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 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!

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!

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. 

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!

Joe

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

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

Cheers
Barry

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.

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