slaughtered on alcohol thing. Why do I NEVER, and I do mean never, get an attack the next day? There must be a reason and if that reason can be isolated we're on a winner. For the sake of my liver I don't indulge as before but the fact remains- hangovers and CH are mutually exclusive. Well, for me anyway.
I'm also a cold person, Heather. A hot room can trigger me, especially if it's artificially heated,but I always have put that down to air quality. As before, who knows? I don't know about hurting less, but if we keep educating ourselves we're generating Hope, and that can't be a bad thing.
First day of Spring here, also not a bad thing.

Cheers to all,
Peter.


Posted in Untitled on 02 Mar, 2011 - 5:20 am

G'day Woraman. I used to smoke pot way back when but I ddn't have CH then. I had a smoke last time I was back in Oz- it didn't impact my CH in any way but was rather unpleasant. In the old days we got "bush weed", good for what ails you and a giggling good time. The last time, I couldn't believe the strength of the smoke and the dark brooding mentality that went with it. No giggling or fun at all.
If you do try it, don't go for the heavy stuff, it's no good for your head at all.

Cheers Peter.


Posted in Untitled on 02 Mar, 2011 - 5:08 am

No trauma in my life, but I contracted encephalitis as a toddler.
I was a drinker and smoker (fags from age 11), now a non-smoker, and I couldn't believe the difference stopping smoking made to my CH. Much less intense and shorter in duration. I came up with my own method for stopping smoking, if anyone's interested i can write it out for you.
When I was chronic, I also discovered that if I drink fast and heavy for half an hour (then normally) then an attack wouldn't happen, and for whatever reason, the next day I would NEVER get an attack. As this involved me drinking a litre bottle of vodka every three days, you can understand I do NOT recommend trying it yourself. At the time, I would have shot myself if I'd of had a gun, so I wasn't bothered by the drinking.

I've been green for ages, only just recently become red. In my flat I have one of those inversion table things that you swing upside down on. During an attack last week, I thought "what the hey" and jumped on. Breathing in through nose and out the mouth, swallowing copious snot, I went pain neutral in 5 minutes and the attack was over after 10 mins. I'd already taken Imigran, so I couldn't say which was what. I've since "had a swing" 8 times, 6 times without medication. Mixed results, twice I couldn't stay upide down long enough, but the other times the attack was aborted. One of those attacks was from sleep and was a strong 7, really nasty. That was killed in 10 minutes. Really noticeable too, is how much snot is produced (sorry for the graphic description), and how much easier it is to clear the sinuses, and therefore breathe more cleanly when upside down.
Is something really happening? I don't know, but it seems to be working for me so i'll keep doing it. Not so easy to lug the apparatus around though, so I can't see it catching on, but if you're ever in the position to try it, give it a go.

Cheers Peter.


Posted in Untitled on 25 Feb, 2011 - 10:10 am

I'm afraid i'm responsible for Ben's departure. I wrote him the PM published below- obviously I was too heavy handed about it.
It was not my intention to alienate him, and my apologies to all, as Ben's information was / is invaluable.

Peter.

FROM: saintpeter, - 24 Feb, 2011 - 9:27 am
SUBJECT: re. To Peter


G'day Ben,
well, you're correct- your latest post IS likely to raise debate. Do us all a favour though, Instead of ripping into a poster about the veracity of their information, qualifications etc, just hit the "report" button eh? Let us take it from there.
Cheers Peter.


Posted in Detox? on 13 Feb, 2011 - 11:48 am

Our bodies are generally pretty quick to alert us to an imbalance. Despite this, a lot of us ignore the warnings and carry on mistreating ourselves. Western medicine generally treats the symptoms and ignores the underlying cause i.e. the imbalance.

CH may or may not be the physical manifestation of such an imbalance, but that is not known. Until we find the root cause of CH, we need to freely share information.

Especially as i'm now suffering
icon


Posted in Leaving for a few days on 13 Feb, 2011 - 8:40 am

Best wishes, Heather.


Posted in Untitled on 09 Feb, 2011 - 5:04 am

Hi all. I take a different approach re: meds and specifically Topamax. I also suffered the side effects of suicidal thoughts, wanting to ditch my clothes in the street and go naked etc icon but kept telling myself it wasn't me, it was the meds.
As soon as I felt the CH attacks were under control, I tapered off until I was on the minimum to keep an attack at bay. If ( as has happened recently) a cycle seems to be starting, I ramp up the dose until control occurs, then ease back again. Partly this was due to cost, but I also realized it would help minimise toxicity. So far, touch wood, it's been effective.
Cheers Peter.


Posted in Untitled on 06 Feb, 2011 - 4:25 am

Wise words indeed, Ben. I do this myself; a habit learnt from my father.

Cheers Peter.


Posted in Untitled on 04 Feb, 2011 - 9:33 am

G'day Ben.
It's been very interesting reading your posts, and I salute you for hanging in there so long.
I'm yet to try o2 as it's not available here in Russia, but i've had nagging suspicions about air quality and CH for a while.
I do occasionally stick my head out the window to breathe cold (read REALLY COLD) air, and while it does seem to lessen the pain I can't say it aborts an attack.
One of the things that annoys the hell out of me here, is that in winter all the buildings in the city are super-heated by (state controlled) radiators, and nobody will open a window regardless of how hot it gets. The hotel where I work has a place which will trigger an attack in me almost instantly, and i've always put it down to that being a stagnant corridor with zero circulation and over heated bad air.
I also have noticed I almost always have an attack on a long distance flight, regardless of me being "in season" or not, which i've also always put down to poor air quality. Standing in the stewardesses area usually puts me right in those cases, as the air seems to be much fresher and is certainly much cooler.
Thanks for your insights, Ben, and keep them coming. I'll be trying Aspro in the future too, if I can find such a thing here.
Cheers Peter.


Posted in Untitled on 19 Jan, 2011 - 9:02 am

Hi Heather, very sorry to hear you're unwell. My very best wishes to you, and I hope everything goes well.
Your new Avatar is delighful too, a pleasure to see.
Hugs and kisses,
Peter.


Posted in Untitled on 16 Jan, 2011 - 4:52 am

Hi Gabrielle,

Wow, you've certainly had the pharmacy thrown at you; makes it difficult to isolate what is working and what is not.
As with Guy and Heather, I use Sumatriptan or Zolmitriptan to abort an attack. I'm not fond of the nasal spray, and the injections aren't available here in Russia, so tablets it is for me. I find if I take one at the first sign of an attack (a peppery tingle at my forehead, above my left eye), then the beast usually is controlled before he gets too out of control.

I had a long slow build up to CH, not a violent beginning like you.
When my Neurologist first put me on Prednisone, it was for 30 days,and then when he wasn't satisfied with the results, for another 30 days. All it did for me was alter the times of my attacks, sush that there was no longer a rhythm. It took me two years to get my weight back under control, and nothing on this planet will induce me to use that drug again.
It's interesting you mention Dexamphetamine reducing your attacks. I was trialled on one of the ADHD drugs years ago (without knowing which one) and experienced immediate relief. Unfortunately I then had to come back to Russia, so the trial ceased.

Re: water. Try drinking huge amounts all the time, not just when you feel an attack coming on, just remember to replace the vitamins and minerals that amount of water flushes from your system.

Lastly, re: the teeth thing. I have a similar sensation, but i've always felt it as a sort of inner ear blockage, and I often feel a "pop" at the end of an attack. My Neuro basically ignored the information...

Good luck to you,
cheers peter.


Posted in suicide headaches on 16 Jan, 2011 - 4:15 am

Hi Irene. So the Neurorolgist's diagnosis was purely based on "females don't get cluster headaches"? How incredibly frustrating for you! As Dusker has said (and we all unfortunately know), you have to arm yourself with information because most of the time you will know more than your Doctor. Keep good records of when attacks hit and what, if anything, may have triggered it to demonstrate you are pro-active about your condition. Then keep trying until you find a Doctor who is willing to take an interest in your case ( I think I went through 5 ).
Then you must just be strong, be positive, and KNOW that between all of us we will come up with a solution eventually.
Best wishes to you and your family,

cheers peter.


Posted in Untitled on 15 Jan, 2011 - 8:11 am

G'day Guy, my apologies to DolphinLady too for the hijacking. Yes, you will have an acclimatisation period when you increase Topomax dosage, but it will not be as dramatic as when you first started taking them. ( I was very much reminded of my college days, if you catch my drift ) I would ask about increasing the dosage now, as you have had relief which has now waned.
I went from episodic to chronic and back to episodic, but have only ever been left sided. I have heard of people going from left to right, but not within a bout.

Good luck, and i'm looking forward to good news icon

Cheers Peter


Posted in Untitled on 25 Dec, 2010 - 10:07 am

G'day Trevor, and welcome to the forum. I grew up just up the ridge from you, in Darlington.
You're obviously an old hand re: cluster headaches; with a bit of luck we'll be able to find you something new to help.
If by being a little bit mad you mean a little bit individual, I couldn't agree more. We're a rare lot, so we may as well celebrate it. icon
I'm a fan of cooking too, and i love cast iron ware. You get a work-out when you're using it, and don't have to wash it afterwards. Mind someone doesn't scrub out your skillet when you're not looking and destroy the cure- it'll take months to get right again.
Best Wishes to you,
cheers Peter.


Posted in How to use imigran injections? on 25 Dec, 2010 - 4:53 am

2012? Geez, the years ARE going faster icon
So how you did you get the nickname Satan, or don't I want to know ? No worries, so long as you never meet your namesake, it's cool. icon
I'm curious as to why your doctor doesn't put you on oxygen straight away. It works for a lot of people, and is certainly better than taking any chemical medication as far as your health is concerned. Drug companies don't make a quid out of it though, but I hope that's not the reason.
Good to hear you're not suffering! Best wishes to you too, Satan, for a happy and healthy 2011.
cheers peter.


Posted in Untitled on 25 Dec, 2010 - 4:39 am

Hi Everybody,
Best Wishes to all the inmates here, and your loved ones, for a safe Christmas and New Year and for a happy and healthy 2011.
And If I hear "i'm dreaming of white Christmas" one more time, i'm gonna puke. There's at least 6 feet of snow in places here icon
cheers Peter.


Posted in Untitled on 19 Dec, 2010 - 10:23 am

G'day Stupot,
can't help you with any information, just saying hi.
Have you had yourself checked out to make sure it's not something else? That would seem a good place to start in your quest for answers. Beyond that, I can only wish you luck in your clusters staying mild. I'm sure no-one's thinking you're a fraud, but we might all be jealous icon
cheers peter.


Posted in Untitled on 19 Dec, 2010 - 10:11 am

G'day Guy, good to see another Sandgroper here, i'm from the hills, originally . Well, not really so good to see you here, but you know what I mean.
Re: Topomax; I am the same as Dusker, 100mg twice a day. Be warned it will knock you silly to start with. Riding your bike etc is a no-no until you get used to the new medication. I am not a fan of nasal Imigran- i've only ever used tablets,but i've found that some seasons I don't respond to Sumatriptan, so I swap to Zolmitriptan. One or the other always has worked.
My input, based on written reports only, and zero personal experience, is that none of the invasive procedures are long term effective. I stand willing and open to being shot down in flames on this, but as the root trigger for CH is not yet isolated, so any invasive procedure is a stab in the dark (pun entirely deliberate).
I'm also a bike rider (not in Russia though) although i've not had the chance to try any older Brit stuff. I tried to look up the Swiss races you talked about,but didn't have much success. Interesting though. Good luck today, and be careful if you start on Topomax.
cheers Peter.


Posted in Untitled on 10 Dec, 2010 - 4:48 am

Hi Katrina, welcome to the forum, and my sympathies for you having to be here. You're doing the right thing in researching what's happening to you, but you must be cautious as there's usually more than one condition that can fit any one set of symptoms.

First though- please don't put a bullet in your brain. You're not alone in thinking about it, but be strong and we here will try and get you through.

Roger (site founder) had more information here but had to take it down as the U.S. site want to make money off it. On the U.K. site (OUCH), there is more detailed information which when you read, you'll get a closer fit to your condition. Do go through all the information on the left, there's plenty to be gained from it.

You're already moving in the right direction by keeping a diary- the more information you can give to your Doctors and Neurologist, the better they'll be able to help. Don't be surprised if a Doctor thinks you're crazy or making things up- we've all been through that one. CH is so rare most Doctors never treat a sufferer, let alone diagnose one.

Lastly, I have heard of orgasm headaches, but can't help you with any information. Wow, you poor thing- that's really adding insult to injury.
If your Neurologist does comfirm your condition as Cluster Headache, you might find it useful to print out the information leaflet from the U.K. site -it will help your family etc understand what you're going through,and how they can help.
Best Wishes to you, Katrina. Ask questions, we'll do all we can to help.
Cheers Peter.


Posted in Untitled on 04 Dec, 2010 - 7:54 am

Hmm, scaring their friends probably wouldn't go over too well with your guys either.
icon
Somewhere buried in the info is a method for splitting one injection into three, as a lesser dose is apparently just as effective. I have no experience with it, as the injectable type is not available here in Russia, but hopefully some of the other forum members will weigh in with some help icon
My weekend is all work unfortunately, but thanks anyway. I hope yours is pain free and stressless.
cheers peter.


Posted in Untitled on 04 Dec, 2010 - 3:27 am

Hi Kathleen, welcome to the forum, and sorry you need to be here. Good Grief- 26 years of battling the beast- what a nightmare. But especially going 5 years then having them come back- that's horrific.
I do hope you mean O2 not CO2, otherwise you'll surely terminate your attack, as well as yourself. icon
If you've been given Imigran tablets, you should take one as soon as you feel an attack starting. They usually take 20 mins to half an hour to kick in. For me, I get a peppery tickle at the hairline of my scalp, then I know i've got about ten minutes before i'm banging my head on the wall. If I down a tablet when I feel the tickle, the beast doesn't get a chance to unleash fully. If I miss the tickle, then it takes a lot longer to put him back in his cage.
It's no good taking the tablets before you go to sleep, they won't be effective.
Imigran is Sumatriptan, there's another triptan called Zomig (Zolmitriptan). Some sufferers find it works for them when Imigran doesn't, but you can't use them both at the same time.
Have a read of the info on the left, there's all sorts of useful stuff. Good luck to you, and I hope you're back on a five year break again soon.
Cheers peter.


Posted in Untitled on 04 Dec, 2010 - 2:47 am

Hi Martine and Tom.
Fantastic to see Tom's green icon It's especially great, as you say, it's from a not damaging medication.
Best wishes to you and Tom for a happy Christmas and holiday.

Cheers Peter.


Posted in Untitled on 01 Dec, 2010 - 8:57 am

Wow, best wishes for a great time, Heather.
This is the start of something new in so many for so many people i'm astonished.
Safe Travels, Love, and Cheers icon
Peter


Posted in Supporters tips on 01 Dec, 2010 - 8:47 am

Ha! no wonder my post wouldn't land- Heather was there first. Hi Cheryl, you're a brave lady- it's tough supporting a sufferer. Ages ago a friend of mine called in lots of favours and organised me an appointment with a consulting professor of neurology at a teaching hospital.
I knew that he would ask if I smoked ( I did, had done since I was 11) and why hadn't I done everything to help myself, so I stopped. Cold. I'll PM you my system. He also trialled me on one of the ADHD type drugs- I wasn't ever told which one but I think it was Ritalin- the upshot of it was I went from four years chronic to a complete break of 5 weeks IMMEDIATELY. I'm not absolutely certain the stopping smoking was a major factor in breaking the chain, as the attacks came back; but when they did come back they were less intense and of shorter duration.
I also use Topomax, two times 100mg daily; imigrin oral as required. no pain clinics here in Russia.
Do read all the blurb on the left of the home page. The treatments etc are really valuable. Drinking heaps of water is vital, also cut out processed food, eat fresh/ raw food. Sounds like hell? What's the alternative? Hmmm. I eat fresh, almost never junk.
No need to get violent with your sister, Cheryl, just tell her when she has some experience with CLUSTER HEADACHE, please to pass on her valuable information. What she can and can't do with her migraines is of no use or meaning to you or Brad. icon
Good luck to you both, and stay positive. There's a wealth of info here; sift through and ask questions and sooner or later you'll be feeling like rainbows.
cheers peter.


Posted in Untitled on 01 Dec, 2010 - 7:16 am

Hi DolphinLady (and Guy and Dusker), sorry you had to be here, but glad you found us. It can be very lonely wondering what's happening inside your head when no-one can tell you what it is.
As Heather said, ignore the dis-organised nature of the place, the info is good, and that's what counts. I can't offer anything new except to say that I went from being episodic to four year chronic to episodic again; and have missed my last two theoretical seasons (Spring and Autumn, but northern hemisphere). I changed my status on the basis of a couple of "shadows" thinking my season had started, but it didn't, so i've changed it back again. I've tried just about every painkiller available, as well as everything else, and settled on Topomax as a preventative and Sumatriptan as an abortive; Zomig as an alternative if the sumatriptan doesn't work for that season. I've found over the years that sometimes Imigrin doesn't kill an attack like usual- then I know that season is a Zomig season, which is a shame, because they are hideously expensive here in Russia (no generic version).
One piece of information that is missing from the panel on the left is that you should drink water until your eyeballs float (it's missing because some septics like making money off misery). basically you should drink a glass of water every time you pass a tap. HOWEVER, if you have RENAL FAILURE and must MANAGE YOUR WATER INTAKE, DON'T DO THAT!
I wish you the best of luck, DolphinLady. Don't give up hope. You're obviously strong- you've endured four years not knowing what was wrong. Now you do, and with the collective knowledge here we'll work a comfortable solution for you.
cheers peter.


Posted in Attacked by CH again on 06 Nov, 2010 - 4:51 am

Hi satan, sorry to hear you're hurting. You're on Verapamil and Prednisone, pretty standard longterm stuff. You must have seen a doctor to be prescribed those- go back and demand one of the triptan group too- either Sumatriptan (Imigrin) or Zolmitriptan (Zomig). These will stop an attack in it's tracks. These are standard abortive treatments, and most of us use one or the other when needed, you'll have to work out which one works for you. Hang in there and try and stay positive.
Cheers Peter.


Posted in Just Venting on 04 Nov, 2010 - 2:24 am

Hi guys. Yep, i'm in the cold St. Petersburg, been here since 1997. i was a casino manager until they all had to close down last year, now i'm hotel manager, actually my original trade. The champagne bottle i'm holding is real champagne- Veuve Clicquot no less- the punters used to get given a bottle if they pulled three sevens on blackjack on a R25 table (that's 25 Rand) back when i was working at Amatola casino in Bisho, Ciskei. Ciskei was one of the black homelands before South Africa unified. The punters used to give us the champers, and we used to have champagne parties.
You're right about it being a fantastic city, Steve, even if it gets cold even to freeze the snot in your nose. I love it here icon


Posted in CH figures innacurate on 01 Nov, 2010 - 4:43 am

Hi Heather,
very sad to hear your Ma died- not a lot more psychologically challenging in life than that. My belated condolences to you and your family. On a brighter note, it's fantastic to see you're REALLY green icon, not just pretending, You have had a really testing year and a VERY steep learning curve. Best wishes to you, and I hope you stay green for good. Cheers Peter.


Posted in Just Venting on 31 Oct, 2010 - 4:37 am

Still Autumn here, and we're already into the minuses at night. Tonight is my last shift of the week, but it's the one where we put the clocks back an hour, so 12 becomes a 13 hour shift icon
Unless, as happened one year, the incoming manager forgets to re-set his alarm and comes in early icon


Posted in CH figures innacurate on 31 Oct, 2010 - 4:31 am

Hmm, is it fair to apply a global statistic to Australia, Roger? How many members at the U.S. site?- not that i'll ever log on there again. How's that going anyway, Roger? all settled down?
I just did a quick search, and found the figure of 0.2%, which is about the same as your figures.
I guess we sufferers are just too backwards about coming forward. We DO need an agitator, Heather, and I for one wouldn't hold you back if you took it on icon
cheers peter.


Posted in Untitled on 31 Oct, 2010 - 4:12 am

Hi Val,
wow, good news about Virgin having oxygen available; that's the sort of thing that will swing me when choosing an airline. I almost always have an attack on long haul flights, whether i'm in season or not. I don't know if it's lack of air or the (generally) elevated temperatures, but I usually end up spending most of the flight standing up in the cross passage between the aisles.
Best Wishes to you for a great holiday with NO need for oxygen at all.
Cheers Peter.


Posted in Untitled on 20 Sep, 2010 - 3:09 am

Something Heather said the other day started me thinking about "The Basics". Whenever someone posted their medications, I'd comment: tried it, didn't work for me. When I stopped to think about it, I've tried and rejected most of the front line treatments, but that was way back when. So i've decided to re-visit the abandoned treatments in conjunction with my current regime, and see if they don't produce a more positive result. I'll let you know how I get on. icon
Best wishes to all,
peter.


Posted in Supporters tips on 09 Sep, 2010 - 7:06 am

In my estimation, the most important thing is for Sufferers and Sufferees to not take to heart anything said during an attack. A supporter might generate hate and rage by saying "oh, i had a headache like that once", but only a sufferer can get so outraged by the banality of such a statement. We must try and let it pass over. The same applies when the sufferer is asked, out of genuine concern, how the supporter can help, and the supporter is told "BY F**KING OFF!!" The supporter cannot know the depth of loss of control on the part of the sufferer, and must also just let it pass over, despite the real hurt those words can cause.
It was always said that sticks and stones may break bones but words can never hurt, when in fact unlike sticks and stones, words can cause hurt that can't heal.


Posted in Supporters tips on 08 Sep, 2010 - 6:58 am

Ha. You have awful feelings of being alone, Dusker. I will do ANYTHING to keep from being seen. A friend of mine was visiting once when an attack hit, and worriedly asked if i was ok as i was pounding my head into the wall. NO, i said in a rather cracked voice, but i still didn't open the door.
I'm not so bad now i've discovered Imigran- i just lockdown in the loo until it kicks in. Tough if anyone else wants in, it's a bucket or the sink for them


Posted in Untitled on 08 Sep, 2010 - 4:18 am

Strange how things are. I'm on 25mg Amitriptyline daily at bedtime, mainly for it's mild sedative properties. my Neuro says interaction won't be a problem, and so far he's right. I must admit i'm not dilligent in taking it, probably 4 days out of 7, which is probably not the best either.


Posted in grumble grumble on 08 Sep, 2010 - 4:06 am

Hi Dusker and everyone,
i'm actually not bad. I was a bit premature, i think, in announcing the start of the Autumn season. I think i was just being reminded it's pending. The morning i was woken i'd give about a 3, i've had a couple of shadows around the 2 in the morning mark (don't forget i'm night shift), and that's it. I'm still taking Topomax at 25mg morning and night (so reduced), water to float the QE2, and back on the wagon until further notice. I haven't touched red wine this year- i wonder if thats had anything to do with the lightness of my attacks. This really is a cruel disease if that is so. Good luck with everything- see PM, Dusker.
cheers peter.


Posted in grumble grumble on 04 Sep, 2010 - 3:48 am

Ah, but the increased medical costs are offset by insurance, and that's where the real control is coming from. Why else has things like "binge drinking" been defined in Australia?
In medical terms, CH is not worth researching, as there's far too few of us to justify the enormous expense- we'd never be able to buy enough medication to make it profitable for the drug companies. Cynical? Me? Damn right.
Actually, in Russia they're tightening up sales of hard liquor- it's now not possible to buy anything over 15% alcohol between the hours of 23.00 and 07.00. Shocking, I know. When i moved into my apartment 6 years ago, I was cutting down smoking and off booze. My buddy Paul found me the flat- it has a 24 hour booze and tobacco shop AT THE FRONT DOOR. Talk about put the pressure on. Nice little earner that one. I walked in after the local soccer team won the European cup- the place was stripped. The only thing left on the shelf was Creme De Menthe icon


Posted in Untitled on 03 Sep, 2010 - 4:35 am

Wow, thanks Shell. I knew about Keterolac and prednisone, but not about any of the triptans. I rarely take them anyway, as a nurse friend of mine in Perth warned me off them years ago. Back then Tramadol was over the counter here too, but not any more unfortunately icon
i'd be in a ton of trouble if i couldn't leave the house if it was cold - that'd leave me about two weeks in July icon


Posted in grumble grumble on 02 Sep, 2010 - 7:37 am

I'm walking into walls for the first week or so, Heather. To be honest, it's the cost. There's no medicare or the like for me here, and Topomax is an imported medication. At 200mg a day it costs me roughly US$250 a month, so by stopping when I feel i'm out of cycle it's a couple of grand US i'm not spending. At your level it would cost me $500 a month- then add Imigran at US$10 EACH (50mg) icon or should i say OUCH so you can see the need for economy.
If I still smoked, i could pick up a pack of fags for a dollar, or a bottle of scotch for $5 icon. Vodka has just had a minimum price set on it (by law) of $2.89 per litre. (89 Rubles) Very funny country this one...


Posted in Untitled on 02 Sep, 2010 - 4:23 am

G'day Sean. Wow, small world. I used to live in Leichardt (sp?) St, before one fateful day we tried to clean the pool and it popped out of the ground and split in two. The owner was not well pleased icon We didn't get our bond back...
I've no idea why no jabs available here, but then i can't get medical oxygen either. My regime consists of Sumatriptan, Zolmatriptan if the Sumatriptan isn't working for that cycle; Topomax 100mg morning and night and Ketorolac tablets for pain killers. ALL over the counter here, so no having to beg from the GP. My Neuro's are actually pretty good (one's a real babe icon ) , i can drop in and chat with them any time.
Prednisone, and it's bastard brother Dexamethasone. I was on it for a one month regime, repeated for a second month. Yes, they do break a cycle, but in my case they really just shifted the cycle so that I just didn't know when an attack was going to occur. I stacked on weight- going from 95 to 118kg in two weeks, I bruised if I so much as crossed my legs, I felt as if my hands and feet weren't connected to me, I was lethargic, bedroom performance(ahem) could not be relied on. Like I said, NOTHING could induce me to go another round of Prednisone. It took me two years to get back to my normal weight after that little episode, and that was with not drinking for a year. Mind you, YMMV.
cheers peter


Posted in grumble grumble on 01 Sep, 2010 - 7:32 am

I know that tune icon Was it yesterday, Dusker, that I said I was waiting for the Autumn bout to kick in? This morning, after an hour and a half of sleep i woke up thinking NO! IT CAN'T BE! but it was. So i swallowed an "Amigrinin" Russian version of Imigran, and went to the loo to sit it out. It didn't get bad, just enough to start me worrying about how far it was going to go.
Oh well. I can't complain. I totally skipped my Spring bout this year. So i'll re-acquaint myself with Topomax (knocks me silly for the first week or so), and wonder how the hell my beast can read a calendar so well.
Cheers peter


Posted in Untitled on 01 Sep, 2010 - 4:04 am

Ah. I've read about LSD and mushies doing wonders, I just didn't know it was called busting. I've dropped acid a few times, but that was back in the 80's and i didn't have CH then- but from what i've read the "recreational" dosage is way more than the "therapeutic" dose anyway. I did have it in mind to slip over to Holland in the middle of a cycle to test the mushies theory, but they're now banned there as too many tourists ended up in the gutter or doing ridiculous things to themselves or property. icon All of the Ergot group are precursors for compounds of the LSD type- also notorious throughout history. It's reckoned many of the peasants "possessed by the devil" in the middle ages were actually suffering ergot poisoning from spoiled grain used in bread. I suppose it would have been a far out experience if old Ma Hubbard started tripping but didn't know what was causing it... icon
Thanks for that Shell.
cheers peter.


Posted in Untitled on 31 Aug, 2010 - 9:13 am

Hi Shell. What's "busting"? I've got no way of watching (or hearing) that.
cheers peter.


Posted in Untitled on 31 Aug, 2010 - 9:11 am

G'day Sean. Like Shell said- welcome to the club we'd all gladly not be in. How's Vic Park these days? I used to live down the road in St. James, many moons ago.
One of the treatments you're not allowed to know about is the Dihydrogen Monoxide ( water) treatment. Basically you just drink a glass of water every time you go past a tap. It seems to reduce intensity and frequency in many sufferers, me included. You're not allowed to know about it because the character that owns Cluster Headaches in the U.S. wants to make money from having it on his site. Just make sure you keep up your vitamin and mineral levels as they get leached by so much water.
As for other stuff, I also use the Imigran tablets, as no jabs are available here in Russia. They work fine for me. I've done Verapamil and Lithium and won't touch them again- just didn't agree with me. And Prednisone- I'd rather eat someone elses nostril hair than touch Prednisone icon Really nasty.
Good luck to you, i hope you find something that works.
cheers peter.


Posted in Untitled on 04 Jul, 2010 - 1:55 am

Hi Val‚ what a delightful place to say you're from; Tenby‚ Pembrokeshire. I can't help you with info‚ but I do wish you the best of luck‚ and i'm told welder's oxygen is fine in a pinch‚ it's just the mask you need to take care with. (visions of a Dragon Lady marching onto a building site...) Best of luck with your travels‚ and let the airline crew know‚ just in case.

Cheers peter.


Posted in Untitled on 04 Jul, 2010 - 1:44 am

Hi janeh. Is that Jane H or?
Oh dear‚ here's me thinking something's gone right‚ as i've missed my usual Spring bout‚ but you've gone 3 YEARS between episodes and they're back. How awful after so long to get slammed again. Oh well‚ at least you've got support this time. Best wishes to you‚ janeh. I'm up when no-one else is‚ if you need a vent.

Cheers peter.


Posted in Why we had to remove quiz! on 30 May, 2010 - 6:37 am

I reckon a sense of humour is a required trait for CH sufferers‚ Dusker‚ otherwise we'd be contributing to the other name for our condition - Suicide headaches.


Posted in Untitled on 26 May, 2010 - 3:52 am

Hi Steve‚
Welcome to the forum. You're correct about bringing in 3 months supply of your medication‚ but be aware what's considered a days supply in the U.K. might be different to a days supply in Aus.
Make sure you bring as much medical documentation as you can‚ as getting an Aus Doctor to prescribe on another countries diagnosis is a nightmare. You will first have to prove your condition‚ which is not such an easy task either. And just to REALLY make you feel good‚ Imigran is not a scheduled medication‚ so no NHS discounts. Sorry...


Posted in Quiet lately on 23 May, 2010 - 5:51 am

Hi Ange‚
there is a sure fire cure- it's just illegal. L.S.D. magic mushrooms and Amphetamines have all been shown to stop an attack‚ and a bout‚ in its tracks.
I wouldn't suggest you nip on down to your Neuro and demand a bag full of Blue Meanies‚ and in the case of amphetamines I can understand it not being prescribed given the dangers of addiction‚ but surely reseachers can find what it is in those drugs that causes the benefits and come up with a treatment.


Posted in Untitled on 23 May, 2010 - 5:41 am

G'day Frosty (and Dusker)‚
what you're describing‚ Frosty‚ is what i've always assumed is meant by a "shadow". I know exactly what you mean- it's as if an attack is starting‚ but it doesn't ramp up. Dreadful feeling (in the true sense of the word).
I had the same "shadowy" feeling at the start of this month‚ and thought it was the start of my overdue Spring bout‚ but it didn't kick in. Not that i'm complaining‚ you understand‚ there's just this feeling of dread - like‚ get on with it‚ so it can end for another season. I hope it's not possible to talk myself into an attack smile

Congratulations on the family addition‚ too.

Cheers Peter.


Posted in Why we had to remove quiz! on 12 May, 2010 - 12:54 pm

Hi Roger‚ very sorry to hear of all this. Who does this wanker think he is? He thinks he can copywrite a medical condition?

Just so you know‚ and you may display it if you wish- I use a MARVELLOUS natural product which seems to reduce the intensity and duration of my attacks. It's called Dihydrogen monoxide‚ and i take as much of it as i can. Personally‚ i keep mine in the fridge‚ but it isn't really necessary. It's not expensive‚ you won't need a prescription‚ and it's readily available. I would ask that you let everybody know about it‚ because it does help‚ and can't hurt. Just remember to take vitamins and minerals‚ as dihydrogen monoxide can leach these out of your system. So there you are‚ in my words. I hope this helps icon


Posted in Latitude Correlation th CH on 29 Apr, 2010 - 5:02 am

Yeah the cold air helps‚ Benny. Body clock is fake‚ i've been night shift all my life‚ even as a two-year old. Southern hemi‚ Northern hemi‚ no difference‚ i sleep when it's light. What's the cause‚ though???
Regardless‚ cluster or not‚ i reckon i'd take the job‚ just for what it is. Not many places left you can groove on your life. Go hard.

Cheers peter.


Posted in Untitled on 29 Apr, 2010 - 4:42 am

Andy‚ you've got the right approach. Plus you've got fresh air and water. just out of curiosity‚ did the Beta Blockers make you feel dis-jointed at all? Didn't make a difference (physical feeling)?

cheers peter


Posted in on 11 Apr, 2010 - 11:28 am

Hi Ange (and Heather)‚ geez Ange‚ are you going through the mill 0_o

I don't understand this Prednisone therapy you're on. I queried this with my Neuro (and he's about the best there is this side of the pond) and HE was surprised. He always doses very high tapering off to nil‚ never a static daily dose- which he says is ineffective. It is also NOT something you want to be on long term.

Anyway‚ I was just thinking- have you tried the cold air treatment? Many people‚ me included‚ find breathing very cold air through your nose can take the edge off an attack. Heather might need a car air-con to get really cold air; I should think you could just open a window‚ Ange‚ if Canterbury is it's usual temperature. I've even killed an attack by this method when I realised it was coming fast enough. Of course‚ when it comes to cold air‚ when I open a window it's REALLY cold ^_^

I have also been known to use a bag of frozen peas on my forehead; maybe that could be worth a try‚ Ange‚ rather than caving your skull in- your boy can assist in that too‚ which would boost him as he will feel he's assisting‚ rather than just feeling helpless.

What else? Oh‚ ask your Doctor for some serious pain-killers. My Neuro put me on Tramadol and dexamethasone (similar to Prednisone) at the same time‚ so your Doc can't say there's a conflict; but you're got to ease up on the panadol or your kidneys will pack up.

Maybe suggest your Doc tries you on Topamax (anti seizure med for Epilepsy)‚ it made a huge difference for me. Be warned‚ you will be incompetent for a couple of days until you're used to it‚ it really messes with your head. And don't drink when you're on them‚ you will think you're in that cheezy time/ phase shift scene from the Matrix.

Well that's about it‚ Good luck to all.
Cheers Peter.


Posted in Untitled on 11 Apr, 2010 - 4:42 am

Hi Lyn‚ welcome to the forum. Sorry you had to be here‚ but hopefully we'll get you sorted out.
First off‚ do a google search for the UK variation of this site; they have a printable leaflet you can give to your husband to help him understand what you're dealing with. Once you've got him understanding‚ then you'll need to go to work on your Doctor. You will usually be tried on a range of meds until they find one that works for you; insist on a presciption for Sumatriptan (Imigrin)‚ it will stop an attack in most people. It won't stop an attack from re-occurring though. If they want to prescribe a pain killer‚ Tramadol is better than Codeine‚ but better if you can do without either.
You might also be prescribed Prednisone or Dexamethasone; these are cortico-steroids and can stop a bout‚ but both have gruesome side-effects.
For natural stuff‚ oxygen can stop an attack in it's tracks if you get on it immediately. The resident guru on O2 here is Barry T Coles‚ look for his posts for invaluable information.
Also natural is the water treatment. Basically you must start drinking a glass of water every time you walk past a tap (probably on your way to the loo if you're drinking enough); this seems to cut down intensity and duration of attacks in many of us. Do keep up your electrolytes and vitamins though.
Good luck‚ best wishes‚ and ask any questions you like‚ we're all in the same boat and know what you're going through.

Cheers Peter.


Posted in Untitled on 04 Apr, 2010 - 6:52 am

G'day Fluster‚ it was a while ago‚ but when i was chronic and no diagnosis; i found that too. i posted it in 'Um‚ not good". but i tell you what‚ i bounced into the rhythm of my beast. Trouble was‚ i was drinking a litre of vodka every third day. The main point being (Dusker‚ this for analysis) there was a threshhold when i knew I wouldn't get an attack. AND‚ I NEVER got an attack the day after getting shit-faced. Apologies for the language‚ but it was a case of writing myself off‚ then i knew no attack the next day.


Posted in Untitled on 02 Apr, 2010 - 12:44 pm

G'day Heather‚
yes‚ i'm fine thanks. (frantically touching wood) We've had a very late start to Spring‚ so my regular bout hasn't kicked in yet. That said‚ I didn't drink ANY alcohol from Christmas until last week- maybe that has had something to do with it. I've got a couple of nice bottles of red that get eyed off on a regular basis‚ but i'm just too scared to touch them. I'm a huge fan of Jack Daniels‚ so when a long lost buddy rocked up last week‚ I cracked the bottle of Single Barrel I had stashed away‚ wondering if it was going to trigger anything which it didn't‚ but it's only a matter of time.

I've had both the beta blockers and the calcium channel blockers; the calcium channel blockers were just too bizarre for me. I felt as if my arms and legs weren't connected to my torso‚ not pleasant at all.

Although I still never walk out of the house without my meds‚ i'm taking less than at any stage of the last 5 years. Better attention to diet‚ LOTS of water‚ and full on boots and all blast the beast when an attack happens‚ seems to be doing the trick. I figured there's no point pussy-footing around taking inadequate amounts of medication; either go for it or don't bother.

Do let us know about the Minax‚ Kendo. That's a new one on me‚ so it will be nice to add another weapon to the armoury if it works.


Posted in Untitled on 02 Apr, 2010 - 6:46 am

G'day Kendo‚
good one‚ nice to know there's no nasties lurking in the head. I have no experience of Minax‚ but it would seem your Doctors using a similar approach as those that prescribe Verapamil i.e. it treats as for high blood pressure with either a beta-blocker or calcium-channel blocker on the side. Minax is beta-blocker. I've been on beta-blockers‚ and they can leave you feeling a bit weird‚ just so you're aware. I hope it does the trick for you.

Cheers Peter.


Posted in Untitled on 22 Mar, 2010 - 4:36 am

G'day Kendo‚ welcome to the forum. Wow‚ 8 panadol a day- sounds like your doctor is well up on cluster headache...
Now you know what it is‚ check out the info stored on the left there‚ maybe you will find something more useful to you than a handful of panadol. Good luck to you.

Cheers Peter.


Posted in Untitled on 21 Mar, 2010 - 1:31 pm

Good for you‚ Heather. Have you got an established cycle yet? I'm still waiting for my Spring bout to arrive- I don't want it but I know it's going to happen.

Nickee‚ ask your doctor about Tramadol. If they prescribe you codeine‚ they should be ok with Tramadol as well- it won't make you queasy either. I don't bother with it any more‚ but it was what my Neuro recommended.

I know what you mean about red wine‚ Heather. I almost don't touch it anymore‚ sad to say. Cheese is out as well‚ when i'm in cycle‚ and that's even harder to forego. No Parmesan on pasta or scrambled eggs‚ that's really tough.

Best wishes to all.
Peter.


Posted in Untitled on 21 Mar, 2010 - 1:21 pm

G'day Marc‚
took you a while to break your duck. Welcome to the forum.
Geez‚ for that sort of money and success rate‚ i'll give it a miss. Just for the record‚ where do they inject it?


Posted in Untitled on 06 Mar, 2010 - 9:50 am

Hi all‚
sorry Andy‚ we've hijacked your thread here. How are you going? Are you getting any relief at all‚ or a hint of cycle?

For Ange- i've been doing some research‚ and apparently just about all of your anxiety attack symtoms are also side effects of Ibrufrofen. I'm just wondering if there's a correlation. Also did your Doctor know you're taking Ibruprofen when (s)he put you on Prednisone‚ because he needs to know that. My Neuro stopped me on all of the OTC stuff and put me on Tramadol if I needed pain relief. It's an opiate‚ much less addictive than codeine‚ and doesn't do so much damage to the stomach. Maybe have a chat with your Doctor about it. I would think if he knew how much OTC you took‚ he'd consider something stronger‚ and it might help with your anxiety as well. This is all a bit personal i know‚ and i'm not trying to get you hooked on opiates (honest smile but that OTC stuff can do you a lot of harm in big doses.
Just for curiosities sake‚ have you tried Topamax as a daily preventative? That also is a fairly new treatment for CH (originally an anti-seizure med for epilepsy)‚ but many find it helps- me included. Good luck with it all.

Cheers Peter.


Posted in Untitled on 02 Mar, 2010 - 2:46 pm

Hi Ange‚
I'm told some sufferers just use regular welders O2 to spare themselves the hassle of getting referrals to Neuro's etc. I have no experience with O2‚ but as i understand it‚ the mask is the most important bit for us C.H. sufferers. Check through Barry's posts‚ he explains in detail what the correct mask is.
I do hope you keep track of how many paracetamol you take- that stuff can be REALLY nasty for your liver and kidneys if you overdo it; and that's easy to do if you've got a skull-cracker happening. Take care‚ eh?
Cheers Peter.


Posted in Untitled on 01 Mar, 2010 - 10:39 am

Hi Heather‚
thanks for the good wishes‚ they will be much needed shortly.
I am so glad I don't have to deal with the medical system in Australia; having to beg for medication would turn me into a raging psychopath. All the meds I use I can get over the counter- Topamax‚ Ketarolac (Toradol)‚ Sumatriptan‚ Zomig‚ no restrictions whatsoever. Until recently even Tramadol was O.T.C.

Have a think about taking on the mantle of agitator‚ Heather‚ even just to get the ball rolling.

Cheers again to all‚
Peter


Posted in Untitled on 01 Mar, 2010 - 8:46 am

G'day all‚ sad to hear the suffering continues.
At the risk of sounding pious‚ which is not my intention; Andy- there is no "right to enjoy day to day living". It is a priviledge‚ which way too many people don't appreciate until that priviledge is gone.

As cluster sufferers‚ we must recognise that we are not a large enough proportion of the community‚ or financially significant enough‚ to warrant clinical or pharmaceutical studies. The best we can hope for is that studies into other conditions such as migraine reveal benefits for us.

One area that we cluster sufferers could be helping ourselves in‚ is aggitating for change in the rules governing our medications. e.g. There is no valid reason that Doctors are restricted in the number of doses of Sumatriptan they can prescribe. It is not an expensive drug to produce‚ it cannot be used to make narcotics; yet a C.H. sufferer could validly use a months supply in one day.
Many sufferers have commented on getting relief after being given Toradol in E.R. I know it is only available in injectable form in Australia‚ but why? I get the same stuff in tablet form in boxes of 100. It's cheap‚ it's non-addictive‚ it can't be turned into anything else‚ yet it has ludicrous restrictions placed on it in Australia. These are the things we could be changing to significantly increase enjoyment of life.
Good luck to you all. It's now March‚ so I know my Spring bout is just around the corner‚ and the best I can do is be ready for it.
Cheers Peter.


Posted in Untitled on 09 Feb, 2010 - 11:07 am

G'day Andy and Heather. And everyone else too...

Re: Prednisone. I hated this stuff. It sort of worked in that it altered the cluster cycle‚ but as i was chronic i was probably expecting too much anyway.
What it did do was alter the timing of my attacks‚ which had been starting at 09.50. I work night shift‚ always have done‚ and 09.50 is about one hour after i go to sleep. I could set my watch by my attacks‚ they were that reliable. After starting the course of cortico-steroids‚ i had no idea when an attack would hit‚ which i found to be incredibly frustrating as i would frequently miss the tell-tale "it's coming" signal‚ so would be late onto the medication.
Apart from that‚ i put on 18kg in two weeks; i couldn't get into my suits‚ i couldn't button a collar‚ and i was only half way through the course. I was covered in bruises (just folding one leg on the other would bruise my calf)‚ starting to feel depressed and really feeling the Prednisone wasn't helping much. After i finished the 4 week course‚ the Neurologist felt it hadn't achieved it's purpose‚ so repeated it on me! This was also when he told me about the side effects of weight gain‚ unstoppable appetite‚ bruising‚ water retention etc. I went ballistic at him‚ and as i'm 6'5" and 17st‚ that's a sight to behold. You're supposed to tell me that BEFORE i suffer any of it‚ you twit. Anyway‚ armed with knowledge‚ i bought a treadmill and made sure the only snacks available were of the fresh fruit and vegetable kind. Alcohol had already been banned at the outset which i stuck to absolutely - they really are NOT compatible- unless you like stomach ulcers.
Do I think Prednisone worked? Sort of. Would i do it again. NO! No way.
I now use Topamax as a daily preventative(an anti-seizure drug for Epilepsy- works well against CH‚ no-one knows why)‚ and Imigran when an attack strikes‚ Zomig if the cycle is Imigran resistant. I use the water treatment‚ and much more fresh fruit and vegetables‚ as advocated by Lil Fuzzy. It's been a long journey finding what works‚ but i'm back in charge now‚ not the beast. I hope everyone else finds what works for them too.

Cheers Peter.


Posted in Untitled on 06 Feb, 2010 - 2:37 pm

G'day Andy. Welcome to the forum‚ sorry you needed to find it. Yep‚ plenty of good information here‚ mostly we have to know what's what because most Doctors don't.
What you're on is the usual regime for busting a cycle. Read up on the prednisone‚ just so you're aware of the side effects - like eating like a HORSE. That and blowing up like a balloon‚ easy bruising etc. Amitriptyline should help you relax and get off to sleep; I was warned though‚ you can get used to them‚ if you know what i mean.
Good luck finding what works for you. It can be a slow process‚ but bliss when you do find something that works. I'd never been tried on Imigran until I found this site and demanded it from my Doctor- that stopped my attacks cold. It doesn't bust a cycle‚ just the attack‚ but that was fantastic as far as I was concerned.
I hope you keep feeling good.

Cheers Peter.


Posted in Untitled on 02 Feb, 2010 - 7:14 am

G'day Mr. Happy. I can't help you with Doctors in Queensland‚ so i'll just say welcome to the forum. Sad you have to be here‚ hopefully someone here can weigh in with useful information for you.
Actually‚ a register of Doctors who know a CH when they see one would be a very useful thing- maybe state by state? How about it‚ Roger?
Cheers Peter.


Posted in Untitled on 28 Jan, 2010 - 6:55 am

Hi Ange.
Your post has me confused. Your Dr has prescribed Prednisone to take if your attacks get too bad? How are you supposed to take it? Prednisone is the same as Dexamethasone i.e. a corticosteroid. It is usually taken as an intensive course of up to a month‚ starting with high dosage then tapering off (although in my case my neuro repeated it on me). Is that how your Dr prescribed for you?
Do let me know if you must start a course on Prednisone‚ it's got some really nasty side effects you should know about. My neuro didn't tell me anything‚ so it was all learning by experience.


Posted in Untitled on 21 Jan, 2010 - 9:20 am

Hi Everyone‚
about cafergot etc; ergot is a fungus that grows on grains like rye etc‚ and is basically the building block for LSD. I have heard it's possible to "grow your own" LSD type drug from ergot. In the middle ages people used to flip out and end up getting burnt for being a witch or accused of being possessed after eating bread made from ergot tainted grain.
It has potential for abuse and/or to cause dependence‚ and definitely can make you feel spaced out which is possibly one of the reasons it's been withdrawn- that and the very limited market that is CH sufferers.
Because it's a neurological condition‚ many of the treatments for CH impact heavily on our nervous systems‚ hence the undesireable side effects of numb faces or tingly fingers and toes. I always read up on any new treatment that i'm tried on; some of them my Doctor has given almost no information about‚ but after reading up on them I find they have a list of potential side effects (up to and including death) that tells me don't bother trying that on me.
i've also had instances where the one Doctor has given me two types of medication‚ which when i've checked up on it‚ should NEVER be used at the same time.
Please‚ people‚ don't just take your Doctors word for it‚ check up on your meds yourself. Only you know everything you take. Your Doctor might prescribe something without full knowledge and therefore not realise the possible interaction that could occur. Pay special attention to interactions between herbal remedies and pharmacy medications‚ some can be nasty.


Posted in Untitled on 16 Jan, 2010 - 11:20 am

Yep‚ St. Petersburg (hence the screen name) Russia. I've been here 12 years. Up until June last year I was a casino manager‚ but by law all casino's had to close so i was transferred to the hotel‚ which is my original trade. Look up Taleon Club in St. Petersburg‚ that's where I work. The G.M. is also a Perth boy; we're both from the hills.
Just for fun‚ imagine trying to explain CH in a foreign language to a Doctor. I got nowhere until i was out walking one day and spied a clinic i hadn't been to yet‚ so in I went.
Imagine my surprise to find an Aussie Doctor‚ name of Bruce! First Aussie named Bruce i've ever met. He listened to my description‚ said i think that's... grabbed a book off the shelf and flicked through- yes‚ you're suffering from cluster headache. I was stunned and delighted. Then the clinic got bought out and Bruce left‚ but at least i knew what the problem was. So started the learning process.

Cheers Peter.


Posted in Untitled on 16 Jan, 2010 - 9:59 am

Hi Heather‚
amazing isn't it? One Dr says one thing‚ the next says it was wrong. All of the ergot group have long been recognised as being of value in CH treatment‚ but as you say‚ it's possible the attack had run it's course already. Oxygen is really only of use right at the start of an attack too. If you've already gotten to your E.R. you're going to be too late for the oxygen to be effective‚ and i doubt they'd give you the very high doses required anyway. For CH‚ oxygen has to be given at a much higher rate than is usually given‚ and medical staff don't like doing that sort of thing.

Back to Imigran; if tablets of 100mg are available‚ then i feel your Dr is under informed if (s)he says 50mg is absolute maximum‚ unless another constraint is causing them to say so. Ask why.

Did you not feel knocked about after an attack‚ before you used Imigran? What you describe is exactly how I felt after a rip-snorter attack when i'd taken no medication at all.

Just reading your post‚ giving the Imigran 30 mins to bring relief might be a bit optimistic; in my experience‚ if i don't catch the very start of the attack (because of sleep etc) then it can be up to an hour to fully control the beast. Bear in mind it will take 20-30 mins before the tablet starts to be absorbed into your system‚ so total effect won't be realised until some time after that.

DO be assertive with your Doctor. If you've read all the info on this site‚ and trawled the web as well‚ then you're far better informed than the majority of Dr's‚ small town or not. You don't want to get the Dr's hackles up though‚ so be diplomatic about it.
As for painkillers‚ my Neuro recommended Tramadol‚ which is an opiate‚ but less likely to cause dependence than any of the other opiate type painkillers. They do work.

One thing i haven't seen mentioned for a while is cold air. If you can‚ get yourself into an air-conditioners way and blast it flat out while breathing the cold through your nose. This can help. I have a distinct advantage in this regard‚ i can open a window and breathe air at minus 20 degrees and it DOES help.

I must say Heather‚ if that was a vent‚ your vents are fairly mild. Good luck with your Doctor‚ and I hope you find some relief.

Cheers Peter.

Just saw your next post‚ Heather- I'm Aussie to my boot straps‚ born and bred Sandgroper smile I know the expression‚ just wanted to know the symptoms. Cheers Peter.


Posted in Beer anyone? on 16 Jan, 2010 - 5:46 am

Alcohol absolutely for certain triggers an attack for me‚ in fact it's generally how i know my cycle has started. I will be half way through my first can of beer when i get the first warning tickle‚ then it's "oh crap‚ the cycle's started". So then it's off the booze completely for six weeks or so‚ until the attacks don't seem to be hitting any more‚ after which i'll tentatively try a beer. If i get attacked‚ i don't drink for another couple of weeks‚ then try again. I also don't touch cheese when i'm in cycle‚ as that seems to make things worse.


Posted in Untitled on 16 Jan, 2010 - 5:36 am

Hi Heather‚ very sorry to hear you're in the wars‚ i hope it's a short one.
On Imigran‚ how do you mean when you say knocked for a six? I don't think i've ever felt any effect from Imigran except for it stopping an attack‚ so i'm wondering if it's not interacting with something else? A pain killer perhaps?

As for only taking one per day; the generally accepted maximum dose is 200mg per day‚ so if you're taking 50mg tablets‚ a second shouldn't be a concern. I usually use 100mg tablets‚ and have taken 3 in a 24 hour period when circumstances dictated- my reasoning being there's a safety margin built in to recommended maximum dosage‚ and stopping an attack by any means possible is better than me jumping out my fourth floor window.

Best wishes
Peter


Posted in Untitled on 12 Jan, 2010 - 12:42 pm

G'day Ange and Heather‚
Ange‚ i stopped smoking just over three years ago and the effect was dramatic and immediate. I can't say it was only down to stopping smoking‚ because my Neuro tried me on an ADD type drug at the same time (i have no idea what)‚ but I went from 4 years chronic to pain free virtually overnight. I remained CH free for the best part of 2 years‚ only getting attacks on long haul plane flights. CH has since returned for the season changes of Autumn and Spring‚ but nowhere near as bad as they were‚ and only as cyclic‚ not chronic.

When you do decide to stop‚ Ange‚ don't look on it as trying to stop forever. This is too daunting a mental hurdle. On your chosen day‚ just challenge yourself to not smoke for ONE day. You're tough‚ you can handle CH‚ so for sure you can not smoke for ONE day. If you really really have to‚ have one cigarette only‚ exactly at midnight. If you don't want a cigarette at midnight‚ or you miss the timing‚ then you don't smoke for one day more. That's how I did it. Break down the mental challenge to something your mind can cope with.
Before your chosen day‚ if you can‚ separate smoking from other activities too. So when you have your first cuppa in the morning‚ don't smoke at the same time. Make them separate activites‚ then they seem less symbiotic. Do try‚ even if just for one day.

Cheers Peter.


Posted in Beer anyone? on 12 Jan, 2010 - 12:05 pm

G'day Beau‚
I already asked Butch that‚ it's so he can see what he's writing. In later posts he's quieter.
To Brian‚ a couple of years late‚ sorry‚ "cheers and beers" in Russian would be (not in cyrillic) nas'd'roveya e peeva. In Russia beer isn't considered an alcoholic beverage‚ even though it comes in at up to 9% alc in a half litre can. It's no wonder 100 thousand die every year from alcohol poisoning.


Posted in Untitled on 08 Jan, 2010 - 12:22 pm

Hi Ange‚ welcome to the fold. Very sorry you have to be here. One of the other posters (Patches) has mentioned getting relief using Neurontin‚ which i'd not heard of‚ so i had a quick google.
It's mentioned that an extra benefit of that treatment is reduced anxiety- maybe worth a look for you?

Good luck and
Cheers Peter.


Posted in Untitled on 08 Jan, 2010 - 12:13 pm

Hi Sophie‚ welcome to the forum. I'm glad you re-posted to introduce yourself; as i suspected your first post got buried in that other thread.

I've just come out of cycle‚ so am looking forward to a few months of CH free living. The fact that it's minus 25 with 4 feet of snow on the ground doesn't diminish my enjoyment of life one little bit.

May i ask if you do any sort of work which is potentially hazardous to yourself or others?
The reason i ask is that one of the common drugs used as part of CH treatment is Topamax (which i do use)‚ but until you get used to them‚ you should not operate anything more complicated than a teaspoon. Really. You will forget what you're doing‚ what you're talking about‚ where you're going‚ why you're doing things- it's frightening. When i first took it‚ I felt like i was back in college.

Topamax is a daily preventative‚ then when an attack hits‚ i take an Imigran tablet. That's it. I'm permanently on the water treatment described on the left there‚ and my Neurologist prescribes me Tramadol for painkillers‚ but i haven't bothered renewing the presciption after running out months ago. I also have Zomig tablets‚ which i use if Imigran doesn't work for a cycle. Zomig and Imigran are both from the Triptan group of drugs‚ Sometimes one will work one cycle but not the next cycle‚ so i switch to the other type for that cycle. You mustn't switch back and forth in the same day though- you must put a clear 24 hour break between the types of Triptans.

Read through the medications and treatments‚ Sophie. There's a lot of different approaches to tackling CH‚ i hope you find something to help.

Cheers Peter.


Posted in Untitled on 08 Jan, 2010 - 11:35 am

Hi Christie‚ Well‚ That's a Happy New Year then! Congratulations. Did you do anything else like the water treatment etc‚ or just as described in your post?
I don't want to burst any bubbles or anything‚ but don't be disheartened if your attacks do return. You know now you can have CH free months‚ so just strive for that. Don't look on it as having to get rid of them forever‚ otherwise you could get down on yourself needlessly.
Fingers crossed for you‚ Christie‚ good luck.

Cheers Peter.


Posted in Untitled on 05 Jan, 2010 - 6:52 am

Hi Mel‚ welcome to the forum‚ and sorry you had to be here.
I'll start by saying that it's no surprise that your Doctor(s) didn't know what was happening; i'll guess that most of us here are familiar with that scenario. That's why it's important to do all the research yourself- most of the time you'll know more about Cluster Headache (CH) than they do.
Right- non drug relief. This will fall into two broad categories: alternative treatments and lifesyle.
On the left there is information about "the water treatment" and "O2 (oxygen) treatment". These are the main weapons in your battle with the beast. The water treatment i'll put in with lifestyle. So‚ on to O2.
Oxygen CAN kill an attack before it gets going‚ if you're quick enough off the mark‚ and you do it right. I'm not familiar with it‚ as i live in Russia and oxygen is not permitted for home use. As i said to Dusker‚ hunt through the forum for posts by Barry T Coles. His posts will tell you all there is to know about O2‚ how to use it‚ where to get it‚ the right sort of mask etc. You may then need a referral from your GP to get the gas bottle. Make sure your GP shows you what to do and that you repeat the actions‚ so you're comfortable with the procedure before you have to do it alone. OK‚ that's O2.

Lifestyle. Many posters on this and other CH forums are of the opinion that amongst other things‚ CH is caused by a build up of toxins in the body‚ and the way to reduce cluster attacks is to reduce those toxins. So by eating more raw and/or unprocessed food and drinking LOTS more water (water treatment)‚ the body gets rid of the toxin build-up. One poster a year or so back‚ in sheer desperation‚ went to an alternative healer up Daintree way‚ who put him on a no meat‚ dairy‚ caffeine‚ gluten etc diet. After 9 days or so‚ he'd gone from chronic suffering to no headaches at all. Have a hunt for his post. It's an extreme diet‚ but then the reasons for trying it are extreme too.
You must understand‚ there's no proof that diet is linked to CH or vice versa- it's up to you if you give it a go.
I personally have moderated my diet to great effect; very little cheese now (and none when i'm in cycle)‚ almost no red wine (even though i love it)‚ much more fresh food and virtually zero junk food.

That said‚ i still carry Imigran tablets everywhere i go‚ just in case. They're the standard go-to CH stopper. They're the first of the Triptan family of drugs (sumatriptan)‚ not a pain killer as such‚ but it will stop an attack. Dusker's "Zomig" is also a Triptan‚ but a newer variant called zolmitriptan.
Anyway‚ Mel‚ read up on the info on the left there and see what works for you. Ask questions‚ if any of us can help we're glad to.
If you do come up with something‚ put it in the forum. Basically we're the front line of research for CH‚ and it's our collective knowledge that's helping us all. Good Luck‚ and hopefully we'll get you pain free.

Cheers Peter.


Posted in Untitled on 04 Jan, 2010 - 6:31 am

Hello Dusker‚ welcome to the fold‚ so sorry you have to be here.

Yes‚ you're not nuts‚ just a statistical rarity smile And you're quite correct‚ to control "the beast" you have to hit the O2 or Zomig/Imigrin at the first sign of an attack. If the beast gets out of its cage‚ it will be a much longer‚ painful wait to get it back in it's box.
You mention trying to identify an early warning sign in one of your other posts - this is crucial. If you can identify yours‚ you can possibly crush an attack before it gets a grip. When you can do that‚ you will feel you're controlling the beast‚ not the other way round. My early warning sign is a sort of "peppery tingle" feeling right at my part line/scalp. When i feel that‚ i know i've got five to ten minutes before it's on me. if I take an Imigrin/Zomig tablet then‚ the attack doesn't escalate too much before the pill kicks in. It's still a painful 20 minutes or so‚ but nowhere near as bad as when i miss the signal. When that happens‚ and it's rare that i miss it now‚ it takes an hour or so before i'm back to pain levels i can handle.

The information within the treatment folders on the left should give you plenty to go on with as well. I've noticed a significant reduction in intensity and frequency of attacks since taking up the water treatment‚ which is basically drinking as much water as you can. I also take a vitamin supplement to balance out the leaching effect‚ but certainly the flushing (no pun intended smile) is beneficial.
On the English CH site (OUCH.UK.org‚ something like that) there is a printable leaflet which is intended for family and friends to help them understand what you are going through; you might find that useful.
Well‚ that's it for now. As you say‚ you're NOT on your own. Feel free to ask questions. Barry T. Coles is our full bottle (pun entirely deliberate) on O2‚ he can fill you in on getting yourself set up so you CAN crush those attacks before they take hold.
Good Luck‚ Dusker‚ and i hope we can get you pain free this year.

Cheers Peter.


Posted in Chronic paroxysmal hemicrania on 01 Jan, 2010 - 2:05 pm

Hi Sophie‚ welcome to you‚ unfortunately. (as in you suffering to come here. maybe i shouldn't post today smile
You'll get lost tagging on to another thread like this; maybe ROGER can move it to the new members thread so everyone can say hello properly.
You have to laugh at a G.P. not knowing what CH is as it's pretty well par for the course.
I hope your's go away for you‚ or you find some useful help on the left.
Good Luck and
Cheers Peter.


Posted in Untitled on 01 Jan, 2010 - 1:56 pm

Hi Padraic‚ sorry‚ we don't seem to be a very friendly bunch at the moment. Welcome to the forum‚ sad though it is to have to be a member.
Apart from painkillers (my preferred is Tramadol)‚ i always carry Imigran tablets- As soon as i feel the tickle at my scalp that tells me an attack is starting‚ i down a tablet. It kills an attack in 20-30 mins if i catch the start. Miss the start and it can take up to an hour or so to control the beast.
Apparently the same drug (Sumatriptan) is available in Australia as an injectable liquid which kills an attack in 5 mins‚ but i have no experience with that.
If you check out all the links on the left there‚ it will give you other avenues to explore; like oxygen‚ the water treatment etc. Maybe something will work for you.
Good luck‚ and best wishes for a pain less 2010.

Cheers Peter.


Posted in Xmas 2010 on 22 Dec, 2009 - 5:50 am

Well‚ it's that time of year again‚ no action on the forum as everyone is flat out preparing for the silly season‚ i guess.

Just wishing one and all a safe and happy festive season‚ and a healthy‚ pain free 2010.

Cheers Peter.


Posted in Untitled on 11 Dec, 2009 - 7:36 am

Hi Christie‚
yeah‚ the stabbing pain is pretty well a common factor with all of us‚ some get jaw pain or side of head pain; others like me don't get anything except the eyeball being assaulted from the back by evil maniacs with icepicks.
I hope you're right and this bout is over for you‚ but keep in mind for next time; instead of pressing on your poor old eyeball‚ get a bag of frozen peas or something like that‚ wrap it it a tea towel‚ and hold that against the eye socket/cheek/forehead without pressing on the eye. Maybe you'll get some relief like that. That's only a random guess you understand‚ and don't freeze your skin if you try it‚ but i'm sure your eye will give you less trouble‚ and i'll bet you don't get blurry vision for the next couple of days.
I'm glad to have been of help‚ if it has been. I didn't know about Imigrin until i found this site either. Ask questions‚ don't be shy. Everyone's very friendly and glad to help‚ because we all know exactly what it is we're going through.

Cheers and best wishes for a CH free year.
Peter.


Posted in Untitled on 11 Dec, 2009 - 6:02 am

Hi Christie‚
i don't get head pain like a headache as such‚ it's more like someone is stabbing me through the back of the eyeball with a red hot ice-pick. Is that something like yourself too? My eye goes red‚ weeps etc‚ but I absolutely do not touch the eyeball itself. I will often press on my temple (which doesn't do anything really‚ it's just a distraction)‚ but the eyeball itself is too easy to damage‚ especially if you're in severe pain and not under the best control.


Posted in Untitled on 10 Dec, 2009 - 12:18 pm

Hi Christie‚ wow‚ sounds horrible.
The stabbing bit is very familiar to me. I'm going to take a wild guess- do you think pressing on your eyeball as hard as you could might not have caused some damage? I mean‚ they're pretty delicate little blobs of jelly after all.


Posted in Untitled on 10 Dec, 2009 - 12:10 pm

Hi Happy. OK if i call you by your first name? smile

With regards the Oxygen‚ just make sure you get a demonstration‚ and then YOU repeat the procedure WITHOUT ASSISTANCE‚ before you leave wherever it is you pick up your bottle‚ and everything will be clear‚ and you know you'll be able to do it when you need to.

Also ask your Doctor to prescribe you Imigrin (sumatriptan) or Zomig (zolmitriptan). The triptan group is the recognized go-to drug for knocking a CH attack on the head. You only take them when an attack starts‚ but they stop the attack in it's tracks. In the case of Imigrin‚ some people use the injectable version which will stop the attack in like 5 minutes. I can only get tablets‚ but they work in from 20-30 minutes (hence my previous "only 20 minutes" remark).
Zomig is a newer member of the triptan group‚ I use it if my attacks don't respond to Imigrin for that season.
It's quite common for us CH sufferers to know more about our condition than our Doctors‚ so go in prepared‚ and be firm about what you want. Show your Doctor you know what you're talking about‚ and that you know what's best for it. Be careful not to rub your Doctor up the wrong way though‚ and good luck.

Cheers Peter.


Posted in Untitled on 07 Dec, 2009 - 7:46 am

Hi Happywoman‚
yes‚ i know exactly what you mean. scared to go to sleep‚ yet tiredness only worsens the problem.
I don't know what meds you use. I personally can't get oxygen; it's not available for home use in Russia‚ presumably because of the fire risk‚ but it's not a complicated procedure. Find and read Barry T Coles entries‚ he's the Master of gases here.
I use Sumatriptan tablets 100mg and Topamax 2 x 25mg‚ Sumatriptan as soon as i feel the attack start. They take about 20-30 mins to kick in‚ during which time i'm usually s(h)itting on the loo (sorry‚ but the two seem to be related); And the whole time i'm saying to myself- 20 minutes‚ that's all‚ just 20 mins. I can handle it‚ just 20 mins.

Topamax is a daily preventative‚ they do seem to reduce the intensity and frequency of attacks‚ although the first few times i took them i was spaced out like i was back at college...
The water treatment described on the left there also seems to do some good- flushing toxins perhaps. Except for the inconvenience of peeing twice an hour‚ it can't be a bad thing.
I've also taken L'il fuzzy's advice and gone for a less processed food diet‚ which also seems to help‚ but maybe that's just in keeping the colon activated- who know's?

When you say you can't remember the last time you had fun‚ you mean it was such a wild night smile Sorry‚ just trying to raise a smile.
Keep your chin up‚ Happywoman‚ you know the cycle will end‚ then you can look forward to another 6 years without an attack...

Cheers Peter.


Posted in Untitled on 06 Dec, 2009 - 10:30 am

Hi Sarlu‚
Topomax is usually used in conjunction with other anti-CH stuff‚ maybe the answer lies somewhere there. Maybe something in the Epilepsy negates the effect on CH‚ it's all nerve synapses related somewhere. You must be a fairly rare case though- sorry‚ that sounds a little rude‚ i don't mean it to be. Good luck in finding answers.

Cheers Peter.


Posted in Untitled on 06 Dec, 2009 - 10:10 am

Hi‚ Happywoman.
Well‚ you're positive at least smile What a bummer‚ getting them again after 6 years. I'm just more or less coming off the Autumn cycle‚ also a 2 month thing‚ but i actually had a couple of friends see me in the middle of an attack this time‚ which is very rare for me. Not a real screamer‚ but enough that they got very nervous. I know I was clammy white and sweating‚ eye streaming and red. They were desperate to do something‚ and i was telling them to not make a big deal out of it‚ it'll go away soon... very quiet laugh...
Welcome to the group‚ I hope your CH doesn't escalate and your Christmas is fun and pain free.

Cheers Peter.


Posted in Untitled on 03 Dec, 2009 - 4:32 am

Hi Al‚
O2 helps abort an attack‚ if you catch it fast enough‚ it will not stop a cycle.
Prednisone is a corticosteroid. It takes a while to work (like 2 weeks)‚ but it will help kill the cycle. Usually used in conjunction with other meds. Be aware there are severe side effects- you will eat like a horse. You will blow up like a balloon- I went from 96 to 118 kg in two weeks. You will bruise easily‚ constipation‚ the list is huge. I personally won't touch them again.
Topamax has helped me greatly‚ but again there's quite severe side effects‚ until you get used to them.
I can't get O2 so can't advise you- Barry T Coles is the master on that subject.
Yes I can sense when the cycle is coming to an end‚ and a very welcome time it is too.
You must try and stay positive. Look to your diet‚ possibly eating better will help‚ less processed stuff and more vegetables. LOTS of water‚ all the time.
It's been suggested in various places that magic mushrooms can abort a cycle. I don't know‚ as i've not tried them when in cycle. Whatever you do‚ do it sensibly.


Posted in Untitled on 02 Dec, 2009 - 12:44 pm

G'day Al‚
I don't suppose you want to hear when i went chronic the cycle lasted four years...
Now i just have 6-8 weeks at the start of Spring and 4-6 weeks at the start of Autumn.


Posted in Untitled on 24 Nov, 2009 - 1:13 pm

Hi Al‚
sorry you're here‚ but it's the right place for help.
Zomig (zolmitriptan) is one of the newer of the Triptan group‚ a definite help in CH.
The oldest of the Triptans is Sumatriptan‚ usually known as Imigrin or something like that.
I use both‚ just not on the same day (you MUST put 24 hours between varieties). Depending on conditions‚ some seasons one type works‚ the other doesn't.
Also check out the lists of treatments on the left column there‚ plenty of good advise- maybe something will help.

Cheers Peter.


Posted in Just got pregnant on 24 Nov, 2009 - 4:58 am

Hi Steph‚
congratulations on becoming pregnant! I hope you're pain free the whole time and meds aren't an issue.
It's an U.S. govt site- check out www.medlineplus.gov It's from the national library and covers everything. Chemists‚ homeopathic‚ herbal‚ you name it. It covers alternative names for stuff too‚ so English products should be covered too.
Good luck‚ and I hope you don't need any medication smile

Cheers Peter.


Posted in Untitled on 21 Nov, 2009 - 11:55 am

Hi Gemma‚ very sorry for you. Nice part of the world you're in- my brother's just down the road in Dunsborough.
How do we cope? Grin and bear it mostly. Keep trying the various treatments fellow sufferers come up with (list on the left)‚ change diet‚ lifestyle until the attacks get to a manageable state. The water treatment helps me‚ as it does many others; elsewhere in these pages is how one guy changed his diet radically and virtually cured himself. Oxygen helps many‚ not available up here in Russia‚ but you should be able to get hold of it.

Read as much as you can about them‚ because mostly you'll have to guide your Doctor. Ask questions here‚ don't be shy‚ and above all don't give up hope.

Best Wishes‚
Peter.


Posted in cafergot on 17 Nov, 2009 - 1:33 pm

No longer available‚ Ahura. If you look in a couple of the other forums‚ there's a compounding pharmacy mentioned that can make up a generic version for you. They're in QLD though...


Posted in Untitled on 13 Nov, 2009 - 11:49 am

Yep Fifi‚ as far as the big drug companies are concerned‚ we can go shove it smile

G'day Blaine‚ interesting line of work you're in...


Posted in LSD health benefits on 11 Nov, 2009 - 1:06 pm

A few years back a friend of a friend in the medical faculty organized me a visit with the resident Prof. of Neurology‚ who trialled me on one of the ADD type of drugs ( he didn't say which one it was). Result: immediate cessation of my bout‚ which as i'd been chronic for 4 years was miraculous to me. They stayed away for ages too‚ but have since returned. I'd love to be able to repeat the experiment‚ but i don't know what i took‚ and i can't remember who it was.


Posted in No beer a good thing? on 23 Oct, 2009 - 10:58 am

What you've gotta do‚ is use the time you can't drink to be designated skipper for your mates; then when you can drink‚ you call in all those markers...


Posted in Untitled on 23 Oct, 2009 - 10:53 am

I used to be a regular pot smoker‚ back in the day‚ but i find the modern stuff too strong. Instead of a light hearted giggly buzz i get black thoughts‚ so i don't bother any more. It doesn't trigger attacks for me though. Mind you‚ if someone's passing around some bush weed‚ i'll still indulge- not that i'm in Oz that often. I haven't actually tried acid since i've had CH‚ i could be tempted though...


Posted in Untitled on 23 Oct, 2009 - 9:33 am

G'day Frosty‚ I dunno‚ younger kids seem to take it in stride‚ when they get a bit more aware it seems to be worse for them. I'm separated now so that's not a problem‚ for better or worse.

Funny you mention getting attacks when flying Denis(well not so much ha ha funny)‚ but even when i'm not in cycle i get attacks on long flights. I don't know if it's the warmth of the plane or the general lack of oxygen in the cabin‚ but i usually have to go and stand near the exits where it's cooler and the air seems fresher. I reckon the airlines do it deliberately to knock everyone out at night. No‚ just kidding...

Cheers all.
Peter.


Posted in Untitled on 19 Oct, 2009 - 4:02 am

G'day Denis‚ welcome to the fold‚ sorry you have to be here. Good grief‚ how horrifying for your daughter! As you say‚ we know what it is‚ but for her to witness it first time...

I've just started a cycle so i'm off the booze too‚ but being northern hemisphere it's the autumn one so shouldn't last long‚ i hope. I knew it had started when i was half way through a stubbie and Wham! One way to find out‚ i suppose.

I hope your cycle is a short one‚ Denis‚ and your poor daughter wasn't too traumatized by the whole thing.

Cheers Peter.


Posted in Left or right sided on 16 Oct, 2009 - 4:19 am

Ha. I'm the same as sunset21.
left‚ right‚ left. (marches off...)

cheers Peter.


Posted in Untitled on 10 Oct, 2009 - 8:13 am

G'day Matt‚
i posted this somewhere else too‚ but my view on this‚ is that there's so few of us there's no value to the drug companies to do studies.
As for getting meds cross-linked so they're cheaper‚ maybe a coordinated campaign from CH Australia to the Minister for Health. Any ideas‚ Rod?


Posted in Untitled on 10 Oct, 2009 - 8:04 am

G'day Butch‚ how's it going?
I switch between Zomig and Sumatriptan‚ depending on which works at attack time. Usually when Sumatriptan doesn't work‚ Zomig does. You're supposed to wait 24 hours between going from one to the other. The only problem i've had with it is there's no Russian equivalent so it's hideously expensive smile otherwise all ok.


Posted in Untitled on 07 Sep, 2009 - 12:33 pm

Hi Stefwill‚ welcome to the forum. I'm sorry you had to be here smile
Now you're found us‚ check the info on the left‚ maybe something will work for you. Best wishes and good luck.

Peter


Posted in Untitled on 07 Sep, 2009 - 7:48 am

Hi Kirkulles‚ I don't know Deralin‚ but cafergot i do. Like any of the ergots‚ they can make you feel a bit wonky- like you're slightly out of focus or rubbery. Also I felt as if my hands and feet weren't quite connected to the rest of me. They did lessen the intensity of CH attack though.


Posted in Untitled on 07 Sep, 2009 - 7:37 am

G'day Butch‚
cheers for that. I can't help you with the smileys though‚ they don't work for me either.


Posted in Untitled on 04 Sep, 2009 - 8:05 am

G'day all‚
with mushies‚ you're not supposed to take enough that you trip. The medicinal effect occurs at way lower doses than that.
And Butch‚ no disrespect‚ but using all capital letters means you're shouting at people‚ turn your "caps lock" off.

cheers peter.


Posted in Untitled on 17 Aug, 2009 - 8:39 am

G'day Trent.
Sorry to hear you're suffering‚ mate.
Geez‚ CH and depression‚ that's a tough load to deal with. Check out the full list of alternative treatments on the left side there‚ especially the oxygen and water treatments. I'm in Russia and can't get oxygen (fire risk apparently)‚ but drinking gallons of water has certainly helped reduce the severity of attacks. It can be a pain in the bum running to the loo all the time‚ but it beats the pain in the head.
I also use Sumatriptan (imigrin) tablets; they take about 20 mins to work but knock an attack on the head. I've never used the injection type‚ but i'm told they work much faster. For pain-killers‚ my neurologist put me on Tramadol (37.5 mg) which works really well; but be advised this is an opiate and you could become addicted to them which is not what you need.
Another good treatment is Topamax‚ but if you suffer depression‚ DO NOT TOUCH THEM. They will play havoc with your brain.
Also consider the wise words from Lil fuzzy about diet. I've virtually eliminated cheese from my diet (i don't use milk anyway) and it has made a huge difference.
Above all‚ you need to find a Neurologist or GP who is sympathetic and understands CH. At your age‚ it's likely a GP could consider you as just trying to get meds‚ and that's not going to help your cause.
Good luck‚ Trent‚ and use this forum for support. There's some really clued-in people here that'll help if they can.
Cheers Peter.


Posted in Untitled on 18 May, 2009 - 1:14 pm

G'day Neal‚
Nah‚ I didn't think I was over them‚ i was still walking out of the house armed with sumatriptan and painkillers‚ ever after two and a half years.
Maybe try asking your Neuro if there's someone he recommends. You never know‚ if you ask the right way‚ you could make it sound like you're doing HIM the favour..


Posted in Untitled on 18 May, 2009 - 1:06 pm

Hi Panda‚ L'il fuzzy‚ Frosty and Kate‚ who's thread we've hijacked. Sorry smile Interesting‚ this.
I suppose the amount of toxins we're exposed to in modern life takes a fair bit of flushing‚ and I know I didn't drink as much water as I should- maybe CH is a not so gentle reminder to get back to a proper diet?

Panda‚ i'd love to open a casino in Australia‚ but i'm afraid the law would take a dim view of it. I actually started at Burswood in '85‚ as well as opening both Crowns in Melbourne‚ so i'm familiar with the attitudes in Oz. Nauseating‚ isn't it?
I'm at Taleon Club in St. Petersburg if you want to see a different sort of casino. All casinos are closing in Russia because a lobby group was formed a couple years ago to force restrictions on gaming machine halls (there were 40 000 of them -halls‚ not machines). Things spiralled out of control‚ now all casinos must close‚ which wasn't the original intention- although the bandits are rubbing their hands with glee. Still‚ a new century‚ a new country‚ somebody has to have a go at prohibition. You'd think we'd learn after 6000 years wouldn't you?

Cheers to everyone‚ i'm feeling great after a couple of weeks off the booze‚ so some good has come of it. One thing i have noticed‚ CH sufferers do seem to be optimists at heart‚ but then i guess we have to be.

It's 7 in the morning here‚ the sun is shining‚ i'm just finishing work‚ so off to bed.

Bye all.
Peter.


Posted in Untitled on 18 May, 2009 - 2:22 am

G'day Neal‚ seems we're in the same boat (CH back after a while).

So have you asked your neuro what's with the delay's? Is he swamped or doesn't believe you or what? Either way‚ you need someone you can rely on.

Good luck to you.

Peter.


Posted in Untitled on 15 May, 2009 - 10:37 am

G'day Panda‚ no‚ not a regular break of 2.5 years‚ my only break. I was chronic for around 4 years (a bit less)‚ now they've just returned after 2.5 years break. I've had the odd shadow and a couple of kip 2's or so just to remind me in that time but that's been it.

I'm a casino manager‚ been here 12 years‚ but all gambling in Russia must cease by law before midnight on the 30th of June‚ so the party is over.
Thanks for the cheers‚ but i'm off the grog smile My liver thanks me...

Cheers to you...
Peter

P.S. What do you research?


Posted in Untitled on 15 May, 2009 - 9:45 am

Hi all‚
Been a while since i've been around but it's my turn again‚ unfortunately.
I don't suffer any allergies‚ but find if I eat especially fatty foods it triggers a ripper attack‚ so if that's not good incentive to eat properly‚ I deserve everything I get. I was experimenting during an attack yesterday‚ and found breathing through my left nostril only (i'm left side) seemed to help. I was sitting up properly on one of those gym ball thingy's so air flow was good which also seemed to help. Possibly just my mind messing with me more than it already was‚ but if oxygen helps‚ it stands to reason better air flow also is of value‚ no? Anyway‚ I'm taking L'il Fuzzy's advice and going to be eating lots of veg; i'm already teaching my eyeballs to swim‚ the amount of water i'm drinking.
I'm nervous about the duration of this bout‚ as previously I was chronic for 4 years. What triggered this bout after 2 and a half years respite is anybody's guess.

Hoping you and yours are happy
Peter.


Posted in Untitled on 07 Feb, 2009 - 1:03 pm

Hi Ronny. Bloody hell‚ that's heartbreaking after such a long gap. Have you tried any of the newer triptans like zolmitriptan? I find some cycles sumitriptan doesn't do it‚ so I switch‚ which seems to do the trick. You MUST put in a 24 break between one and the other‚ but your doc will tell you that.


Posted in Untitled on 06 Feb, 2009 - 12:52 pm

Geez‚ if there was any way I could get a run I would‚ so yeah‚ I say go for it.
That fresh Sydney air (cough cough); no really‚ you're the right side of 40 (if my maths is good); if your Doc says you're not going to burst an artery‚ then why not? You've got enough time to do a decent pre-season so you'll not be stiff as a board. If you improve your fitness‚ you improve your blood oxygen carrying capability‚ and that's got to be good‚ right?
The only thing you've got to ask yourself‚ is what would happen in the workplace if you got laid up with torn knee ligaments or something serious like that. Some bosses get a bit narky when you can't walk for 6 weeks‚ or you frighten clients away with the amount of titanium scaffolding poking out of your calf muscles. But if you do get fit and play‚ you could go for ten years‚ but wait a few and it WILL be too late.
Get into the golden oldies and grow old disgracefully‚ that's what I reckon.


Posted in Untitled on 06 Feb, 2009 - 12:10 pm

G'day Mick‚ welcome aboard.


Posted in Untitled on 03 Feb, 2009 - 5:00 am

Hi Kaarin‚ welcome to the club smile
At least you'll be able to show your family there are other people like you‚ and it's not something you can just "snap out of". Maybe print up some of the information so they've got an idea how to help‚ instead of being down on you- could come in handy.
Anyway‚ good luck‚ I hope you can get some understanding and support at home- for sure you'll get it here.

Cheers Peter.


Posted in Untitled on 02 Feb, 2009 - 12:06 pm

Yeah‚ triggers are funny things.
I find an overheated room will trigger me‚ especially if it's a wood fire‚ although that could be because the oxygen level is too low. I find aeroplanes trigger me for the same reason.
Cigarette smoke of any kind does not bother me‚ (possibly because I live and work in a country where smoking is permitted just about everywhere‚ and by everyone)‚ nor does cigar or pipe smoke‚ except if its those vanilla scented cigars. Then I have to walk away. Smoke from a house fire or a burning rubbish bin will trigger me. A bush fire wont.
Red wine or dark spirits can set me off‚ so it's lucky vodka is the drink of choice here. But if I've had a few‚ then alcohol doesn't trigger me‚ whatever type it is. I NEVER have an attack if I've got a hangover- maybe someone can explain that for me?
Work stress doesn't trigger me‚ and it doesn't get much more stressful in the workplace than here‚ but I don't have lifestyle stress‚ so maybe that compensates.


Posted in Detox? on 25 Jan, 2009 - 5:23 am

To be honest I haven't gone any further with the irrigation bit. My spoken Russian is embarrassing enough already‚ without having to stumble through asking for a kit at the chemists.
What I did do though was look for‚ and start on‚ a colon flushing diet. So I now drink lots of fresh fruit and veggie juices‚ eat less meat and pasta‚ hardly touch bread. When I eat muesli it's with drinking yoghurt instead of milk‚ which agrees with me more (I don't know why‚ just because).
Anyway the end result (sorry) is virtually no attacks‚ although I can't say if it's diet or not‚ but I'm not complaining.

I still shadow fairly regularly‚ and had a real attack just last week when in a too hot kitchen with too little air and my mate set fire to a t-towel while cooking fish; but really as I was severely chronic‚ this is a cakewalk (whatever that means). I might bite the bullet and get a flushing kit‚ I'll keep you informed...


Posted in Untitled on 18 Jan, 2009 - 10:30 am

I had the same thing when I did the passing over of the file bit- the new Doc got the hump thinking I was telling him his job. A phone call at least clues the new Doc in fast.
Good luck in your search‚ it's a bummer when you hit a brick wall‚ but stay cool with the Doctor's‚ it'll come right.


Posted in Untitled on 17 Jan, 2009 - 4:18 am

G'day Vince‚
can't you ring your old Doc and get him to ring your new Doc and pass on your info? It would save you a whole heap of drama.


Posted in Untitled on 17 Jan, 2009 - 4:14 am

G'day Stretch‚
yeah‚ I'm used to Topamax now‚ and touch wood‚ no attacks at all. But i'm still wary about having a few sherbets...


Posted in Untitled on 06 Jan, 2009 - 11:54 am

Hmm‚ back when I was at college‚ we had similar things....
Barry‚ you're a D.I.Y. genius.


Posted in Untitled on 06 Jan, 2009 - 8:58 am

I suppose you've gotta be careful about water on the lungs...


Posted in Untitled on 02 Jan, 2009 - 1:33 pm

Hi Lisa‚ I'm online if you want to chat PM.


Posted in Untitled on 02 Jan, 2009 - 9:32 am

Ha‚ isn't that weird. I find the amount of pills I have to take upsets my stomach‚ and ginger tea settles me down‚ and I just love ginger beer anyway. I used to love swigging on ginger wine on a cold night's fishing‚ but that's a different story..
Ginger beer is another thing I can't get over here‚ dammit‚ or ginger wine‚ and the nights are sure cold at the moment.


Posted in Untitled on 28 Dec, 2008 - 4:23 am

Hi Jade‚ lovely part of the world you're in there. Welcome to the forum.
Good God- 12 hour cluster attacks‚ how horrifying. Is that continuous or ebb and flow? The mild pain every day sounds like a shadow‚ but there's no real "one size fits all" with clusters.


Posted in Untitled on 28 Dec, 2008 - 3:50 am

Hi Leigh‚ wow‚ you're really in the wars. Hey‚ I would suggest you need to be REALLY closely monitored by a professional in this situation.
We can be here for you‚ but I would think that's probably not sufficient for you right now‚ especially if you don't know how you'll react to new meds.
Please try and get professional help.
Best Wishes to you and your loved ones too‚ Leigh.


Posted in Untitled on 28 Dec, 2008 - 3:20 am

Hi John‚
I was actually going to ask about that; where Hefty says you don't sleep for two days‚ might ten shots of espresso a day have something to do with it smile

Now I'm getting on a bit‚ I find more than two or three coffees in a day makes me feel sick. I still love the stuff‚ I just can't drink so much of it.


Posted in Untitled on 25 Dec, 2008 - 10:03 am

Hi Hefty and Hubby (John)smile

My name is Peter‚ I'm a Sandgroper‚ grew up in the hills outside Perth‚ now living in St. Petersburg‚ Russia.

I was chronic 6 years‚ been fairly pain free the last 2 with just the occasional attack‚ no real established cycle as yet‚ and I'm hoping there won't ever be one.

It took me 2 years to find out what I had‚ (and I was suicidal by that stage)‚ ironically from an Aussie Doctor working here (named Bruce- no shit)‚ and he tried me on everything. Dexamethasone (same as prednisone)‚ verapamil‚ ergotamine‚ you name it. What I didn't try was medical Oxygen‚ which is not available in Russia‚ or Sumatriptan which I didn't find out about until this site‚ and is now more likely to be on me than underwear.

Where am I going with this? Don't give up. As more of us are sharing information‚ we're getting to understand this thing. Fr'instance‚ instead of taking a sleeping pill‚ try getting John to have just a little sip of Codral night or similar. It's not as heavy or prone to putting you into a cycle‚ but it's enough to relax you into sleep.

Well‚ that's that. Good Luck.
Merry Christmas everyone.
Cheers Peter.


Posted in Untitled on 24 Dec, 2008 - 3:22 am

G'day Paul (and Hefty)‚ welcome to the forum.

Best wishes for the silly season from Russia.

Cheers Peter.


Posted in Untitled on 19 Dec, 2008 - 7:51 am

LOL Zinzan. I'm a motorcycle riding ex rugby playing casino manager living in Russia. A saint i'm not. But my name is Peter and I live in St. Petersburg‚ so what else would I tag myself?

I saw the '87 All-Blacks play in Perth‚ when Zinzan Brook replaced Buck. Without doubt the best rugby team EVER to play the game. There was a prodigious skill difference between them and any other team in the world at the time. My favourite player (excluding God‚ I mean John Eales) was Michael Jones. He knew exactly where the ball would be‚ and was there‚ ready to pounce‚ before anyone else even knew it had left the maul. Understand I'm an Aussie to my bootstraps‚ but I was in awe of those guys‚ and it's an honour and a privilege to have seen them play.

On CH and pain‚ anyone that gets CH and hasn't killed themselves has a high tolerance to pain. Let's face it‚ we're all as tough as old boots‚ and generally pretty easy going about it‚ because we have to be.
On that happy note‚ Have a safe festive season‚ Everyone. Best Wishes for a pain free 2009.
Cheers Peter.


Posted in Untitled on 17 Dec, 2008 - 10:41 am

Hi zinzan‚ your surname's not Brooke's‚ is it? Welcome to the forum‚ sorry you had to be here.
I'm also left side‚ and an ex rugby player. I've got a high tolerance to pain too‚ but in rugby and when I fell off a motorcycle once‚ I put it down to adrenalin. I sprained both wrists and didn't know it until the next morning. When the nurse was scrubbing blue metal out of my butt and being VERY liberal with the alcohol‚ it barely registered as pain at all.
When I have a cluster attack‚ I know it's only going to last 20 minutes‚ and that's what I keep telling myself. I can handle it‚ it's only 20 mins‚ hang on‚ like that. It's a bit like getting monstered in a scrum‚ you just have to hold on tight.

Cheers Peter.


Posted in Untitled on 13 Dec, 2008 - 3:11 am

Hi Lil fuzzy‚ i'm guessing it's because they cause an altered state of consciousness‚ but the effect can cause people to go loopy. As with all such things throughout history‚ use can become abuse‚ therefore control is deemed necessary.


Posted in Untitled on 12 Dec, 2008 - 5:07 am

Who on earth has the right? The politicians who govern and control our lives‚ that's who.
Oh‚ and you might want to have a word with the drug companies who hate things that grow for free‚ too.


Posted in Untitled on 08 Dec, 2008 - 1:19 pm

Hi all.
My neuro suggested I give these another go at a reduced dose‚ which I have done. I must say‚ now that I don't feel permanently wasted (oh‚ to be young again)‚ these things actually seem to do some good.

I would caution anyone whose Neuro suggests trying them; start with the lowest possible dose and start on a day when you have nothing planned. Until you know how these things effect you‚ you don't want to be driving your car‚ pruning your rose bushes or cutting your kid's hair.
And for God's sake‚ watch the booze. You know the cheezy time warp scene in "Matrix"? You get flashes that feel like that. Time feels like it's standing still‚ and you can move through it‚ but then it's like ten minutes later. If you're crossing the road or something like that‚ I'm guessing the consequences will be ugly. That's only happened if I've had a few reds‚ no other time.


Posted in Untitled on 27 Nov, 2008 - 3:08 am

Hi Leesy‚
the area just south of Bunbury is famous for its fungus- I indulged a few times way back in the '80's‚ I presume there's still some around. I'm guessing the constabulary would also be aware of this.
I didn't suffer from CH then‚ so I can't comment on the medicinal value of the shrooms- but then again‚ maybe because I took such substances I didn't suffer from CH. Who knows? Good luck in your search- now's about the right time for a country "picnic" seeing as you're having a wet spring...


Posted in Untitled on 26 Nov, 2008 - 6:13 am

Yep- I've tried Topamax‚ it had me walking around in ever decreasing circles buzzing off my nut. Truly‚ I felt stoned‚ and I haven't smoked grass in years.
I'm a casino manager‚ and I have to think fast on my feet. On this stuff‚ I couldn't think full stop. I had to write everything down‚ because between doing the action and writing it in the log‚ I'd forget what it was I'd done. This might be a desireable effect for some‚ for me it was a disaster. I have a driver here which I'm grateful for- I don't think I could have driven a car‚ let alone been in control.
I can't comment on the effectiveness of Topamax for controlling CH as it's effect was too drastic for me to continue using (this was at 50mg‚ 25 twice daily)‚ but then Verapamil and Prednisone are off my list too.


Posted in Having a beer during a cycle on 22 Oct, 2008 - 12:52 pm

G'day Wayne‚
Congratulations to your son‚ and your wife for doing the squeezing smile


Posted in anyone else has had any symptoms like twitching? on 05 Oct, 2008 - 10:32 am

Hi Moulis‚
my condolences to you on your Mother's passing‚ as least she'll be at peace now.

What you say in being overwrought makes sense‚ and taking supplements of Mg‚ taurine etc certainly won't do any harm. I'm actually starting to like the taste of Red Bull myself...

I've not had any problems with twitching or nervy numbness; but I do get a "pop" in my inner ear and that sump plug draining feeling you describe when an attack finishes. I've described it to my neuro; he stroked his chin‚ said "very interesting"‚ while giving me a look that said NUTS.
Best wishes
Peter


Posted in Untitled on 05 Oct, 2008 - 6:34 am

Hi All‚
My neuro prescribed beta blockers for me way back when- they didn't assist in any way‚ but they made me feel like crap. Apparently they can be helpful for some‚ but certainly not for me.


Posted in Untitled on 29 Aug, 2008 - 3:48 am

Barry‚ with less than 1% of the population suffering CH‚ the medical profession is never going to get REALLY interested. We've not profitable enough. Or am I just too cynical? I'm just glad the internet came along‚ otherwise most of us would go stumbling from one bout to the next wondering what the hell is going on and with no idea what to do about it.


Posted in Untitled on 27 Aug, 2008 - 1:36 pm

Hi Hoolio‚
gotta agree with you on the drinking bit- I also stopped (as well as smoking) and found it helped enormously.
Dignity- I stopped worrying about that long ago...


Posted in Untitled on 27 Aug, 2008 - 6:54 am

Hi Crystal‚
aspirin also thins the blood‚ maybe that is what is helping. I can't see it's analgesic properties doing anything much for CH.


Posted in Untitled on 27 Aug, 2008 - 6:43 am

Hi Janine‚ sorry you're having such a rough time of it.
Lying down without light or noise sounds like the migraine component of your ordeal- the lying down part is usually out for CH.
Have you managed to isolate any triggers for your migraines? If you can work some of them out and eliminate them‚ you might have an easier time of it. What a horrible combination!
Best wishes to you and your family‚ I hope you find some relief.
Peter.


Posted in Untitled on 02 Aug, 2008 - 12:09 pm

G'day Barry‚ how's sunny Karratha? Love the place‚ although I haven't been there for a few years.

I'm a chronic‚ although I had a brief patch a while back with no attacks‚ thanks to a controversial treatment. My trouble is I can't get access to the stuff you talk about. I'd LOVE to try oxygen‚ but it's not available here. None of the ergots are available‚ and although I haven't tried to find it yet‚ I suspect it's going to be interesting asking for Taurine at the Chemist. I'll give it a go tomorrow‚ and let you know how many times I get laughed at.
Good on ya for still managing a drink‚ that's a pleasure I can't risk.


Posted in Untitled on 29 Jul, 2008 - 1:43 pm

Hi David.
As an Aussie living in Russia I have some experience with the cold air treatment smile‚ but I get attacks with about the same frequency. Maybe less particles in the air?


Posted in Untitled on 04 Jul, 2008 - 7:24 am

Hi Steve- I also used to feel better after throwing up‚ but I only ever threw up if I took too many painkillers‚ so what was happening‚ I don't know. Careful with anything paracetamol based‚ it's easy to overdo it and cause serious liver damage. If you do that‚ you're screwed- nothing they can do for you. If your Neurologist gives you panadeine forte‚ ask for a prescription for Tramadol. It's very effective but not so harmful/addictive as Panadeine forte‚ and you're less likely to feel ill.
I also got good relief with an ergot based drug‚ can't remember which one‚ but they're another one that's not available in Russia. My neuro said not to use it as a preventative‚ only when an attack started. Apparently magic mushrooms will stop an attack as they're similar in composition to the ergot family- I'm yet to try them though. Maybe next time I'm in Amsterdam....


Posted in Untitled on 30 Jun, 2008 - 2:41 am

G'day Steve‚ blimey‚ 3 years between bouts- it must have been heartbreaking when they came back.
When you say none of the meds work‚ do you mean as in not stopping the whole cycle‚ or do they not stop the attack?
I also use Zomig‚ but only when Imigran doesn't help. Sometimes a bout won't respond to one‚ so I switch to the other. Essential to wait 24 hours when going from one to the other though. I find one or the other will stop an attack‚ and give say 12 hours between attacks- long enough to get some sleep.
Barry is the man to talk to about oxygen‚ he's the full bottle on it(pun entirely intended). I've never tried it- medical oxygen is not available in Russia for some reason.
Good on you stopping smoking. I did the same and found the attacks were far less intense.
Good luck to you.


Posted in Untitled on 04 Jun, 2008 - 4:44 am

No‚ Lil Fuzzy‚ it does not annoy me when people refer to the theory of evolution as fact‚ I merely point out it's a theory.
I have no problem with people believing the bible is fact‚ providing they understand there is room for doubt‚ and don't belttle me for a different view.
I don't care what BC believes‚ provided he doesn't criticize me for not believing the same thing- he is entitled to his beliefs‚ but to foist them on others is unacceptable.
With reference to your second last sentence‚ Lil Fuzzy; you don't see the irony in it?


Posted in Untitled on 04 Jun, 2008 - 4:32 am

Hi David‚ sorry to hear you're having such a tough time of it‚ but glad to hear you're improving.
With Imigran‚ it's actually only the first of the Triptan range of drugs. Imigran is Sumatriptan‚ but there's also Zolmitriptan and a third I can't remember the name of. Sometimes I find Imigran doesn't do the trick‚ so I swap to Zolmitriptan. Ask your neurologist. NEVER take Zolmitriptan within 24 hours of Sumatriptan‚ and vice-versa.
You might also ask if your Neuro will try you on Ritalin- it's extreme but it has documented success.


Posted in Untitled on 01 Jun, 2008 - 9:22 am

Who says there IS a satan? You- to explain your weakness? Stop quoting the bible BC‚ it was written 200 years after the fact by people who could not have been there. If I want fiction‚ I'll read Wikepedia.
BC‚ You write in the typical patronising tone used by religious zealots. You have no information about my religion or state of spirituality‚ yet you make assumtions based on your own close-minded view of the world.
No need to be sorry‚ BC‚ you didn't anger me either. Just another assumtion on your part.


Posted in Untitled on 31 May, 2008 - 12:21 pm

Hi All.
I've just had a rather unpleasant week lying on my back in a Russian hospital- to be avoided if at all possible- however‚ some good did come out of it. My attacks have returned to their usual chronic frequency in the last couple of months‚ and as it was an unexpected stay in hospital‚ I only had my usual two Imigran tabs and a few painkillers on me. The hospital pharmacy didn't stock them‚ so I was concerned to say the least come attack time‚ 10.30 in the morning.
Now comes the good bit.
As most of us know‚ drinking bucket loads of water can help decrease CH severity‚ although not eliminate them.
So‚ I'm expecting my attack as usual- nothing. No shadow‚ nothing. Hmmm‚ I thought‚ unusual‚ see what happenens at 18.30. Again‚ nothing. Next day‚ 10.30‚ nothing.
What could it be? Then the penny dropped‚ I'd been on glucose and saline drips for two days; i.e. the water treatment on steroids. I didn't have an attack the whole week.
So next time you're on cycle‚ get yourself to a clinic and ask to be put on a drip and see if it helps- i'm REALLY curious about this now.


Posted in Untitled on 08 May, 2008 - 1:12 pm

Hi Lil Fuzzy. This is interesting. As I posted way back‚ a friend of mine had CH‚ but after "getting flushed" (collonic irrigation) he never had another attack.
Not to get too gross about it‚ but I wonder if there is a link between bowels and CH. If there is‚ then a raw food diet couldn't not help.
I'm still trying to work up the courage to "get flushed"‚ not made easier by not knowing how to say it in Russian.


Posted in Untitled on 08 May, 2008 - 1:02 pm

About the only trigger I have is lack of sleep- which is a problem because‚ as we all know‚ sleep means an attack. Very vicious circle.


Posted in Untitled on 08 May, 2008 - 12:58 pm

I find Imigran really helps too. What do they cost per pill in Oz‚ Barry?


Posted in Untitled on 03 May, 2008 - 1:54 am

Hi ljfraser‚ it does sound like a bit of each. CH doesn't usually have triggers like that. Have you asked your GP for a referral to a Neurologist?


Posted in Untitled on 30 Apr, 2008 - 12:10 pm

No worries‚ Lil Fuzzy.
I also enjoy conversations about spirituality etc‚ but I do get annoyed when someone brings up the bible as if it is a factual tome. I don't dispute there is valuable information contained in the bible- the ten commandments are certainly a fine set of rules on which to base one's life. However‚ to consider the entire book as fact is ludicrous and laughable.


Posted in Untitled on 30 Apr, 2008 - 1:46 am

Lil Fuzzy‚ you may have noticed I did apologize for being rude when I wrote that.
I presume then‚ you don't mind if someone implies you are spiritually wrong?


Posted in Untitled on 29 Apr, 2008 - 6:00 am

Barry‚ you're a star!
Now‚ if there's only some way to get the Russian authorities to register O2 as a medication‚ I'll be able to try it....


Posted in Untitled on 29 Apr, 2008 - 4:46 am

Lil Fuzzy‚ I am not abusive of anyone's religion. I strongly object to BC suggesting that I‚ and all other CH sufferers‚ may be spiritually incorrect in that I (we) suffer from CH. He may say that was not what he meant‚ but that is what his implication is.
Presumeably he is saying the devil causes them‚ because in his second post‚ he says he believes god is always good. If he believes that‚ then he cannot believe god would visit CH on ANYONE.


Posted in Untitled on 26 Apr, 2008 - 12:11 pm

Good grief‚ I can't believe I wasted four minutes of my life reading that crap. BC‚ my apologies for being rude‚ but I find your hypothesis as irrelevant as the bible you mention.
For your wife's sake‚ I hope she doesn't ever suffer again‚ but CH being CH‚ they could come back.


Posted in Untitled on 06 Mar, 2008 - 10:27 am

Sorry Lil Fuzzy‚ I can't find the link. I've got a paper copy floating around home somewhere‚ I'll try and dig that up.
Part of the essence of it‚ is that when the attacks get so bad that the patient is suicidal‚ then the Neurologist should consider addiction to painkillers or other medication as the lesser of two evils.


Posted in Untitled on 01 Mar, 2008 - 3:37 am

Hi Lil Fuzzy. I'm not sure. I've done some research‚ and apparently it was common until the 50's‚ until Doctors were steered away due to potential addiction. It has something to do with inhibiting re-uptake of dopamine (or the other way around). I was a guinea pig for a Professor of Neurology‚ and only got the chance by fluke. I understand Ritalin is sometimes prescribed in the U.S. for the same reasons.
I'll try and hunt down the info I found and give you the link.


Posted in Untitled on 25 Feb, 2008 - 2:52 pm

Hi Lil fuzzy‚ you're right‚ I guess Feb hasn't been too bad for everyone. I've (frantically touching wood) been cluster free for a while. I have no idea why. I stopped smoking in Oct '06‚ had amphetamine treatment (really) for 5 weeks‚ and since then have had very minor single day attacks. This from chronic‚ every third day for 36 hours. So I'm delighted.


Posted in Untitled on 25 Feb, 2008 - 2:48 pm

I do plenty of pacing around the apartment‚ but that's not by choice...


Posted in Untitled on 31 Jan, 2008 - 12:17 pm

Hi Jono‚
have a look at the "oxygen" thread further down the list- Barry Cole gives comprehensive advice on getting help. Good luck to you.


Posted in Untitled on 19 Jan, 2008 - 1:09 pm

And good luck to you too‚ Debbie. I hope your bout is shorter and softer than usual...


Posted in Untitled on 06 Jan, 2008 - 6:25 am

Hi Vitaliy‚ how's things in Moscow?
Did your Doctor know what CH was or did it take a few tries before they knew what it was?
Also‚ can you tell me what medication your Doctor recommended for you.
Thanks‚ Peter.


Posted in Untitled on 09 Dec, 2007 - 7:34 am

Sorry‚ for you‚ Lea‚ not Kiki. Good Luck.


Posted in Untitled on 09 Dec, 2007 - 2:52 am

Hi Leanne‚ sorry you had to be here‚ but isn't it nice to find company! As I said to Kiki‚ ask your neuro if you can try the other triptans‚ maybe they will help. Also ask to try Ritalin or Dexamphetamine- they stopped my cluster cold‚ I had 5 weeks without an attack for the first time in years. Your Neuro will have to be an open-minded type though. Good Luck.


Posted in Untitled on 09 Dec, 2007 - 2:41 am

Hi Kiki- the cold air trick- lots of people find a bit of relief sitting in the blast from an air conditioner‚ usually in the car because it's a bit more private and seems colder in the enclosed space. As I'm in Russia‚ and it's winter- I just open my living room window... It doesn't stop the attack‚ but it sure helps. Has your neuro tried you on Imigran (sumatriptan)? My neuro didn't even know about it‚ but thanks to this site that's my go-to front line stuff. It doesn't work as a preventative but it can stop an attack. Sometimes it doesn't work‚ I now have three variants of the triptans‚ I'm using Zolmitriptan at the moment‚ wnich seems to be doing the trick. The down side is they're hideously expensive in Oz. Ask your neuro‚ and good luck. In the menu on the left of this page is the "medications" tag‚ check it out and talk to your Doctor about each of them- you might find you know more than they do.


Posted in Untitled on 08 Dec, 2007 - 11:18 am

Hi Kiki- I don't get the droopy eye bit either‚ but the tearing is synonymous with the condition. Others have talked about the embarrassment they feel when it happens‚ my mind is usually on other things..
The black eye thing is very common if you haven't been getting enough sleep- might that be the cause? I've not heard it associated specifically with cluster before.
Coincidently I'm just in a fresh bout myself- at least I can do the cold air trick without any hassle..


Posted in Untitled on 05 Dec, 2007 - 2:17 pm

Hi Kiki- sorry you had to be here but good luck anyway.
Is cortisole maybe corticosteroids? They work for some‚ but will make you eat like a horse‚ so be careful.


Posted in Untitled on 06 Nov, 2007 - 7:23 am

Eek‚ that's ugly‚ going through the hell of stopping smoking only to have your clusters get worse. Did your neuro give you any reason why that happened?


Posted in Untitled on 03 Nov, 2007 - 8:34 am

When I stopped smoking cigarettes‚ I noticed an immediate lessening in the intensity and duration of my attacks. Have any other members noticed the same thing? Any members not had any change after stopping smoking? Thanks in advance. Peter.


Posted in Detox? on 30 Oct, 2007 - 6:20 am

Hi Kate‚
not exactly sitting still‚ and I have managed to break one dunny‚ but it's the coolest room in the apartment. I still can't get O2 so I'm spared the indignity of making a mess of it.

Apart from one slight attack on the plane coming back from S.A‚ I've been almost attack free for the past month-- (frantically touches all wood in the area...)
My Neuro in OZ tried me on ADHD drugs a year ago and they worked brilliantly‚ so in South Africa I picked up some diet pills which had almost the same ingredients just to see. Well‚ they work. It might be unconventional but I don't really care‚ attack free for a chronic is like hitting the lottery.
Now I just need to get my system flushed...


Posted in Detox? on 29 Oct, 2007 - 8:25 am

My apologies for the‚ ahem‚ nature of this post‚ but my curiosity has been raised by a chance encounter. I've just been on holiday in South Africa‚ staying in a tiny village of 5 thousand people.
I was questioned as to why I didn't drink‚ and told my friends of CH. One older guy in the group was‚ to my astonishment‚ a past sufferer and we chatted for a bit.
I mentioned that when I had an attack‚ i usually sit on the toilet‚ and frequently have a dump at the same time. (Sorry- gotta give the background)
My friend then said that he had had to have collonic irrigation as part of therapy for a colon problem and bam- no more CH. Never had one since. Has anyone ever heard of such a thing happening? I am not averse to trying collonic irrigation‚ but would like to know if anyone has tried it‚ and what results they had.


Posted in Untitled on 26 Sep, 2007 - 12:09 pm

Hiya Stephen. Best wishes for you and your support crew... Nice part of the world you're in- when it's had a drop of rain.


Posted in Beer anyone? on 18 Sep, 2007 - 1:35 pm

No way‚ Brian- FourX is Queensland. It might be made by Swan now‚ but it's originally from there. IIRC‚ Powers bitter took off after Swan bought FourX.
I bumped into a Cop from Queensland two days ago- he tells me Players nightclub on the Gold Coast is no more. I remember buying 24oz mugs of XXXX for two bucks in there‚ but DAMN‚ the next day was dire.


Posted in Beer anyone? on 18 Sep, 2007 - 7:17 am

Phil‚ when you say "Adelaide's choice" did you mean the Godawful West End or the remarkably delicious Cooper's sparkling? How the hell one state can come up with products that far apart in drinkability is astounding. Actually‚ considering Adelaide's water‚ how do Cooper's make such a fine brew?


Posted in Beer anyone? on 17 Sep, 2007 - 4:01 pm

Hmmm‚A banana bender critisising West Aussie beer- something wrong there. I've always found VB a poor imitation of Emu bitter myself‚ but you can't help loving your local brew. Be a shame if your local brew was FourX though.. only really good for keeping you regular- think eye of a needle. But if factories on the label is bad‚ how about Cascade? Very good drop- not that I've had the pleasure recently. But gotta agree‚ no-one drinks Fosters in Australia. Has anyone tried the new Baron's stuff? Apparently taking the place by storm.
I had a few Baltika's watching the Rugby and very nice they were too-I hope it's not going to cost me too much later. Good Russian beer but about the same as VB and the like‚ except a half litre can is about a dollar. Go the Wallabies...


Posted in Untitled on 10 Sep, 2007 - 3:23 am

G'day Phil‚ sorry to hear you're having such a tough time of it. I know what you mean about Verapamil- horrible stuff. Has your neuro tried you on Ritalin or Dextroamphetamine? Normally used for ADHD kids. If (s)he hasn't‚ give it a go. I had five weeks without an attack‚ I couldn't believe the relief. Apparently it used to be used in the 50's and before‚ but the obvious problem of addiction means it's been shelved. Your neuro has to weigh up possible addiction with your situation- it might be a justifiable risk. Good luck to you. Peter.


Posted in Untitled on 02 Sep, 2007 - 6:46 am

Hiya Mike- I use two types of painkiller‚ Keterolac- not available as tablet in Australia‚ only injection‚ and brand name Zaldiar‚ which is Tramadol. Both really strong stuff. Apparently‚ and I can't remember where I read it‚ if you split morphine you get Codeine and Tramadol. I don't like the way I feel on Codeine; Tramadol‚ on the other hand works great‚ and is far less addictive than other opiates. Q says in another thread it provides good relief- I agree. When I feel an attack coming on (tickling at my hairline over my left eye)‚ I take a 50mg Sumatriptan and two Ketorol. Then I go and sit in the smallest room‚ rock back and forth telling myself‚ 20 mins‚ just 20 mins. Sometimes the attack doesn't develop‚ as it's over long before the drugs could kick in. Other times I know it's the drugs that are doing their thing and stopping the attack. If I don't catch the first hairline tickle‚ and the beast gets out of the box‚ then it will be Ketorol and Sumatriptan‚ followed by Zaldiar. Until two weeks ago‚ I hadn't heard of Sumatriptan‚ so it was just painkillers. Until a year ago‚ Zaldiar was OTC in Russia. Now it is a nightmare to get‚ as are any prescription meds in Russia. Still cheap though- 100 Ketorol is about $5 aussie‚ 100mg Sumatriptan are $20 for two‚ both OTC.


Posted in Untitled on 01 Sep, 2007 - 1:05 pm

A lot of folks say the tablets are hit and miss- they've worked for me every time so far‚ but that's been in conjuntion with painkillers- I don't rely on Sumatriptan alone for relief. The cost of the pills will give you a nervy turn though‚ as will the stingy allotment by the health dept. Good luck.


Posted in Untitled on 31 Aug, 2007 - 4:03 am

Hi Andrew. Nasty choice- burning holes in your nostrils or getting stabbed in the back of the eyeball. Have you tried Sumatriptan in tablets? I am a new convert to the pills- I haven't tried the spray yet‚ although I have one. As others have said‚ the tabs seem to work best taken not as a preventative‚ but when an attack is actually happening. They leave me feeling lethargic‚ but I'll take that over lightning bolts through the eye any day. Good luck to you. Peter.


Posted in Untitled on 31 Aug, 2007 - 3:47 am

Hi Mike‚ welcome to the club. Wow‚ your neuro doesn't believe in being underprepared! What's prednisone taper? I know the prednisone bit‚ what's the taper bit? Is that the regime or a stick? smile I'd stick a smiley there but my computer hates them and wont co-operate.


Posted in Untitled on 28 Aug, 2007 - 11:20 pm

Thanks everyone. I don't know why‚ but medical O2 is unavailable in Russia. Very strange place when it comes to meds. Still‚ I will keep trying- not a not of choice really. Batch has given me an idea though- I was being treated by the top Neuro here‚ who happens to work for the military. Surely the military has medical grade O2 for pilots‚ no? Worth a look see. Cheers all‚ I'm off to work. Peter.


Posted in Untitled on 28 Aug, 2007 - 6:47 am

Snotticles? Not going to go there‚ either. I was out for a walk today- definitely a nip in the air‚ and it's still officially summer. Hopefully we will get an Indian Summer‚ it can happen.

I'm trying to get used to a change in attack times- does this happen to you guys as well? I've been a ten in the morning sufferer for yonks‚ but after just 3 days on that godawful Vasoblast‚ I'm now midday and midnight‚ which is highly inconvenient‚ as I work permanent night shift. I don't want to do steroids or vasoblast again‚ how else can I change the attack time? Anyone got any ideas?


Posted in Untitled on 24 Aug, 2007 - 2:09 am

Hi Suz Q. Wow- it must be heartbreaking to get an attack after such a long time. Has anything changed that might have kick started them? Here's hoping you go another 2 years without another cluster. Cheers Peter.


Posted in Untitled on 22 Aug, 2007 - 8:48 pm

I'm glad I wasn't one of the restrained rats having arse and brain temperatures measured. If I find it‚ Ice-man‚ I'll try it‚ but I'm trying to get oxygen and Lithium as well. I get the feeling I'm going to be on a federal watched list soon.
I have to say‚ you're way tougher than me- I need to know relief is on the way- the clock counting down helps me not top myself.
Someone else mentions Tramad(?here Tramadol)- that's been my front line until now. I KNOW it will kick in in 30 mins or so‚ I can hold on that long. Scary that I didn't know about Sumatritan until now- over the counter and about $5 a time (Russian version)- you know the song "it's gonna be a bright‚ bright sun shiny day?" That's how I felt.


Posted in Untitled on 22 Aug, 2007 - 8:15 pm

Does "copping a root" mean the same thing in Australian as in American? I've got a feeling it doesn't...


Posted in Untitled on 22 Aug, 2007 - 8:58 am

Wow‚ some of you guys are hard! I can't even imagine suffering a 7 or worse without knowing for certain something is going to kick in within half an hour. What is kudzu? Apart from being an invasive weed and known to help alcohol withdrawals‚ I couldn't find any meaningful info.


Posted in Untitled on 21 Aug, 2007 - 10:29 am

Did you mean corticosteroids? Another variant (very similar‚ I understand) to Prednisone is Dexamethasone. I was given a 4 week regime‚ 5 tablets for 5 days‚ 4 for 4‚ 3 for 3‚ 2 for 2‚ 1 for 5 days‚ pills are 5mg. Same side effects‚ water retention‚ extreme hunger‚ easy bruising‚ poor wound healing as Prednisone. Busted the cycle but changed the times of attacks as well. Had to carry an advisement card as doctors etc need to know you're on steroids. A really unpleasant experience‚ but we're all used to them anyway (trying to insert smiley here‚ buh gar).


Posted in Untitled on 19 Aug, 2007 - 7:08 pm

Righto- revealing a bit about myself here- maybe someone can explain this... I don't do this now.

After 18 months or so of clusters‚ without any diagnosis‚ I discovered that if I drank a bottle of vodka before the initial attack struck‚ it wouldn't. Then I would be OK for two days‚ because I never get an attack after getting pissed. As I work two on‚ two off‚ I had found a way to defeat the beast. Except I was climbing into a bottle. Are there any Neurololgists gathering info out there? Why could this possibly be?
Anyway- thanks to the good people here‚ I asked at my local Apteka (Chemist) and got Imagren under the local name at half the price and over the counter. I hope the joy I feel makes good things happen for you all‚ too.
Peter.


Posted in Untitled on 18 Aug, 2007 - 5:25 am

I'm interested to try Lithium‚ I've heard it does good things‚ but haven't seen it here.


Posted in Untitled on 18 Aug, 2007 - 3:30 am

My new doctor also said use Imegran with an attack‚ not to prevent it. Both times it worked- now I have to get some more. I'm stopping using the Vaso whateveritwas‚ last night was gruesome. First time ever I've had an attack at work.
Whoa‚ easy on the rugging up‚ Brian. We've still got 6 weeks before it starts to cool down. When it does start to cool down‚ it will go from summer to winter in about a month‚ just time for the leaves to turn and fall off. Then it starts to get cold...
If you sat in your fridge‚ you'd be warmer than if I went outside. If you have a commercial freezer- the minus 18C variety- that's what it's like‚ although it can get colder. Below -25‚ if it's quiet‚ you can hear your breath hitting the ground. Also the snot freezes in your sinuses all the way to your ears and it hurts like blazes.
It also never snows when it's that cold‚ because there's no clouds. If it's cloudy it's not that cold.


Posted in Untitled on 17 Aug, 2007 - 11:30 am

Can you tell me what doses you were on please?


Posted in Untitled on 17 Aug, 2007 - 8:00 am

It's a funny thing about meds- some are really easy to get‚ some not. Oxygen is impossible to get. I've not tried it so don't know if it works for me.
Ritalin is also impossible. It's not a method in mainstream usage‚ but it worked a treat for me (my neurologist in Oz tried it on me last year)- I had 5 weeks without an attack‚ the only break I've had in 5 years. I came back to Russia all excited‚ only to discover it's not registered as a medicine here. I was gutted.
Some posters here mention sitting in an air-conditioned car; mostly I just have to walk outside‚ but yes‚ the cold helps.
We get Ketorol tablets here‚ not available in Aus‚ very strong pain-killer‚ non narcotic so non-addictive‚ 100 tabs for around AUD5. Another great painkiller I use is Zaldiar (Anglisising the Russian)‚ which is Tramedol plus paracetomol. Narcotic‚ but low on the addictive scale. They were over the counter until just recently. Anything prescription is a real pain in the butt to get. No repeats‚ fresh visit each time. Some posters say they just tough it out- not me‚ way too chicken for that.
I did a double course of Dexamethasone (60 days) same stuff as Prednisone‚ and went from 95 to 118kg in the first two weeks. Yikes. That was 18 months ago‚ I'm still not back to normal. I started a new regime just two days ago‚ Vaso something or other‚ the first two doses triggered attacks so I'm a little nervous about it. I also tried Imagren tablet(sp?) for the first time yesterday‚ worked great but are US$15 each. No HBF here. I'm interested to know what is used in Oz‚ as I was just experimented on last year.


Posted in Untitled on 17 Aug, 2007 - 4:43 am

G'day Barry‚ sad to meet you‚ if you know what I mean. You must have thought you were going insane during your first bout‚ when no-one can tell you what's going on- I know I did. I love your part of the world‚ although it's been a while since I was up that far. Tell you what‚ you can think of me when you're too hot‚ and I'll think of you when I'm too cold. Cheers to you.


Posted in Untitled on 17 Aug, 2007 - 4:27 am

Hiya‚ Brian‚
funny old world isn't it. I'd never heard of cluster headaches but I'm glad Dr. Bruce had. Previously I'd been told Sinusitis blah‚ blah blah‚ I'm sure most of us have been through it.
Thanks for the cheers‚ maybe someday i'll join you.


Posted in Untitled on 16 Aug, 2007 - 3:42 am

G'day everyone‚ I'm a newbie here too. My Name is Peter Nicholson‚ a West Aussie living in Russia. It's nice to see this site‚ I sure wish it wasn't needed. A little about myself- 44 y.o. left eye chronic for 6 years. (That's not a normal person intro‚ is itsmile I went through hoops for 4 years until‚ by pure chance‚ I tried a new clinic here in St. Petersburg and they had an Aussie Doctor who knew what clusters were. Would you believe his name was Dr. Bruce? I am now a non-drinker‚ non-smoker- stopping smoking sure helped but I could murder a beer. Anyway‚ best wishes to all the sufferers‚ and their suffering supporters too.