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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> New to the site, not so new to CH
        
(Message started by: georgej on Jun 24^th, 2006, 2:27am)

Title: New to the site, not so new to CH
Post by georgej on Jun 24^th, 2006, 2:27am

'Evening.

I've known about and monitored this site for the past six years. Can't tell you how much useful information I've gotten here about the Demon. I'm 53, have wrestled with CH since I was thirteen. I know him well. Very well indeed.

He's always been predictable as sunrise and sunset, my Beast. Spring and Fall, like a metronome. When I was younger, the cycles were six months apart--now they're three years apart. I get them at night in the first REM cycle of sleep, and they typically last for two or more hours. In the middle of the cycle, they occur two days apart--at the end, the headaches get farther and farther apart, until they fade into remission, normally within six weeks. I realize that, as these things go, I've been very fortunate. When they happen, though, they're as bad as anything gets--I get the usual eye and nasal discharge, a red and swollen left eye, Horner's syndrome, and the sweats. Lots of pacing, whining, head-banging and begging. I won't even smell alcohol when I'm in a cycle.

I went through the usual pain medication early on, but nothing even touched them, so I gave it up. I had courses of Sansert, caffergot, and most of the usual stuff given to us thirty years ago, but nothing worked. Since around 1975, I've elected to go untreated, and have let them take their course. Frankly, I'm afraid to mess with them.

Some things I've found that help somewhat:

6 to 12 milligrams of melatonin can get me past the 2:00 AM headache at the beginning and end of the cycle.

The non-prescription antihistamine chlorpheneramine maleate can alleviate a shadow.

Oxygen.

Some things that don't help:

Red bull.

The water X3 treatment.

Any pain medication.

Getting near the end of the cycle now, so life is good. In general, I think it's very good anyway. I love this life. Obviously I must, since I'm still here. As all of you know, in the depths of the night, and in the grip of the Demon, it's all too easy to ponder dark alternatives.

Best wishes to all of you.

George

Title: Re: New to the site, not so new to CH
Post by Jasmyn on Jun 24^th, 2006, 4:12am

Hi George, it is good to see you posting. :)

Title: Re: New to the site, not so new to CH
Post by LeLimey on Jun 24^th, 2006, 5:27am

Welcome from me too George, its nice to meet you and its good to see you're well up on ch treatments! The worst bit about this condition in my opinion is that what works for me won't necessarily work for you and vice versa - makes it difficult to treat.. but working together we'll all get there! :)
I can understand your reluctance to go down the med route, it gets so hard keeping trying things that just don't work however I would like to add things have changed ALOT in ch meds since 1975. We have triptans to abort now and pred tapers while verapamil kicks in.. alot of people have found success with it and I wouldn't like to see you discount it without reading about it. It could make such an amazing change in your quality of life. Then there are alternative meds too such as Kudzu which you can read about here and others you can read about in more detail at www.clusterbusters.com
Whatever you decide to do, medicate or not, we'll back you 100% of the way and be here to support or let you vent! You're not alone with it okay?!
Take care of you,
Helen

Title: Re: New to the site, not so new to CH
Post by MJ on Jun 24^th, 2006, 11:11am

Welcome.

Title: Re: New to the site, not so new to CH
Post by Richr8 on Jun 24^th, 2006, 11:23am

Hi George! Welcome!

It sounds like you've got this figured out. It sucks, oh well.

I like your attitiude and wish you many PF days and nights.

Title: Re: New to the site, not so new to CH
Post by Sandy_C on Jun 24^th, 2006, 2:09pm

Hi George, and welcome to the family. You seem to have a pretty good attitude with regard to your CH, and, in my opinion, attitude will either make you or break you. Life is good, even with CH - it's better than the alternative.

Glad you decided to join us. Someone is always here , so feel free to jump in with questions, answers, support, and vent when you need to.

Sandy