[Guest]

Hello!
I just found this site, directed here from the newsgroup alt.support.sleep-diorder. I am a 50-year-old male who has suffered from insomnia since the age of 10, probably caused by psycholocical problems (the shock of losing my father at that age; there was a huge loss, never recovered, of any memories of him, and what my Mom describes as a tremendous change in my personality and habits.) My symptoms sound like, yet unlike, the Non-24 etc. you describe. I am now on a SSD grant because of the tremendous impact on my life of whatever form of insomnia I suffer from, and I'm trying to find what info I can on it. Since essentially giving myself over to my body's sleep needs some ten years ago, my sleep is not good but at least I sleep some almost every day - but a day for me is between 25 and 35 hours long. Nothing I have done - drugs, light therapy, etc. - has any perceivable effect. (I have had one good week of sleep, though it still advanced an hour a day, while house-sitting in a very quiet, remote place in the country; I'm convinced that if I could find a place to live that is that quiet, things might improve; but on $550/month, it's not going to happen.) If I spend the day relaxed and unstressed, getting early-day excersize and watching what I eat (no caffein, low-fat, nothing in the evening - my evening, not the world's!) it tends towards 25 hours; any stressors tend to stretch the day out, or make sleep entirely impossible.
The thing is, I cannot nap - so by many measures, I have no sleep debt because by no method can I sleep outside the window in which my body is ready for sleep. And a lack of sleep one day makes it less, not more, likely that I will sleep the next. During the long decades before I gave over to my body's rythms, when I was trying to keep a normal schedule - even when working a swing shift - I would not sleep at all for three, four, five days at a time (my longest sleepless periods were 8 days and 11 days, the first when trying to get used to an antidepressant and the 11-day period during a time of great turmoil in my life.) I also have to avoid any kinds of stress; even a movie or TV show with violence or strong emotion will trigger a sleep delay.
I also, during those many-day sleepless periods, have suffered from a loss of body heat; my temperature has gone down to as low as about 92 degrees (I have to estimate that because even a special thermometer I found only went down to 94.) This has happened a few hundred times, fortunately not for about ten years.
I have had two somnograms done. In the first (ca. '86) what seemed to me to be the best, almost 8-hour-long, sleep I'd had in years was shown to be 5 1/2 hours of hundreds of individual sleep sessions, none more than about a minute long, no stage 4, only a few seconds of stage 3 (I don't remember about the REM) As I recall - my memory is almost pathologically poor - they found some indication of RLS and a few apneas, but thought that for some reason, going from one stage to the next seemed to wake me up. Klonopin was prescribed, which helped at first but stopped working after about a month.
The other somnogram was done about four years ago, by the Sleep Disturbance Clinic at Oregon Health Sciences University. It took about 45 minutes to fall asleep - I was unaware that I had slept at all - but I only slept for about 12 minutes; after that, there were no further sleep episodes for 13 more long, gruesome hours, though from what I remember (I am always suspicious of my memory) the doctors said that all my alphas and betas and thetas and chis or whatever the pertinant brainwaves are, showed that I *should* have been asleep but wasn't; nor were they able to say why I woke from the one sleep period I had. That somnogram didn't lead to any treatment, since apparently they had never seen such a result; but I must add a caveat here; it took me more than a month after that somnogram for my body to settle down from the disturbance of the somnogram, and I was in very bad shape during the analysis of that session, so it is entirely possible - likely even - that I missed some significant info.
About three years ago my GP decided I should try amytriptilin, which improves my sleep about 25% when taken (25mg) just before sleep. I've tried to up the dosage to see if that improves things, but more than that dosage starts to act like a stimulant. (My experience with various sleeping pills is that they would make it harder to sleep, even while making me very groggy, which experience is just awful!)
The biggest problem I've had seeking treatment, beyond poverty, is that sleep-latency tests suggest I'm not carrying a sleep debt, and that even during that 11-day awake period I had no hallucinations; which suggests I am getting sleep without knowing it, a common occurance. The only thing that that last somnogram accomplished was to demonstrate to the doctors that this logical conclusion was, in my case, incorrect; but they had no prognosis to suggest.
Any comments? If the unlikelyness of this description causes you to call my perceptions into doubt, do so without hesitation or concern for my feelings. I've gotten pretty tough over the years . . .

[Guest]

I know you have tried to tell me everything important in this email but I cannot diagnose you without evaluating you myself. Since you have been seen in two sleep centers I strongly encourage you to contact one of them for continued help. Insomnia can take a long time to correct and it needs constant attention and a full evaluation.
[quote] Hello.
I just found this site, directed here from the newsgroup alt... [/quote]