CH Keith
CH.com Junior
Offline
I Love CH.com!
Posts: 41
|
This is all new to me, people who understand and message boarding, so forgive my ignorance in either area. After suffering for 19 years, the first 12 of those undiagnosed, I have to express an intense sense of gratitude just having found this site. I tried visiting several Drs, who tried various things, such as muscle relaxers, x-rays, diet, cat-scans, and not one who can identify or give a name. It wasn't until after I married my wonderful wife that she went on-line and found a name for it. I found a Dr shortly there after who knew what they were.
I am extremely fortunate that I have 2 year remissions, with scattered shadows. Back in the summer of '05 my Dr prescribed Verapimil, which I reluctantly took. No desire to take anything daily. When I stopped taking them in the winter, they came back at the same level of intensity as when they stopped. I suffered through like normal and then went into remission. Interestingly enough, they did not return in the summer of '07 as I expected, nor did they come in the winter as I thought they might. Has anyone else heard of that effect from Verapimil? I also started seeing a neurologist who recommended changing my diet as a preventative measure. No alcohol, caffeine, smoking, I avoid those things normally, but also, MSG, soy, nitrites, aged beef, CHEESE, and CHOCOLATE!! My arguement was, I eat this stuff all the time during remission and I'm not getting the headaches, so it can't possibly help. It hasn't helped to prevent the cluster headaches, but I think that there has been a benefit in reducing the shadows and some of the side effects I traditionally experience leading up to the time of the attacks. Not sure if it is really the diet or just this season is different.
I realize this is lengthy, and I hope didn't lose anyone. Mainly I wanted to express my gratitude for having a place to go when I'm emotional or I have gotten more advice on "what works" for other people who have no idea what cluster headaches are. I appreciate the intent behind it, just hard to listen to sometimes. I have gotten some great ideas from this site and my previous paragraph was in an effort to share some of my own stuff in the hopes it helps someone.
Thank you for your time, thank you for your advice, thank you for your understanding. I feel guilty to be grateful I don't suffer alone, so here's to hoping for no new cases, someone finds a cure, and many PF days until they do.
|