This is extremely off-topic from anything I’ve ever blogged about, but I’m desperate to hear from anyone who has experience with narcolepsy and cataplexy. For the past two years I’ve been struggling with several increasingly debilitating symptoms involving my sleep. If you have narcolepsy please please leave a comment or send me an email. Thank you for reading, an I’m sorry this is so long:
Four years ago I was in an accident (run over by a pick up truck on a sidewalk at school…I was struck in the back of the head by the bumper and knocked out for a few seconds) and diagnosed with a grade 2 concussion. Since then I’ve had more trouble with short term memory, concentration, learning new information, I began experiencing auras with my migraines and episodes of “blanking out” during conversations. I’ve had a normal EEG and a normal neuropsych evaluation (which was pretty much useless since I hadn’t had one before the accident so there was nothing to compare it to).
I’ve experienced sleep paralysis sporadically (once every few years) throughout my life, but about 18 months ago I started having multiple SP episodes a night. I have a very clear memory of when the episodes got bad because that morning I had “fainted” at breakfast while reading the paper. I was seated at the kitchen table reading an article about a girl my age who had been run over by a train. I recall having a very strong emotional reaction to the story, and then hearing an increasingly loud roaring noise, a strange feeling of dryness throughout my body, intense nausea and seeing spots similar to my migraine auras. According to family members, I fell over sideways and hit my head on the windowsill. I was unresponsive for a few seconds, but upon waking I was fine aside from slight weakness in my right arm. I spent the day in the ER being checked for signs of seizures or a stroke, but was sent home with a paper about low blood sugar and fainting. A few things bothered me about this episode:
1. I know it wasn’t low blood sugar because I’d already gorged on Christmas cookies and orange juice.
2. I was seated (and had been for about fifteen minutes prior to the incident).
3. I had a brief, but intensely vivid dream while unconscious…though I could hear my family and feel myself being moved. It was very odd, like being in two worlds at the same time.
That night I had two or three very scary SP episodes. Since then I’ve had up to 6 episodes a night, and haven’t gone a full week without an episode. At first I thought I was having seizures in my sleep, or asthma attacks, or [i]something[/i] because I knew this wasn’t normal. The episodes seem to snowball on each other…I’ll wake up from one overwhelmingly sleepy, somehow start dreaming again without noticing I’m asleep and have another SP episode over and over again. I get them falling asleep…I get them waking up…I get them [i]without fai[/i]l when napping. My primary care doctor told me it was stress, so I started reading to clear my head for 30 min before bed. Didn’t work. Got a prescription for 0.5 mg lorazepam. Didn’t work. Changed sleeping positions (several times!). Didn’t work. Changed bedrooms. Didn’t work. “Gain a few pounds, you’re underweight.” Didn’t work.
I mentioned the episodes to my pulmonologist (who’s also a sleep specialist) last summer and was given a PSG. Surprisingly the results came back abnormal. I spent twice the normal amount of time in stage 1 sleep, only had 10 minutes of REM as well as shortened stage 3 and 4 sleep, and had sleep disordered breathing (more episodes during REM, he hypothesized my body was avoiding REM because it was more uncomfortable). He diagnosed me with extremely mild OSA due to an oversized soft palate and set me up for a CPAP titration study. The titration study was the same as the first, and they were unable to find a good pressure for me. The summary noted “THIS IS NOT AN IMPROVED SLEEP STUDY,” but I was given a CPAP anyway. I’ve been 100% compliant with the machine, but the SP episodes have continued. For the first few months I felt better rested with the CPAP, but now I’m fighting sleep by 11 a.m. in spite of the 8+ hours of sleep I get.
All of this led me to my third neurologist, who tentatively diagnosed me with narcolepsy in the first five minutes of my visit. He said I’ve probably had it since early childhood, but it was exacerbated by the concussion…and the weird “fainting” episode was probably cataplexy. The false awakenings and vivid dreams I have immediately prior to or during the SP are probably hypnogogic and hypnopompic hallucinations. (I’ve been hallucinating and haven’t noticed?!) I’ll have trouble distinguishing what happened before I fell asleep or just after waking from my dreams.
(Also, my 21 year old sister frequently experiences SP, but to a lesser extent than I do. She is also using a CPAP but continues to have trouble staying asleep at night and is exhausted during the day. My father has severe OSA, but of the three of us only he is overweight.)
I’m being sent for my 3rd PSG and an MSLT next week and really don’t want to be set up for more disappointment. I’m afraid that the MSLT will come out normal and I’ll leave without an explanation for the SP. But at the same time, I’m scared of what a narcolepsy diagnosis may mean.
Do my first PSG results sound anything like narcolepsy?
Does the fainting episode sound like cataplexy?
Are there any other treatments for SP besides antidepressants or Xyrem? (I was hospitalized for serotonin syndrome after taking 5 mg of celexa, so anything that touches serotonin is out…and I have an awful fear of vomiting so xyrem terrifies me.)
If I am diagnosed and choose not to take medication, will I lose my driver’s license?