I have viewed the message board here since my first cluster in 2004. And have leaqrned a lot - thank you all.

I have episodic CH - with idiopathic stabbing and clusters coming only in the fall and lasting 8-12 weeks. Fortunately I have successfully prevented my CH completely with carbamazapine.

Here is how it works...I get a strange foreshadowing of a cluster...my cheek goes numb, I get twingy pains in my face, and then I start to get daily headaches at the same time every day - not too terrible...maybe a 4. Then I know I am starting a cluster and I start on the tegrerol...beginning at 100 mg the first day, 200 the second, 300 the next, then 400mg. I stop there and sometimes I get no more headaches, no breakthrough at all, so I stay at that dose for the entire time. Occasionally I have to increase up to 800 mg, but often 400-600 mg does the trick. I stay on it for at least 6 weeks, then slowly start to taper off. If I get a breakthrough headache or stab, I immediately go up one dose, and stay there another week, then try again. Usually after 8-12 weeks the cluster is over.

Until this year, I have had zero attacks of the beastly kind since on carbamazapine. This fall (after 9 years) I had to go to 900 mg, plus 200 mg of indomethecin and still had a couple of beastly attacks breakthrough. Unfortunately I had no imitrix or O2 since I have never needed it.

And now, for some strange reason, I am in a second cluster - a spring one - currently working my way up on the tegretol.

Here are a few thoughts which I would love some feedback on...the only two times I have had 2 clusters in a year and have had to go to 900 - 1200 mg is when living in Calgary, Alberta (4300 ft above sea level). The years in between this year and my first year I lived closer to sea level. I suspect the high altitude here actually makes it worse for me??

The second curiosity is that I suffer from sleep apnea - only when in a cluster...not sure which comes first - but presumably the apnea triggers the cluster??

Anyway, I just wanted to share my drug experience in case it is something others might want to try. And feedback on the altitude and apnea would be interesting.

I don't know about the sea level, but having started these while living in FL (definitely not above sea level in most places) I do not think it is a primary cause, although it might be a contributing factor. Don't know. As to sleep apnea you can run a search here and find threads documenting that we have a higher percentage of members with sleep apnea than one would find in the general population. Again, it does not appear to be a cause of the CH but a contributing factor, perhaps. Although I am a chronic, I don't get hit at night always. Although according to my wife, I always exhibit some form of sleep apnea. For me, REM sleep is a much more constant trigger. Welcome to the site, and I'm glad you have a medical intervention working for you. Others have posted about carbamazapine as well as indomethacin. Good luck and God bless! lance

I live just a few metres above sea level and I don't get sleep apnea. Equally I don't smoke and alcohol doesn't act as a trigger for a CH.

So we're all different and there are exceptions to each "rule".