Living with Sleep Apnea

I’ve been exhausted all my life. I woke up at age 40 after being told I had sleep apnea. Went to a sleep doctor, had an overnight polysomnogram (or PSG- doesn’t hurt, easy, just weird to do). Started on CPAP treatment (it really helps).

Upon starting treatment I had what is called REM sleep rebound (extra dreaming that had been repressed because I wasn’t sleeping due to the apnea). After still being really tired, I had another overnight polysomnogram followed by a multiple sleep latency test (MSLT- nap test where you are told to try and sleep at 8 am, 10 am, noon and 2 pm - you get 20 minutes to fall asleep, if you do, you are allowed to sleep for 20 minutes and then are awakened).

The results of both polysomnograms and the MSLT showed that I had my average sleep latency (time it takes to fall asleep) was about 4 minutes. It was weird because, I could have sworn that I did not fully sleep during the naps, but my brain waves showed otherwise. These tests also showed that on a total of six sleeping periods (2 from overnight PSG and the four naps during MSLT) that showed sleep onset REM.

Your body cycles through the sleep stages (I believe there are 4 stages including REM sleep). In narcolepsy, your body does not go through the sleep stages correctly - normal people start at stage 1, cycle through all the stages with REM sleep occuring about 90 minutes after you fall asleep. In narcolepsy, you skip the normal order of the sleep cycle and go immediately into REM sleep. When sleep onset REM occurs you actually start dreaming before you are fully asleep - causing a whole host of problems - hypnogogic hallucinations (seeing, hearing things - for me, I hear all kinds of weird sounds - people talking, turkeys gobbling (I live in a large city) or strange electrical-popping-snapping sensations that seem to come from my head). Sometimes I feel paralyzed and can’t move and my chest feels really heavy like someone is sitting on it. For every human, narcoleptic or normal, your entire body is paralyzed (except for your eyeballs and respirations) while you are in REM sleep. Normal people can have experience this paralysis as well, I believe when you are extremely tired. In my teenage years, I had what I called “out of body” experiences that I now realize was the paralysis.

The treatment for my narcolepsy includes prozac, ritalin, concerta, provigil. I’ve only one bad episodes of cataplexy (loss of muscle tone triggered by emotions such as laughter, anger, fear). I got frightened while walking at a city park and fell completely to the ground smashing my nose on the pavement, blood everywhere, unable to break my fall.

In spite of all this, I still find beauty and joy in my life and the world. In some ways, these illnesses have caused me to see all the goodness in people. It’s a challenge, but you can live a near normal life! That’s my story, thanks for letting me share it…