Hello everyone.
I've been reading other people's posts here and decided to introduce myself.
I am male, 5'7", 145lbs. I am 27 years old and have been suffering from episodic CH since I was about sixteen. Most years I get CH 1-2 times a day, lasting up to 6 hours (wierd, right?) each, for about 2-3 months. I've usually had to quit working during this time (right around christmas), and slip into a deep depression.
I was a light cigarette smoker (<1pack) for many years, but gave that up a year ago. I smoked pot habitually (more than twice a day) for many years to deal with depression, but have also now given that up, hoping to get a better job, but I can't think about that while I'm in the cluster.
When I first started getting CH, I was misdiagnosed and given many drugs that did not work. I was quite disenchanted with doctors, and for many years I did not see any. I just lived with it. I saved up money knowing there would be at least a couple of months of unemployment at the end of the year, which never really panned out.
I found that taking obscene amounts of Kudzu extract and capsiacin seemed to help. Switching to "the bland diet" as I call it helped. Accupuncture stopped the cluster once years ago when I had electricity run through needles in my right hand and foot. I cannot find anyone who offers this therapy now, and other forms of accupuncture do absolutely nothing but burn through my money.
I'm married now to a woman I've been living with for over ten years. I'm trying to find a way to keep working to try to have a family. I've been seeing doctors again. Right now I'm finishing up a week of prednisone, and I'm on Verapamill, and I'm getting generic Imitrex injections at $25 a pop. And It's not working.
In fact I feel like it might me adding to the intensity and duration of the episodes. Yesterday I had two severe episodes that caused me to use two of the injections, hanfulls of otc pills, intranasal capsiacin, and nothing worked. I'm still having shadows from it this morning.
I know we're all looking for a cure, and my case is certainly not the worst I've heard about. I'm very happy to hear the success stories of others, and I'm studying them closely.