Hi my name is Tony, I am in the South east of England. I have suffered episodic CH for 25 years but was only diagnosed last year, with 4-6 attacks a day and night, for three months a year, sometimes twice a year. Nothing compared to some people on here.

It seems hard work to get help in the UK, because I'm told there are only 500 of us here.

Welcome to the board, you have much to learn about CH, there are numerous treatments available that can allow you to lead a normal life. First off, check out   clusterbusters.com     a site dedicated to non traditional treatments for CH. They've been turning out some amazing success stories for people when traditional treatments failed.

The rest of us rely on a two pronged sytem for dealing with CH, a preventative and an abortive.

1: A good prevent. A med you take daily, while in cycle, to reduce the number and intensity of your attacks. I use lithium at 1200 mg a day, blocks 60-70% of my attacks. Verapamil is probbaly the most commonly used prevent, but at doses higher then  most docs are used to, with some going as high as 960 mg a day to get relief. Some use Topomax.

2: A good abortive. Oxygen should be your first line abortive. I can stop my attack dead in its tracks, in as little as 6-8 minutes, by breathing pure oxygen. Read the oxygen info tab on the left for details. If you go the clusterbuster route, you'll need the oxygen as you have to de-tox from all standard meds and 02 is about all you can use.

Imitrex injectables and nasal sprays are commonly used abortives, the pills less so because they take too long to be absorbed for most to be effective.

Energy drinks, red bull rock star etc, any containing the combo of caffeine and taurine, chugged at the first sign of an atack, will abort or reduce an attack for many.

Stay off the weed while in cycle, a vaso dialator, exactly the opposite of what you want to fight CH! ;)

You need a qualified "Headache Specialist Neuro" to have any chance of a decent treatment regimen. If that's not possible at this point, then do read up on the clusterbusters site. Good luck, glad you stumbled on us!

Joe

ayup Tony new here myself mate just posted a day or so ago, seems you have been suffering the same length of time i have before being told what is was.
there's some good folk on here with good advice i'm still trawling though the site.
just got to have fight with my doctor now over the correct medication which i dont think i'm getting, hope it works out for you keep in touch

Mike :)

Fight with the doctor; I know that feeling, good luck with that mate, let us know how you get on.

Guiseppi wrote on Nov 22^nd, 2010 at 8:55am:

Welcome to the board, you have much to learn about CH, there are numerous treatments available that can allow you to lead a normal life. First off, check out   clusterbusters.com     a site dedicated to non traditional treatments for CH. They've been turning out some amazing success stories for people when traditional treatments failed. The rest of us rely on a two pronged sytem for dealing with CH, a preventative and an abortive. 1: A good prevent. A med you take daily, while in cycle, to reduce the number and intensity of your attacks. I use lithium at 1200 mg a day, blocks 60-70% of my attacks. Verapamil is probbaly the most commonly used prevent, but at doses higher then  most docs are used to, with some going as high as 960 mg a day to get relief. Some use Topomax. 2: A good abortive. Oxygen should be your first line abortive. I can stop my attack dead in its tracks, in as little as 6-8 minutes, by breathing pure oxygen. Read the oxygen info tab on the left for details. If you go the clusterbuster route, you'll need the oxygen as you have to de-tox from all standard meds and 02 is about all you can use. Imitrex injectables and nasal sprays are commonly used abortives, the pills less so because they take too long to be absorbed for most to be effective. Energy drinks, red bull rock star etc, any containing the combo of caffeine and taurine, chugged at the first sign of an atack, will abort or reduce an attack for many. Stay off the weed while in cycle, a vaso dialator, exactly the opposite of what you want to fight CH! ;) You need a qualified "Headache Specialist Neuro" to have any chance of a decent treatment regimen. If that's not possible at this point, then do read up on the clusterbusters site. Good luck, glad you stumbled on us! Joe

Great advice from Joe in the know... :)

Nice one Joe, had a look at a couple of your suggestions last year; like Zomig abortive and Seroxat preventative. Will check out the others, the doctors don't seem very forthcoming and it's nice to have a few ideas before I visit them. Thanks fella.

RasIbo wrote on Nov 22^nd, 2010 at 2:09am:

It seems hard work to get help in the UK, because I'm told there are only 500 of us here.

CHs affect about 1 person in 1000, so there are likely to be about 60,000 people in the UK with CHs.

RasIbo wrote on Nov 22^nd, 2010 at 1:55pm:

Nice one Joe, had a look at a couple of your suggestions last year; like Zomig abortive and Seroxat preventative. Will check out the others, the doctors don't seem very forthcoming and it's nice to have a few ideas before I visit them. Thanks fella.

Sadly, CH is a disorder that many doctors will never see in their whole career, so the chances of finding a knowledgeable doc, up to date on current treatments are pretty slim :(

Your best bet is to educate yourself, and work with a good neuro to get what you need.

Joe

Go to "Frazzell's" message in this section and see my reply--will save me much typing since you share the same interests and issues with your health service.