Sign in

Showing all posts by "wayne mc"

Home  >  Forums  >  Showing all posts by "wayne mc"

Posted in employers letter on 10 Jan, 2018 - 3:17 pm

Hi everybody
There used to be an employers letter on the website, can anyone tell me where it is or if it still exists.


Posted in Oxygen (when is it needed) on 22 Apr, 2015 - 7:28 pm

Hi leanne

I agree find yourself a new neuro, oxygen works for most CH sufferers, but you have to use it as soon as you feel an attack happening. If it doesn't work in about 5min it probably wont, I use imigran injections as a back up, but there expensive, another trick is to drink a energy drink, but it must have at least 1000mg of taurine, and drink it as fast as you can and it must be cold.
Also with the O2 once the attack has stopped stay on the oxygen for a while or the attack could return .
These are some things that do work for me, so what Im suggesting is try to have some backups because one thing will not always work , and nothing is worse than having an attack with no options.

Hope this helps.


Posted in Gabapentin users anyone? - please help! on 24 May, 2011 - 9:26 pm

Hi Ben.

I have tried gabapentin and like you failed, also tried all of the epilepsy drugs including lycra which make me dopey. my main trigger is relaxation so if something slows me down im history. I can usually go hard all day. but as soon as I stop and relax im gone, even stopping to long for lunch, I just stop eat and go then Im right.

My employees know whats going on and just let me go. Some have seen the consquenses and im sure (don't know) they explain it to the others (subbies etc).

So if the doc gives me something that makes me dopey I dont last long on it for that reason.

I can also drink alcohol as long as im active doing it, like mowing the lawn, concreteing etc. but when I stop the ch is more severe and harder to abort. but on occations I still do it, im only human with a short memory.


Posted in Prednisone - don't do it! on 24 May, 2011 - 8:54 pm

Hi Ben
Thank you for your reply.

Still going really well with steriods, and don't really care at the moment if they come back after this course im just enjoying what at feels like to be human again, ill take what I can get.

Sounds like our clusters are fairly similar.

The neuro is hoping to break my cycle with this but I have learnt not to get my hopes up, been kicked in the butt to many times.

This dosn't really get me down it's just the way it is, ive learn't to deal with it.

But sometimes you need a break, like now, sometimes enough is enough.

So if this can do that for me, well ill take it with open arms from time to time.

Sorry for the grammer , im a builder, good with my hands, not so good on the keyboard.

Also ben your posts from what ive read and my experience are pretty spot on and straight to the point, You cannot sugercoat this condition people need to understand that it serious its problably not going to go away, and you will have to live with it. So its as much in your head (sorry mind) as the headache itself.

I live my life as if it dosn't exist, untill It happens then it exists deal with it then get on with it. It.s only when you get muliple hits its tuff because you cont get on with it. thats when I can't deal with it and thats when I need something like this course of steriod.

Hope you are having some relief as I am and thank you again for your reply, I needed it



Posted in Prednisone - don't do it! on 22 May, 2011 - 8:40 pm

Don,t know what to do about these steriods,
Have been suffering for the past 15 months with only 4 weeks break before that and 10 months cycle before that.
I went to the specialist last week because my clusters had gotten very bad, getting between 3-6 a day medication and o2 was breaking me.
Not to mention trying to work.
The doc put me on 50mg of steriods a day and said come back in a month, from what ive read most people are only on them for days or a week ten tapper of.

The problem is they worked straight away,after one day with only one minor CH since
the visit to the doc.

I havn't felf this clear in the head for years and feel great, with alot of energy.

I just hope this dons'nt backfire on me because nothing has ever worked for me like this.

Any suggestions would be great, alot of posts talk about side effects but apart from feeling a bit hypo and hungry nothing else.


Posted in Untitled on 29 Mar, 2011 - 7:23 pm

Gday DDAY2

Bens right, I had the nerve surgery about 4 years ago and it didnt work, In fact my CH has got worse. This last bout has lasted 13 months without break.
I have been suffering for about 14 years and have a good handle on it. (not happy about it) there will be something out there that helps.


Posted in Untitled on 01 Mar, 2011 - 5:42 pm

Great post Barry,
from my experience spot on


Posted in Untitled on 27 Jan, 2011 - 6:39 pm

Hello everybody
Im still here and still in my current cycle which started last march. hav'nt been around much computor srceens seem to set me off, but have been viewing posts regularly.

I have to agree with guys post verapamil helps alot with the severity of my attacks and helps when im using O2 as the attacks are not as servere so easier to abourt.

My backup is imigran injections which always work.

I use them by self injecting and only using a third of the vial (2mg) the vial holds 6mg
this works nearly as fast as the whole vial but without the the effects on the body, I can go back to what I was doing in about 15;20 mins

I went of the verapamil a couple of weeks ago because I thought it could be prolonging my CH, Big mistake got hammered so It definitly works.

Also having CH for this long isnt as bad as you would think as long as you have it under control, you know whats happening and how to control it so it becomes part of your routine.

In the past every episode was different what worked last time didnt work this time, so you were in alot of pain until you worked it out which could be weeks.

Cant see this ending soon the colder months are my worst so well hang in there.


Posted in Untitled on 02 Sep, 2010 - 7:02 pm

Hi Guys and girls

Well I gave it a go (nerve root block) but unfortunately It has,nt workrd yet I got a couple of day off but then returned to normal. This is my second attempt with no luck.
Anyway It was worth a try.
The neuro said it could take up to a month, so still have a couple of weeks so heres hoping. If nothing happens will have to wait out cycle which should end oct/nov.

Wish you luck moptop this has worked for many people, Im just a hard case.


Posted in Untitled on 20 Aug, 2010 - 11:40 pm

Hi everyone

Thought I would post this here, this probably apllies to a couple of different post here
firstly i think I HAVE FOUND THE NUMBER ONE NEURO for CH with is Dr Andrews in Canberra, he informed me that he was part of the team that done the initial study on CH 30 years ago. he was one the same page as me strait away.

I went to see him for one purpose only to have a nerve root block done, and for that purpose only. which i explaned to him my knowledge i have to my CH.
He was very understanding.and concerned about the length of my bouts.

As I have had a nerve root block in the past and failed, he informed me that this procedure has the be preformed very acurately .

So I Had this procedure done yesterday at 10 30 am ,,Felt really good after and went back to work that afternoon, no CH at my normal time around dinner time. went to bed and didnt sleep well at all, spent most of the night feeling like a Ha was comming had the side effects but no Ha.

woke this morning with shadows but not to bad about a 1-2 nothing really,

Had a great day today mind was very clear.

Now 11,00 still no CH so thats 2 day with hardly any pain have not had that since early march.

Anyway so far so good, will keep ypu posted


Posted in Untitled on 17 Aug, 2010 - 6:00 pm

Thanks People

I am now a bit wiser, but I still have CH

Thanks Wayne

Posted in Untitled on 15 Aug, 2010 - 9:11 pm

what is CPH


Posted in Untitled on 05 Aug, 2010 - 6:13 pm

Gday Martine
Yep I used to use it all the time, and it worked pretty good, wouldnt stop the ch but made it more tolerable.

the problem is they are hard on the stomach, so keep an eye on that , but it should help.

Hope he hassome releif, someone his age shoudnt have to put up with this, its way to hard.


Posted in Untitled on 13 Jul, 2010 - 7:53 pm

G day again

How much verapamil are you on alot of sufferers need a very high dose‚ I have read that some are on as much as 1000mg aday.
480mg a day seems to be a common amount‚ also they use regular release not slow release. thats 240mg morning and night.


Posted in Untitled on 13 Jul, 2010 - 6:35 pm

Hi Dusker‚
We hear you‚ there will be something out there that works for you.

Have you tried Verapamil‚this has worked for me in the past‚ It didnt stop the CH but reduced the intensity alot. This time around im not using it because makes me very tied and I find it hard to do my job. But I am struggling with the severity‚ so using alot of Imigran‚ its a vicious cycle‚ if I use verapamil I dont earn money If I dont use it I spend the money on Imigran.

With verapamil it takes at least a week to start working.

Hang in there my cycle normally ramps up and you think you cant take anymore then ramps back down and leaves.


PS Morphine will not work for CH.

Posted in Untitled on 08 Jul, 2010 - 6:56 pm

Gday Gus

I have had surgery in which they cut nerves on the effected side‚ the main nerve being the tregeminal nerve they cut about 25mm out of it so it cant grow back they also cut 6 minor nerves.

The short story is it didnt work.

The operation left the left side around my ear and neck abit numb which dosnt worry me at all ‚ but takes abit of getting used to.

I am convince that the problem for me is the Greater occipital nerve
which Im told cant be cut because the face will drop on that side similar to bells pausey.

Im currently looking at having a occcipital nerve block as some people have had great success.(see posts by benny)

Also I think my cycle lasts longer and more severe than prior to the opp‚ but that could be the way it is.

Hope this helps
If you find No1 please let us know.


Posted in triggers? on 06 Jul, 2010 - 5:00 pm

change in weather or temperature


Posted in Untitled on 02 Jul, 2010 - 6:56 pm

gday janeh

Glad to see you have found this site‚ there is a wealth of information here.

Im in cycle at the moment also‚ getting hit 4-8 time a day or I should say night.

O2 was working well‚ but not doing such a good job at the moment‚ just taking the edge off. So I also use Imigran injections‚ but I dont use the whole dose. I pull the vial out of the packet and then push the needle into my thigh the use the injection pen after you have released the plunger and inject 1/3 of the dose. This gives me 3 doses out of one vial.

I know what your thinking SELF INJECT but believe me its easy whilst being hit.

Also this dosnt leave me feeling so wacked and works just as fast(nearly)

If You need more info just PM me‚ that goes for everybody.

Also it works out at about $20 a hit‚ still expensive but better.

Welcome aboard


Posted in Untitled on 17 Jun, 2010 - 9:31 am

G day luke

Yeah the energy drinks can be good‚ but I find the thry are a bit hit and miss.

Have you tried oxygen I had 3 hits last night and the o2 killed all of them within 5 mins.

With the energy drinks make sure they have at lest 1000mg of taurine and 80mg of caffine which most of the name brands have.
You need to drink it at the very first sign of an attack‚ and skull as fast as you can.

I have tried this during an attack and has made me worse and intensified the attack.

Imigran injections are also very quick at abourting an attack usually within 10-15 mins but are quite expensive so I only use them in a emergency.

Keep trying different things‚ but the biggest mistake I made was being to impaitient It takes time‚ but you will find something that works. These headaches are evil but you can beat them.

Good luck

Wayne Mc

Posted in Untitled on 15 Jun, 2010 - 3:30 pm

Gday Steve‚

Stock up lad‚

Two injections will cost you $128.00 au here.

I use a method where I get six injections out of two vials‚ you can look it up on the US site under Imitrex tips‚ Yanks call Imigran Imitrex same stuff.

As far as finding a good neuro in Sydney I cant help‚ I live about an hour away and still looking.

Sounds like you have a handle on what you need‚ so I cant see any reason why a GP cant give you what you want‚ mine does.

How's your Rugby team going. Ha Ha.


Posted in Guess what? on 13 Jun, 2010 - 10:23 pm

I race speedway cars‚ today I was racing at Canberra for the ACT titles.
You have 3 heats then a final‚ your position in each of the heats you get points after the heats are finished the driver with the most points starts the feature race in poll position and this race determines the winner of the title.

So I had two firsts and a second which put me of poll.

Guess what? I got a bloody headache and couldnt race‚ Instead sat in my ute just a mess.

To make things worse they have been running a pointscore for the whole season with some prisemoney.

Guess what? I finished second by one bloody point.

you get 3 points by just starting.

thanks alot

Frustrated Wayne

Posted in Latitude Correlation th CH on 23 Apr, 2010 - 8:41 pm

gday benny

Ive been around on the site‚ I dont think ive mist too much'

The best thing this time around is Im not really doing it that tough‚
last time around I really found some things that work for me.
and fortunately they are working well.

So it's more an inconvenience at the moment‚ hope it stays that way.

Good luck with your decision with work‚ and hope they have the internet down there so you can keep in touch.



Posted in Latitude Correlation th CH on 21 Apr, 2010 - 8:05 pm

Gday benny

I havn't seen anything that suggests it makes any difference‚ if you look at the where are we map we are everywhere.

It seems there are more sufferers where there is more people.

Also the cold seems to help people‚ I havn't seen to many post that they try to get hotter when suffering‚ most look for cold like putting your head in a fridge‚ car airconditioning etc.

Good to see your CH free still


Posted in Untitled on 18 Apr, 2010 - 7:32 pm

Hi Dusker

I only found imigran last year when I was being really hammered by CH and was a real mess‚ so I went straight to the injections‚ I didnt try the pills. since then I got my O2 setup and havn't looked back‚ only using the imigran if Im away from O2 or the O2 dosn't work. O2 works for me most times‚ If it dosn't work then im way too far into the attack and need something fast‚ the imigran usually works in a couple of minutes. I doubt the pills would be this effective.

Still having mild attacks O2 working well so not real problem at the moment.

I have tried to the I can get by thing too‚ and lost I have realised that as soon as I feel an attack comming to do somthing fast or pay the consequences.



Posted in Untitled on 17 Apr, 2010 - 11:52 am

That was great while it lasted‚ 5 months with no CH but as winter gets closer the CH is back. As it dose every year.
Not to bad at the moment only need a short stay on O2 to kill it.

Have been watching this site while on remisssion and its good that most have a handle on their ch.

For anyone thats interested I use verapamil 240 SR once a day usually at night because it makes me drousy as a preventative this is pretty low but it works for me.

I then use O2 as an abourtive and have made my own setup for this which works well most of the time.

If the O2 dont work the its Imigran injections which I self administer and only use 1/3 of a vial so the cost is less and I can have more injections if required‚ Imigran has always worked.

Thats it will have to buckle down till about October.



Posted in Untitled on 21 Feb, 2010 - 8:18 pm

Gday Ange

You said that you have explained you condition to you boss‚ so I cant understand why he wouldnt help with o2‚ It does work‚ surely somebody in the welding shop can help you.


Posted in Untitled on 20 Feb, 2010 - 1:53 pm

Hi Ange‚
Dont worry we are listening and know only to well were your at‚

Sometime I dont know whats worse the CH or how tied and depressed you can get‚ but you will get through this and Ch wont kill you.

You said that o2 is not avaiable this seems strange‚ I use welders o2 and a welding regulator I just removed the hose and put a small
barb fitting onto it then push the hose onto that‚ you can wind the reg down enough to use the non rebreather mask‚ just make sure the bag dosnt empty when you inhale‚ this works well for me.

You have to find somthing that works for you‚ there will be something so dont lose hope.

If you need to know more please PM me

Hang in there.


Posted in Untitled on 20 Jan, 2010 - 7:26 pm

Sorry I forgot to tell you that Imigran is called Imitrex in the USA

Posted in Untitled on 20 Jan, 2010 - 7:16 pm

Not a problem Patch‚
Dont worry about waiting for the neuro‚ my GP gives me scripts when I need them‚ just make sure he checks you out properlythenbest. I have never used the pill form of Imigran but the injections work very quickly for me. I use a method for injecting imigran which I found on which triples the amount of injections you get. the best part in that you also get a third of the side effects. Imigran is actuallya migrane medication but with CH we only need a third of what they need (go figure) and it still works as quick also a third of the cost. another plus is you can abort 6 headaches a day instead of 2.


Posted in Untitled on 19 Jan, 2010 - 9:13 pm

Gday patch

Yep been to hospital plenty of times‚ and Toradol does work and pretty quick too‚ also imigran works quicker‚ have had O2 in hosptal as well but has never worked‚ O2 only works for me if I start at the first sign of Ch.


Posted in Untitled on 19 Jan, 2010 - 9:01 pm

Hi guys

I have read that cafergot as been stopped‚ dont know why but there must be a reason.
As far as these shadows your having you could try red bull energy drinks‚ butthey need to be ice cold and skull the lot‚ one go.

Also no alcohol‚ when I out of cycle (like now i drink like a fish) but in cycle will not even look at alcohol.

hope this helps


Posted in Untitled on 18 Jan, 2010 - 5:55 pm

gday guy and girls

If I dont get to o2 immeadiatly so within a minute it a waste of time‚ If I have to go to hospital then I demand Imigran or toradol injections . and this works very quickly. I noticed on other treads that some of you have been using imigran tables I tried them and it takes to LONG 20 30 minutes is a lifetime with these things‚ the injections work withins 2-3 minutes every time for me‚ and have never failed.

these days I only use them when Im out away from my o2‚ Im a builder and have o2 in my work truck which is aways with me‚

hope you PFDs



Posted in Untitled on 17 Jan, 2010 - 7:05 pm

Gday sniper 1

Your not boring anyone here‚ and you have found some very helpful people who understand what it is like to have CH.

The best advice I can give is to read as many posts as possible and you will see there are a few thigs that work for most of us.

the first is the use falotof o2 it took me a while to work it out but there are plenty of people to help just ask. once you have worked it out you wont look back.

the second is imigran injections which will usually stop them cold in a couple of minutes.

then there is verapamil which is a prevenative which some people use

but its not the same for all of use so you need to work out a plan for yourself. the biggest mistake I made was being to impaitent

the things that ive mentioned are what work for me and now I have these weapons the CH is alot easier to deal with
anyway dont be afraid to ask qestions somebody here will know the answer.


Posted in Beer anyone? on 13 Jan, 2010 - 7:22 pm

gDay beau‚

Yep my first bout was after a big night out almost 12 years ago‚
woke up and thought I was going to die.
Some of my bouts have started the same way‚ but not all.
I have also had them end suddenly the same way‚ Im not convinced that alcohol is a trigger for me because My attacks happen whether I drink or not.
Im out of cycle at the moment been pain free for about5-6 months
but still thinking of you who are in cycle‚ will be my turn sometime‚ but not to soon I hope.


Posted in Left or right sided on 14 Oct, 2009 - 8:24 pm

I presume your taking about CH‚ so tht makes me a righty‚ righty oh


REGARDS wayne.

Posted in Untitled on 18 Sep, 2009 - 5:24 pm

Gday stephen

i dont get a watery eye either but I can gauantee that I have CH
you dont have to have all the symptoms my nose dont run very muck either unless its a heavy hit then it runs like a tap.

As far as the eye goes when im having a hit its very red and starts to close o bit but never runs.

Imigran and verapamil are both very effective for alot of sufferers
I use both except I use Imigran injections which work alot faster‚ the verapamil takes a while to kick in so alot of people give up on it before it works‚ it can take up to two weeks for me but then its great.

You need to look at the o2 link to the left this is the number 1 abort for alot of sufferers it works great for me.

Try and get your husband to look at this site‚ its been a life saver for alout of us.


Posted in Untitled on 15 Sep, 2009 - 8:29 pm

Gday all

Been battling away with these things since about March and only had about six weeks break before that after 11 months straight.

But this time I got my act together an attacked it fair dinkum
After reading every thing on these sites and trying most of them there were some things that seemed to work and some that either didnt work or made it worse. so I took the things that seemed to work and stuck to them like glue. through good and bad.

first off I got a O2 setup togeather and worked on getting that right which took a while but it works great now and wouldnt be without it‚ the next thing or mybe the first thing was imigran injections which work great for me killing a hit in a couple of minites but the cost was killing me then I found a thead on on how to get 3 shots out of 1 vial of imigran but requires self injection which I wasnt real keen on but when you get a HA its not a problem (whatever it takes)and the side effects were nearly non existant

The next thing was verapamil which I started with 480 mg a day but
made me like a zombie so I backed off to 240mg‚ the thing about verapamil is that for me the first couple of days I get hammered very bad‚ but after that I start to come good and can deal with the HAs so Im convinced that its worth the pain to start with to get some consistant relief for the rest of the cycle.

So my cycle still lasted 6 months but that better than 11 months‚ but the main thing this time aound I had plenty of ammo and was always prepared so it was always under some kind of control.

Im not saying that its over although its been 14 days and im off all meds‚ and if you know what I mean I feel like its over.

Sorry about the long post‚ but this time around I feel like im in control not the CH and its been a long time. I know you guys understand.

Also im not going anywhere this habit is hard to break.

Hope you PF days


Posted in Untitled on 08 Sep, 2009 - 6:27 pm

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

hope they are a distant memory


Posted in Untitled on 08 Sep, 2009 - 6:15 pm

will you lot stop it
your giving me headache


Posted in Untitled on 08 Sep, 2009 - 5:38 pm

gday kirkulles

I have taken indomethacian back when I first started with CH and had some pretty good results but over the years they stopped working as good‚ I found out that they help with CH by chance when I had a bit of a back problem. The down side is they play hell with your stomach when use for a prolonged period. Sorry no experience with Prednisone.

If your stomach can handle the indomethacian their worth a shot.

Hope it works


Posted in Untitled on 07 Sep, 2009 - 6:04 pm

gday stefwill

Mate these sites have been a lifesaver for me‚ before I found them I was fumbling around in the dark and nothing seemed to work.
The doctors that I had seen had no idea‚ which is a common theme around here. My advise for what is worth is to read read read and decide what could work for you.

I use verapamil 240mg a day but it takes a week or so to kick in and i feel my HAs are worse for that period but the it works well.

To get me through that period I use Imigran injections which will stop them in about 5min but the side effects are not good. also the cost is very high.

If im at home I use Oxygen and it works well.

But non of these work all of the time so if one dont work another will.

The medictions that you mention im not familar with but I do know that normal painkillers DONT work‚ Not even morphine.

So if your headaches are still lasting 30min then its probly run its natural course.

Hope this helps

Now you have found this site you will find something that helps you
you just need to be patient and dont be afraid to ask questions
there is alot of experience around here.



Posted in Untitled on 27 Aug, 2009 - 7:20 pm

gday sedz

There is an american web site called and there is thread to the left called imtrex tips‚ imtrex is the same as imigran in the states. I basically tells you how to get 3 doses out of one vial of imigran. i use this method and it works very well for me. You are only gettin 2mg uf imigran which works just as fast as a full injection but no where near the side effects.

hope this helps.


Posted in Untitled on 11 Aug, 2009 - 9:49 pm

gday midnight

The first thing you need to know is that you are not alone‚ now that you have found this site. there are people here with years of experience dealing with these headaches.

From your post you have only seen your local GP you need to find a specialist who understands CH‚ maybe have a look at bennys post ‚ I have spoken to benny and he seems to be doing a good job for him.

In the mean time try drinking a energy drink with at least 1000mg tarine and caffine at the first sign of an attack it works well for alot of us but must be at the first signs of an attack.

also read the 02 link t the left this is the no 1 treatment for CH
but will only abort an attack not stop them happening.

This is where the specialist has to work with you because there is no quick fix‚ we are all different and what works well for one dosnt work for another.

Also normal pain killers will NOT work with CH.

These headaches will not physically hurt you‚ so its important to try and keep calm (as possible) for me the more I stress myself out the worse the hits are. (easier said that done I know)

Please let us know how you are going we are here to help


Posted in Untitled on 24 Jul, 2009 - 8:07 pm

gday benny'
Great news‚ 4 days sounds like your on a winner.

I know what its like when you have no defence with these things‚ it sucks.

Luckly I found O2 and now can abort in about 5min (unbelievable)
Ive known about it for quite a while but was a hassle to set up(organise). I couldnt beleive how good it is. and absolutly no side affects. you just go back to whatever you were doing.

I also take verapamil as an preventative but this just takes the edge of.

If im away from O2 then I use Imigran injections‚ but they make me feel like grap‚ but better than headaches.

Benny ‚ hope you dont need anything‚ but if they return please try O2.

I am going to be in Jindabyne on the 9th and 10the Aug will PM you prior‚

It would be great to meet somebody who has CH‚ I have never spoken to anybody in the 12 years I had this.

anyway keep us posted


PS sorry about the computor skills.

Posted in Untitled on 22 Jul, 2009 - 8:39 pm

gday benny
Im along time sufferer as well about 12 years‚ over the years ive had alot of things done to me‚ a couple of years ago I had the nerve root block done but unfortunately it didnt work‚ In fact made me worse I think. But that dont mean it wont work for you. hope it does.
(I hd mine done at Canberra also and hurt like hell)

Also had op that cut all the nerves that are supposed to cause these mongrel headaches‚ which left the left side of my head sort of numb.
This didnt work either.

Ive just returned to a heavy cycle‚ only got about six weeks break
this time .(bugger)

Do you get more attacks during bad weather‚ The change in weather hits me hard‚ Marulan is cold also in winter.
Being a builder Im outside alot.

You sound like you have yourself under control‚ and dont let the headaches stop you from doing anything‚ Im off to the snow on the 9 and 10th of august‚ these things dont stop me from doing anything.


Posted in Untitled on 23 Jan, 2009 - 6:54 pm

Hi Cluster 13

The imigran costs me $136.00 for two vials‚but this is still expensive.

I think but not sure after you have spent a certain amount per year on medication (maybe $1000.00) medicare then pays‚ I must look into this‚ I have only used about 6 or 8 shots so Im still a way off from $1000.00.

perhaps someone else can help‚ but I cant see you paying that sort of money‚ there would have to be a solution.

So best of luck‚ by the way its 36 deg C today so bring your sunscreen and hat.



Posted in Untitled on 22 Jan, 2009 - 7:36 pm


Imigram is no ploblem to get out here‚ mine is prescibed by my local GP but the chemist will‚ only order it in‚ but im in the bush so sydney could be different‚ cost is about $136.00 without health insurance.

Hefty if you know how to get money out of medicare please let us know

I generally use imigram as alast resort after O2

Seems nasty to me ‚ cant be good for you

Verapamil is working very well for me‚ but dont be fooled and think your cycle is over as I did and stop taking it‚ because the beast is patient and will come with a vengence.

When you get here you find everything that you will get in the UK except we have sunshine.



Posted in Untitled on 23 Dec, 2008 - 7:43 pm

Hi hefty

we seemed to have highjacked My brain hurts post‚ sorry.

Im sure that if I wasnt a Builder my CH would be alot worse‚my main trigger is relaxation as soon as I stop the beast comes a nockin.

even if I sit down too long for lunch he comes.

Yes I do work for myself‚ so If I need to escape I can‚ All my workers knw about my CH so if I disapear For a while‚ they know
Ill be back soon‚ a bit battered.

So I dont tend to spend much time in the office‚ do most of my paperwork on site.



Posted in Untitled on 22 Dec, 2008 - 4:38 pm

Gday again Hefty

As far as medications are concerned‚ the main abortive that people with CH use Is Oxygen ‚ive only just started with it and its a bit hit and miss with me‚ but more hit than miss latley.

My big saviour is energy drinks‚ red bull etc but must have 1000mg turine and 60-80mg caffine skulled down at the first sign of a headache. this stops about 70% in its tracks and always have som at work‚ the colder the better.

Dont know why they work but they do.

I am also on 240mg Verapamil as a perventive but you need to see a doc because they are a blood pressure tab‚ just to be sure.

Try to get hubby on here this is not a depressive place its a good place.

Good luck


Posted in Untitled on 22 Dec, 2008 - 4:20 pm

G‚day hefty

I was also diagnosed with TN‚ dont really know what it means‚ I think its a term the docs use when they dont know whats wrong with you.

From your post I would say your other half has Cluster headaches.

I have also had this nerve cut which was suppost to cure me but it made no difference.

Had two cycles since.

What dose your hubby do‚ Im a Builder and understand how hard it is to keep motivated when your heads impolding everyday.

Try to get him online with us‚ I would be the last person you would think would come to a web site‚ but these sites have been my saviour.

My wife found these sites for me also and the first time I read some of the posts I had tears in my eyes ( dont tell anyone) so your not alone.

Also being a great supporter is so important‚ because we can be very difficult to live with sometimes‚ but its only because we are hurting bad.

Good job.


Posted in Untitled on 17 Dec, 2008 - 7:53 pm

g'day Zinzan

Im a righty‚ never had anything on the left.

Pain tolerance is very high‚ except with CH then it's very low

20 years and youe still looking for a new doc.

mate ive been to plenty and have learned more of these sites in three months than the 11 years with Ch.


Posted in Untitled on 08 Dec, 2008 - 9:21 pm

G‚day Bazz

I have used Indocid for what feels like forever.

Prior to having CH I took indocid for a back problem (which I no longer have) so when Ch started not knowing wht was wrong with me‚ thinking it may be a neck problem I took some indocid and it definitly worked reducing the severity and frequency of my attacks.
This was my only med for about 10 years‚ I still use it today although I feel its efectiveness is becoming less.

But its still very good for shadows.

Even though Ive been taking them for so long Ive have no stomach problems at all‚ But I always take with food.

But I would talk with your doc‚ mine is amazed that Ive had no problems.

Ive tried other anti inflammitories with no success.

When my attacks were more regular I would take about 1 hour before
wouldnt stop them all but helped.

Only ever used suppository once in hospital and it worked very well.
Now use O2 Verapamil Energy drinks and imigram‚ which for me is very good‚ but old habits are hard to break.

Indocid also helps with joint pain from years of abuse.

Hope this helps


Wish you luck


Posted in Untitled on 08 Dec, 2008 - 8:08 pm

Just finished a hit and thought I would check out whats happening on this site that could be of help or interesting‚ or if I could help.
But no just Patrick whining.

There were seven posts on this thread trying to help you. You replied to non of them.




Posted in Untitled on 15 Nov, 2008 - 7:57 pm

G'day Steven.

Sorry mate but I don‚t use Topamax‚ but have read a bit about it on they call it dopymax so it's side affects dont sound that good.

Although quite alot of people say it's effective for them.

Have a look at this site theres information there on it.

Have you tryed Verapamil it seems to be a first line prevenative which I am on and works quite well for me‚ I've tried most meds and verap is the only one that Ive had any success with.

I've also had surgery but wouldnt recommend because it didn't work.

Best of luck


Posted in Untitled on 12 Nov, 2008 - 8:40 pm

Thanks Moulis

Yeah of the grog again‚ only really drank for my sons birthday‚ with no problems. Hopefully these two were rouge ones‚ nothing tonight‚ feel pretty good.

Glad to here your free of CH. been doing this a while now so I'll be right.

Keep in touch


Posted in Untitled on 12 Nov, 2008 - 7:52 pm

HI guys and Girls

I thought that I was at the end of my cycle‚ I went 10 days with no CH and was home free‚ so I stoppped my meds (verapamil) and looking forward to a clear head.

The day after stopping the next two nights (Mon and tues) I got hit not real hard about Kip 5-6.

Anyway back on meds now and back to the grind.

This is unusual for me ‚ before when they stopped they stopped.

This is the first cycle I have used Verapamil so Im a bit confused ‚How do I tell if there gone.

Also during the ten days off‚ I was drinking alcohol‚ but in saying that I wasn't convinced it was a trigger for me‚ because I rarely got hit straight away whilst drinking. Relaxation is my trigger.

And all you lookers out there‚ don't be scared to post‚ nobody here bites‚ and any questions you have somebody will have advice‚ personal
experience is something that most docs cant help with.



Posted in Untitled on 06 Nov, 2008 - 7:22 pm

Hi brane

The first thing you need to do is see a doctor.

Proper diagnosis is very important‚ Their are 1000s of different types of headaches.

If you click on some of the links to the left all of the symptoms are there.

Cluster headaches are extremely painful and I really hope that you don't have them. There is no cure.

What works for CH usually dose not work for other headaches for example Asprin.

Wish you luck'


Posted in Untitled on 06 Nov, 2008 - 7:09 pm

hi Kerry

I tried botox during my last cycle (last Nov)
I didnt get much releif might of helped a little but nothing substantual.

Have you tried energy drinks. You need to drink the hole can/bottle at the first sign of a headache‚ the colder the better.

But O2 is by far the best read the O2 link to the left.

By the way im in cycle at the moment and wouldn't concider botox again‚ but the doc that gave it to me said that it's not for everybody so you might be lucky‚ But the injections are fairly painful but your used to pain so youll be OK.

Best of luck


Posted in Having a beer during a cycle on 02 Nov, 2008 - 4:15 pm

well yesterday was the 1 nov‚
i took my son to the local hotel and drank some beer‚ actually drank alot of beer.

And guess what. (NO HEADACHE)

No headaches at all it's now 5.10pm and still no headache so I hope this cycle is over fingers crossed.

This is the firt time the beast has given me a break‚usually it stuffs things up for me.

We had a great night with my son and a few mates‚ played pool and pokies bit.

I think the beast knew he was beat on this one so it gave up.(CHICKEN)

Anyway well see if its over‚ but I think it is (I feel different and can sort of tell when it's over)

Hope you are PF and will keep in touch.


Posted in Untitled on 22 Oct, 2008 - 5:54 pm

Gday again

Good on you

Ive found that sometime you have to inform your doctor what you want.

Printing out the information on these sites and hand it to them‚ makes them learn‚ If they dont read it Look for a new doc.
Ingnorance is no excuse.

Im sure the o2 will work for you

O2 needs to be used a certain way see link to left.

Wishing you luck.


Posted in Untitled on 22 Oct, 2008 - 5:46 pm

g'day Jay

Glad you have found us‚ there is a wealth of information on these sites‚ also people who have a wealth of information and countless years of experience who will be only to glad to help.

From what Ive seen no question is a dumb question.

You will soon learn that everybody is different so what works for one might no work for another‚ Im only new here and these sites are the best thing in my 11 years with CH.

See that you already have o2.

Im glad that your CH is so preditable 3 weeks will go quickly‚ I hope you are then pain free for a while.

Im in cycle at the moment and have no idea when it will end ‚ Some of mine are 3 months but ive had 11 month cycles.

Gone 10 weeks now so who knows‚anyway no use worrying about because there is nothing I can do‚ it will end somtime.

Anyway welcome.


PS Im sure that most everybody has done that trip to hospital‚ I think is as pianfull for the driver to be driving with a crying lunatic beside them‚ It must be terrifying to be that close to a CH.

For me its a 40 min drive and have usually ended just after I arrive
Docs have no idea so I dont go anymore‚ I dont need it and my wife certainly dosn't.


Posted in Having a beer during a cycle on 21 Oct, 2008 - 8:32 pm

Gday moulis‚

Yeah Ive missed to many occations with the kids‚ but there extremly understanding. My son and I both race speedway cars and can remember sitting on the side of the freeway going to sydney with me in the front of my ute and my son sitting in the speedway car on the trailer waiting for my CH to end. we were then running late ‚ It was a very interesting trip but we made it. H still reminds me of it and cant believe that I kept going as if nothing had happened.This is one of the very few times he has seen me have an attack.

But thats the nature of this beast

I try not to make this everybodies problem but geez it‚s hard sometimes.

Wifes very understanding if we are out somewhere and I disappear
she knows were I am and waits until I return and covers for me
After I return we carry on as normal. then on the way home we talk about it.

Anyway enough about me I hope that your cycle has ended



Posted in Having a beer during a cycle on 20 Oct, 2008 - 9:32 pm

Gday everyone‚

On the 1 november my son turns 18 years old‚

When Im out of cycle I have been known to have a beer or three.

During cycle I dont drink‚although Im not convinced that it's a trigger but I just dont risk it.

Anyway Ive been waiting 18 years for my son to turn 18 and I dont care if my head falls of I WILL BE HAVING A BEER ON NOV 1ST.

But will be armed with Imigran.( Im not that brave)

Will toast you all.

Have been thinking about this for a while and these mongrel HA will not win this time.

Soon to find out if beer is a trigger.


Posted in anyone else has had any symptoms like twitching? on 20 Oct, 2008 - 9:18 pm

gday moulis

Great to hear that your out of cycle and hope you stay that way.

Now you can appreciate this great weather we are having.

Best of luck


Posted in Untitled on 20 Oct, 2008 - 9:12 pm

gday justin

I totally agree with moulis
there is alot of information available on this and other sites.
I have seen numerous neuros in my 11 years of CH. None have shed any light to this condition.
In the last 6-8 weeks I have learnt more from these forums than I did in the previous 11 years.
I am in cycle now and crusing compared to previous cycles‚ although the CH is just as bad‚ I totally understand my situation and understand what I must do when an attack starts. before they would start and I would panic and hope they would stop.

Now as soon as an attack starts (any sign) 1 can of energy drink down the hatch ( skulled) this aborts about 50% if that dont work
I try to keep relaxed and I have a breathing thing I do.(short quick breaths) and try to ride it out. If that dosnt work then I inject Imigran which always works for me‚ I have only used 3 in 6 weeks.

But the best thing I have found is Verapamil started on 480mg then went back to 240mg‚ 480 made me feel not so good.

When cycle started I was getting 2-3 hits from 4pm-6am relaxation is my main trigger.
Now Im lucky to get hit 1 in two days so for me im cruising.

Feel it will end soon.

Will try oxygen soon Im waiting for a reg‚

Anyway most of the information is here ‚ just take the time to work out whats best for you‚ the answer is there somewhere but give things a chance to work dont be to impatient.(I was guilty of this for years.)
I know this is hard when your head is imploding‚ but thats the nature of this beast.

Hope you are pain free soon


Posted in Untitled on 15 Oct, 2008 - 6:45 pm

G'day Patrick

See this is what this site is all about'
Your post has given me and others information that we didnt know.
Well I didnt anyway.
I dont think any of us has pain thats awalk in the park.
Even a kip 1-2 is bloody bad.
Pain is a very personal thing‚ and I dont think that we should compare‚ there all bad.
After a hit for some reason I have trouble relating how bad that particular hit was. my brain wont let me remember all I know is it was bad. A good thing I suppose.

Anyway don't let the mongrel get you down good times are coming.

Keep your chin up.


Posted in Untitled on 15 Oct, 2008 - 6:29 pm

thanks Barry

Will order a reg tomorrow.
Just finished a kip 5-6
Trying not to use Imigran but it very tempting when its sitting next to you.
Anyway got through this one and looking forward to o2.

Noticed you like joke!
maybe should suggest for this site‚ I find some posted on very funny and cheer me up' usually early morning hits.

Also I am much better mentally this time around‚ my wife thinks these sites have helped alot and is supprised that I am actively looking most days‚ usually wouldnt go near thr computer.

Hope you are well

thanks again

Wayne mc

Posted in Untitled on 13 Oct, 2008 - 6:06 pm

Thanks barry and others
went to our local BOC agent today and was informed that they no longer sell or hire regulators that go higher than 15ltrs per min
so 15litre is it.
apparently the 25litre reg dos'nt comply to aust standards anymore.
do you think the 15 litre reg would be good enough.
Also rang Airliquide same answer.

Apparently so they say regulators from overseas have a different
fitting to aust.

I have been having pretty good results from Verpamil 480mg ‚Indocid
and energy drinks.

Feel like I have some control over this now which is a first.


Posted in Untitled on 01 Oct, 2008 - 7:15 pm

Gday Moulis
Thanks for the info.
Read you other post about Imigram. I have had these mongrel headaches for about 11 years now and seen numerous specialists.
I have tried just about every med available but for some reason nobody has ever given me Imigram. After reading about it‚ I went to my local GP and asked for it. Wellllll how long has this been around.
When I have CH it comes on very fast and hard reaching full noise in a couple of mins. So it makes it hard to abort‚ Now I just inject
the imigram and its gone in about 5 mins. Only used it a few times but worked every time. So from my perspective Its a life saver.
Another thing that sometimes works for me is Energy drinks but i have to skull them down and the colder the better. I have to have them as soon as I feel any sign of CH hesitate and they dont work.
Back to the imigram the main setback apart from the cost‚ is I feel tied and a bit weird‚ sort a heavy feeling. Its no that bad heaps better than going though hell and back.

Hope it works for you


Posted in Untitled on 28 Sep, 2008 - 6:51 pm

G‚day again
I'm having trouble finding somewhere to by a regulator and non rebreather mask. I live about an hour from southern sydney and an hour from Canberra. Just wondering if anybody can help with a supplier. I intend to use welders oxygen as I have always got a supply at home and work. also no prescription needed.
From what I have read its the same oxygen. Has anybody had problems with industrial oxygen.
Been using Imigren injections but the chemist here has toorder them in taking 3-4 days (too long) also while in here can you by just the refills instead of the whole kit. This stuff is too expensive as you probably already know. Although I would pay 10 times
more if I had to.

Web is not very active at the moment hope this means that most are pain free at the moment‚

Look forward to replies


Wayne Mc

Posted in Untitled on 11 Sep, 2008 - 8:02 pm

Been looking at Clusterheadaches .com and just found you guys.
Those's guys are very informed but to have an assie site is great.

Anyway here's my story.

I'm a 45 year old male builder from Marulan nsw‚ (near Goulburn)‚ I have been suffering these mongrel headaches for the past 11 years.
My cycle starts whenever and finishes whenever but always last 5-10 months and have 1-2 ch a day.

I have tried most medications listed with minor success.
also had cortazone and botox injections with minor success.

During my last cycle I had an operation that removed/cut
the greater oppcital nerve and a couple of others(can't remember name) which didn't work either.(bugger).

Last break I got was from nov23 until last week. This time they are a bit different Very severe but getting a couple of days break
then whammo very severe. don't really know why but I am tring energy drinks which could be helping. (don't know weather it's better because I get hammered when I do get one‚ It's like lt's trying to catch up). So thats why I'm here .

Hope to be some help to this site and look forward to communicating
with you assies.

PS I'm not very good on the computor(or spelling) so bare with me.

Nice to have found you.

Wayne mcc