Hi all new here. Quick intro then I'll move onto my reason for being here...
25yo CH sufferer for 8 years, 5 years to diagnose. 2/3 bouts a year lasting 2/3 weeks - 2 per day.

Any how, onto why I'm here...

Alcohol.
I find when I'm out, drinking alcohol, I miss my 'alarm clock' but most of the info I've come across has said alcohol makes attacks worse, has any one else found this? It almost makes me want to become a periodical drunk!

Drugs.
I've not long started a new job and the sleepless nights have started effecting my work, so I'm currently going through the 'you have to understand how bad these headaches are' rigmarole and the usual 'is it like a migraine' response I'm sure most of you are familiar with. Its getting boring now. One of my colleagues over heard and sent me this (starts around 30 mins)...
Not allowed to post links, search you tube for

Drugs Inc: Hallucinogens (Full Episode)

that should get you the video

I'm not a drug user but wondered if any one had used, or thought about using to help ease, or totally banish CH altogether? (I have read forum rules, I'm not here to sell, or buy drugs more that I'd be prepared to loosen my morals to rid me of this curse) If any one does use, and would like to PM to discuss, for obvious reasons, that's fine

Going Forward.
Is it at all possible that my CH could go from being periodical to chronic? I'm not sure how I could cope if it did. Also added to that, each bout has different amounts of pain. I'm currently mid bout, and I'm at 6/7 on the kip scale. Last bout I had was more 3/4 but have had kip10 bouts before, just wondering what long term sufferers felt about how theirs vary (or not as the case maybe)

And last but not least.
Having spent the last 7 years alone, I don't feel so much so now. My wife is very understanding and I can be awful to her, especially in the hours that follow a bad episode, but she doesn't feel my (our) pain. Having never met anyone who suffers before its good to have found this site. There is nothing more insulting than when you explain it to someone their response is 'yeah, I had something like that before' no, no you didn't, you had a migraine.

So yeah, most of the time I will just be a lurking member, but I am here and I am grateful.

Hi Mickylad, glad you have found us.   

I can't answer your questions about alcohol and drugs, but there is a link on the left of your screen that may help - "cluster busters".

As for the future, yes, clusters can change from episodic to chronic and vice versa. The damn thing morphs so you never know what to expect.

When I talk about it to others I don't call it a headache. I call it trigeminal nerve compression. I may be being a little free and easy with medical terms but that IS what is happening so it is not a lie.

If you search around the site you will find a thread called "dopiest responses". It's good for a laugh. You will also find threads about vitamin D3 which has taken the boards by storm and had spectacular results.

Also check out "oxygen info" link on the left. And try chugging a red bull, really fast at the onset of pain. Something to do with the combination of caffeine and taurine. Many people have success with it. As for prescription meds, Sumatriptan (imitrex or imigran) injections are the only thing that works for me, and it works in 5 - 7 minutes. You haven't said what meds you have, so sorry if I'm telling you stuff you already know.

Finally, I'm glad you have a good supporter. It matters very much. There is "supporters corner" here on the site and she will benefit from reading.
Also stick around yourself and read all you can. You will find many hints and tips which may help. If nothing else it's somewhere to rant to people who really do understand. The best people in the world use this site and you will find all the help and friendship you need. You are not alone any more.

Take care
Maz


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Hi,
re the oxygen, it must be 100% 02 with a flow rate of 15 - 25 litres per minute, and you need a NON REBREATHER mask. This ensures you are breathing nothing but pure 02. The link on the left will tell you all you need to know.
Maz.

With regards to "do they ever go away indefinitely" ... I'll tell you a little story.

My brother is a pastor ... has a gentleman in his congregation that's over 70 years old ... hasn't had a hit in 20 years ... but still keeps his meds up to date and in the fridge at all times for fear they will come back at any time!

The moral of the story, even though many people are rid of the beast post-50 (sadly not me yet), the fear of getting another hit never leaves. People who've never suffered through this cannot understand why we live in such fear ... sadly, I'm afraid we may go to our grave with this ... if not the actual hit, the terror is almost as bad!

Hope you're getting proper help.

Red