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RasIbo

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Recently diagnosed after 25 years
Nov 22^nd, 2010 at 2:09am

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.

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« Last Edit: Nov 22^nd, 2010 at 1:09pm by RasIbo »

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Guiseppi

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San Diego to Florida 05-16-2011

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Re: Recently diagnosed after 25 years
Reply #1 - 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! Wink

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

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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Frazzell

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Re: Recently diagnosed after 25 years
Reply #2 - Nov 22^nd, 2010 at 9:05am

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

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RasIbo CH.com Newbie Offline I Love CH.com! Posts: 16	Alright fella Reply #3 - Nov 22^nd, 2010 at 12:41pm Fight with the doctor; I know that feeling, good luck with that mate, let us know how you get on.
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mikstudie

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Re: Recently diagnosed after 25 years
Reply #4 - Nov 22^nd, 2010 at 1:32pm

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! Wink

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...

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IT'S JUST A HEADACHE,TAKE TWO ASPRIN AND GO TO BED!!!

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RasIbo CH.com Newbie Offline I Love CH.com! Posts: 16	Re: Recently diagnosed after 25 years Reply #5 - 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.
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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: Recently diagnosed after 25 years Reply #6 - Nov 22^nd, 2010 at 1:56pm 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.
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Guiseppi

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San Diego to Florida 05-16-2011

Posts: 12063
SAN DIEGO, CALIFORNIA USA
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Re: Recently diagnosed after 25 years
Reply #7 - Nov 22^nd, 2010 at 2:00pm

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 Sad

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

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: Recently diagnosed after 25 years Reply #8 - Nov 22^nd, 2010 at 3:12pm 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.
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