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Posted in a little off beat humor on 11 Dec, 2012 - 9:00 pm

Thank's Kim, needed a laugh

Posted in JUST HAVING A BITCH on 11 Dec, 2012 - 8:54 pm

AD said:
"Thanks Ben and o yes sorry Kim as well, this is new to me and quite shocking there is so many sufferers in WA."

Hi AD Welcome to the site.

I'm from Karratha but am in Perth for now getting treatment for another beast.


Posted in IV Lidocaine on 19 Nov, 2012 - 7:49 pm

Get well soon Heather and look after yourself or I'll come over & give you a severe hugging.icon


Posted in oxygen availability on 14 Nov, 2012 - 9:50 pm

It appears that confusion & or the lack of knowledge by the gas supply employees helps thrown the spanner in the works at times & you cant blame them as generally they are dealing with industrial gasses.

When you get a script or letter authorising supply of o2 you will generally be given the home oxygen support kit (I cant remember what this kit is actually called) but it will in general consist of the small bottle C size, a regulator that comes as standard goes up to 15 L/min, a length of tubing with the soft push on fittings & the nose cranular.

This kit is what is generally supplied to people who need extra oxygen due to a lung disease IE; Mesothelioma, emphysema , or lung cancer where the lungs canít take in enough outside air to keep up with the oxygen requirement & in general the medical fraternity donít think out side of those lines.

My next door nabour has emphysema & uses an oxygen generator for home & a C size bottle in the car with exactly the same type of regulator that I have ( the up to 15 L/min standard) he uses a rate of around 1-2 L/min constantly & at that rate you cant even hear the gas coming out & if you put the cranular against your skin you can only just detect the air flow he can get nearly a week of travelling to the shops from a C bottle where I can only kill 3 CH hits with that size bottle.

I guess the essential thing is to firstly get that letter/script first & you can source the other bits as you go, as for the non-rebreather mask I go to my local hospital emergency dept explain my position & they are generally good for a new one especially if a little white lie says the last one you got from there has worn out.

Hope this helps a bit

Posted in IV Lidocaine on 09 Nov, 2012 - 5:50 pm

Sounding good Heather lets hope it just gets better.


Posted in Not good news but getting better on 04 Nov, 2012 - 3:09 pm

Hi Folks
I had the scans done Tuesday last week (5 hours in a railway tunnel)& met with the Chemo Doc last Thursday & the results arenít what we where hoping for.

The tumours havenít shrunk as well as was expected & some have increased but itís not the end of the line, the Doc says the outlook is still positive given what has happened so far.

I meet with the Radiation Doc on Monday to start another round of radiation & commence the maintenance chemo treatment next Wednesday.

Am still feeling pretty good in myself with only a little pain now & then but the super pills soon fix that.

Cheers for now will keep you updated as I get results.

Posted in New to forum on 04 Nov, 2012 - 3:07 pm

Hi Sorehead & welcome

Glad to see you are getting oxygen, you will find it a lifesaver & the real benifit is do drugs.


Posted in Not good news but getting better on 15 Oct, 2012 - 2:35 pm

Hi Folks
I had the last of this round of chemo last Thursday and up until now I havenít had much to be able to let people know how I have progressed with the treatment.
Apart from being tired a lot I have had little or no reaction to the chemo drugs, from the blood samples that get taken prior to each treatment the doctor can determine how things are going within my body and all the signs are good with all of my vital organs working perfectly and my bone marrow producing sufficient white blood cells without having to take any medication to assist

The Chemo Oncologist is really pleased with the results so far, he is very confident that the tumors have shrunk and is thinking that they may have shrunk more than was thought possible at the onset.
I will have a full body bone scan and CT on my lung 30/10/12, from there he will be able to assess just how much the tumors have shrunk.

He confided in me the other day that by the time I was diagnosed and was put in his care there was little under normal circumstances he could do for me other than palliative care to make me comfortable until such time as I simply fell off the perch (my words not his).

The goal posts have moved for the better, with the tumors shrinking the way they appear to have done he now considers that I am a prime candidate for maintenance therapy, something that really shouldnít have been possible before.
What will happen from here on is; get the scans done & assess the effectiveness of the chemo & the minor radiation therapy I had initially, from there I will go on the maintenance therapy for 9 lots that will consist of a 1 hour session every three weeks over a period of 27 weeks.

Once he is happy that the maintenance therapy is progressing to his satisfaction it looks like I may be able to return home some time in the New Year & fly down every 3 weeks for the treatment under the PATS scheme.
He is also looking at attacking the tumor in my lung the main offender but that is yet to be determined as to which way things will go.

This is by no way a cure but gives me the confidence that the future looks a hell of a lot brighter.
One day at a time.

Posted in Equinox on 11 Oct, 2012 - 10:13 am

brodiec said:
" I just feel I wanna know everything I can about the beast and how it affects me."

Well said, an educated clusterhead hurts less.


Posted in Cannabis (Marijuana) on 06 Oct, 2012 - 1:25 pm

General consensus world wide from other CH boards is NO it doesnít help in any way.


Posted in Imigran is a miracle drug! on 06 Oct, 2012 - 1:20 pm

Hi Brodiec
Imigran tabs as you say take to long to work if at all.

It is available in stat pen type injection but for some reason a lot of Docs are reluctent to make it available, prefering to start off with an OTC med & gradually increase to the one that will actually do the job.

Ben is our Guru on the meds front & i'm sure he will be able to fill you in on what's what.

My preference is oxygen, no side effects reasonably cheap in comparison to meds especially the injectables and will work 10 times faster than an Imigran tablet.


Posted in Oxygen Supplier's page on 21 Sep, 2012 - 5:18 pm

Thanks for putting this up Roger & thanks Ben for prompting it.

I will trawl through & pick up old posts with references as I find them & log them.


Posted in Unsure, can anyone help? on 15 Sep, 2012 - 12:12 pm

Hi Tasha
Welcome to your new home.

You have been given some very good advice by the others especially Ben, he's our built in bible as far as meds go.

There's a heap of info on here so read up, an educated clusterhead hurts less.


Posted in I am back--and green! on 08 Sep, 2012 - 11:54 am

Dusker said: I am definitely following up on the Vit D. Certainly cant do any harm.

It really is worth a try Heather I have maintained my mag/cals/d3 & have now been PF since May 9, 2011 with only a daily shadow.

And as Peter said:

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."

It took me nearly 6 months before I started to get the true bennifit from the supplements but now wouldnt change for any reason.


Posted in Not good news but getting better on 26 Aug, 2012 - 3:09 pm

Hi Folks
Some good news.

I started the second Chemo round of the four sessions last week after the mandatory weeks rest from treatment.

I saw the Chemo Oncologist prior to my time in the clinic and he had some good news for us; I have to get bloods done the day before a chemo session to check my white blood cell levels, if the white cell count is down they wont administer the drugs until it comes up again and this lengthens the time of treatment, from the blood they also do a count of Tumour markers CEA & CA19-9 and both of these have dropped rapidly over the three weeks, this reduction in the markers tells the Doctor that the treatment is working & the cancers are reducing in size.

The doctor didnít say as much but we could see from the look on his face & his demure that he was pleased with the results.

My white cell count has dropped but I am on self injected medication daily for 3 days to help the bone marrow produce more white cells, hopefully this will work & we wonít need to postpone any treatment or have the need for a transfusion.

All in all I am feeling well & confident.


Posted in Purchasing regulators on 17 Aug, 2012 - 2:05 pm

Hi Daniel
For the sake of trying to get a regulator on line & not really knowing what you are getting really isnt worth the trouble.

You are better off simply going to BOC & purchasing one over the counter, you can see what you are getting & will be able to ask questions.

I steer right away from internet sales for this sort of thing.


Posted in Nerve Implant on 14 Aug, 2012 - 11:47 am

Hi Matt
Glad your able to get around & not let beasty rule.

Seems like the US is the place to be right now; my son flew over there Wednesday last week along with about 100 other Karratharites ranging in age from 2 years to 60 all going to weddings, 40th birthdays & anything that comes along, they are currently in Vagas, not sure if the US will withstand the onslought.

Enjoy your travels.


Posted in Not good news but getting better on 10 Aug, 2012 - 2:06 pm

Hi Folk
Firstly thank you all for your kind & encouraging thoughts I really do appreciate them.

I have left posting anything until I had at least started the chemo treatment so as to give some news on where Iím at.

I had my second lot of Chemo yesterday; just the small one, about an hour on the drip instead of 3 hours.
So far no real side effects other than a little diarrhoea & constipation, no nausea, no tiredness, none of the horror story side effects I have been told to expect by people who have never been through this treatment themselves, so Iím a happy little Vegemite so far.
The Doctors arenít saying but it looks like I have responded to the radiation therapy quicker than they expected, I have little to no pain at all in my hip & am able to get reasonably normally now.

Being so far away from home (2000 Km)& staying at our sonís home gives me very little to do apart from raking up the leaves every morning, Jasonís home, a 2 story 3 bed unit is a great place for him being a single fly in fly out worker, but for me being someone who needs to be active Iím bored sitting around scratching my butt otherwise.

Ah well its only another 10 weeks & I may be able to go home for a while.
Feeling positive about this.

Posted in On the road again on 29 Jul, 2012 - 11:34 am

Enjoy the wonders of the top end.


Posted in Not good news but getting better on 27 Jul, 2012 - 10:56 am

I found out July 10 that I have Lung Cancer & it has spread to my hip & it was only that my hip was sore that I went & got checked out, unfortunately this form of cancer is terminal.

This post is not a feel sorry for Barry one its simply here to inform so that if I stop posting one day you will all know why.

I started the radiotherapy Monday this week & that will go every day for all this week & the next, I have had an appointment with the chemotherapy specialist & start that treatment August 2.

The radiotherapy is being used to try & reduce the size of the tumour on my hip & appears to be doing some good; I am not as sore & have a bit more mobility that should improve in the next few weeks.

The chemo goes for 12 weeks & consists of 4 sessions by 3 weeks; the first week is a 3 hour intravenous drip, the next is 7 days later for 1 hour & the next week is a rest week & so on for the 12 weeks, at the end of those 12 weeks they will do scans again to see what effect this has had.

The specialists are not giving me any false hope or aspirations they are just putting it the way it is & what statistics tell them; if the radiation & chemo both fail the stats say I may have 9 months or there about, on the other hand if these things work & my body responds well to the treatment then it could be years (?) how many is in the lap of the gods & my determination to survive, Iím punting on option 2.


Posted in Survey of effectivness of online support groups for headache disorder sufferers. on 20 Jul, 2012 - 12:47 pm

Hi Folks
Below is a copy of a PM I got from the young lady as stated below.

As she says it is not a survey on clusters but severe headaches in general, in true grist it is asking has being able to talk with others dealing with a condition over an online forum helped in dealing with that condition.

For me most certianly this is the case; first with the US CH site & now here, Ibelieve that had I not had the oportunity to speak online with my co-sufferers I would still be in the dark ages.

To do or not to do is up to you, it took me about 20 minutes.



"Hi Barry,

My name is Elise Candy and I am a psychology honours student at Griffith University, QLD, Australia. I am conducting research into the use of online support groups for headache disorder sufferers in conjunction with my supervisor Professor Paul Martin, a prominent researcher and clinician in the headache disorder field and head of school here at Griffith University.

Iím writing to you as a moderator of, to request your help in posting information about my survey and a survey link to your website/forum for members of your community to participate in if they wish.

The title of my research project is ĎTesting a model of online support group use, empowerment processes and psychosocial outcomes for headache sufferers.í

The aim of this project is to determine how accessing headache support groups online impacts on the individual in terms of personal empowerment and its relationship with various psychosocial outcomes, including coping with headaches, self-care self-efficacy in headache management and health-related quality of life.

We believe that this project is important because it will help develop an understanding of how using online support groups empower headache sufferers in terms of headache management, their own personal resources and coping strategies and quality of life. We also believe that community members might find participating in this research beneficial, with the potential for increased understanding of oneís own coping resources and the potential empowerment processes associated with using such online headache support groups as this.

To complete this survey we require that participants meet the following criteria:-
1) Suffered from frequent headaches/migraines for at least 6 months and suffered from headaches/migraines on average at least once per week.
2) 18 years of age or older
3) Have previously used online support groups such as this one (there is no minimum number of visits to these sites to prevent participation!)

The survey is not specific to Cluster Headaches, but rather we are gathering data on support group usage for sufferers of all major Headache Disorders as classified by the IHS. Thus, some of the questions may not be 100% appropriate for Cluster Headache sufferers, particularly in regards to the Headache Management Self Efficacy Scale, but we only ask that those who participate complete those questions they can answer to the best of their ability!

The survey was also posted to The World Wide Support Group and we recieved great response rates! (Here is the Link :

However, our sample is still currently made up of mostly Migraine headache sufferers and to increase the Cluster Headache sample to an appropriate size to run comparison analyses between the different headache diagnoses and support group use we need approximately 30 more cluster headache sufferers!

Here is a link to the survey for you to look at:

Survey Link:

Your support in this research would be greatly appreciated!

Thank you,

The Research Team,

Professor Paul Martin and Elise Candy"

Posted in on 27 Jun, 2012 - 5:22 pm

Hi Jasmine & Welcome to clusterville

The answer to this question is "the jury is still out".

Some people report being effected with CH after a trauma but others who like in my case have never been in an accident or traumatic situation but have still got CH.

Yes I have had my fair share of sporting accidents but nothing that could be considered as traumatic.


Posted in Something weird I noticed on 08 Jun, 2012 - 9:37 am

Weird, co-incidental?
I had the flu around August last year; & since then the left side of my hooter (CH side) has been running like a tap, the right side is like a desert.

The Doc & Chemist both say hay fever but Iím not so sure; the chemist gave me some tabs that work a treat & at $6 for 20 is a good price, the brand name is FexoTabs, itís an over the counter med, 1 tab & 10 minutes later the water works stop for at least 12 hours.


Posted in Vote for my business? on 08 Jun, 2012 - 9:22 am

Dusker said:
Unfortunately I tried again this morning, but would not let me vote a second time.
I hope all other forum members are helping out Roger on this one.

Hi Heather
I just went in & voted again today without trouble, try again later today.
I can get 2 votes in a day, 1 from my work addy & 1 from home.

Thanks Roger, you've given us something than no medical practitioner could ever do for us


Posted in oxygen therapy - purchasing on 24 May, 2012 - 9:40 am

Hi Daniel

Glad you have found oxygen as a good abortive.

Unfortunately there arenít a lot of options around not having to pay for bottle rental

I am chronic & donít know when I may get another bout so I pay an annual rental on each cylinder; I have considered changing to monthly as on the annual I may only require the larger bottles for 3-4 months but pay for the full year, but when you do the sums its about 6of 1 & a half dozen of the other, if you are episodic you are better off staying on the monthly rental.

In the US you can purchase your own bottles & have a provider refill them for you if they are still in current test, much like the scuba divers bottles, I donít know of any provider here in OZ that will do that.

The chap who lives next door to me has emphysema & gets his oxygen & rental paid for by the Govt, unless you can convince your doctor to work something out with Disability Services I donít like your chance of getting out of paying the rental, just another obstacle we cluster heads have to put up with.

As a foot note, welderís oxygen is the same as medical & is a bit cheaper but the bottle rental is still the same, catch 22.


Posted in Lump on the back of head? on 03 May, 2012 - 10:33 am

Hi Lauren

The lump or Cluster bump is quite common but will not show up in every one, it's medical term is ganglion..

Here's a link to some discussion on it from the old CH,US site.

Here's a picture of one of the Ganglions at the back of the head it's nota great shot but gives an idea.

Hope this helps

Posted in Cutting Edge Treatments For Migraines on 20 Apr, 2012 - 7:43 pm

Very good find Leslie & well worth the read.

Maybe itís just because Iím not a drug person but I donít see the practicality of taking a drug that may take a couple of hours to work when we already have quicker acting weapons at our disposal, IE oxygen & energy drinks & are probably a cheaper & more readily available option.
From the article
ďAnother drug in the pipeline is Lasmiditan. The drug is in a new class of drugs known as ditans, which are serotonin receptor agonists. Like CGRP blockers, the advantage of Lasmiditan is that it doesnít seem to constrict blood vessels, and there have been no reports of cardiovascular effects. Recent trials showed significant improvement in migraine patients over a placebo.
Within a two hour period, more than 60% of headaches were reduced to nothing or almost nothing. Nausea and sensitivity to light and sound were also significantly reduced over a longer period of time.Ē

What never dulls me with Goadsby is his ability to look at these things with the same practicality as we do, as he says.
ďI think we are probably the only people in the U.S who are using it. It is very effective and well tolerated. There are ways of using these things on an individual basis. We use it every week, more or less,Ē Dr. Goadsby said.
As for why more doctors arenít administering it in the U.S, Dr. Goadsby says it all boils down to experience.Ē

As the greater % of us have experienced, lack of knowledge or experience by practitioners has led to misdiagnosis of our condition in the past & with no doubt will continue to happen untill that experience gets out there in to the medical world.

Get off your soap box Barry

Posted in 4 years on 19 Apr, 2012 - 10:44 am

Hi Jen & Welcome, your amoungst some very good people here with a pretty wide knowledge base on our little malady.

Red Bull ROCKS as does the other energy drinks that contain high levels of Taurine & caffiene, I have been using RB as an abortive for the low level hits now for about 5-6 years.

A wonderfull young lady from Finland by the name of Sandie stumbled across the RB trick purely by accident while in a cycle; she is one of those people who need to drink imediately a hit comes on & the neares thing in the fridge was a RB, she sculled that down & raced upstairs for the o2 but by the time she got to the o2 the pain had nearly gone, she got to thinking this may be a 1 off but gave it a try with the next hit & it worked again, after aborting about 6 hits she reported it on the US & Finland CH sites, I was still chronically chronic at the time & was willing to give anything a try & yes it worked a treat for me as it does for so many other people.

Just another little weopon in our arsonel to fight the beast.


Posted in Dihydergot (Dihydroergotamine) on 09 Apr, 2012 - 11:33 am

Hi Pete

A bit remiss of me for not welcoming you erlier but welcome to the best little nut hut downunder.

I can't comment on meds as all I have ever used is the Imigran tabs to a limited ammount, oxygen is my first line of defence in the battle when a high cycle comes on & I use the vitamin regime of Magnesium/Calcium/D3 that has so far given me lengthy periods of PF times since I started this back around 2006.

Anyway welcome aboard.

Posted in Our new home on 09 Apr, 2012 - 11:11 am

Hi Folks

I know this is not cluster related but just had to share with the family.

We are in Perth on holidays specifically to organise our home ready for when we retire not to far down the track; we have had our property for about 15 years & now have found a dsign that suits us to a T.

We have never owned our own home before so that's a new experience for us & after over 40 years of marriage I will be able to carry my bride over the threshhold, better late than never I suppose.

Hope the link works

Posted in Just diagnosed with Cluster headaches on 07 Apr, 2012 - 9:49 am

Hi Annette

Welcome to the site, you have already been given very good advice from these wonderfull people so I wont elaborate.

I see from your profile that you are from Baldivi;, is that Baldivis WA down Rockingham way,
If so I am in Perth now until Wed 12 April before I go up to the property & if you want to have a look at my oxygen setup your welcome.

I'm not in high cycle at the moment but I carry my o2 rig wherever I go just in case.

I will PM you with my phone # if you want to talk.


Posted in Tens Machine on 04 Apr, 2012 - 9:55 am

Hi Matt

I have a TENS machine that I got originally for my back.

Before I found out about o2 I was willing to try anything to stop the pain; I couldn't get much relief with the TENS on my head but found it very effective on the ganglion in my neck on the CH side & could reduce the swelling down within about ten minutes.

The original one I had didn't have the self adhesive type pads so you had to use elastic strapping but the newer one has the sticky pads & is a lot more convienent.

Personally I think they are a great machine not just to help with CH but for sore or torn muscle they are in another world, very well worth the small ammount you pay for them.

Just another of the quirks of clusters; part of what the TENS does is stimulate blood flow in the effected area helping cleans the sore/damaged area of built up toxins & improving the healing time.
If I hadn't had one I would have thought that the last thing I would want to do is speed up blood flow when you are trying to reduce the blood flow to stop the pain, it's a strange beast we deal with thats for sure.


Posted in just for the sake of talking on 03 Apr, 2012 - 5:56 pm

Fingers crossed for you mate.


Posted in on 03 Apr, 2012 - 10:27 am

Shell said: love just isn't enough.

It is you know; love is what has got us through 41 years of marriage, my 14 years of clusters & Nina's nearly 3 year battle with breast cancer along with the surgery of a double mastectomy, radiation therapy, reconstruction that hasn't gone so well with the breast that had the radiation, love is what is still holding every thing together, we still have a way to go yet & that love will pull us through.

Shell & Cory Please please go & have a look at my thread on "An alternative anyone"; read it, follow the link to the US CH site of Batch's thread on the "123 days Mag/Cal/D3 regime", it's proving to be a relatively good winner for about 70% of sufferers, honestly you have nothing to loose.

Love is what has kept things together for so long that now at 63 years of age we are about to build our very first home; we have never owned a home before & this is a new experience & I guess the reward for putting in the hard yards over the years.

Love will get you through.

Love & Cheers

Posted in So excited! on 01 Apr, 2012 - 11:06 am

Hi WhitsundayGirl, and welcome to the best little nut hut down under.

As Peter said may your PF time continue for a long time.

RLS can also be referred to restless limb syndrome by Nuroís with a lot of contact with CH sufferers as it can effect the whole of one side of the body; the jury is still out on a definite cause but the hesitantly accepted thought is that it is connected to the malfunction of our Hypothalamus which is again hesitantly accepted as the cause of our clusters, if you run these things through a search engine you will see that most of these maladyís are related back to with reservation our wonky Hypothalamus.

My Nuro (Prof Gubbah) who sadly has now retired put me on the trail for a bit of personal research into these things as when I went chronic I got all of those listed below & there is some very interesting reading out there; I initially got my first little dance with the demon 14 years ago but was only effected with the CH & it never came back for five years, when it did it went ballistic with the RLS, Exploding Head Syndrome, Insomnia & periodic limb movement that can effect any limb on the body.

It appears from the reading that I have done that when the Hypothalamus goes out of kilter, the messages that would normally be sent out to the rest of the body get lost in the system somhow, get sent in greater amounts than required or donít get sent at all as is the case in insomnia, the hypothalamus sends messages to the pineal gland to produce Melatonin the bodyís natural sleeping pill, these messages are sent in escalating amounts in that the quantities of Melatonin produced are increased over a period of time until you say thatís it I need to go to bed & through out the night the levels are maintained until you have had sufficient sleep, the hypothalamus then recognises this & gives out instructions to the pineal gland to reduce the amounts & you wake up.

I now donít refer to Clusters as a stand alone complaint because of the above, I see it as one of the conditions connected to the malfunction of the Hypothalamus & prefer to attempt to get that settled & back in working order that should in turn help all the other little maladyís.

Hope this helps

Posted in Headache treating Doctors blog on 01 Apr, 2012 - 10:10 am

Thanks K

Looks like very good reading & I'll go right through the blog later on.

One bit that did get my attention first up was the Magnesium infusion; I'm not a drug taker if I can get away from it & prefere the Magnesium/Calcium/D3 preventative aproach I have been using for some time with pretty good results.


Posted in Back to Red on 29 Mar, 2012 - 2:17 pm

Hi Sara & all

Been nearly a year this low cycle; May 9 will be 365 days PF, my best ever was 2.5 years just after I started the Mag/Cal/D3 supps.

Hi Ktulu
I agree with your thoughts on nitrates & indeed preservatives in general; it's something I have come to believe that they can induce a cycle or in some cases increase the severity & or duration, I think the last high cycle I went into last Feb may have been caused by one of my weaknesess a bloody good meat pie, around the corner from my son's place where I am at the moment there is a small privately run bakery that makes just the very best beef pies, jam & cream donouts, vanilla slices etc but they do add preservatives.

Needless to say I am in no way going to test my theory & break out on a pie or two, I think I will just look in the window & drool.


Posted in Back to Red on 28 Mar, 2012 - 10:14 am

Hi Sara
Now that's the best news I've heard today & 5 weeks is pretty good.
Do you think the vit Mag/Cal/D3 may have helped at all?


Posted in Back to Red on 09 Mar, 2012 - 12:07 pm

Hi Sara

I'm a bit late with this but sorry to see your in the red, fingers crossed for a short one.

Something that might be worth a try: in my last high cycle I was at night time getting hit again within an hour & remembered a trick I had used before.

I have about 6 of the gel filled hot/cold packs (cold for me), after killing the hit with o2 I would go back to bed with a couple of large cold packs on the pillow & lay my CH side of the head on them & it worked a treat, I could get maybe 4-5 hours shut eye before the beast came back again, that cut my night time hits down to just a couple.


Posted in Have to admit it! on 09 Mar, 2012 - 11:58 am

Hi Heather
Sorry to see you in the red, lets hope its a short one.

Love the new addition to the family.


Posted in Suffering alone in a Western Australian mining camp on 09 Mar, 2012 - 11:53 am

Hi Andrew & Deano

Here's a link to a very good document written by the wife of a sufferer.
It puts forward our malady in a way that can be easily understood by non suferer's & really is invaluable.

I hand this to Chemists when getting Imagran from a new pharmacy/pharmacist it helps them understand why I am asking for 2 boxes of pills to get me through the weekend instead of the usual 1 box per repeat.

Cheers & hope the pain ends soon.

Posted in Suffering alone in a Western Australian mining camp on 06 Mar, 2012 - 8:55 am

Hi Andrew
Welcome, but sad your hurting.

Where are you in the Pilbara; i'm in Karratha & if I can help I will.


Posted in Public Service Notice on 02 Mar, 2012 - 9:06 am

Please share the following information with your friends.

I don't know WHY I didn't figure this out before!!!!!!

I wash my hair in the shower and the shampoo runs down all over my whole body.
Printed very clearly on the label is the following warning;

No WONDER I have been gaining weight !!!!

Well, I have gotten rid of that shampoo and I am going to start using Dish Washing Liquid instead.

Problem solved ! If I don't answer the phone.....I'll be in the shower!

It's been too quite around here, we need a laugh

Posted in Thread titles dropping off on 03 Feb, 2012 - 4:35 pm

Hi Folks

For some reason the thread titles drop off some threads.

If you see one of yours that have done this, shoot me a PM with the original title & I will re-instate it.


Posted in Untitled on 03 Feb, 2012 - 4:32 pm

Hi Sara & Megan

I re-instated the title here & bumped to bring it to the top so you can find it.


Posted in Energy Drinks Oxygen & others on 30 Jan, 2012 - 8:58 am

Hi Peter

From what I have been able to pick from posts elsewhere it appears that the short term memory loss comes at onset of getting CH the first time around and or when going from episodic to chronic which is what happened to me but it seems that not everyone gets it; it may have been that along with the clusters I also got the EHS that belted my head as bad as the CH.

Itís a weird malady we deal with this wonky hypothalamus as most would know when I went chronic I also got the EHS, RLS, PLM, and within about 12 months of those I had got a shaky hand & would spill a lot of any drinks I had & at times I still do, I had never heard of anyone else getting this until the other day on the US site a women asked if this was a norm, with so little being know about our condition and medical practitioners in general knowing only minor points one can only learn from each others experience.


Posted in How is everyone going? on 29 Jan, 2012 - 12:18 pm

Hi Tara

Glad to see you are still in the green and able to enjoy life and may the next hundred years be the same.icon


Posted in Energy Drinks Oxygen & others on 29 Jan, 2012 - 12:14 pm

Hi Folks
When the subject of killing a hit with an energy drink first came up early 2006 I tried it the next day & it worked immediately this led me to spent some considerable time searching any info I could to try & find a link between Taurine & CH; it was already known that people could get some relief with coffee but the combination of the two left that big question mark.

As Sara has said there isnít a great deal out there about Taurine & nothing I read gave any indication that studies of any kind had been done connecting the two but there was some interesting snippets that threw up a few thought balloons.

I havenít looked at this info for quite some time and am going from memory only.

Named after the Latin Taurus as it was first isolated from ox bile in 1827, proved nothing other than adding to my general knowledge & could be handy at a quiz night.

The bits that were interesting are:

Taurine is found in higher concentrations in pregnant and lactating women and is vital in the development of the brain in the unborn child; this interested me as it has been reported that some women get remission from Clusters when pregnant, could this be the ingredient that makes that happen?, yet again another unanswered question and I doubt that we will ever know.

Trials were being carried out in the States with Taurine on people with Alzhimers and where proving beneficial in some patients in the early stages; this again got my thought juices flowing as I had developed a lack of short term memory so much so that I could go to the letter box to collect the mail and by the time I got there I had forgotten why I was there, the mail went uncollected on numerous occasions, knowing this was happening I would have little sticky pad notes all over the place as reminders, within a week of starting on the Taurine supplements that short term memory was back.

Other people who were interested also found that there wasnít much info around and couldnít come to a conclusion worthy of promoting Taurine on its own as a viable abortive or preventative but Batch being the man he is and having a Masters Degree in Chemistry concluded that given it was known that Taurine would promote the effects of not only coffee but could also do the same with any prescribed medication warned that people considering using Taurine should only do so in consultation with their Doctor, those taking heart medication reported back that their Doctor agreed with this warning.

I still use Taurine on occasions when I start to shadow heavily and add one 500mg tab with my Magnesium/Calcium once that day and the effect is almost instantaneous, I should add here that this was done after talking to my Doctor about it.

Hope this helps but would warn that if you are on medication at all please discuss this with your Doctor first.

Posted in Passed my use by date. on 19 Jan, 2012 - 9:01 am

Hi Ben

That's sounding like good news.
Sorry about not replying in this thread before but been caught up in others so to speak.

Great that you got your Vit D3 level checked before you started as thats a good measure to check how you progress with adding more to your intake.

I noticed a new member signed up yesterday by the name of Batch, I'm going to Email the Batch I know & see if it's him, it would be good to have him on board with his knowledge.


Posted in Rebound Headaches on 17 Jan, 2012 - 1:04 pm

Hi Folks

I have hidden all the posts made by Myself, Peter & Les over the last few days in this thread as they had no relevance to the nature of the original post by Sara.


Posted in The Larrikin Laureate on 17 Jan, 2012 - 8:54 am

The piece below was penned by a Clusterhead friend of mine, He's a Queenslander & suffered for more than 30 years with the beast, his name's Brian & goes by the name of Aussie Brian on the US Ch site & thinks outside the box with his attitude to CH.

The Larrikin


Far, far away on planet Beastrapedus, the chief beast and head-torturer of earthlings banged his gavel and brought the meeting to order. It was a glorious night, even for a planet that knew only night, for no self-respecting sun would ever shine on such a god-forsaken place such as this.

"Ladies and gentlemen of Beastrapedus", his voice boomed, "We have a problem and I thank you for attending this evening as our very lives and livelihoods are now seriously threatened, indeeed they're in the balance, due to the unforeseen actions of certain cretins there on planet earth."

The assemblage knew this to be right for the beast-generals had heard it from the captain-beasts whose time in the field with the absolute cream of temple-burners and eye-debuachers was showing an ever-diminishing body count of suicides, divorces and business failures. Even entries to mental-health and drug-rehab centres were falling, so surely alarm bells would ring.

The enraptured silence continued as the monsters in all their forms looked in awe toward the stage, for surely no expence had been spared in preparing the scene so all delegates would truly appreciate the gravity of the situation.

The curtains alone must have cost a bomb as they so beautifully depicted half-closed eyes so blood red as to have come from a rose garden only that morning. Tear ducts fully exposed blending so perfectly with the nasal discharge of a waterfall and the hems depicting so many bags of frozen peas - all thawed.

Behind chief-beast, obviously arranged by an expert, were their standard implements of torture - pokers glowing white and red hot, carved timber head-vices with fireworks on but one side, barbed wire and knitting needles in boiling oil, for such were the tools of their trade. Yet he remained quiet, serving only to heighten the enormity of his words.

"Beasts, monsters, torturers and tormentors, lend me your rears, for the earthlings have risen against us as never before and threaten not just our being, but the being of our children, their children, and our very raison detre'.

We had every advantage for so long in that no CHead had ever met another, but things are changing. We'd convinced each that he was unique and must suffer alone, which worked wonders on the madness front, but now they're linking up as a common front! I'm sure you've noticed!!

"In more primitive times they simply leapt off cliffs or had holes drilled in their temples by witch doctors. This was good and even during the age of religions we got them burned at the stake as blasphemers. This was even better but, gentlemen, times they are a-changing and I now call upon Octal Inferno, anal of secret police, to release a hither-to unknown report."

The light dimmed, flared to fleuroescence then dropped to almost darkness and all knew there'd be no good news to follow.

His Royal Ooziness arose, clad in dark robes against a dark back-drop, and spoke darkly. "I address all beasts of greater or lesser stature. All monsters, dragons, imps and elves along with all who'd continue our grand tradition of evaporating human temples. We must continue!!

"Certain advances on planet earth have delayed and thwarted our plans but we've conquered them all so far. I know we all miss the days of sufferers being dunked in boiling oil for failing to renounce their personal devils but times move on. As more doctors became aware of this men-only condition, we gave it to a few select women and didn't that muck things up for a while. Then came Immitrex so we invented rebound headaches and we've even screwed their O2 therapy by making it so devilishly difficult to obtain, but what's happening now is unforeseen so we're brainstorming you instead of them. I now leave it it to my good friend Vlad of the Lighted Retina to explain what's required."

Never ever, not once in the history of planet Beastrapedus, had anyone actually admitted the existence of the Anal of Secret Police (though rumour ran rampant) but to now learn of Vlad had the rectum of every listener sucking nickels and dimes from the upholstery of their chairs.

"We know our enemy, and the enemy is ours!!" he screamed, as though his enema tube had been inserted 12 feet instead of 12 inches. "We have existed as a monsterhood through dividing so they fall, yet it's a brotherhood that's uniting against us and it's a beast. That beast has a leader and that leader has a name and that name is DJ!!"

All hell broke loose within the convention because, while they all knew secretly of this viper from the poisoned pits of the netherworld, until now no-one had ever spoken the name aloud.

DEEJ! If they'd blood in their veins it would have frozen, boiled or both for their sworn enemy was no longer a myth but a flesh and blood target to be anihalated with joy. The sheer exuberence of the audience would take years to clean up.

The beast master returned to the podium, if only to restore order, but everyone knew that war was only for the victors. "That's right," he boomed, "The abomination now has a name. You may speak that name or give it a number but such is our enemy and Sergeant-enslaver and sewer-rat second class, Vulcrania Horrendus will outline the modus operandi".

The stench of their happiness reached out to space as Vulcrania spoke. "Our enemy is the internet," he exuded fustily, "But we're taming it slowly. That dreaded and most hateable piece of human excreta, DJ, robbed us of our number one weapon by uniting CHeads in a common cause. We've retaliated by removing his CH and thus destroying his credibility as a leader.We've also infiltrated his site and installed high-class viruses such as Ali, CH-Tom and others more recent which are guaranteed to bring our nemisis to his knees, as does Mrs Deej though that isn't necessarily of our doing.

"On the subject of supporters, their ranks are closing and they're getting stronger all the time and the damage inflicted upon us is devastating. All and any suggestions welcome and with that depressing news I hand you back to chief beast." The combined expelled breath of the delegates would have melted a sinus-buster at 15 miles.

"So there you have it, demons. Our very existence is under threat unless and until we destroy the force that threatens us, the unification of CHeads as advocated and endorsed by and the perpetrator of its criminal conduct. DJ MUST DIE!!"

The curtains swung shut, the lights dimmed, a beautiful silence reigned as poisonous gasses poured from the ceiling and CH became a thing of the past.

Posted in oxygen availability on 15 Jan, 2012 - 6:48 pm

BlueDevil said:
In particular I am thinking that at very high flow rates there will be an element of wastage Ė some of the oxygen will simply flush through the mask and go into the atmosphere without being breathed in. Theoretically with a non-rebreather mask if you are keeping the reservoir bag virtually full throughout the breathing cycle then you should be at close to the maximum percentage you will get (ie there is plenty of O2 in the reservoir to supply you with O2 for each breath). In this case I would speculate that increasing the flow rate further would have little benefit.

Hi David
Thatís a very good observation & I couldnít agree more; I have a beard so I donít use a mask I breathe straight from the bag, in through the mouth out through the nose, at onset I will set the regulator at 12l/m & breath hard & fast for a while to get as much o2 into me as quick as I can but am only able to sustain that sort of breathing rate for a short period of time, when I feel that the o2 is starting to work I will turn the flow rate down to a point where I am taking in a full bag of air & expelling it at a rate in time with the bag filling up again.
I see no point in having flow rates greater than you are comfortably able to breath & believe that full exhalation to remove all waste gasses is a better method; how much more you can get into you by using a higher flow rate I think is debatable at the least, but then again some people swear by it, everyone to their own I suppose but when I am in full high cycle & can go through an E bottle in 2 days at around $90.00 each it does become an expensive exercise.


Posted in Time of year on 14 Jan, 2012 - 12:31 pm

Hi Katy

Ben started a thread some time ago about this & it does look like there is some connection.

I dug back through Ben's posts; click on this link it will take you to the thread concerned & I think you will find the answers there & it does make for very interesting reading.


Posted in I'm new here on 14 Jan, 2012 - 12:12 pm

Hi David & Welcome

What you describe does sound like clusters but as Sara has said you really need to get it checked out.

You profile does'nt say where your from but if you have a look to the left you will see a tab "Practitioners" in there you will find doctors recomended by the people here.

Best of luck & keep us posted.


Posted in New to site on 14 Jan, 2012 - 12:00 pm

Hi Katy,

Welcome to the Nut Hut, sorry you had to find us but you are in good company.

I see Sara has pointed you in the right direction as she will always do, thanks Sara I knew there was a good reason we had you around.icon

Iím an oxygen man so not able to help in the meds area as I stay as far away from them as need be but I wonít rule them out as an effective management tool Ben's our go to man in that field, he is invaluable in that field & knows more than anyone I have come accross.

Thereís a heap of great info here that you have to ponder over & if you need help simply ask; itís worth remembering that the only dumb question is the one you donít ask & an informed CHíer hurts a little less.

Cheers & welcome aboard.

Posted in Sp02 levels (oxygen levels) on 14 Jan, 2012 - 11:37 am

Hi Folks

Doing some catch up after being away for a few days & this is interesting reading.

Firstly quoting from Benís post:

ďPart of the re-breather O2 mask setup (I believe) is about making sure exhaust gases (CO2) are expelled and not re-inhaledĒ

Thatís spot on, I believe I get an even better return as having a beard where I cant get a complete seal with the mask I breathe straight from the bag, that way removing any chance of the very small residual CO2 that would be in the mask & it appears that I am able to abort a hit quicker than those using the mask.

From Neilís question:

ďI was just mainly wondering if there is a link to low 02 levels and CHís?;

Yes Neil there is a link but of course that is not the only link, there are in my opinion to many variables with CH to be able to definitely say that I get clusters only because I have a bent nose & people with a straight nose donít get clusters icon, I along with others in the US have tried sleeping with a nose tube in an attempt to get out of the night time hitís but to no avail we have still got hit & just as regular.

Blue Devilís post is beautifully spot on, itís been found & proven in sleep studies that when you are not active your body does not require the same amount of oxygen as you would if say you started to run which brings up another point that some people are able to abort a hit by doing vigorous exercise & this stands to reason that by breathing heavily you are expelling the CO2 & bringing in o2 at a faster rate than sitting still.

An interesting consistency here is that Ben; Peter & I get distressed in the situation where CO2 is greater than would be normal, that now leaves me thinking is it a consistency across the board & do we all get that closed in feeling be it in cycle or not, I had always put that closed in feeling down to me being a mild asthmatic that I was diagnosed with at least 15 years before I got my first CH, I havenít been affected by asthma since I found the triggers that where setting it off but still get the closed in feeling.
It would be interesting to know if others get this closed in feeling?

Peter made the mention about air conditioning; living up north here; aircon is a basic need you simply cant get through a summer & work effectively with out getting a good nights sleep, all of the airconís are the refrigerated type as evaporative simply turns the already moist air into even wetter air which brings up another point, air from a refrigerated aircon has less moisture in it thereby making the air less dense & I dare say more easy to breath, well in my case it is.

Ah such ponderings on a Saturday morning.

Posted in Pulling out for a while on 02 Jan, 2012 - 12:16 pm

You go enjoy yourself young lady & bugger the expense.


Posted in Happy Birthday to the Birthday Boys on 01 Jan, 2012 - 11:27 am

According to the profiles we have three Birthday Boys who as tradition dictates will be bringing the cake for morning smoko.

Happy Birthday to Paul, Wayno & Benny, enjoy your day Guys.


Posted in Untitled on 01 Jan, 2012 - 11:17 am

Happy New Year Folks
Hope this year brings all we strive for.


Posted in Untitled on 30 Dec, 2011 - 10:10 am

Hi Benny

Great to hear it's working for you & hope it lasts for a long time.

The thread title has dropped off, if you can remember what you called it let me know & I will reinstate the title if not I can set it at Nerve Root Block.


Posted in Untitled on 28 Dec, 2011 - 11:15 am

Hi Sara
Glad to hear your lads OK.

Stay Green


Posted in An alternative anyone on 27 Dec, 2011 - 12:37 pm

Hi Ben

The battery description is the very thing my Lecturer said on day 1 when I started the CP course as an introduction.

What you said about the fillings & the SS wire is correct in that the saliva being acidic would act in the same way a battery would & the metallic taste is the oxide created in the break down of the filling.

Iíve done much the same with a multimetre & got the same results you did but it would switch daily from AC to DC current & I couldnít put any logic to that.

One thing I did pick up in my last cycle was my wife noted that the CH side (left) of my head was far hotter than the right, on measuring the temp with a couple of digital thermometers I found that there was a 11 deg difference which I think should be expected with the increased blood flow to that area, Ah the strange things we do to work out this beast.

On the subject of Dentists before I was diagnosed I was a main contributor to the new Porsche that dentist got on telling me he could fix my headaches, $ 6000 later I still have them, I have since not made any contributions to the new set of tires he may need.

Donít go replying to this yet just get yourself back on track first & keep of that bloody skate board.


Posted in Untitled on 27 Dec, 2011 - 11:50 am

What are we going to do with you; if Iíve told you once I must have told you a thousand times not to ride your skate board in the house, you know you are much safer doing that on the freeway, houses can be so dangerous.

Rest up my friend, unfinished business can wait, remember that Rome was not built in a day & the only reason for that is because my wife wasnít the foreman on the job.
Enough dribble; see you when youíre better.


Posted in Untitled on 25 Dec, 2011 - 6:47 pm

Hi Wayne
Sorry the beast has come back & especially this time of the year when one would rather be doing something else than dancing with the beast.

I cant help on the med side of things as I use a preventative regime & never gone down the meds road; I certainly donít discount them as one day I may have to go that way if need be, as you can see from the cut & paste that Leslie has done with one of Bens posts that Ben is the man who has an enormous amount of experience with meds to treat CH & Iím sure he will come in with some advice for you.

From what you describe the way your head is acting this time around you may be experiencing whatís called shadowing, itís a head ache that hasnít really got going full strength but gives you the feeling that at any time it could rev up.

Our not so friendly friend the beast has a habit of morphing; just when you think you have a handle on the game he changes the rules without notice, you just need to ride with it and alter what you do to keep ahead if you can.

Hoping you can get the oxygen sorted out, for me when in high cycle I swear by it as I can abort a hit within 5 minutes, pure bliss.

I see in your profile that you mentioned OUCH UK, where you a member of that site while you where still over there; I know some of the people who are long time members.

Hoping this is cycle is a short one for you.


Posted in An alternative anyone on 25 Dec, 2011 - 12:42 pm

Hi Ben
Pleased you are having a look at this, as you say you twigged that maybe minerals may do the trick.

Before I started down this road I had done a lot of reading like we all do looking for that minor detail that may be missing; I had a fair amount of discussion with a young woman from the UK who had done a lot of research herself into neurotransmitters, with minerals being one of the transporters that help carry the signals through out our system.

I have to admit that I donít profess to be the full bottle on this; I have an Engineering background not Neuroscience or Chemistry but it just simply made sense to me when I applied Cathodic Protection techniques to it,( Just to clarify: I work for the Water Corporation over here & we have a lot of steel water tanks through out the state & I have a certificate in Cathodic Technology & worked in that field for a number of years), CP is the protection of metal components using an anode that is lower on the galvanic scale & will sacrifice first by letting out electrons that will pass to the metal component you wish to save, itís well known in the industry that CP will work more effectively when suspended ions IE magnesium, iron, copper, salts etc are readily available& when these conditions donít exist you have to increase the properties of the solution in which the metal sits & this is done by inducing a small electrical current in the milli volt range to the anode, much I think the way the brain sends out messages.

The above may be a little lengthy but it explains the way I could relate to maybe the way the body could react if these neurotransmitters, the naturally occurring mineral salts in our drinking water & foods where to be low or in fact have been removed from it, itís common practice with todayís technology that as the customer demands a more pleasant tasting water the water providers will resort to microfiltration to remove some of the offending properties.

Iím not in any way blaming the water providers for our CH but if we arenít getting the mineral supplement we need than something must go haywire & or we do supplement those that we do not get in our normal intake.

Before I go on I should say that Batch has a Masters Degree in Chemistry & that gives him an advantage that other CH sufferers donít have when looking for less harsh preventative measures.

Ben itís good that you are working with a Pharmacologist as he/she will be better able to understand the intricacies of Batchís Method, it may be worth you giving your Pharmacologist the link to the 123 days PF thread, as there is a lot in there that I simply cant get my head around & it would be good to get their opinion on this subject.

Just for the record I calculated out the number of days Batch has been PF from when he started "503" got to be happy with that.

Lesson over for today, gotta go bottle some stout.
Cheers & a great PF Chrissie to all.

Posted in An alternative anyone on 20 Dec, 2011 - 4:47 pm

Hi Folks

Previously I have posted a link to an anti inflammatory regime that has been running on the US cluster site started by Pete ďBatchĒ Batchelor; itís been up & running now for just over a year with results of around 70% success rate for most participants.

Hereís a link to that thread.

It is long but for anyone who wants to get away from the heavy meds they may be on now it really is worth the read.

I have been using a similar method since 2006 with initially varying results, I have kept a diary of sorts that doesnít show when I got individual hits as these where too many to list.
I went chronic 20/10/2004 & got hit daily without respite.

I started with Magnesium only at 200mg/tablet 3 times a day on14/4/2006 & got some periods of up to a week without getting a hit but ran into troubles with joint & muscle soreness that on speaking with my Doc I found out that Magnesium will block the natural intake of Calcium so I started taking Calcium at 500mg/day; this stopped the muscle pain but did not increase my periods of being pain free, but this is where things started to get interesting.

Some time between 14/4/2006 & 2/10/2006 I found that the product I was using could be got as a combination of & is still available consisting of:
Calcium amino acid 500mg as100mg Calcium
Calcium carbonate 375mg as 150mg Magnesium
Amino acid chelate 125mg as 25mg Magnesium
Oxide heavy 42.96mg as Vitamin D3 200 IU
I take 1 of these tabs 3 times a day at meal times.

It was on 2/10/2006 I got a KIP 8 late in the afternoon that came on so hard & fast I didnít even have time to get a Red Bull out of my car fridge; it belted me around for about 10 minutes & went just as quick, that was the last until 20/6/2007, the PF period from 2/10/2006 - 20/6/2007 was 261 days I then went into a high cycle that lasted 50 days until 9/8/2007.

Listed below are the high & low periods I have had since the initial break starting 14/4/2006.
Low cycle 9/8/2007 Ė 1/6/2008 297 PF days.
High cycle 1/6/2008 Ė 24/7/2008 53 pain days.
Low cycle 24/7/2008 Ė 19/2/2011 940 PF days.
High cycle 19/2/2011 Ė 25/5/2011 95 pain days.
Currently 25/5/2011 Ė today 20/12/2011 219 PF days.

As you can see I have got some rather lengthy periods in low cycle, I still get daily low shadows up to KIP 2 while in these low periods but no biggies.

Here's the list of vitamins cut & pasted from Batchís thread, I have been in contact with Pete on & off since 20/10/2010 discussing our alike method & he has no problem with me posting any of his stuff from the US site.

Omega 3 Fish Oil - 2000 to 2400 mg/day (EPA 360 mg/day, DHA 240 mg/day)
Vitamin D3 * - 10,000 IU/day
Calcium ** - 500 mg/day (calcium citrate preferred)
Magnesium - 400 mg/day (magnesium citrate or magnesium gluconate)
Vitamin K *** - 120 mcg/day
zinc - 10 mg/day
Boron - 1 mg/day

This regimen can be taken any time of the day, but it's best taken in the morning with an 8-oz glass of lemonade, limeade, or any fruit juice high in citric acid sweetened with a little honey. Honey is a natural source of Boron, which is listed as one of the "co-factors" along with magnesium, vitamin K and zinc. By Batch.

The lemonade stated above is not like our Aussie stuff itís the true stuff made from lemons.

Just for a change I am going to be in town for some time with out going bush after 22/12/2011 so will be around for any discussion.


Posted in Ride for Awareness on 19 Dec, 2011 - 12:27 pm

I'm a little too far away to be able to participate in this but support it & hope it works out.


Posted in Untitled on 19 Dec, 2011 - 9:43 am

Hi Folks

This is where the predictable unpredictability of clusters really throws curved balls at us.
First up Ben when I was around Torpex it was at least 30 years before I got clusters but strangely enough now even though I am chronic red wine wont bring on an attack when I am in a low cycle nor will white wine; stout, or whiskey but if I have one stubby of beer I will shadow heavily within 20 minutes, I donít know what would happen if I tried it during a high cycle Iím too chicken for that, I go off all alcohol until the high is over.

These are the idiosyncrasies of clusters where what effects one person wonít do the same for another.

I may be warped but I can just see you sitting in Royal Adelaide with a stick of jelly shoved into a head band, a bottle of the best cab sav & a Havana cigar.


Posted in Untitled on 17 Dec, 2011 - 7:27 pm

Hi Ben
Torpex along with a lot of other generic names for nitrate explosives where renowned for causing head aches, I remember when I was working ubderground at Kambalda surveying this stuff was just sitting in boxes on the plat waiting for the next shift.

It's weird that we got told to wash our hands thoroughly after touching the stuff but they wern't concerned at all about leaving it sitting around; later on when I got my shot firers permit I found out just how bad this stuff was, it really didnt need much to set it off just a spark from an electric ciggy lighter would do it.
Dont know if it's got anything to do with clusters though as I would have though that if it did then I should have been attacked back then.


Posted in Pain Easing Off on 17 Dec, 2011 - 4:28 pm

Glad the pain has eased a bit Mate.
keep fighting the fight.
And dang I only missed you on chat by 13 seconds.


Posted in Maybe this is for you or This works for me maybe it will works for you on 17 Dec, 2011 - 1:00 pm

Hi leslie

Seems Kenny sent you an Email Quoting verbatim what he wrote in the Guest Book on the US CH site on Wednesday, December 14, 2011 at 07:22:56 (EST)
Thatís the same site& page you posted (Thursday, May 26, 2011 at 01:59:37 (EDT) your theory about using a foam block placed on the effected side to stop a cycle.
Obviously this method is no longer working for you from what I can pick from your recent posts.
Donít let the Gerro southerly blow you away.

Posted in Inverting the head, a.k.a. The vampire bat treatment on 12 Dec, 2011 - 4:07 pm

Hi Brendan

Welcome to the nut hut.

I remember using that method when all I got was a hangover headache & yes it worked a treat, but knowing the way my head is now I wouldnt give it a try.


Posted in new file names. on 12 Dec, 2011 - 9:17 am

saintpeter said:
It's already down to zero degrees and won't climb over that until April icon
cheers peter"

Hi Peter I was watching a bit on telly last night about the protests in St Petersburg over the elections & they said these people where outside in below zero conditions.
At those sort of temp I couldnt give a damn who runs the country as long as they keep the gas comming to the heater.icon


Posted in Live Chat on 12 Dec, 2011 - 9:13 am

Hi Peter
When you log in you will see in the top right corner a box with who is there.

What I have noticed is that if I have been logged on to the 4rum for some time & I see there is some one in chat I need to refresh the screen before going into chat to make sure they are still there.


Posted in Untitled on 10 Dec, 2011 - 11:44 am

Hi Heather

I went across to the US CH site for a look as I know Botox has been discussed there, it looks like it is still in itís infancy as a treatment but does appear to be working for migraine.

I have sent a PM to Barb the lady in the first link who has had it done to give me an update on how she is going with it, as soon as she replies I will get back to you.

The other links make reference to botox but dont give a lot of insight as to how effective it may be.


Posted in are they finally over? on 06 Dec, 2011 - 6:26 pm

Hi Tara

I hope for your sake that it is over.
Personally I try for a week with none & then give it another week before I try the alcohol test ( Yep I know, I'm a chicken).

Fingers crossed for you.


Posted in Don't Let The Beast Rule Your Life on 05 Dec, 2011 - 6:05 pm

Hi Matt
The way to go my friend & a beautiful journey it is.

At one time or another each & every one of us will or has reached this point and I remember that point ever so clearly to this day.

When I went chronic & after 13 weeks of up to 12 hits a day some that bad I was passing out from the pain & also dealing with EHS, RLS & the insomnia I was at a place I never envisaged I would ever be.

Both of my children had flown up from Perth (I found out later my wife had raised her concerns with them).

I remember sitting out on the patio in a world of my own totally locked in despair & probably very close to or already being depressed; I looked up & saw the faces of the three most important people in my life their look was of helplessness in not being able to do anything for me other than be there for me & that they were loosing their husband & father.

It was their being there that made me look at myself & say toughen up princess you have every reason to beat this thing & three of those reasons are standing right in front of you.

You will come out the other side my friend & be a better person for it, fight the fight you will win.


Posted in restles leg syndrome on 05 Dec, 2011 - 5:39 pm

saintpeter said:
"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."

Hi Peter

You are the only other person I know who has experienced this although it does come up in other CH sites.

Almost like a huge electric shock is probably the closest & best description of it & itís over & done with in a split second, as you say always before going to sleep but I have on occasions had them wake me up just after going to sleep but probably not after an hour of sleep.

Did/do yours vary in intensity as with CH; I have had them from ouch that hurt to unmentionable verbal descriptions, with the biggest throwing me bodily across the bed much to the astonishment of my wife.

When I got 3-4 biggies in a night the next day my head on that side would feel like it was bruised inside & was very tender to touch for 4-5 days later.


Posted in Newbie locked down on 04 Dec, 2011 - 12:21 pm

Hi m1nn1e

Welcome to the best little nut hut both sides of the black stump.

I think you will find that Panadiene forte wont be of much use, the others you have mentioned I dont have any experience with so I cant help there.

Have a read of the Oxygen info, I swear by it as an abortive, it's my first line for aborting a hit along with Red Bull for lighter wack's & cold packs or frozen peas in the bag.

Read as much of the info here as you can handle, print out what you think may be able to help & take it along to the Nuro appt when you get refered, also ask about Lithium as a preventative & the oxygen.

You mention that this cycle is different to previous ones, this is what we in clusterland refer to as the Beast Morphing, it will & does change, just to keep you on your toes.

Hope this trip is only a short one.


Posted in restles leg syndrome on 04 Dec, 2011 - 11:58 am

Hi Les & welcome
I dealt with RLS for about 18 months when I changed from episodic CH to chronic; I also dealt with E.H.S. Exploding Head Syndrome, Insomnia & P.L.M.D., Periodic Limb Movement Disorder.

Itís interesting the way the symptoms for RLS are described by sufferers, ranging from itching or tickling as Sara has said to shaking rattling & kicking out; I describe it as like when you are really cold & shivering to the point of rattling, also I think we have to allow for the way people from other countries describe the effects as in say the US ďI say tomatoe you sat tomatoĒ and so on the translation doesnít come across.
My Nuro described extreme cases like me as Restless Limb Movement in that it affected the entire left side of me so that not only the leg but foot, arm & at times the rib cage would rattle & make Chubby Checker look like he was standing still.

I should note that the Nuro I was under (Sasson Gubbay) was no goose, apart from his practice he was the Clinical Professor of Neurology at the Uni of WA he also worked in Royal Perth Hospital & Princess Margaret Hospital for Children.

Like Clusters there is not enough known about this symptom (note I say symptom) as I am a firm believer in the hypothalamus being the centre of a lot if not the most of these maladyís, when you search through the info available the results will always refer to the thought or suspicion that the hypothalamus has some involvement or the gland not doing itís job is controlled from the hypothalamus.

You will see that Sara has mentioned that magnesium supplementation can play a part in managing CH; it wasnít until I started on Magnesium supplements that the RLS & EHS gradually subsided & eventually went away.

Prior to the supplements I found the best way of dealing with the RLS was to let it run its course for the night & not try to fight it, it seemed in my opinion that it stopped quicker that way.

The Insomnia & PLMD are here to stay by the looks as after 7 years there has been no change even with the supplements; but I must say that I have had some very good lengthy remission periods from CH over that time, the best being 2.5 years & I have only had one EHS wack & that was 2 weeks ago & scared the living sheite out of me.

The weird thing with PLMD is that for me it only occurs in the early hours of the morning, usually after around 2am & will continue until I get out of bed, I havenít had a night in these last 7 years without this occurring.
As Ned Kelly would say "Such is Life".


Posted in Just For a Laugh on 29 Nov, 2011 - 5:18 pm

My Favorite Animal

Our teacher asked what my favorite animal was, and I said, "Fried chicken."

She said I wasn't funny, but she couldn't have been right, because everyone else laughed.

My parents told me to always tell the truth. I did. Fried chicken is my favorite animal.

I told my dad what happened, and he said my teacher was probably a member of PETA.

He said they love animals very much.

I do, too. Especially chicken, pork and beef. Anyway, my teacher sent me to the principal's office.
I told him what happened, and he laughed, too. Then he told me not to do it again.

The next day in class my teacher asked me what my favorite live animal was.
I told her it was chicken. She asked me why, so I told her it was because you could make them into fried chicken..

She sent me back to the principal's office.
He laughed, and told me not to do it again.

I don't understand.
My parents taught me to be honest, but my teacher doesn't like it when I am.

Today, my teacher asked us to tell her what famous person we admire most.

I told her, "Colonel Sanders."

Guess where I am now...

Posted in I think this bloke has the answers to our CH on 29 Nov, 2011 - 12:14 pm

Quote from Dr Fuhrman's speel

"There are two types of headaches: (1) tension and (2) migraine."

Duh! The last I saw was there are around 114 known headache types.

He's a Doctor selling a product, something a lot of Yanks do.

You can by the same product type here in Oz if you decide to go that way & without the cost of import postage $$$s.


Posted in Posting Photo's on 13 Nov, 2011 - 8:05 pm

Hi Folks
StPeter asked in another thread how to post smileyís not already on this site, so OK here we go.
This is a good site for them.
All you do is have a look through the site & pick the one you want.
You will see that there is some puter wording to the left & the smiley to the right
All you need to do is highlite the puter text, right click & choose copy, go over to the thread you want to place it in, right click & choose paste.

Have a look & see how you go.

Posted in Are they cluster headaches? Who can diagnose me properly? on 13 Nov, 2011 - 7:34 pm

Hi Tara

Sorry I havnt said G'Day before but been a little busy fluttering around the country side with work & only getting to catch up now before I head bush again.

Youve got a lot of good info from these kind folks already, thereíre not a bad bunch Eh!icon

I cant help on the meds side of things, I'm an oxy junkie.

Anyway good to have you aboard.

Posted in oxygen availability on 12 Nov, 2011 - 7:48 pm

Doing the oxygen happy dance.

Now your living


Posted in Treatments on 12 Nov, 2011 - 11:10 am

Hi Stone
First up Welcome to the Nut Hut

I've been away on field work & just trying to catch up with whats been happening.

I did a little search on the herb Bryonia & found this at the link below, it gives credence, not in depth but it's there to what you say about what happened for you.

I'll keep it in the back of the mind if ever my regime with magnesium,calcium & Vit D3 stops working.


Posted in What Works For Me on 15 Oct, 2011 - 11:04 am

Hi Kim & Peter

It was discussed in this thread, i remembered that I put a post against it & only needed to check back through my posts.


Posted in Time to "fess" up on 13 Oct, 2011 - 9:22 am

Definitely noticon

Posted in Time to "fess" up on 12 Oct, 2011 - 6:34 pm

Hi Heather
Sorry to hear the beast may be coming back, I may not be able to help with the pain but perhaps I can with a smile.

Yes I know I'm severly retarded.
All the best

Posted in Memory loss on 12 Oct, 2011 - 9:21 am

Hi Rick

Iíve never taken drugs for CH other than Imigran for short periods but the short term memory loss I went through in the first 13 weeks going chronic was huge.

Id go to the shed to get something & by the time I got there I was unable to remember why I went there & like you say about driving! did I stop at the last set of lights?, after the 13 weeks & Id settled into the 3-4 hits a day instead of the 10 Ė 12 I started to get my short term memory back & the amount of little jobs I found I had started & never finished was incredible & I couldnít remember having starting most of them or why I even wanted to in the first place.

Like you I was conscious of the fact that I was forgetting things & resorted to using the little sticky pads just to be able to do things without losing my way.

How I got through those 13 weeks Iíll never know, I must have some very tolerant people around me.

What did work for me was Taurine, I read an online article about work being done with alzheimer patients & the encouraging results they where getting using the Taurine but in your case I wouldnít recommend it with the drugs you are taking as itís a known accelerant for meds & could cause more problems than you already have.

Your memory will come back, its just bloody annoying right now & thereís not a lot you can do about it as far as I know.


Posted in Nerve stimulation or Deep brain stimulation on 05 Oct, 2011 - 10:10 am

Dusker said:
"Thanks Shell and Barry
Must admit Shell I couldn't find the second article April 05??

I was just in there reading it Heather, give it another try as thats where I got the other links from.

Posted in Circadian Solstice??? on 05 Oct, 2011 - 10:06 am

I picked this up from another thread & link from Shell; although it doesnít relate to CH I think it adds to this thread & the theory of Circadian Solstice.

I have over a period of time I have been talking offline with Batch about the subject & his/mine regime that includes vit D3 & we both agree that there is possibly something in it.

Not that I need to remind you but some Vit D is absorbed from sun light.

What I have been trying to do when time allows is to pick up from peoples posts where they live in relation to the equator & then try to work out the correlation between the time of the year, the intensity of the current CH bout & the duration.

Itís been somewhat difficult as a lot of people donít post their location & some come for a while then disappear so it throws those out of the equation.

What is slowly becoming less foggy is that it appears that generally those living closer to the equator donít get effected as badly & connecting this with those who are using Batchís regime appear to be getting back to a normal life quicker than without the D3.

This is all airy fairy at this time but it keeps me out of trouble & Iím not expecting a PhD from it, just satisfying my weird curiosity.

Quoted from the article
ďPatientsí demographic information and BMI, along with the months in which their assays were drawn, also were considered.
Eighty-four percent of patients had either vitamin D insufficiency (30%) or deficiency (54%). Non obese patients sampled during summer months were the most likely to have normal levels of vitamin D, while obese patients and African Americans were the most likely to have vitamin D deficiency.Ē

The full article is here.


Posted in Nerve stimulation or Deep brain stimulation on 05 Oct, 2011 - 9:41 am

Hi Shell

Thanks for those, interesting reading & opened doors to other articles.

Nerve stimulation or Deep brain stimulation is cropping up a lot & not only for head ache related problems; I caught a little of a clip on the TV the other night about a young lad with cerebral palsy who had been given nerve stimulation & there was a reasonable result from it, but as they say they are really in the infancy of this type of research.

The link below was linked to a link that was linked to your link ďif that makes senseĒicon

Iím going to tack this onto Benís thread on ďCircadian Solstice???, it has some relevance.


Posted in just how far can you go on 02 Oct, 2011 - 1:07 pm

All the best for tomorrow Mate,will be thinking of you.


Posted in Posting Photo's on 02 Oct, 2011 - 12:19 pm

Just trying something folks.
In answer to a post on another thread.

To be able to post photo's here you are going to need an account with a hosting site, a hosting site is where you can upload photo's that are held on that sites server.
Your internet provider may have an area where this can be done or if you have a free Blog spot where you have been placing photo's you can use that.
You will first need to upload your photo to that site, once the photo is there the easiest way to get it across to this site is to keep this site open & open up the site where you have the photo stored in another panel.
Right click on the photo which will bring up an info panel, at the bottom of that panel you will see "Properties", click on Properties and another panel will come up, you will see Address (URL) with something like this against it
, highlight this with the left button of your mouse & then click your right mouse while holding it over the highlight & choose copy.
Go across to this site & choose the thread where you want to put the photo, open up the reply panel as you would normally do, hit enter a couple of times to give you some typing space then open up the Insert Image line under the Smileyís, you will be asked to ďplease paste your image url here to replace this textĒ place your cursor in this box & right click then press paste & click on OK.
The photo should now show in the reply panel, you can then go to the top of your post & type your message as normal.
Hope this makes sense & is a bit long winded but thatís life on the wide wide world of the net.

Posted in Untitled on 30 Sep, 2011 - 5:01 pm

Dave2036 said: Yeah the energy drink is something that i got from this site. It can help some people. i think it has something to do with the caffeine. It helps the other medication absorb ito your system faster than it normally would. ( i'm sure someone will correct me if i'm wrong) "

Your pretty much spot on there Dave; the magic potion for want of a better wording is the amount of caffeine & Taurine in these energy drinks, it has been know for many years that caffeine is a help for some of us & what the Taurine does is it works like a turbocharger on a sluggish old diesel it boosts the effect of the caffeine.
A word of warning though for any one on medication particularly heart meds if the 2 are taken at the same time it may also effect the performance of the particular med being taken.


Posted in just how far can you go on 30 Sep, 2011 - 9:36 am

Hi Alex

I hadnít had a lot of luck with Melatonin by taking as directed on the label but I recently had the Flu & with the coughing & carry on I wasnít getting a lot of sleep.

I tried a slow intake over a period of time & found it worked; I started at 5:00pm with 1 tablet & took 1 every hour until I went to bed at 9:30 when I took 1 more (5 in all) I didnít sleep like the proverbial baby but I did get sleep.

The figuring of this was that the body predominantly through the pineal gland excretes Melatonin in an exponential fashion in that a little is excreted initially early evening & increases in dose as the evening goes on, ďthis is the bodyís natural sleeping tabletĒ this dosing to the body continues on into the night until it reaches the point where there is enough to gain deep sleep & then the dosage gradually decreases to the point of zero & you wake up.

I have a theory that because the Hypothalamus is wonky its not sending out the right messages to those glands & organs that produce these chemicals, if we are able to manually override the part that would happen under normal circumstances with a healthy Hypothalamus we should be able to mimic what should happen naturally.
This is where I start wondering if for those people who get benefit & relief at night from clusters are unintendedly doing just that manually mimicking the natural event that would occur.

Not saying this is going to work for everyone but I think we need to try different ways with these things to find the personal balance we need.


Posted in Hello everybody on 30 Sep, 2011 - 8:42 am

Hi Allan & welcome aboard.

Youve found a good spot with good people.


Posted in Just wanted to say HI and apologise for my being MIA! on 30 Sep, 2011 - 8:39 am

Hey you were never really gone, just needed some time out like everyone does when life throws the full load at ya.

Good to see you around againicon


Posted in Dont get ripped off on 29 Sep, 2011 - 1:21 pm

This is not a CH subject but worth passing on as I have noticed that Woolies & Coles here in Karratha are doing this, I use cash so it doesn't effect me.

The big retailers particularly the supermarkets do not automatically hand you a receipt anymore if the sale is under $30. you must ask for itÖ


An associate bought a heap of stuff the other day while on holidaying in Melbourne (over $450), & when he glanced at his receipt as the cashier was handing him the bags. He saw cash out of $20.

He told her He didn't request any cash and to delete it. She said he'd have to take the $20 because she couldn't delete it.

He told Her to call a supervisor. Supervisor came and said he'd have to take it.. he said ďNO Bloody way!Ē

Because taking the $20 would be a ďcash advanceĒ against his Credit card and he wasn't paying interest on a cash advance!!!!!

If they couldn't delete it then they would have to delete the whole order.

So the supervisor had the cashier delete the whole order and re-scan everything!

The second time he looked at the electronic pad before he pinned in his number and again cash-back of $20 popped.

At that point he told the cashier and she deleted it. The total then came out right.

The cashier said that the Electronic Pad must be defective. Obviously the cashier knew the electronic pad was defective because she NEVER offered him any cash after either of the transactions.

Can you imagine how many people went through before him and by the end of her shift how much money she pocketed?

His wife went into a ďColes Supermarket Ē last week. She had her items rung up by the cashier. The cashier hurried her along and didn't give her a receipt.
She asked the cashier for the receipt and the cashier seemed annoyed but gave it to her.

She didn't look at her receipt until later that night when back at their Hotel. The receipt showed that she had asked for $20 cash. SHE DID NOT ASK FOR ANY CASH, NOR WAS SHE GIVEN IT!

So she called ďColesĒ who investigated but could not see the cashier pocket the money.

When she spoke with a friend who works for one of the banks; she was told that this was a ďnew scamĒ and the cashiers carry out the scam when it is very busy so that people either don't ask for their receipts or don't look at them until they have left the store and most of the time they don't check it until they get home.

The cashier will key in that you asked for cash and then hand it to one of her friends when they next come through the check-out queue.

This is NOT limited to Coles; they are just one of the largest retailers so have the most incidents.

I wonder how many "seniors" have been, or will be, "stung" by this one?????




I've since seen people do just thatÖ.. SO NOW I'LL START!

PASS THIS ON TO YOUR FRIENDS, KIDS, - letís not get ripped off.

Posted in oxygen availability on 29 Sep, 2011 - 10:31 am

Moodog said:
"Just Researching CH Stuff and read this:

Oxygen use: loose fitting facial mask over the nose and mouth attached at the onset of an attack; flow rate 7-10 L/min for up to 15 min with the patient sitting and bending forwards.

No-one told me sit forwards. icon

Cheers, Neil"

I agree with Heather that sitting up and straight allowing the chest to expand out and diaphragm down makes far more sense.
The flow rate 7-10 L/min for up to 15 min has been hanging around for a long time & really in my opinion is only a general guide & back in the dark days you couldnít get a regulator that would go over 10 L/min for personal use; I start off at 15 L/min & as the hit subsides I will reduce the flow down to around 10 L/min which is a more normal breathing rate as I cant keep up with a high flow rate for an extended period of time & it only wastes the o2.

The time of 15 minutes is again only a general guide, the ammount of o2 & the length of time is always going to change with the individual; I use this method, count the number of breaths it takes to kill the hit & I do mean kill the hit no maybe's or close enough & then breathe the same ammount of breaths to ensure you dont get a rebound, getting off the o2 to quickly even though you may feel OK will most likely end with a rebound that I have found harder to get rid of & make the pain last longer.

I've seen posts on the US/UK sites where people are using flow rates @ 25 L/min & for the life of me I cant see how anyone could inhale that amount of air in any form for an extended period of time unless they have huge lungs.

Neil can you give us a lead as to where you saw that written as I would like to have a read.


Posted in on 24 Sep, 2011 - 11:33 am

Hi Folks
I'm bumping this thread again because it is proving to be a winner for to many people to not be worth a try.

I have been following this thread from it's inception as it was very close to what i have been doing & getting good results.

It's not perfect but boy it gives me some very lengthy remmission periods, I still get the mild constant shadows & only yesterday evening I got a 10-15 second ice pick jab that I really thought was going to turn into a hit but faded away.

For your info the author Batch who was a US Navy pilot has a Masters Degree in Chemistry & threfore has a better handle on how these vitamins, minerals etc react & is better placed to be able to ubderstand what the medical proffesion is talking about than us every day sufferers.
Where they talk about Lemonade in the thread it must be realised that the US lemonade is not like ours, its more like the lemon drink that Granny or for people of mine & Heathers generation Mum used to make when we had a cold.

This link will take you to the very last post by Batch but in all honesty the entire thread is worth the read.


Posted in Anyone else's CH go to eleven? on 16 Sep, 2011 - 11:43 am

Dusker said: Does any of this make any sense at all?"


Posted in Recent Research on Hypothalmic Involvement on 15 Sep, 2011 - 8:53 am

saintpeter said:
"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."

I agree & they only did the study on 4 patients, not what I would consider an in depth research.

The word " polysomnography" had me running to Wiki which basicly says its a sleep study & does refer to circadian rhythm sleep disorders so yes Ben I could hold a spot in the "Circadian Solstice" thread.


Posted in Anyone else's CH go to eleven? on 12 Sep, 2011 - 5:05 pm

Yes I agree to a point with the definitions of pain level but at the same time I think the KIP scale adequately describes the pain levels with one exception & thatís a 10 where I believe another piece of wording should be added that says becomes unconscious; I have had this happen to me on numerous occasions when at the peak of a high cycle, unfortunately you donít stay passed out for long enough, if I could stay unconscious until the hit had passed I would be laughing.

When I queried my Doc on this & in conjunction with a copy of the KIP scale she stated that when a person passes out from pain it means that the body has passed its threshold of pain endurance & the brain shuts down to protect other body parts, she didnít elaborate on that but I could see what she was getting at.

The KIP scale was written by Bob Kipple a very well respected member of the CH family, unfortunately Bob passed away in 2006, the Kip scale is recognised throughout the CH fraternity & medically CH knowledgeable as that best describing the levels of pain.

For those who want to read the KIP scale you can see it here.


Posted in oxygen availability on 05 Sep, 2011 - 9:09 am

Hi Ben & All

As you say "probably just another online scam".

From the looks of it it's an aerosol spray & probably only good enough to blow the waste of my woodworking lathe a couple of times.

Iíve seen things like this before & at times even promoted as CURES for CH, there was another one around a few years ago being pushed as high concentration oxygenated water that was tried out by a cluster head from over Sydney way who said it was as useful as putting your right big toe in your left ear.

I agree this sort of BS can only hurt our efforts to gain recognition of oxygen as a safe & effective abortive for clusters & educate the Medical fraternity.

Ah well gripe over.


Posted in oxygen availability on 25 Aug, 2011 - 12:42 pm

Hi Rick

Youíll hear a few stories out there from the ill informed know everything know nothing brigade.
Iím in contact with another cluster head in the States; Flight Lieutenant Pete (Batch) Bachelor ďretiredĒ who flew Jet fighter planes in the Navy for thousands of hours while breathing only pure oxygen, it was a requirement for pilots due to the altitude & the G forces exerted during these flights.
Heís still alive & kicking.

I have scaring on my lungs but that come from having whooping cough as a child, & the last time I looked in the mirror I looked reasonably well.

Donít let it worry you my friend your best friend is your oxygen, unless of course you are married then your wife is #1.


Posted in Chronic Pain as a recognised condition on 23 Aug, 2011 - 8:42 am

Ben said:
There are hoops to jump through and time to wait before anything happens on the implant front for me. Chances are, the peak of my CH bout will line up with a 6 month wait just nicely and I will get a proper shot at this. Fingers crossed.


Only a clusterhead could write a positive sentance on a negative subject.
Hope all goes well for you mate.


Posted in Oxygen again on 21 Aug, 2011 - 11:31 am

saintpeter said:
icon Geez, that's atrocious- go to your room...
cheers peter"

Peter you quack me up.

Posted in Oxygen again on 21 Aug, 2011 - 11:29 am

Hi Kim
Welcome aboard.

Ah the old ooh no we couldnít do that story again.

Go over to the BOC outlet in Malaga just off Alexander Drive & near Colli Hardware, Google BOC outlets & you will get the exact address & open an account there, you could also get your Doc to give you a letter to that effect.

The guys know me there as I went into a cycle when I was down in Perth earlier this year but I already had an account so I didnít have to go through the account set up wait, it used to take about 2 weeks to set up an account when I first opened mine but now it should happen a lot quicker.
Brandon & Michael are a couple of good guys who do understand; I gave them a copy of the letter to friends & colleagues from the OUCH site so they could understand what we deal with, Michael told me that there was another chap who gets oxygen for the same thing so honestly you shouldnít have any drama.

You will need a regulator, hose & mask; the regulator you can purchase from BOC but the mask is another story, one option is to go ER and see if they will give you one, thatís what I do up here but then again Iím in the country & the local people are a little more tolerant, the only other way I know is to look on EBay they are usually available there, chemists donít usually stock them.

Choice of bottle size is up to you; I have a NE which is 4000 litres for home & I carry a NC 490 litre bottle in my work Ute, the NC is only good for about 3 hits & really is only for the one that grabs you while travelling.
Depending on the level of medical cover you have may help with the cost; Iím with HBF at a high level & they cover 50% of the hire of the bottles & the cost of the gas up to $ 600/year.

If you have trouble getting a mask there is a temporary one you can make out of a large zippy bag, a length of oxy tube & the centre out of a dunny roll, push the tube into the zippy bag at the opposite end of the zip & secure it with a lacky band, make a hole in the other corner away from the zip and secure the dunny roll centre there & you have a workable non-rebreather mask that you can breathe the air through your mouth & exhale through your nose & the bag will act as a reservoir .

Hope this helps

Posted in Energy Drinks Oxygen & others on 14 Aug, 2011 - 2:50 pm

In response to Bens questions in another thread I have started this one so as not to hi-jack the other.
What I have written here comes from my own experience & that passed on by others, I hope it assist in making the decisions you need to make in your own search for relief.

Ben asked
What is it with Red Bull? It is everywhere in CH literature.

There's not so much as literature on Red Bull or other energy drinks as such the original posting on this came from a young lady in Sweden who contributes to the US CH site; and she came across it purely by accident, she was in cycle & felt a hit coming on & is one of those people who needs a lot of cold liquid as well as the oxygen to kill a hit, she raced to the fridge for something cold & the only thing there was a can of Red Bull, she sculled that down in no time flat & then headed for the oxygen upstairs but by the time she got to the oxygen the hit was almost gone ???.
This having occurred she wondered if there was anything to it or just coincidence so the next time she felt a hit coming on she did the same & again the hit died before she got to the oxygen.
She reported this on the US site for others to try to see if it worked for others; as I was in high cycle then I tried it at my very next hit & yes it worked as it did for many others & has now become one of the favourite weapons in the arsenal, I carry a C size oxy in my work ute & a couple of cans of RB in the car fridge.

Ben said
I am scared to chug a few of these because I don't know what is in them and high-dose caffeine sometimes causes tachycardia in me, also worried about interactions with other heart meds.
If you are taking any meds or supplements at all you should talk this over with your practitioner, the explanation of why will become apparent at your next question.
Can anyone explain what the working theory is behind chugging a few of these Red Bulls at CH onset? Vasodilatation from caffeine perhaps, what is the mechanics of it Barry?

The theory behind any of these energy drinks is predominantly the amount of caffeine @ 80mg/serve, it has been known for a long time that caffeine can reduce the intensity of a hit and for some people will kill a hit by it self; what make it work faster is the 1000mg of taurine, Taurine works as a Turbo Charger ď try speeding in a sluggish old diesel car & then try the same car with a turbo added BIG Difference ď hence the need to talk this over with your practitioner as the Taurine will enhance the effects of any drug taken, there is also the effect of something very cold, a lot of people can reduce the intensity of a hit by using a pack of frozen peas placed against the effected side.

Ben said
Also Barry, my O2 trial was conducted straight off the hospital wall outlet O2 supply, through a normal oxygen mask with the holes taped up. It was somewhat hastily cobbled together with the resources at hand. I learnt the correct breathing techniques at the time. We ran 15L/min at as close to 99% pure as the hospital plumbed O2 system would allow. We did not use a cylinder or a rebreather mask. We only did this once. I think this is where we may have failed to effectively detect efficacy (or inefficacy) of O2 in my CH.

The oxygen used in the hospitals actually comes from a bank of cylinders plumbed to the areas of the hospital where itís needed so itís just the same as you having your own supply.
You need to have a flow of oxygen at greater than 12l/min & a non-rebreather mask this way you are breathing pure oxygen & not recirculating any of your exhailed breath, you need to get onto it at the first sign that you are going to get hit & suck it in as hard & fast as you can, ( you may see posts where people say to hyperventilate, Hyperventilation is another completely different thing as anyone with asthma will know.
You need to stay on the oxygen until you have killed the hit & for the same amount of time again as it took to kill the hit, this is easily achieved by counting the number of breaths it take to kill the hit & then breathe the same amount of breaths once the pain has gone, this is done primarily to prevent rebound hits.
This having been said it may not always be the same each cycle as was proven at my last cycle; I found that it was taking longer to kill a hit with the oxygen & needed the assistance of a cold pack at the same time.

Ben said
Do you think I should ask my specialist or GP for an O2 cylinder to try at home with the right mask before we go ahead with implanting anything?

Definitely; oxygen taken at the rate stated above or greater is a great abortive with no ill effects, some people may suggest without authority that oxygen at that rate is not good for you, if that was the case then Jet Fighter Pilots should not be breathing pure oxygen for the 8-10 hours they do while flying at great altitudes.

Ben said
Of course I am not asking for outright medical advice Barry and I know you are very careful about this; I would just appreciate your thoughts on the merits of my O2 trial, seeing as you are an experienced O2 user! I reckon we got it all wrong and I need another go!

Your right & I wouldnít give unqualified advice but oxygen has been proven to be a saviour for so many people if used correctly & it was my GP who recommended oxygen to me so much so that at a later visit when she had a med student with her at the consultation she asked ME to explain the benefits of oxygen as a safe effective abortive, to which I gladly did as I consider that the more our Medical fraternity knows about our condition & the methods employed to assist us the better.

Ben said
Cheers, Ben

As a closing note, I have been using oxygen since going chronic in 2004 & it remains my first line of defence as an abortive.

Hope the above gives some clarity.

Posted in Fantastic website for a CH newbie! on 14 Aug, 2011 - 1:43 pm

Hi Ben

Rather than hi-jack this post I have cut & pasted your questions accross to a new thread " Energy Drinks" under meds & treatments & will answer there .


Posted in Fantastic website for a CH newbie! on 08 Aug, 2011 - 11:39 am

Hi Kazza

Welcome to the site, sad you have to be here but the site & it's people are full of usefull info.

Coincidence?; I didnt get clusters until just before I turned 50 now 62 & they say you get it early in life & it decreases with age, if that's the case you & I are going to live to a ripe old age.

I cant help you meds wise as I dont use them; my abortives are oxygen, red bull & ice packs.


Posted in Pituitary gland question... on 12 Jul, 2011 - 10:12 am

XxLovePeaceXx said:
"ok so nothings working and i'm still in denial there has to be some kind of cause mode again... and lat time I wrote that a blood test said that I had abnormally low blood sugar levels - this is a huge trigger for me too not eating regularly in the day. I find if I wake during the night and eat I'm much less likely to get a CH.

So ignoring my mum to see a physician/neuro because it seems like no one has any luck anyway... and I google (go dr google) low blood sugar levels and find it can be caused by a weakened pituitary gland and so i google pituitary gland cos I dont know what that is and read "The pituitary is functionally connected to the hypothalamus" amongst the jargon... now isnt ch linked with the hypothalmus??

So maybe mums right and I should see a specialist??"

Hi Lauren
"now isnt ch linked with the hypothalmus"

Yes your right it is, the hypothalmus is responsible for a lot if not the most of the body's functions, one of those being that it tells the pituitary gland when to start excreeting melotonin the body's natural sleeping pill.

The malfunction of the hypothalmus is responsible for a lot of conditions IE: CH, restless leg, exploding head, Parkinsons? there's so many I have forgotten.

That's why when I talk about what we suffer from I prefer to say that I suffer from a faulty hypothalmus and my symptoms are CH, restless leg, exploding head.

What I am saying here is if the hypothalmus is wonky then it stands to reason that others parts of the body will chuck a wobbly as well.

I seriously hope I am making sense here


Posted in Cronic sufferer considering Trigeminal clamping.... on 12 Jul, 2011 - 9:51 am

Hi get'n
There is a possibility, take a look at this thread on the US site.

I have been chronic since 2004 & started on the Magnesium, Calcium & Vitamin D3 April 2006; long before Batch the thread iniator started, it took untill October 2006 before I got any real effect from it so it's not an instant fix.

Once it did start working I have had seriously long breaks in low cycles & short high cycles, the best break being 940 days.

This doesnt mean that I dont still suffer, I do but it is only daily shadows & the very occasional ice pick jab.

I am not saying this is going to work for every one but it's worth a try.


Posted in The pain made me do it..sorry on 28 Jun, 2011 - 10:46 am

Thank God for that, I thought I was going madicon

Posted in Circadian Solstice??? on 23 Jun, 2011 - 6:24 pm

Geez Ben I hope your wrong with the Circadian Solstice.

I just recently come off a high cycle that started mid February.

Here's my high cycle diary:

June/July 2007 50 days
June/July 2008 53 days
Feb,March,April,May 2011 93 days


Posted in Restless Leg Syndrome or "Tic" syndrome? on 13 May, 2011 - 10:24 am

Hi Ben

There appears to be a myriad of conditions/symptoms that CH erís can get & it seems it all depends on how badly effected the hypothalamus is.

From my experience:
Restless Leg Syndrome
Exploding Head Syndrome
Hypnic Jerk

I did have RLS for about 2-3 years but it eventually went away,
& only affected my Cluster side.

My Nuro Clinical Professor Sasson (Sonny) Gubbay described the condition as staged meaning that depending on how much the hypothalamus was out of kilter related to how badly effected you get; because of this he preferred to call the condition restless limb syndrome as from his experience it can effect the whole side of the body not just the leg.
This is what happened to me in that when it occurred & only at night time it was my leg arm & torso that had the constant jerking/vibrating movement, that could last for 10 minutes or a couple of hours.( Great way to exercise one side of the body if you like)

The Exploding head syndrome showed its ugly head at around the same time & was worse than the RLS in that it was just like a full on KIP 10 cluster that happened in a split second; the best description I can give of this is, Imagine lying in bed & Mohamed Ali walks in & hits you with a round house punch to the side of your head.
The attacks can be variable in that they may not happen every night; may only happen once in that night or you can get multiple attacks, & this is where life gets ugly depending on how bad those hits have been, the most I ever had in one night was 6 & the next day I couldnít even comb my hair due to the bruising inside my scull & the bruising can last for several days.
Some hits can be strong enough to physically throw your head & torso across the bed much to the surprise of the missus. (Not tonight darling) fortunately this has gone away & Iíll be happy if it never comes back.

Hypnic Jerk is another darling that affects me but is only annoying in that it keeps me awake for a while but here is no pain.
Interestingly all of the above only happen at night, I have never had a day time episode.

From all the searching I have done on any of the above it seems that these are all related back to a wonky hypothalamus.

I have come across people who have RLS but not clusters & they say it only affects the leg & nothing more.

As you say about throwing the cup of coffee from these sudden movements yes that does happened to me but oddly it happens with my right hand & not the left which is my cluster side, I also get the shakes in my right hand & have to refrain from holding anything until it settles down.


Posted in Untitled on 23 Mar, 2011 - 9:04 pm

G'day DDay2

Have you been given any meds from your GP, if not ask for Imigran or Sumatriptan 50 mg tablets.
Once you have them this should help you out on the number of hitsyou have through out the day & night, the only problem is Docs arnt usually happy giving script for a lot of these but you never know, the doctor I saw here in Perth allowed me to have 5 repeats but only because he knows me from about 20 year ago & I was able to tell him what they are capable of.

Now here's the trick; when you get hit & go on the o2 count the breaths you take to kill the hit & make sure you have killed it, no nearly's or close as, it must be gone completely knock down one of the trex tablets followed by some water & then do follow up breathing for the same ammount of breaths it took to kill the hit.
I have been using this method for about the last five years & it has never failed me, I can then get from 6 to 8 hours pain free before I get another smacking.

It may also be worth getting your Doc to look up Lithicarb tablets 250 mg, they are very helpfull for a lot of us in reducing the cycle length but like all medication follow the Docs orders on the use as they can do your gut some damage if taken without food.

Edited to add: Why not print this out & take it with you to the Doc for them to read
Hope this helps out.

Posted in Untitled on 19 Mar, 2011 - 11:40 am

Hi Bluesphere

I live just over the causeway from you in little old down town Karratha but we are in Perth right now & wont be back until early May if things go right for my wife.

The only Doc I know in the Pilbara that has any clue about CH is Dr Crystal Cree, she is the one who diognised me but she like my wife has her own battle with breast cancer & is only helping out when she can ( I think she is helping out at Wickham right now).

Our current Doc is Neils Myberg in the Karachi Medical Centre but I havn't educated him in CH as yet
If you want to give me a call ring me on 0427 196 396 & I'll help where I can.


Posted in on 04 Mar, 2011 - 12:21 pm

Hi again
Batch has answered your question in an Email to me; and yes the thought was to lower the pH level of the body.

This resulted from some private research by Batch & others; the content is to large to post here as there is a PFD file & an XL spreadsheet along with a very detailed explanation.
You will see in the article that Batch was a US Navy pilot with years of experience in flying missions on 100% oxygen & he explains the benifits of that & the rigerous medicals that these people went through, witch also lends to the continued use of o2 not being harmfull.
I dont want to post that info here verbatum & cause the stir that happened last year that came about from my simle rewording of another article from another site.

If you would like to Email me with your Email addy I will pass it on to you as Batch has no qualms as to this info being spread further, in fact he considers it an honor as he stated in his seperate PM that others would be interestd in his work.
It makes for very good reading & makes for so much sense so far.

Once I have got my head completely around what he has written I will endevour to put it into as simple a term as I can without paraphrsasing.
I have sent a PM to you with my Email addy


Posted in on 03 Mar, 2011 - 1:34 pm

Hi Sara

I am pretty sure the answer to your question is yes but i have sent a PM to Batch the author of the thread for him to confirm.

I have been talking to batch off line by Email for a while now on this subject as we believe that what we are doing is so closely alighned to be coincidence.

I will post his reply as soon as I get it & knowing batch that wont take long at all.

Interesting to read where you say " minerals and ural but guess what - suffering nowhere near as bad as previously - less headaches and less intensity',
as I have been in a high cycle for a bit over a fortnight now & i am not hurting anywhere near what I would expect prior, the low level ones I am just ignoring & they go away within 30-50 minutes, if this is as bad as my high cycles are going to be i will be a happy little vegimite.


Posted in on 02 Mar, 2011 - 11:45 am

First up a disclaimer: I am in no way suggesting that I am pointing people in the direction of another CH site, more to the point that there is something of interest that we seriously should look at.

On the US based site there is a thread going about the benefits that vitamin D3 may give CH sufferers.

I am putting this up as I unwittingly started taking D3 through the Magnesium/Calcium supplements I am taking that certainly has helped me manage my CH.

You will see in the posts that I have put there that until the manufacturer of the Mag/Cal sups includedD3 in the mix I was having a reasonable but not guaranteed PF time, since then I managed to go 2 & a half years with only shadowing & have only in the last fortnight started to get some very minor pain, only 5 very low hits that have been killed of with a cold pack & only 1 that I used the o2 because I was to lazy to walk down stairs to the freezer for a cold pack.

I suspect that this may if it proves beneficial be more useful for chronics but who knows if an episodic was to start dosing when they are close to when they would normally go onto cycle it may work for them as well.

Anyway take a read & letís hear what you think.


Posted in Untitled on 01 Mar, 2011 - 3:39 pm

Hi Woraman & Welcome
As I understand it pot wont work for CH, I dont have any personal experience with it recreationaly or madicinal it's just what I have read on other sites.
Take a look at the oxygen treatment to the left, for aborting a hit, it is the best & safest I have come accross & can kill a hit inside of 10 minutes.
You may have to get a script from your MD if you dont already have an account with BOC.


Posted in Untitled on 28 Feb, 2011 - 12:12 pm

Hi Zana & Welcome

Sorry to hear youíre hurting but then again if you werenít you wouldnít be here.

With your oxygen mask; have you got a non-rebreather mask, this is what one looks like.

I get mine when I need a new one from my local hospital; they are very accommodating that way.
You need the one with the bag so that it can refill while you are exhaling & then have a lung full of o2 ready to breath in, when you say you are pinching the hose I suspect you have a rebreather that is in no way as efficient as the other.
You will still need to tape over the holes on the side as those valves arenít that reliable.
Personally I donít use the mask as I have a beard & canít get a proper seal so I breathe straight from the bag, in through the mouth & out through the nose.
Hope this helps

Posted in Untitled on 25 Feb, 2011 - 7:45 pm

Its a strange beast we deal with, over the time I have been dealing with it I like I guess a lot of you have searched for answers & the things I list below are not answers as such but thing that relate to what has been talked about above, apart from this site I am a member of OUCH UK & the US based & this is where most of this info comes from other than research of medical paper over the years.

Trauma: there has been some evidence that people who have had trauma through a car accident get clusters but itís not confirmed as a main instigator of CH I havenít had a car accident or been put in the position of trauma in any way other than falling of my tredly when I was a kid.
Back pain: I have never come across lower back pain as an alignment to CH but who knows with this beast.

Age & smoking drinking: I never got CH until I was just about to turn 50 & had drunk & smoked since I was about 16, smoking is a vasco restrictor in that it will assist in helping the blood vessels from swelling which is the cause of the pain we get, for those who are new to this lovely little dance we do, swelling of the blood vessels in the effected side is what creates the pain we get & the vessels can swell to around 20 times their normal size, the big question is why this happens & thatís where science is at a stand still, itís believed in neurological circles that the hypothalamus malfunctions but as to why it malfunctions the jury is still out, it should also be noted that people who have never smoked or drunk get the same affliction.
Itís known that the hypothalamus is the control centre for most of the bodyís organ functions, itís worth googling for hypothalamus & disorders you will find an absolute myriad of ailments related to the hypothalamus.
Age is another thing, it is considered in medical circles that you get CH early in life & grow out of it, if thats the case then I am going to have to hang around until I;m about 100,don't really fancy that.

Sleeping disorders: these can be attributed to the hypothalamus; it controls the penal gland that in turn makes the natural chemical melatonin, which is the bodyís natural sleeping tablet,
Left handed right handed or ambidextrous as far as I have ever read there isnít any correlation to which side you will get hit on & indeed some people report that they switch from side to side during a cluster period, may have been left side last cycle & right this time, not the norm but does happen.
Hot verses cold: now this is one that throws the cat in among the pigeons, why is it that people with the same condition react differently to heat or cold, for me cold packs can kill a small hit in a few minutes if got onto quickly where as heat will crucify me & other people as has been said before can take a really hot shower & then lay down with a cool flannel.
Telephones: as a relatively new invention I personally wouldnít expect that they would make a difference as people have been recorded in history as having CH way before phones came about, Iím not saying they donít help attribute to the condition but I think we cane rule them out as a cause.
There have been other things discussed that will help or lessen the effects one that has been talked about a lot is changes in latitude creates changes in attitude, I actually experience this about 5 years ago when we visited our granddaughter in Melbourne, we live north of the 26 parallel & the 2 weeks we spent in Melbourne where absolutely PF not even a shadow but they returned as soon as I got back home.
I know I havenít given so much as an answer here but I hope it gives some insight into what has been discussed on other forums & encourages every one to search further & become very aware of your condition & here I will quote from a long time sufferer "an educated Ch'er hurts less" & I can assure you he is right.

Cheers & some PF times

Posted in drug suggestions? on 08 Feb, 2011 - 3:30 pm

Hi Cher & Welcome

Sorry to hear your hurting we will help where we can.
Firt up go get yourself some cans of Red Bull get them icy cold & at the first hint of getting a CH scull one down as fast as you possibly can, a lot of us find this works to kill low level hits & it may get you through untill you get sorted out with the Nuro.
This is no BULLicon

Secondly read up on the oxygen link, its the safest & cheapest abortive around & can kill hits super fast.

Read read & read some more, an informed clusterhead hurts less.


Posted in Untitled on 31 Jan, 2011 - 9:38 am

Hi Nomad
Glad your getting some relief from the o2.

I breathe straight from the bag as I have a beard & can't get a seal with a mask; when I was using the mask I found it hard to breath through the nose, I simply couldn't get enough o2 trying to hyper ventilate, so for me its in through the mouth & out through the nose sucking as much as I can & as deeply as I can.

I can abort a hit within 3 - 5 minutes, oxygen ROCKS

Edited to add: I should make note that when I say abort in 3 - 5 minutes that is 3 - 5 to abort then another 3 - 5 minutes staying on the o2 to prevent rebounds.

I use the counting method wherby I count the number of breaths it takes to abort the hit & then stay on the o2 for the same ammount of breaths.

Posted in Untitled on 31 Jan, 2011 - 9:30 am

Hi Wrighty
I dont take it myself but others do, the Generic Name is Verapamil

Isoptin SR Controlled-Release Tablets are a calcium channel blocker. It works by relaxing (dilating) your blood vessels, which lowers blood pressure the same as Oxygen works as an abortive.

There are side effects that need to be addressed before taking them but I'm sure you GP has told you that.


Posted in Untitled on 27 Jan, 2011 - 11:35 am

You could try your local hospital, that's where I got mine from by simply explaining at my condition.
I'm in a country town, dont know about city medico folks & if the are aproachable.

Posted in Untitled on 16 Jan, 2011 - 12:23 pm

Hi Nomad & Welcome
Depending on state regulations & the sympathy of the BoC manager you may not need a script for oxygen.
I have had an accountwith BoC for some years for welding gasses so when I found out about oxygen as the best abortive for CH I simply went and purchased it with no questions asked,as time went on the local manager aranged for a 20% discount on the price of the gas, I also gave her a copy of the letter to friends & work colegues explaining CH & how it effects sufferers.
Contact BoC as you have said I,m sure they will find a way.
Below is a link to a piece I wrote some years ago on getting oxygen in Aus without a script, hope it helps.


Posted in Untitled on 14 Oct, 2010 - 9:37 am

G'Day Semaj
Welcome to Clusterland, the link below should take you to the US CH site where the cluster quiz is located.
We did have another form of this quiz on this site but the owner of the US site popped a pooper valve over it & Roger had to remove it.

The quiz will give you a very good idea of if you are CH positive, but remember that there are other headache types that can mimick CH so a proper diagnosis is always esential.

When you have done the qiuz come back & let us know how you went.

Posted in Untitled on 08 Oct, 2010 - 6:11 pm

Hi Norwich
Keep the Red Bull in the fridge & at the first sign of a hit skull the Red Bull as quick as you can, it wont work if you drink it before going to sleep.

Posted in Untitled on 01 Oct, 2010 - 9:04 am

For those who have problems sleeping when lying down something that does work for a lot of people is to prop yourself up in bed with as many pillows you can muster; it's like sitting up comfrotably or as I did I got one of those lazy boy lounges & slept propped up in that, you dont get a full nights sleep but you at least get some ZZZZs.


Posted in good news! on 30 Sep, 2010 - 9:54 am

Happy Days


Posted in good news! on 30 Sep, 2010 - 9:52 am
Happy days

Posted in CH figures innacurate on 30 Sep, 2010 - 9:49 am

Your right Roger that 1 in 100,000 figure has been around for ever & a day.
With the speed of personal communications today mainly by the internet more people are becoming aware of the condition with more being diagnosed accurately, it's a pity that Medical publications donít keep up with the same speed, and if they did then perhaps more emphasis may be put on finding the cause & a cure.


Posted in Untitled on 30 Sep, 2010 - 8:55 am

Hi Roger
Never heard of Nodoz but have seen the V Energy, problem has been when in the shops I usually dont have my reading glasses with me so anything written on the can could be Swahili for all I know but will certianly check it out.

While on the subject of energy drinks I'd like to recognise the person who was the one to discover the benifit of an energy drink killing a low level hit.
The young lady Sanna is Swedish clusterhead, a couple of years ago while in cycle she was about to get hit & one of the maldy's that gets her when getting hit is a great thirst, she looked into the fridge for something to drink before bolting for the o2 & by coincidence the only drink there was Red Bull, she belted that down then raced of to the bedroom for the o2, by the time she had wacked on the mask the hit was subsiding rapidly & had gone completly within a couple of minutes.
The next time she felt a hit comming on she did the same with the same result & posted the experience on the UK, Swedish & US CH sites, it was from that experience that I went down the route of Taurine supplements & eventually the Magnesium/Calcium road.
One little experience has led to a great benifit for a lot of our people.


Posted in time effect on 29 Sep, 2010 - 7:08 pm

Hi Steve
I have an E size at home & a C fitted in a plastic toolbox that I cart around in the work ute & when I travel, the C size is only good for about 3 hits for me.

I start mine off at 15L/min & as it starts to subside & I'm hyperventerlated out I crank it down to around 12L/min.
I've found the best guide to what you need is to keep adjusting until the volume in the bag is about or just greater than what you can comfortably breath.

As for a method of knowing how long to stay on the o2 I count the number of breaths it takes to kill the hit, I then breath the same ammount of breaths as a taper off, that way I dont get the rebound hits that will inevitbly happen if you go off the gas to quick.

There is one other little trick that I & some others use when a cycle is at it's peak; we all know that Imigran tabs don't do a lot of good alone but if I take one while huffing the gas and at about the same time as I have killed the hit before I continue the taper off breathing I have been able to get around 6-8 hours of PF time before another one gets me, this is real helpfull at night time & allows me to get some very appreciated ZZZZs


Posted in time effect on 29 Sep, 2010 - 9:40 am

Untill I started using o2 I had no idea about time at all when getting hit; my wife was the one who kept a tag on time for me, all I knew was that I could get hit sometime in the afternoon & when I came out of it the sun had set (lost a few hours somewhere)
Now with the o2 I can be PF within 10 minutes but still need the recoup time to get over the exhaustation caused by the attack.


Posted in Untitled on 29 Sep, 2010 - 9:29 am

Hi Luke
It's a nice thought that maybe there could be a link, one can only hope.
It would be interesting to see if we have that same genetic fault but my guess is that as there are so few of us compared to the general head ache sufferers "I'm not putting Migrane down as a general headache in any way" but there is a far greater portion of the population that suffers other malady's than us & that's where the research & money goes unfortunately.

The Pesimistic Optomist

Posted in Untitled on 29 Sep, 2010 - 9:15 am

Greg said:
"3 days now, freeeeee. Must have finished. Thank God."

Hi Greg & Welcome.
Good to hear your getting a break.
As you can see I'm an Oxygen convert, done right & using the right equipment & getting onto the o2 at first sign I can abort anything above a KIP 7 within 10 minutes sometimes less.
For the lower level hits I use Red Bull.
Here's hoping this trips over for you.

Posted in Untitled on 03 Sep, 2010 - 9:25 am

Hi Barb
I have been on the Magnesium/Calcium trip since going chronic in October 2004.
I started the regime in April 2006 & hung in there regardless, it took some time along with trial & error to get to where I am now but it was worth the wait.
The link below should take you to a post on "Maybe one for the chronics".

The first 6 months of trailing this was the hardest where I was at times ready to give it away but gradually the daily hits were getting less in number & intensity; before I started I would experience anything from 1 - 5 hits a day & ranging in intensity from K3 - K8 & the occasional humdinger K10.

I have now been hit free for 771 days & enjoying life like it's going out of fashion, I do still shadow & feel the effects of having a wonky hypothalamus but hey life is good.

If you consider going down this road you will have to be patient, as you can see from my diary it will take time & most importantly you will need to take Calcium supplements as Magnesium is a Calcium blocker & you will end up with muscle & joint pain nearly as bad as CH, I use the Magnesium/Calcium combo & take them three times a day at meal times.
The times I have missed a dose I will start shadowing heavily within 4-6 hours so it's then into a M/C dose with a Zink & Taurine chaser & all's well again.
The Zink & Taurine appears to give the M/C a turbo boost, but a word of warning, Taurine acts as a booster for anything you are taking & this includes prescription drugs so you should as I did speak with your Doctor before going the Taurine way.


Posted in Untitled on 17 Aug, 2010 - 9:30 am

Here's a link to CPH; it's informative & I can see how dificult it would be to separate the 2 conditions, the symptoms are so similar.

Posted in Untitled on 10 Aug, 2010 - 6:32 pm

Iím a firm believer in the theory of vitamin or mineral deficiencies (Nuro transmitters) or the lack of them, since I ventured on the Magnesium/Calcium trail along with a slight diet change to include more oily fish to my intake I have had a pretty comfy ride especially over the last 2 years.

I am currently 747 days without a high cycle although I still shadow daily & still have to deal with the restless leg syndrome & insomnia but Iím one happy little black duck.


Below is a diary of the last 6 years

Went chronic 20/10/2004, 2 years of hell
Started taking Magnesium/Calcium 14/4/2006

2/10/2006 First big break since going chronic
20/06/2007 First day of getting hit again
261 Days since last hit

20/6/2007 High cycle started again
9/08/2007 High cycle ended
50 Days getting hit

9/08/2007 Low cycle started
1/06/2008 Low cycle ended
297 Days since last hit

1/06/2008 High cycle started again
24/07/2008 High cycle ended
53 Days getting hit

24/07/2008 Low cycle started
10/08/2010 todayís date
747 Days since last hit = 2 years & 12 days

Posted in Untitled on 06 Aug, 2010 - 10:15 am

Your right Heather it really is worth pushing for o2 & the misconception that only a Doctor can authorise the supply of medical oxygen puts a lot of people off especially if the said Doctor is not a believer in using o2 for our form of pain relief & most Docís would have never seen one of us in full throughs of an attack.

The link below will take you to a post I put recently in the Questions & Support area showing how I obtained o2 without a script.

There is also the sneaky way to get it simply by saying that you will be using it for oxygenation of water for transportation of live fish. iconicon

ďWhere to get Oxygen in AustraliaĒ.


Posted in Time for an upgrade on 04 Aug, 2010 - 9:49 am

The new forum looks good Roger, I had to go reset my short cut in favorites but other than that all's good.

Well Done

Posted in oxygen availability on 04 Aug, 2010 - 9:37 am

In addition to my post earlier I should have mentioned depending on state regulations that you can get Medical oxygen from BOC gasses simply by opening an account with them.
Before I got CH I had an account for welding gasses & beer gas, it takes about a week to 10 days for your account to come through but once you have the account there ar'nt any problems.
Locally here my BOC provider organised a 20% discount on Medical o2 for me which is a great help on the pocket; also depending on your personal medical insurance you may be able to claim a rebate, I am insured with HBF of WA who pay half the cost of the gas & rental up to a max of $600/year but I have a high cover.
A simple Email to your insurance firm asking the question is all it takes if they are on the ball, if it's not covered it's worth asking if by taking out another level of cover will it accomodate your oxygen requirements.

Cheers & PF times


Posted in What age did you get CH? on 01 Jul, 2010 - 8:45 am

Hi Alison
I really do hope that your lad doesnt have clusters but unfortunately it does happen; I know of only 2‚ 1 in the UK & 1 in the US.
I would be getting my GP to refer you to specialist help to explore other conditions before settling on CH just to be certain.

Kind Regards

Posted in Xmas 2010 on 22 Dec, 2009 - 9:01 am

Wishing you a warm one but by the weather reports it's going to be a rather white one for you.

Merry Christmas & Cheers to all.


Posted in Untitled on 30 Nov, 2009 - 9:25 am

Thanks for your replys and suggestions... i ve had another two in a row and i'm so tired of it.
What can stop a cycle or do you just run with it? Has anyone tried any allergy tablets?
O2 - Is that expensive‚ does it stop the cycle?
I want it stopped.............

Hi Al Welcome
Oxygen is not expensive & for most it works a treat if used properly‚ but it wont stop a cycle.

Here's a couple of links to some info; the first is a piece i wrote about 5 year ago but is still relevent‚ the second is to the US site & gives great detail on the correct use for best results.
Also have a look over to the left (o2 Treatment)there's a heap of info there as well.


Cheers Barry

Posted in Left or right sided on 16 Oct, 2009 - 10:48 am

I'm a Lefty‚righty‚righty.
Who keeps going in circles‚Lefty‚righty‚righty‚ Lefty‚righty‚righty‚Bugger back where I started.icon

Posted in jokes anyone? on 09 Oct, 2009 - 3:06 pm

A duck walks into a bar and orders a whisky.
The barman says wow a talking duck
There happens to be the ringmaster from a circus in the bar who walks up to the duck & says hey Iíve got a job for you in my circus.
The duck looks at him & says in a circus you need a brickie.

Posted in Untitled on 09 Sep, 2009 - 11:16 am

you know those things you use to get about a year ago‚

hope they are a distant memory


And Butch


il settle for a headache the hangover type‚ can deal with that know where they come from and have fun working one up.

Maybe I am just wierd but I havn't had a normal or hangover headache since I went chronic (6 years) not that I havn't tried to work on a hangover I certainly get the Ow I feel like sh*t but dont get the headache with it‚ maybe I should just be glad for small blessings.


Posted in Untitled on 08 Sep, 2009 - 6:22 pm

will you lot stop it
your giving me headache


headache what's that?icon

Posted in Untitled on 08 Sep, 2009 - 6:02 pm

Just to throw a spanner in the works; I didn't get them until just before I turned 50‚ now 60 & chronic go figure.icon


Posted in Latitude Correlation th CH on 06 Sep, 2009 - 10:54 am

This has been discussed before on other boards with a mixed responce.
As for me; I have lived above the 26th parallel for the last 30 years & the best 2 week period I've had is when I went to Melbourne‚no shadows no hint of CH at all‚ Pure bliss.

Posted in Untitled on 27 Aug, 2009 - 1:50 pm

G'Day Sedz
Welcome to the nut hut.

My Nuro is Dr Sasson Gubbay‚ he in churchhill Ave Subi.
Youll have to get a referal from your GP.

Some people don't like his approach but I found him OK.

Her's some background on him.


Posted in Untitled on 29 Jun, 2009 - 1:17 pm

Hi Loula

Try this link:

Professor Gubbay is my Nuro & is well versed in CH.

Good Luck

Posted in Untitled on 29 Jun, 2009 - 1:12 pm

Hi Frosty

A simple trick that works for some of us is if you can get your Doc/Nuro to prescribe Imigran.

While you are on the o2 & the scale is decreasing‚ take 1 Imigran & continue with the o2 till you have killed the hit; itís not known why this works but I have been able to ward off another hit for up to 8 hours doing this‚ taken before or after a hit this wont work it will only work while you are still on the o2.


Posted in Untitled on 29 Jun, 2009 - 11:33 am

This may help in your search for an answer

Firstly let me say Iím no Medico but with the research I have done into the workings of the hypothalamus itís somewhat obvious that if the hypothalamus is faulty as is the case with CH then other parts of the body that rely on it are affected.

My take on this & in discussion with other sufferers who have done a lot of searching along this line‚ if the right messages arenít being sent to the other organs/body parts then they in turn cant function properly‚ if the message doesnít get to or isnít sent to the peneal gland then it cant produce the melatonin that that is required to induce sleep.

It has to be remembered that CH is only one of a myriad of symptoms related to a faulty hypothalamus; some of these are Tourette's (Ticís)‚ restless leg syndrome‚ exploding head syndrome & the list goes on.

Have a read through the links below & come to your own conclusion.

The pineal gland works in harmony with the hypothalamus gland‚ directing the body's thirst‚ hunger‚ sexual desire and the biological clock that determines our aging process. It is the "third eye" of the brain‚ responsible for telling the brain when it is day or night. It also controls the body's hormonal systems‚ sleep-wake cycle‚ and other so-called "circadian" (24-hour) body rhythms. It is in essence‚ the body's internal clock.
Full article here:

The pineal gland (also called the pineal body‚ epiphysis cerebri‚ epiphysis or the "third eye") is a small endocrine gland in the vertebrate brain. It produces melatonin‚ a hormone that affects the modulation of wake/sleep patterns and photoperiodic (seasonal) functions.[1][2] It is shaped like a tiny pine cone (hence its name)‚ and is located near to the center of the brain‚ between the two hemispheres‚ tucked in a groove where the two rounded thalamic bodies join. Unlike much of the rest of the brain‚ the pineal gland is not isolated from the body by the blood-brain barrier system.[

An interesting article

A footnote: Due to a faulty hypothalamus CH isnít the only symptom I have‚ the others are RLS‚EHS & insomnia hence the length of research I have gone into to get a better grasp on how I can manage these.


Posted in oxygen availability on 11 May, 2009 - 6:21 pm

Hi Joe
Welcome aboardā below are some links on how to get oxygen & some hints on its use.

Note: some of the regulators may have been updated since I first wrote the Mushys piece but the basics are still the same.


Posted in Untitled on 03 Feb, 2009 - 7:59 am

Hi Kaarin & Welcome
Sad to have to meet this way but at least your among friends now.
Theres a heap of info here to help out & there's always some one around to answer a question or at least try.
Let us know what your using to help deal with your CH‚ anything we know you should know & visa versa.
I gotta go bush till friday but will check back then‚ by the way I am an expat crow eater but been in the west since 1968‚ used to live on the Grange Road Seaton.


Posted in Untitled on 28 Jan, 2009 - 11:52 am

GíDay Doc Pringle welcome to the Aussie nut hut.

Donít take to heart whatís said about doctors here; most doctors are general practitioners who have to know a lot about general medical conditions & CH sure as hell aint a general condition.
My good doctor only diagnosed me after she saw me going through a hit & armed with the info she had read from the US CH site recognised what it was & she only went there looking for a better way to treat her husband & children who suffer badly with migraines‚ now that your off the hook lets see if we can help you get through the day.

I am a great supporter of oxygen (o2)‚ if used correctly it is very effective in most cases; one thing that can also be very good is to take an Imigran tab while using the o2‚ not before & not after it has to be while your on the o2‚ I have found that I can get 6-8 hours break by doing this‚ it works very well for me & others I know‚ donít ask me how or why it work cos I simply donít know.

Read‚ read & read again the info thatís here‚ it a valuable source & will arm you for better control.


Posted in Untitled on 24 Jan, 2009 - 2:21 pm

Hi Cluster 13 & welcome to Oz clusterville

Wayne could be right about the $1000 medicare thing & it would be interesting to know for sure; the TAX office will reduce your tax payable at the end of the year by a percentage if you have spent more than $1000 over that financial year on prescription medicines but you have to show reciepts to prove it & its only a % not the full ammount.

Unlike the UK where you pay your tax as you earn like us you don't have to do a tax return whereas we have to (annual pain in the butt)If you have a lot of work expences & other claimables then you can reduce your tax payable.

I have private medical cover & I get my o2 subsidised by that cover to the tune of 50% of the bottle rental & gas cost up to $600 per year.


Posted in Detox? on 24 Jan, 2009 - 2:02 pm

I have heard of this before on the US CH site‚ it came from someone in Europe but he didnt hang around for long.

Hell I'd stand on me head in a fresh cow pat sipping sarsbarella through a straw by nose if it cured my CH.

Keep us informed Peter.


Posted in Untitled on 24 Jan, 2009 - 1:46 pm

Hi Leesy
Being chronic can be variable‚ Iím chronic to the point that I have high & low cycles.
The accepted definition of chronic is to not being able to have a pain free period of better than a year; my best period so far has been 297 days & currently 184 days. (See the diary below)

The low cycles is when Iím not getting the clusters but still shadow continuously these will vary from very low to & hardly noticeable to around 2.5 to 3 on the KIP scale‚ so far since going chronic 4 years ago I havenít had a day where I havenít shadowed but because I live with it all the time I donít notice it until the heavy shadow occurs.
Because my hypothalamus had a real dummy spit I get effected by other symptoms being restless leg syndrome‚ exploding head syndrome & bouts of insomnia whether Iím in high or low cycles & wonít have a week without getting effected by at least one of them.

The high cycles are the same as being episodic in that they will start at one every evening for 7-10 days & will increase in intensity & number until I reach a peak for 7-10 days & will then decrease until that bout goes away.
The intensity of the hits over the last 2 high cycles have been no greater than a KIP 8‚ during the peak of the cycle could have up to 8 a night but killed very quickly with o2‚ during the last high I discovered that if I took an Imegran tab while huffing on the o2 I could get a 6-8 hour break which made getting through the night bearable.
Sleep is a constant problem but through necessity I have learned to rest the body & switch the mind off as best I can‚ this gets me through & I can go a week without sleep & not be affected other than being a little lethargic.

I believe that being chronic is easier to deal with as you are constantly aware that a high cycle could start at any time & you never let your guard down.

Sorry for the long post but with this condition a simple question doesn't always come with a simple answer.

Turned chronic 24/11/2004
Day of last hit 2/10/2006 First big break
Today's date 20/06/2007 First day of getting hit again
261 = Days since last hit

Day of first hit20/06/2007 High cycle started again
Today's date 9/08/2007 High cycle ended
50 = Days getting hit

Day of last hit 9/08/2007 Low cycle started
Today's date 1/06/2008 Low cycle ended
297 = Days since last hit

Day of first hit1/06/2008 High cycle started again
Today's date 24/07/2008 High cycle ended
53 = Days getting hit

Day of last hit 24/07/2008 Low cycle started
Today's date Low cycle ended
184 = Days since last hit

Posted in Untitled on 18 Jan, 2009 - 12:40 pm

Hi Vince
Welcome aboard‚ If your new GP wont give you oxygen you can get it yourself‚ below are some links on how to get oxygen & some hints on its use.


Posted in Untitled on 06 Jan, 2009 - 11:16 am

Hi all

Here's a couple of pics of a home made humidifier "bubbler"

The little yellow thing is a fish tank aerator stone it dissipates the air in a finer form than just the bubbles coming from the end of the o2 hose‚ the cooldrink bottle is a 600ml one‚ any smaller & you wont get sufficient air gap at the top‚ fill the water to about one quarter of the bottle.
If you have a problem with sensitive teeth use warm water instead of cold‚ about the same temp as your body heat.
Now I got this to work I'm going bush till Thursday‚ see yas then


Posted in Untitled on 30 Dec, 2008 - 8:26 am

Hi Jade & Welcome

I have heard of ginger being used before mainly by grating raw ginger but I dont know what its mixed with to make it palatable.

When in high cycle I switch from drinking stout to ginger beer‚ don't know if it does me any good but at least I can sit & be sociable.


Posted in Untitled on 29 Dec, 2008 - 4:40 pm

Hi Kate
Good to see you back.
Sound like things are changing‚ hopefully for the better.


Posted in Untitled on 25 Dec, 2008 - 5:28 pm

Melatonin is a great tip‚ the phamacist said you need a prescription for that these days so we'll ask the doc about it.
I got my Melotonin from the local pharmacy; the brand I got is BIOGLAN from a NSW company & no script needed‚it may be worth trying a health food shop‚ it's used comonly for people suffering jet lag.

what is a low cycle like? less frequent‚ less severe‚ or both?
For me a low cycle is no hit greater than a normal niggle headache and wont last for long at all‚ I do shadow to varying degrees but you get used to that‚ shadowing is that dull feeling that at anytime a hit could happen but doesn't.

Hopefully i can get john on here soon‚ again‚ thanks so so much for the words of wisdom everyone smile


Posted in Untitled on 23 Dec, 2008 - 4:56 pm

Hi Hefty

Welcome to the Aussie nut hut & thanks for being a great supporter.
Supporters really Rock
I am chronic & have been since Dec 2004‚ I had one 13 week bout in 1999 then a five year break before it came back.
I have done some cutting & pasting to try & answer as many of your questions as possible so here we go.

Firstly being chronic is described as not having a pain free period for 365 days & your hubby certainly fits the bill for that.

As for finding a way of controlling the condition there are meds that are available for that but they appear to have some side effects‚ after hearing about Red bull aborting low level hits & trying it myself I decided to give Taurine in tablet form a trial & had some minor success but after doing a lot of research on it & discussing it with my Doc we came to the conclusion that Taurine was not going to be effective by itself so I opted for a mix of Magnesium/calcium supplements & Taurine‚ the magnesium is a neurotransmitter but will also block natural calcium intake thatís the reason for the mix there‚ Taurine in itself is has some beneficial aspects but its main purpose in this mix is that its an accelerant IE it make the other supplement work better & faster. (Itís worth you reading up on Taurine just to get a handle on how it works & why)

I started taking the Taurine in April 2006 but didnít include the magnesium/calcium until around June 2006; I started to see some relief but didnít get a decent break until October2006 when I went into a low cycle for 261 days‚ since then I have had high of 50 days‚ a low of 297 days high of 53 days & am currently in a low of 152 days to date.

Given what I have said above there are no guarantees that although this is working for me it may not work for everyone but its inexpensive & worth a try if he isnít having any luck with other prevents‚ he should talk this over with his Doc if he is on any other medication as there may be some conflicts or side effect that may occur.

We feel pretty isolated being at home a lot just barely coping. and he's awake so many nights in the week.

Isolation for all of us is a shit but for chronics it really puts you out of circulation for a lengthy period if you canít find a way of controlling the situation.

A lot of people have had success with Melatonin supplements to get sleep & some have reported that it help as a prevent.
What is Melatonin; itís a chemical produced in the pineal gland & is the natural sleeping pill‚ due to the hypothalamus being in the shitty state it is and not sending the message to the pineal gland to produce the melatonin required & therefore not many ZZZZZs
Another way of getting sleep is go buy him one of those lilo type chairs cut the legs off of it and use it in the bed as a prop so that he is partially sitting up this works in the same way as when you have a sprained ankle in that it slows down the blood flow to the effected area; the reason for clusters is that the blood vessels in the head can swell to 20 time their normal size and thatís what causes the pain‚ by raising the head you are reducing the flow of blood and therefore reducing the risk of getting one while trying to sleep.

We were quite surprised to see energy drinks help other people - we discovered it really early on by accident - doesn't abort but sometimes seems to help if he's borderline‚ We also sometimes have found vegemite does something‚ so I wondered if it might be the b vitamins‚ or otherwise the salts? Any ideas?

Energy drinks can be very effective for low level hits; for me anything up to a KIP 6-7 anything above that its oxygen‚ itís coincidental that these things are discovered accidentally‚ I first heard of it back in 2006 when a Finnish girl who is a member of the US based cluster site reported having killed a KIP 5 with a can of Red Bull simply because she gets really thirsty when first getting hit & the can of RB was the first thing she grabbed‚ I keep 2 cans in the bottom draw of my desk at work‚ 2 in the work car fridge‚ 2 in the smoko room fridge & the home fridge looks like an advert for RB.
The real trick with energy drinks is they need to be really cold and chugged down as quick as possible; Iíve aborted quite a few that way & havenít needed the oxygen.

Oxygen is even more exciting cos of course coffee only does a bit of help‚ not abortive. hoping hoping hoping it works.

Oxygen really rocks if you get it right; I have written 2 or 3 posts on oxygen use‚ where to get it from & how to use it‚ if you look in the meds board of this site you should find them there & thereís all the info you will need.
Hereís some links:

Smoke and various smells are triggers for john too (including tiger balm unfortunately!)‚ so is vibrations like teethbrushing‚ buses. Stress isn't exactly a trigger but is just associated with more pain and frequency generlly i think.
Triggers are wide and varied for all of us & there is no typical trend‚ I smoke drink white wine‚ stout & whiskey but if I drink beer I will shadow severely within 20 minutes‚ I donít drink at all during high cycles but when I believe I am coming out of the cycle the real test is to have a stout‚ one stout & no head ache means cycle over.

Yes the fatigue‚ it's mental as well as physical isn't it. Can't imagine how you 'tough it out' as an employee - do you tell your boss‚ or try to hide it?

This is a dilemma I think we all have and after having had 5 different supervisors in the last four years I came to the conclusion that the best approach is to be honest BUT donít simply say you get severe headaches; everyone gets headaches and the non sufferer simply cant relate our condition to anything more than a severe hangover‚ my approach is to say that I suffer from a rare neurological condition and one of the effects of this condition is severe head pain‚ this approach does away with the usual response of cant you take a pill and have a little lay down.

I wonít apologise for the length of this post as my belief is that the more I/we know about our condition the better we are able to control it instead of it controlling us.

Cheers all & have a great PF Christmas

Posted in Untitled on 01 Dec, 2008 - 12:29 pm

Hi Bazz & Welcome.

Iíve been chronic since late 2004; prior to that I only had one cycle 5 years earlier‚got CH late in life at 49 now 59.

I never went the so called traditional meds preferring Oxygen to abort & then started experimenting with Taurine‚ Magnesium & Calcium supplements & have had some reasonably good success.
Prior to starting the supplements the biggest break I would have between hits would be no more than a couple of days.

Exert from my CH diary:
April 14‚ 2006 Started Taurine & Magnesium supplements.

Low cycle October 2‚ 2006 till June 20‚ 2007 Start of the biggest PF break since going chronic‚ this lasted 261 days.

High cycle lasted from June 20‚ 2007 to August 9‚ 2007‚ 50 days.

Low cycle lasted from August 9‚ 2007 to June1 2008‚ 297 days.

High cycle lasted from June1 2008 to July 24 2008‚ 53 days.

Current low cycle July 24 2008 to this date Dec 1 2008‚ 130days with fingers crossed.
I do still shadow to varying degrees but I can live with that.
One thing you have to add to the mix is Calcium as the Magnesium acts as a calcium blocker & you will end up with joint & mustle pain if you dont.

Maybe you should try this regime after talking it over with his GP‚ thereís nothing to loose.


Posted in on 17 Nov, 2008 - 12:00 pm

Hi Gus

Welcome aboard‚ below are some links on how to get oxygen & some hints on its use.


Posted in Untitled on 15 Nov, 2008 - 10:01 pm

Hi Steven
I have a C size that I carry with me in the work vehicle & when travelling‚ I can only gey about 3 hits out of that‚ but its handy if the Red Bull wont work.

For home I have an E bottle that will last for about 7 - 10 days when in high cycle.

If I'm looking like runnung out with the E I will get another in just in case & have never been charged rental if I return the empty ASAP.

Depending on your health cover there can be rebates available‚ my private health fund will pay 50% of my rental & refill costs up to $600/year; I already owned my own reg for the E & bought the reg for the C but didn't know at the time that the health fund would have paid 50% for that as well had I not thrown the reciept away & my local BOC arranged a 20% discount for me (20% discount may not be available to everyone‚ it may just be that I have dealt with the local people for over 25 years) but anything is worth a try.

It may be worth your while taking a copy of the letter explaining what Clusterheadaches are all about to your local supplier which is what I did & that's when I got the 20%.

It may seem that forking out a lot of money for gear that we need can't be justified but in all reality CH aint gonna go away in the foreseable future so in my opinion it's a good investment.

Hope this helps out

Posted in Untitled on 15 Oct, 2008 - 1:50 pm

Hi Wayne
Yep a 15 litre reg will do the job‚ unless you have a huge lung capacity you wouldnt be able to suck in anymore than that but make sure you get a non rebreather mask.


Posted in Untitled on 15 Oct, 2008 - 1:44 pm

Gíday Patrick

Welcome aboard‚ obviously you have done some research into our wondrous condition & thatís a good thing‚ the more you know about it the better you can manage it.

When people here question your symptoms they are not accusing you of anything they are only trying to help & thatís exactly what this board is about help & support.
You probably know that there are more to headaches than Clusters‚ migraines & hangovers there are in the vicinity of around 140 know headache types & itís important to be sure that you are being treated correctly.

As you would be aware with your research that Clusters are caused by a wonky hypothalamus‚ but Clusters are only one symptom of a wonky hypo & depending on how effected the hypo is then so are the symptoms & or the other conditions emanating from that.

You say in your reply that ďI wish my clusters were more like yours... they sound like a walk in the park compared to what I get.Ē And ďIt just goes to show that different people show different symptomsĒ
From my personal experience‚ I am chronic & live with this on a daily basis along with a couple of other conditions caused by my wonky hypo‚ if you feel that other people are having a walk in the park try looking up Exploding Head Syndrome‚ Restless Leg Syndrome & constant insomnia‚ I cope with CH‚EHS‚RLS & average around 4 hours sleep a night but donít get me wrong Iím not having a whinge here Iím only expanding on your statement of different people & different symptoms & yes you most certainly are right we all get effected differently with the only consistency being we hurt bad.

Take Kateís advice & check out the oxygen itís a fair dinkum saviour certainly for me & a lot of others & doesnít have the drawbacks of the drugs.


Posted in Untitled on 06 Oct, 2008 - 12:02 pm

Gíday Wayne

Welders oxygen in oz comes from the same procedure as medical oxygen I have used it numerous time when I ran out of med oxy.

Buy your regulator from BOC Gasses‚ see if you can score a mask from the emergency dept at the hospital thatís where I get mine from just explain you condition.

Iím going bush for the rest of the week & will check back in when I get back.

Take a look at this link: some good info.

Some info on getting Oxy in Oz.


Posted in Untitled on 28 Aug, 2008 - 6:21 pm

Hi Everyone‚

I know it sounds stupid but I am glad I am not alone in my pain‚ I just wish no one got these things. I was diagnosed with migraines but after reading all the info amd doing the quizes I am going to see my doc armed with the new information. I was particularly interested in the Oxygen treatment. I have tried Imigraine and many of the other drugs on the list with no results. So I have printed off the info and go to the doc armed with it and for once some hope.

The only way the medical profession will learn more about this condition is by listening to us‚ the more info you take with you the better‚ it shows them your not sitting around waiting for them to extract thier didget‚ your going out there & looking for the answers.

Best of luck & Oxygen ROCKS

Posted in Untitled on 28 Aug, 2008 - 6:11 pm

Before I was diognised properly my GP told me to take 8 Asprin imediately a CH started & if that didnt work I had to follow up with 2 codral forte‚ I soon found out that I may as well have eaten a packet of jelly beans for all the good over the counter meds would do.


Posted in Untitled on 01 Aug, 2008 - 2:11 pm

Hi Blondie & welcome
Below this post is a questionnaire I pulled from the US site & it gives a very good guide as to whether you have clusters or not but only a Nuro who specializes in headaches can confirm a diagnosis.
You donít say in your post if you have seen a Nuro yet but if you havenít then I suggest you ask your local GP to refer you‚ the Nuro I saw was Prof Sasson Gubay who lectures at UWA & has a practice in Churchill Rd Subiaco & specializes in head pain‚ he gives the impression of a grumpy old bloke but heís not heís just very thorough.
Hereís the quiz & Cheers‚ Barry from Karratha
There have been so many questions on the message board from people asking if the headaches they suffer from are clusters or not I decided to build this quiz.
It will give you a quick‚ generic idea whether you may suffer from cluster headaches or not.
#1) Do your headaches normally last LESS THAN 15 minutes?
Yes No

#2) Do your headaches normally last MORE THAN 4 hours?
Yes No

#3) Do your headaches normally switch sides from day to day or during a headache?
Yes No

#4) When you have a headache‚ do you normally seek a quiet‚ dark place?
Yes No

#5) When you have a headache‚ do you normally want to be around other people?
Yes No

#6) When you have a headache‚ can you normally lay down and be motionless?
Yes No

#7) When you have a headache‚ can you normally go to sleep to make it go away?
Yes No

#8) When you have a headache‚ do you normally experience nausea?
Yes No

#9) Are your headaches always on the same side of your head?
Yes No

#10) Do your headaches normally wake you up from a sound sleep?
Yes No

#11) Do your headaches normally occur at the same time of the year and same times each day?
Yes No
#12) Do you normally experience a stuffy nostril on the same side of the face as the pain?
Yes No
#13) Do you normally experience a "droopy" eyelid on the same side of the face as the pain?
Yes No

#14) Do you normally go from totally pain free to totally debilitated in 5-10 minutes?
Yes No

#15) Do you normally go from totally debilitated to totally pain free in 5-10 minutes?
Yes No

#16) When you have a headache‚ do you walk‚ pace‚ bash your head‚ thrash‚ scream?
Yes No

Questions 1-8 are not normally associated with cluster headaches. If you answered "Yes" to a few of these questions‚ you probably don't suffer from cluster headaches. Please do your research and see a doctor!
Questions 9-16 are normally associated with cluster headaches. If you answered "Yes" to most of these questions‚ you may suffer from cluster headaches. Please do your research and see a doctor!

No matter what type of headache you have‚ the most important thing is that you see a health care professional for treatment. Self-diagnoses of head pain can be life threatening!
If you would like to take another quiz something like this one‚ there is a very good 30 question quiz located at the Headache Care website. It asks different questions about all different types of headaches and may help you try and figure out what exactly it is that is causing your pain.
Please read all of the information on this site as you can about cluster headaches. There are many good links on the links page to all kinds of other headache sites and pages on the net where you can research your headaches. Please inform yourself about your headaches as much as possible! Knowledge is power!

Posted in Untitled on 01 Aug, 2008 - 12:26 pm

Hi Kate
When I say I can kill a hit in 2-5 minutes I am talking about now when I'm not getting anything above a KIP 5 & I agree that relaxation is a key contributor to aborting quickly‚ it lowers your pulse rate & therfor decreases the blood flow to the effected area.

Other factors could be getting on to the gas as soon as I feel it coming on;I have a pretty good arsonal in that I have an E bottle at home & a C bottle I carry around in my work car along with cans of Red Bull in the car fridge so I'm no more than 30 seconds away from being able to hit the gas "Time is a real factor".
It could also be the effects of the Taurine‚ Magnesium/calcium regime I am on (see my post on the meds page)


Posted in Untitled on 01 Aug, 2008 - 12:05 pm

Iím now seriously convinced that the Taurine‚ Magnesium/calcium regime I have been following since April 2006 is working.

Ill try not to make this a lengthy post but for the benefit of the new comers hereís the history; I got my first set of clusters (12 weeks) back in late 1999 and then had a five year break until late 2004 (13 weeks) & they quite simply didnít go away‚ I would get hit any time of the day or night with no rhyme or reason to severity‚ intensity or regularity.

When Sanna from the US board reported that Red Bull with its high level of Taurine & Caffeine could kill a low level hit I thought it may be worth giving Taurine supplements a try to see if they would reduce any part of the cluster monster.

I started off with the recommended dosage on the pack:
Taurine 500mg tabs 3 times a day with meals.
Magnesium/calcium 500mg tabs 3 times a day with meals.
I was initially only taking the Taurine & it wasnít until I added the magnesium that things really started to happen; the one mistake I did make was that the magnesium will block the intake of calcium & I ended up with some pretty bad muscle & joint soreness due to the lack of calcium‚ once I talked this over with my MD I went down the line of the mix Magnesium/calcium in one tablet & used the chelated form as these are ingested better than the non chelated form.
Here in Aust we can purchase both products over the counter from any health food supplement store where there is a practicing naturopath

Rather than go into a lengthy literary montage below is a shortened version of my CH diary.

I started the regime on April 14 2006 & had some minor success but didnít get a decent break until October 2‚ 2006.
I then had a 261 day break with no hits at all & only minor shadows.

Went into a high cycle again June 20‚ 2007 for 50 days but never got a hit above KIP 6 with most in the range of 4-5 & would go for up to 3 days without a hit.

My next low cycle started on August 9‚ 2007 & lasted for 297 days till June 1‚ 2008 & once again only minor shadowing throughout.

Iím just finnishing a high cycle that started on June 1‚ 2008 & to date havenít got a hit greater than Kip 4.

The interesting thing is that this time around unlike the previous cycles I havenít stopped drinking my beloved stout or my evening shard‚ call me an idiot if you like but I really wanted to push the bar as far & as hard as I could to see what would happen & I guess the worst has been that this cycle lasted 53 days‚ 3 more than last time.

As I understand it I am the only one that has stuck to this regime for this length of time & it may be that this is not the result that most would be looking for but what I would really like to see is another chronic take this up to prove or disprove my results.


Posted in Untitled on 30 Jun, 2008 - 9:43 am

Hi Steve
Welcome to clusterville.

Hereís a couple of links to info on oxygen‚ both on this site & should give you all the info you need.

The 2 basic important thingís to remember when using oxygen is; get onto it as soon as you feel one coming on‚ donít wait around to see how big it will get‚ secondly is how much you need‚ what I do after a lot of trial & error is count the number of breaths you inhale before the HA is gone& then keep inhaling the same amount of breaths after itís gone‚ if you donít follow this you are very likely to get a rebound HA that is then quite likely not going to be killed with oxy.
When I say the HA is goneI mean really gone; if you have any tingle of thought at all that it hasnít completely gone‚ keep inhaling until you are totally sure that it has gone & then do the follow up breaths‚ I think this is the probable cause for people not getting complete relief from oxy. DONíT BE IMPATIENT

I can kill a full blown hit within 2 Ė 5 minutes‚ thatís one hell of a lot better than battling for up to an hour & saves the repair bills from banging your head on the wall.


Posted in Untitled on 12 Jun, 2008 - 12:11 pm

Hi David

Below are a couple of picís showing the bag‚ it is the standard non-rebreather mask you get from the ER. The bag simply detaches from the mask.

Please Note: You should remove the strap from the mask just in case you fall asleep to prevent the possibility of oxygen coma caused by over use of oxygen.

This is the link to the whole post.


Posted in Untitled on 09 Jun, 2008 - 6:53 pm

Hi Kerry

Take a look at the link below‚ thereís a lot of info there.
A couple of important things to remember when using oxygen; get on to it as soon as you feel a hit coming on‚ flow rate at least 12 litres per minute & you must stay on it for the same amount of time after you have killed the hit as it took to kill it‚ now that may not make a lot of sense but hereís the deal: count the amount of breaths it takes to kill the hit then stay on the oxygen for the same amount of breaths this will stop rebound headaches that you probably wont be able to get rid of.
I can usually abort a hit with about 80 to 100 breaths but I breathe straight from the bag as I have a beard & canít get a proper seal with the mask.


Posted in Untitled on 02 Jun, 2008 - 10:08 am

Hi Peter
Interesting experience & makes sense‚ would be good to know if it has happened to some'one else.
Glad your getting some relief now.

Check your PM's


Posted in Untitled on 16 May, 2008 - 9:38 am

G'day Geoff‚ Welcome
Another one from W.A.‚ the beast doesn't care who‚ where‚ why or how but we all know what your going through.
What do you use as abortives or preventatives‚ I'm an oxygen user when getting hit & can kill a biggie in minutes.


Posted in Untitled on 08 May, 2008 - 6:10 pm

About $12 each here in Karratha but good value when you get that much needed sleep.

Posted in Untitled on 05 May, 2008 - 5:34 pm

Sorry to hear your hurtin.
Something that may be worth a try; on my last high cycle I found that if I took an 50mg Imigran tablet left over from before while aborting the current hit with o2 I could get 6 -8 hours before I would get the next hit & would actually be able to get some sleep in between.
Anything is worth a try.


Posted in Untitled on 02 Apr, 2008 - 8:08 pm

Hi David Welcome aboard.
I'm an ex pat Croweater‚ been in WA since 1968.

I see from your other posts that you dont have a lot of luck with oxygen; for me it works a treat if I get on to it straight away as soon as I feel the hit comming on.
For the lower level hits Red Bull cold as can be‚ belted down as quick as you can do it is also a good traveler.
A trick for helping prevent night time hits is to sleep propped up with as many pillows as you can find; I use a modified sun loung with the legs cut off on the bed and with pillows under my head.
A little trick I worked out last high cycle is once you have killed the hit with the oxygen I take an Imigran tablet & it keeps the next hit at bay for up to 8 hours & is usefull for night time.
I'm chronic so living with this is as normal as going to work every day.


Posted in Untitled on 10 Mar, 2008 - 11:11 pm

Kewl‚ thanks for posting that‚ that will prolly be helpful to a lotta peopleicon

Oxygen is not only Kewl "IT ROCKS"; when used to it's best it's very effective & can kill a cluster within minutes.

When I get some more time I will dig up the pieces I have written on it's use & how to get the best effect from it.

I work away from home a lot & don't have access to the net while away but will look into what I have got when I get back this weekend.

PF days to all

Posted in Untitled on 10 Mar, 2008 - 10:58 am

A little something I picked up from another site‚ may help clarify some things.

Oxygen Therapy Q&As

The following questions and answers were extracted from briefings on Oxygen Therapy developed by Michael Berger and Pete Batcheller and presented to neurologists and other medical professionals treating cluster headache sufferers.

The following is provided for information purposes only.


Do not attempt any of the following treatments without direct supervision of your physician or neurologist.


What causes cluster headache attacks?

Medical science has yet to identify the cause of cluster headaches or the triggering mechanism that starts each attack and keeps it going. Neurologists and researchers have found that the hypothalamus plays a role and that some kind of vasoactive triggering mechanism causes the arteries and capillaries in and around the trigeminal nerve to dilate. Why the pain of a cluster headache attack happens mostly on one side of the head and not both remains a mystery. Some researchers theorize the initial pain of a cluster headache attack may come from sensory nerves lining the arteries and capillaries nearest the trigeminal nerve and somehow spread to the branch of the trigeminal nerve signaling severe pain in the areas around and above the eye‚ sinuses‚ and jaw.

The three treatment strategies for both episodic and chronic sufferers include medications that act as preventatives‚ abortives‚ and a transition strategy of medications used for short periods of time while waiting for the preventatives to start working. As cluster headache sufferers are all wired differently‚ no single medication or combination of medications produces consistent results. When the efficacy of the preventative and abortive medications are unable to bring relief after several combinations have been tried‚ the chronic cluster headache sufferer is considered intractable.

Why use oxygen therapy as an abortive for cluster headache attacks?

A combination of oxygen therapy and imitrex is the most commonly prescribed abortive strategy. Of these two treatments‚ oxygen has proven to be the safest‚ most cost effective‚ and least invasive abortive treatment for most people suffering from cluster headache attacks. Moreover‚ the side effects associated with oxygen therapy are low to non-existent when compared to other prescribed cluster headache medications in use today.

What flow rates are used during oxygen therapy for cluster headaches?

Most doctors and neurologist currently prescribe medical oxygen at a rate of 7 to 10 liters per minute. However‚ a growing number of neurologists familiar with study results published by Dr. Todd Rozen‚ MD‚ in 2004‚ have started to prescribe oxygen therapy at 12 to 15 liters per minute. Dr. Rozen is a leading neurologist who specializes in cluster headaches at the Michigan Headache & Neurology Institute (MHNI) in Ann Arbor‚ Michigan. He found that some cluster headache suffers that did not respond to oxygen therapy at 12 liters per minute were able to abort or shorten the length of their cluster headache attack by breathing 100% oxygen at a flow rate 15 liters per minute. He further concluded that even with intractable cluster headache sufferers‚ neurologists should try a treatment strategy that includes oxygen therapy at a flow rate of 15 liters per minute prior to trying more invasive treatments.

How does oxygen therapy work as a cluster headache abortive?

Oxygen therapy works as a cluster headache abortive because it elevates the amount of oxygen absorbed by hemoglobin in the red blood cells above normal levels as they pass through the lungs. The term used in respiratory physiology for this temporary condition is called hyperoxia‚ and hyperoxia has been know for many years to act as a vasoconstrictor. Like imitrex‚ hyperoxia causes the muscles lining the arteries and capillaries to constrict reducing the diameter of these blood vessels. The level of constriction is more pronounced in the cerebrovascular system than elsewhere in the body.

As cluster headache pain is associated with cerebrovascular dilation in and around the trigeminal nerve‚ any vasoactive agent that constricts these blood vessels back to a normal or smaller diameter appears to be part of the mechanism that aborts the pain of a cluster headache attack. Preliminary studies have shown that the higher the oxygen therapy oxygen flow rate‚ the lower the time required to abort the pain of a cluster headache attack. These same studies have also clearly demonstrated that the higher the level of pain during a cluster headache attack; the longer it takes to abort the attack with oxygen therapy. For example‚ a cluster headache at Kip-6 may take as little as 6 to 10 minutes to abort using an oxygen flow rate of 15 liters per minute‚ but an attack at Kip-8 or Kip-9 could take 30 minutes or much longer at the same oxygen flow rate.

What is hyperventilation?

Hyperventilation is a physiology term describing the process of ventilating the lungs at higher than normal respiration rates. Simply put‚ breathing much faster than normal.

What is the normal respiration rate?

At rest‚ the normal adult respiration rate is 15 to 18 inhale-exhale cycles per minute. With a tidal volume of a half-liter‚ that works out to a flow rate of 7 to 9 liters of air per minute moving in and out of the lungs. During hyperventilation‚ the respiration rate is much higher than normal and so is the tidal volume.

At what respiration rate does hyperventilation start?

Although the onset of hyperventilation varies due to body size‚ age‚ and other factors such as smoking‚ a flow rate of 24 liters per minute is a good low average for people to start feeling the effects of hyperventilation. This works out to a hyperventilation rate of 24 inhale and exhale cycles per minute with an average tidal flow of one liter.

What happens to our body when we hyperventilate?

The primary effect of hyperventilation is expelling or casting off CO2 faster than the body produces it. Most of us are familiar with the symptoms of hyperventilation including dizziness‚ a tingling of the lips and extremities‚ and possible visual disturbances. All these symptoms clear rapidly in less than a minute when you stop hyperventilating. Hyperventilation drives the body into a voluntary condition called respiratory alkalosis. As hyperventilation reduces CO2 in the bloodstream and as CO2 dissolved in the blood becomes a weak acid‚ lowering the CO2 shifts the pH upward from slightly acidic to slightly alkaline. Another name for this condition is called hypocapnia meaning lower than normal levels of CO2 in bloodstream. Hypocapnia is also a vasoconstrictor.

What happens when we hyperventilate on 100% oxygen?

Three important things happen that are particularly beneficial for cluster headache sufferers when they hyperventilate on 100% oxygen. (1) The oxygen levels in the arterial bloodstream rises to 100% saturation (hyperoxoia). (2) The CO2 level in the bloodstream falls (hypocapnia). Remember‚ both hyperoxia and hypocapnia are vasoconstrictors. And (3)‚ an elevated pH increases hemoglobinís affinity for oxygen enabling each blood cell to carry more oxygen to the brain than possible at a flow rate of just 15 liters per minute.

The resulting combination of hyperoxia‚ hypocapnia‚ and an elevated pH above 7.4 that superoxygenates arterial blood flowing to the brain all serve to constrict the arteries and capillaries in and around the trigeminal nerve aborting the pain of a cluster headache attack much faster than the traditional oxygen flow rates that do not support hyperventilation. Itís important to know that even with cerebrovascular constriction and a slightly reduced arterial blood flow‚ several studies have shown the oxygen content in brain tissues is actually higher under these conditions.

How much is enough when hyperventilating on 100% oxygen?

The simple answer is we donít know. The results of preliminary studies are largely anecdotal due to a limited sample size‚ but they are very promising with no adverse effects. We expect the answer to this question and many others in 2008. A larger clinical study of this therapy is in the final planning stages with a more than sufficient number of study participants planned.

Posted in Untitled on 06 Mar, 2008 - 4:45 pm

Hi Kazza & welcome

From what youíve said above this is your first time dancing with the deamon & thereís a lot to learn.
Firstly you say that you have had this one for a month; is it one continuous head ache or are you getting the same type of head ache daily and for how long each time‚ I ask this as CH pain doesnít linger as one headache for generally greater than three hours but will repeat again time after time.

Unfortunately I canít help you with Inderal and imigran nasal spray as I donít use medications as such & as for mersyndol forte. you may as well feed them to the chooks as they wont touch the side of a CH pain‚ before I was diagnosed I was taking 8 panadine & 1 Codral Forte as directed by my doc & they didnít do jack.
I use medical oxygen as an abortive‚ its safe & very effective & is readily available fro BOC Gasses simply by starting an account with them & following the instructions in this post Just click on the link

Or you can ask your doctor to write you a script for oxygen but the doc must say that the required flow rate is between 12 & 18 litres per minute to get the best effect; the C size kit that is usually given is called oxy care & holds enough oxygen to kill about 3 dances.

You ask will it end; yes it will but depends on a lot of things but in general 10 to 12 weeks isnít unusual‚ I know that sounds a lot but with help from this board we can get you through.

Feel free to message me with any questions.
Here's a pic of what you will get in the oxycare kit.

Posted in Untitled on 23 Jan, 2008 - 12:02 pm

Hi and Welcome.
Here's a quiz that can be found on the US CH cluster board & OUCH UK; its written to give you an idea only that you may or may not be a CH sufferer.
Regardless of what conclusion you come to from the quiz you should get your GP to refer you to a Nuro preferably one who deals in headaches specific.
Although strong light is not generally a common factor for CH it has been reported by some people‚ but as we all suffer in different ways one trait may not be generally common in all.

PS: This quiz is now being used by some GPs as a first line diagnosis guide.
There have been so many questions on the message board from people asking if the headaches they suffer from are clusters or not I decided to build this quiz.
It will give you a quick‚ generic idea whether you may suffer from cluster headaches or not.
#1) Do your headaches normally last LESS THAN 15 minutes?
Yes No

#2) Do your headaches normally last MORE THAN 4 hours?
Yes No

#3) Do your headaches normally switch sides from day to day or during a headache?
Yes No

#4) When you have a headache‚ do you normally seek a quiet‚ dark place?
Yes No

#5) When you have a headache‚ do you normally want to be around other people?
Yes No

#6) When you have a headache‚ can you normally lay down and be motionless?
Yes No

#7) When you have a headache‚ can you normally go to sleep to make it go away?
Yes No

#8) When you have a headache‚ do you normally experience nausea?
Yes No

#9) Are your headaches always on the same side of your head?
Yes No

#10) Do your headaches normally wake you up from a sound sleep?
Yes No

#11) Do your headaches normally occur at the same time of the year and same times each day?
Yes No
#12) Do you normally experience a stuffy nostril on the same side of the face as the pain?
Yes No
#13) Do you normally experience a "droopy" eyelid on the same side of the face as the pain?
Yes No

#14) Do you normally go from totally pain free to totally debilitated in 5-10 minutes?
Yes No

#15) Do you normally go from totally debilitated to totally pain free in 5-10 minutes?
Yes No

#16) When you have a headache‚ do you walk‚ pace‚ bash your head‚ thrash‚ scream?
Yes No
Questions 1-8 are not normally associated with cluster headaches. If you answered "Yes" to a few of these questions‚ you probably don't suffer from cluster headaches. Please do your research and see a doctor!
Questions 9-16 are normally associated with cluster headaches. If you answered "Yes" to most of these questions‚ you may suffer from cluster headaches. Please do your research and see a doctor!
No matter what type of headache you have‚ the most important thing is that you see a health care professional for treatment. Self-diagnoses of head pain can be life threatening!
If you would like to take another quiz something like this one‚ there is a very good 30 question quiz located at the Headache Care website. It asks different questions about all different types of headaches and may help you try and figure out what exactly it is that is causing your pain. You can go directly to the quiz by clicking here‚ or you can go to their home page by clicking here.
Please read all of the information on this site as you can about cluster headaches. There are many good links on the links page to all kinds of other headache sites and pages on the net where you can research your headaches. Please inform yourself about your headaches as much as possible! Knowledge is power!

Posted in Untitled on 21 Jan, 2008 - 7:31 pm

Hi Vitaliy
That sound like what is known as shadowing.
If it's that dull felling like a heavy cloud hanging over the CH side of your head but never quite gets to a head ache then it's a shadow.
I'm chronic & live with them constantly; eventually you get used to them & take it as the norm.


Posted in Untitled on 27 Dec, 2007 - 12:38 pm

Hi Leanne

Welcome‚ sad to meet you this way but will help any way I can.
I'm an avid oxygen supporter for the big hits & Red Bull for the smaller ones.
You dont really need a script for oxygen; when I went chronic I searched around & came up with the info that's contained in the document held on this site‚ it should give you all the info you need to get the gear.
Follow this link & it will take you to the document; it gives part numbers for guages regulators etc‚ if you have any ?s just send me a message & I will try to answer them for you.

Kind Regards

Posted in Untitled on 31 Oct, 2007 - 7:59 am

Hi Col
Iím surprised you canít get one from the hospital ER‚ thatís where I used to get mine from.

I canít use the mask as Iíve got a beard and canít get a seal so I breathe straight from the bag through the mouth and exhale through the nose.
When I get home Iíll have a look and see what I got there and ill let you know if I got a spare then if you canít get hold of one send me a PM with your address and ill send it over.


Posted in Untitled on 25 Oct, 2007 - 9:14 am

Hi Maca
Welcome to the site & thanks for being a supporter for your Dad; it's you people our supporters that help us get through this insanity.

Firstly tell us what your Dad uses by way of medication for preventatives and abortive's; there are a myriad of thing that can be used but not all work for everyone‚ itís a bit of trial & error & not all doctors are aware of the condition.

Iím chronic and donít use medication; my fave weapon is medical oxygen as an abortive when getting hit bad & red bull slammed down cold & fast for the lower level hits.


Posted in Untitled on 16 Oct, 2007 - 10:08 am

Hi Col
Welcome to the nut hut‚ sad to hear youíre hurting.
I canít help on the meds side of things as I donít take them myself‚ Iím chronic & if I was to take meds I would be rattling like a half empty Jaffa packet.

Iím an oxygen devotee and running with a Taurine & Magnesium/calcium regime that appears to be working.

To get oxygen you donít necessarily need a script from your Doc you can get it straight from BOC by simply starting an account with them‚ as you are episodic you would probably best just rent the gear from them & when your clear again you just return it until the next time.

Hereís a link that will take you to the US Clusterheadaches site that has a lot of very useful o2 info.[/L

This link will take you to a site that gives info on the gear that is available in Australia

As for what Brian said I agree with Kate; there would have been no malice meant at all‚ Iíve known Brian for a few years now & speak with him on the phone often & I assure you that he would rather go out of his way to help than hurt.

Kind Regards

Posted in Untitled on 11 Sep, 2007 - 9:03 am

Hi Phil
Yep it's the same Barry T from the board.
I cant help on the meds side of things o2 is my weapon of choice.


Posted in Untitled on 29 Aug, 2007 - 10:50 pm

Im new to this site‚ but have had chronic CH for over thirty years.

Its nice to meet you folks‚ I live in Boston‚ Mass‚ USA.

Hi‚ Barry


Hi Jonny icon
Good to see you here your experience will be valuable.

Note to all Oz members this guy is one cool dude & has a lot of experience behind him & I would trust him with my life.

Cheers for now; Gotta go take a shower "She who must be obeyd has spoken"


Posted in Untitled on 29 Aug, 2007 - 10:44 pm

Hi Paul

Welcome & sad we have to meet this way but at least we can at least talk to people who understand just what it is that we go through.
Iím only new to this site myself & only been nutty for around 9 years but I know Iím in good company & its great that we now have an OZ site where we can work on this on our turf; Iíve been a member of the US site for around 3 years & learned so much.

Here we will be able to exchange ideas remedies & things that have or havenít worked in our little spot on the globe‚ meds & supplements availability along with oxygen availability differs from state to state and country to country.

I know that if we work together we can make life for each other a lot easier.

Cheers for now.

Posted in Untitled on 28 Aug, 2007 - 2:47 pm

Hi people

Iím chronic & get the icepick jabs daily but they never seem to bother when Iím in a full swing bout.
Iíve always been a lefty except for a hard earned hangover.icon

Its funny how this beast treats us all differently I get tinnitus & have had it since just before I got CH‚ for me itís a good indication that I am going to have a reasonably good day ( if the tinnitus goes thereís a good chance I will shadow heavy & possibly get hit.

Roger I saw when I registered your remark about RLS & your thought that it & CH are related; yes they certainly are‚ as is Exploding head syndrome‚ I had all three at one stage & they gave me a fair beating‚ they are all related to having a dodgy hypothalamus‚ somewhere I have links to the info & when I find it I will post it here.


Posted in Untitled on 28 Aug, 2007 - 10:58 am

Hi Peter

Iím chronic & donít have any set times unless I go into a definite cycle then I will get one regular at around 5:30 Ė 6:00 pm for about the first week & after that they will increase over time from 1 a day to a peak in the middle of the cycle to anything like 12 a day with no set time but mostly at night; on the downward taper they gradually decrease in occurrence until the cycle ends‚ my cycles donít have any set period either‚ first one when I was episodic was 10 weeks‚ second one was 12 weeks & then went chronic & they can come at any time‚ I just finished a 7 week cycle & have gone back to the usual shadows & icepick stabs but no actual hits.

I donít know of any method of changing the timing of the hits but have you had any luck with getting to try oxygen yet‚ for me itís an absolute saviour as I can kill a hit within 5 Ė 7 minutes at times but never more than 10 minutes.


Posted in Untitled on 27 Aug, 2007 - 10:25 am

[quote] & started to get icicles on the nose....

Them's called snotticles.[/quote]

Iíll let that one go through to the keeper‚ my imagination could go ballistic.icon


Posted in Untitled on 27 Aug, 2007 - 10:22 am

I'm interested to try Lithium‚ I've heard it does good things‚ but haven't seen it here.

This is the first time I've used lithium but Iím sure it helped; this was a short dance with the demon only 7 weeks instead of 12.


Posted in Untitled on 17 Aug, 2007 - 1:42 pm

Hi Saint
Thanks for the welcome & yes I will think about you when I wrestle a can out of the fridge‚ my immediate thought will be ďGod & this man lives in a country that has weather like thisĒ and talking about cold‚ Brian got to within about 800 Ks north of me & started to get icicles on the nose so he turned around & went back north.icon

On the Imegran front I to found that they simply didnít work if taken as per the instructions but what I did find was that if I battled the beast for around 10 minutes before taking one & then killing it with o2 the Imegran would work as a prevent for 6 Ė 8 hours‚ I was also taking 250mg Lithium Carb 4 times a day along with my usual 500mg Magnesium & 500mg Taurine 3 times a day.
This worked for me but Iím not going to say itís going to work for everyone.

Cheers for now & rug up‚ your winter is a commin.

Posted in Untitled on 16 Aug, 2007 - 9:49 am

This is a piece I wrote for the US based CLUSTERHEADACHES.COM board a couple of years ago; o2 still is my best abortive.

I see people posting that they have trouble getting scripts or prescriptions for oxygen so I did a little look around to see what is available.

I sense that this problem may come from doctors not knowing how to get hold of oxygen set upís outside of their own surgery environment or they are totally ignorant of the CH condition; donít get me wrong Iím not knocking doctors in any way‚ its probable that a doctor may never come across a case of CH in their career.

Hereís a link to BOC gases site.!?~login=boccomau

Here in Western Australia all that is needed to get the equipment is to set up an account with BOC gasses‚ easily done by going to one of their outlets and simply starting one up.

You can either buy the gear yourself or for the short term if you are episodic you can hire for a monthly fee a regulator & flow meter that fits the small C size bottle‚ you will have to pay for the oxygen and an annual rent on the cylinder you then only need the non re-breather mask that you may be able to con from ER if you know someone there.

The beauty of the rental gear is that you donít have the initial outlay cost and when you go out of cycle you just return the gear‚ when you return the bottle you should get a credit on the annual rental if you have only had it for a short time.

Hereís the part # for the portable hire gear. It is much like the oxy viva gear you see the paramedics carrying in an ambulance.

Order Code 401KITC Portable regulator & flow meter to fit C size bottle.

flow meter to fit C size bottle

My set up is a normal welders oxygen regulator attached to a D size medical oxygen bottle‚ good for home and reasonably portable with this flow meter attached.
You need to get a fitting with a barbed end to attach to the bottom of the flow meter to which you attach the tube of the non re-breather mask‚ I got my mask from the ER last time I was hit‚ they are normally throw away after use as they wont use them on anyone else for health reasons.
Flow meter part # 105215 0 to 15 Litres / Min

D & E bottle regulators

Non re-breather mask: The normal mask doesnít have the bag attached and the non return valves in the side of the mask.
Please Note: You should remove the strap from the mask just in case you fall asleep to prevent the possibility of oxygen coma caused by over use of oxygen.

This is my set up kept in the spare room ready to go; I use the D size bottle and a normal welderís regulator. The other regulator above I have shown is the Medical oxygen one; there isnít any difference in the operation of these regulators.

Hope this help some people out.


Posted in Untitled on 15 Aug, 2007 - 10:34 am

Hi all I am a new member just logged in today‚ Great site and good to know thereís an Aussie site where we can deal with this condition on our terms.

I was diagnosed with CH in January 2005 after my second cycle (aged 56); the previous being a 12 week stint in 1999 (aged 50) that went undiagnosed‚ after my second cycle I went chronic & have stayed that way; I also went through a period where I had Restless leg‚ Restless arm & Exploding head syndrome l am only mildly chronic in that although I shadow daily I can go for some extended periods without getting a hit above a KIP 5‚ the best stint being 244 days.
Iíve just finished a 7 week dance with the beast & looking forward to a beer.

My weapon of choice & the best is medical oxygen to abort with Magnesium and Taurine as preventatives.

Any way a bit about my other self: Iím 58 married with 2 grown children and live in Karratha Western Australia; the town is located on the North West coast of WA where the Woodside natural gas production plant is and the centre for the iron ore industry in the Pilbara.

Ill say by for now and will definitely keep posted‚ all the best & PF times to all.

Kind regards

Edited to add: Good to see some of the familiar Oz names from the US site Clusterheadaches .com