Hi All,

Thought I might introduce myself, names Luke and I'm from Melbourne. It was only on the weekend that by chance I read about cluster headaches. I'd always thought I had been a migraine sufferer (GP hadn't told me otherwise) as both parents and sister also suffered them. I always thought I had suffered them worse than my family, somehow they could still function and didn't want to just tear open their head and remove their eye....maybe it was just me, maybe I couldn't cope as well as them?!

So last weekend, my wife happened to be reading about cluster headaches and asked me some questions....it all seemed too familiar...but I don't suffer headaches I said - I have migraines...what I have are worse than just a "headache". So I looked into it more and here I am today. Everything I have read so far has hit the nail on the head.

So after numerous visits to the GP, blood tests, brain scans and countless osteopath visits, I now know what I have - "Cluster Headaches". Mine seem to pop up every 6 or so months, coming every few days at night b/w 12-4am and last b/w 1 and 3 hours.

I seem to have started my cycle again so with this new information, I
'm going to go back to the GP and see what he has to say.

I actually feel a bit relieved to have finally found what I have, as its been about 3-4 years now going back and forth with different methods of finding out what the problem was. I could quite happily never do another food diary again!!

Well thanks for reading my ramblings and after a good night last night and feeling refreshed, I'm off to do some more reading..

Luke.

Welcome,

Sounds like clusters to me!! This should be on the quiz on the left but it may have been overlooked..
Would you rather drink a gallon of cat piss, or suffer one of the clusters?? And what would you be willing to give up to make them just go away?? LOL..

You will learn alot here from people so just keep a open mind and keep fighting the fight!!
               
                      Coach Bill 8-)

Welcome to the board. You need to get to a knoweldgeable neuro...one who specializes in headaches. If that isn't possible, at least an open minded general practitioner who is willing to work with you.

Read the oxygen info link on the left. Should be your first line of defense against an attack. I can stop an attack in less then 10 minutes using oxygen.

For now check out energy drinks, Rock Star, Monster, any containing the combo of caffeine and taurine. Chugging one of these at the onset of an attack can stop or really reduce an attack for many.

Glad you found us hope we can help you.

Joe

PS: Have your wife check out the supporters section. Nice place to vent about us and here how other significant others handle the beast!

yep, sounds  like clusters.  Man, the people on this forum prob. know more than most doctors. Lots of good info here.

GO MY GOOD FRIEND, EDUCATE THY SELF!!  :D.

And thereis clusterbusters.com  as well for natural cures w/o all the bad side effects of Rx drugs with very good sucess. 8-)

Thanks for the quick responses!

Will check out all the info on the site...dare say it will take a while!

Had never heard about the energy drinks being a help before, def willing to try anything at this stage!

[smiley=thumb.gif]

Most find the best results using a 2 pronged approach:

1: A good prevent med. Whether it's verapamil, Lithium or Topomax, it's a med you take daily, while on cycle, to reduce the number and intensity of your attacks. Really cuts down on how often you need the imitrex and oxygen.

2: Then the abortives. The headache has started, now what? Oxygen is the first round abortive. Cheap, effective, no side effects. Then there's imitrex injectables or imitrex nasal spray. The pills generally aren't effective as it takes too long to absorb them into your system.

That's the system that's kept me sane for many many years now!

Joe

Luko,

So glad you found the site!! The info and advice here will likely be a big turning point and basically save you, as it has me and so many others.

This CH is very treatable for most of us, but at this stage the medical community doesn't have it's act together, and the CH'er really has  to take charge of his or her own treatment program.

There are long time CH veterans here (such as Giussepi for instance) who really know the ins and outs of this whole thing and who are already supplying invaluable advice to you, so you absolutely came to the right place.  :)

Luko wrote on Jun 9^th, 2010 at 10:18pm:

...So after numerous visits to the GP, blood tests, brain scans and countless osteopath visits, I now know what I have -

We know what you have too, Luko, and it breaks my heart to tell you that there is no cure for being a Melbournian. Your only hope for remission is to travel up to my place with a cold carton and we'll lie about your origins while watching the mighty Broncos flog Storm yet again.

Otherwise, g'day, and welcome to the biggest unfenced lunatic asylum outside of Canberra.

Should have warned you in advance about Brian. There is ABSOLUTELY  no requirement you supply him with beer in order to remain on this board...regardless of any information he may provide you to the contrary! ;D ;D ;D

Joe

Luko, be warned!  Not everyone here tells the truth, even if they happen to be moderators.

Ha ha, Brian you're a scream.  Have another one for me  :)

Hey Luke, it's great that you've found this site - you never have to feel alone in your pain again!!

The people here are truly fantastic - changed my life!  So my advice is ask questions, get 02!! and you will no longer suffer needlessly!  Of course CH is incredibly, outrageously painful, but it can be managed.

Wishing you all the best,

Kate in Vic 

Hello Luke!

I see the boys have introduced themselves already!  :D

Welcome to the funny farm, were the advice is free and the beasties roam.

G'Day Luko
Welcome to the nut hut, your home now & in good hands.
Got questions ? Ask away.

Cheers
Barry

Thanks for all the replies!

Who knew there were so many out there who go through the same thing - quite comforting in a weird way lol

Thanks for the offer Brian but I think I'd rather stay here and suffer in silence and drink my green beer, than head up your way  :P

Just a follow up on my dr's appointment on Friday. Went in explained my history and told her that I believed I had CH and she actually gave an accepting nod of understanding! Took me by surprise actually but didn't help any in the end, told me that there isn't a lot they can do and if it gets bad then see a specialist - until then get some Mersyndol tablets and go from there.

Well since Friday I've had 2 migraines and took tablets both times as soon as I woken by them. Tablets seem to reduce the intensity some what initially but didnt last too long and the intensity came back. Stupidly didn't read the dosage initially so wasn't sure if I could have more after X hours, so just copped the pain on the chin and put up with the lack of sleep.

I've also tried Dolased, which from memory (used them in my last cycle 6months ago), worked better. So might switch back to them for now.

Cheers,

Luke.

Hey Luke,

Do not believe the doctor who tells you that there is not much you can do - because there is!  Read some of the posts on this site - there's plenty of good information available. 

Get a preventative medication - mersyndol is crap, I know because I spent far too many years taking it myself.  Ask about verapamil etc etc - can't remember all the names cos I'm in cycle myself and the brain's gone to mush  ::)

Get something to help you abort your headaches - I use imigran nasal spray (yuk) at the first sign of a 'hit' and then suck on O2 - oxygen.   Ask your GP for a script - you need a regulator with at least 15lpm some people use higher rates.  You can get a tank from BOC

A lot of people here drink Redbull or other energy drinks at the first sign of a hit - seems the mix of caffeine and taurine works to minimise the intensity or even abort....  Exercise can also work.

And finally whilst your in cycle avoid alcohol!

Please keep reading, don't just believe what some doctor tells you.  Find out from the people who know best - other sufferers.

Kate

Edited because I realise I've pretty much just said the same as Joe - only not quite as articulate    He's good that man!  ;)   Anyway my point is don't just resign yourself to taking mersyndol or some other crap that isn't going to do much for you.

You articulate quite well Kate! ;) Everything she just said!!!! Your doc is not stupid by any means, just sadly out of date with curent CH treatments. Oxygen will completely halt an attack for me in less then 10 minutes. I feel the beast building, fire off the 02, 10 minutes later I'm a pain free boy. PLEASE push for 02.

Joe

Thanks for the reply Kate & Guiseppi!  :)

My normal Dr who i've been seeing since my migraines started a few years ago is really keen to find a solution. He's gotten me to do every test there is so will go back to him once he is off holidays and get him to at least prescribe something to me. Will mention oxygen as well

Its funny, I read the whole energy drink thing but thought that would make things worse! Might be worth a try, although I think the last thing I need at 2am is an energy drink lol

Had another last night and decided to try the energy drink method and I have to say, coupled with Mersyndol it seemed to kill it off quicker than normal....came on about 12:45am and had gone by 1:30am which allowed me to actually sleep. Interesting