I have had three sleep studies. Next week I'm having my fourth. This all started because one day, three years ago, a day in March, I felt oddly sleepy. Like I had jet lag. The next day, the same. Next day, the same. It went on for months. I was taking five naps a day. I started falling asleep at stop lights. Falling asleep at my desk. I'd get up, have breakfast, and fall asleep at the kitchen table.
The first study determined that I had "moderate sleep apnea". I'd thought I'd slept very little during the study, as well, but had apparently slept okay. The CPAP company brought me a machine a week later. They said "Just wait! Tomorrow you'll be a new man!" I used it that night and I was the same man. I used it for six months. No difference in my daytime sleepiness. Sleepy all day. Falling asleep five or six times a day. Endless naps. Terrible.
The second study was to determine if the machine was working, was eliminating my apnea, my constant waking up, and if not, find out what setting on the machine, the apnea machine, with the mask, was best. I slept with their machine, their mask, and they determined that with the machine set at "6" all of my sleep apnea disappeared. No more waking up. No more snoring. No more restlessness. Etc.
I went home with a new machine that was set at 6. I used it for six months. No difference. Sleepy all day. Falling asleep at the dinner table. I couldn't get any work done. It was ruining everything.
In the third study I used a computerized apnea machine that changed the intensity of the air as needed. The doctors, reviewing the data, said that it had worked beautifully. I took this machine home. I was to use it for four months and then send the doctor the computer chip from the back of the machine. For those four months there was no change in my sleepiness at all. Still taking many naps. Falling asleep at work. Falling asleep at lunch.
I started to hear about a lot of other people with CDS, Chronic Daytime Sleepiness, or EDS, Extreme.
In the meanwhile, I have been tested for just about everything. Narcolepsy. Epstein Barr. Low testosterone. MS. I have had two MRIs. I have tried various medications. One helped for a while, Provigil, but then stopped being effective.
Next week, I have my fourth sleep study, a nighttime AND daytime study. The whole next day I'm hooked up and in their sleep room. I'm glad. That's smart. They've never checked me when I was actually sleepy in the daytime before.
This has been going on three years now and it's affecting everything. My work. My friendships. I can't date. I'm nervous driving. No one believes me because sometimes I seem fine.
I'm only truly awake for about six hours a day. Otherwise, I sleep for eight at night and then I battle sleep for about ten hours, often giving in. When I try to fight it, go out, go to the gym, I just lie down on a mat at the gym and fall asleep.
I have been contemplating suicide for about a year now. It seems a drastic reaction, but I have very little life left.