MrsT
CH.com Veteran
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I Love CH.com!
Posts: 100
San Diego, CA
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Hello, everybody. I was active at CH.com when the site was still very young........about the time Dr. Greg joined here.
I was diagnosed in '85. Imitrex has saved my life since. My cycle was pretty predictable; I used to get 24 then 18 months off between 10-12 week episodes, but for some reason I was in good 6 years of remission with not-so-bad solo attacks a couple of times a year. Then I had an extremely stressful and emotional event 4 months ago, and the beast is back.
I've never been a pacer or a head banger during the attack (about 60 minutes). I hold my head against ice packs, curl up while sucking O2, and just sit/lay still. It's so draining that I usually have to nap afterwards.
For years, the standard "Verapamil, Imitrex, and O2" combo worked well for me, and my 8L regulator with a standard facial mask work just fine (might work better and faster at 15L, but I wouldn't know). It used to reduce the frequency from 5x a day down to 5 a week, with less than half the intensity. The KIP scale doesn't describe my pain too well, however..........
Heat is a no-no for me. Anything that dilates blood vessels, even a slightest exercise, is a no-no. In my worst days, stirring a steaming pot or sticking my head in the oven triggered an attack. Quickest luke-warm showers still trigger an attack. Extreme photosensitivity, and it takes about 5 minutes of direct sun triggers an attack.
I have no "body clock" (gee, a surprise?), so I sleep anywhere between 2 and 10 hours whenever I'm sleepy.
It's been 4 months this time. I thought headaches might have been solo attacks or a very mild episode----maybe one every couple of days, not TOO bad a pain for 3 months without Verapamil. After a week of no headache, I thought about taking a sip of wine to see if I'm out of the season (I didn't). I hardly drink, and one sip can trigger an attack during episodes. Instead, I started getting 1-3 attacks a day about a month ago, so it was time to get on Verapamil. So the pattern seems to have changed. As always, I'm so afraid to go chronic. I'm sure I'd find a way to live with it, but my utmost sympathy and admiration to chronic clusterheads!
I've been cruising back on this site for a couple of weeks, so I thought I should say hi......... I was involved in a different area of study for a few years, and I didn't even think about CH in this past remission. This time I'm taking Melatonin at night. Not sure if it's doing anything. I quickly upped it to 9mg about a week ago, but I stay up all night without a problem. A bad experiment was to set the alarm before the first REM sleep; I didn't have a headache all night, but I was tired all day the next day. I've tried going to bed at midnight, 3 AM, 5 AM, 7 AM, etc., but when the HA wakes me up, that's exactly in 1.5 hours. Still have no idea how I sleep through the night when don't get an attack. Afraid to go to sleep, take a bath, go outside, or even cook. Fatigue and slight constipation from Verapamil as usual. This does get old.
I'll continue to read the log to see what others have to share. One quick question is the melatonin dosage. Apparently there's no established toxicity level, and one CH study administered 10mg? 9mg that I'm taking doesn't sound like a high dose at all. Have any of you found a much higher dose to be effective?
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