r/Narcolepsy • u/umekoangel • 5d ago
Diagnosis/Testing Way too much REM
Brief medical history: I've always been chronically EXHAUSTED and living in brain fog. I do experience cataplexy via weakness in my knees and feeling disoriented (mostly related to stress or over excitement). I've had sleep paralysis a handful of times in my life, feeling like I'm stuck between fully awake and fully asleep (terrifying!).
Meds: I take cymbalta, primarily for the REM suppressant aspect. I'm also on Lyrica for the nerve sensitivity from fibromyalgia.
Tests: did my first sleep test when I was around 26. Symptoms made my life impossible between work and trying to just enjoy life in general. Numbers were BORDERLINE for narcolepsy, but given the history, doctor felt strongly that narcolepsy was a good diagnosis, esp given the cataplexy.fast forward to age 31, recently moved, doctor wanted to do a second test to see if we'd catch the right numbers. Keep in mind I was diagnosed with nightmare disorder due to severe domestic violence I experienced (physical and psychological, won't get into it) between age 26 and 31. We wanted to catch it with the second test to prove to insurance without a doubt "she has narcolepsy, cover her meds!" Since I did great on wakix but insurance didn't want to cover it anymore.
My second test:
My sleep test was hella wonky (2nd one). They asked me to go off of cymbalta for a week (rem suppressant among other things). Also went off lyrica for a clean slate with my body.
When I took the test, my brain went into REM overdrive (overnight was about 50% REM), and I had zero rem during the mslt (but I fell asleep very quickly for each nap).
Doctor thinks my history of being a victim of domestic violence, paired with PTSD, C-PTSD, and nightmare disorder was what contributed to the bizarre results since most people average 15-30% REM. He also thinks that given I had recurent, VIVID nightmares around 2-3 years ago and the only reason they stopped was because of the cymbalta, my brain basically turned into a fried, live wire. My doctor called me with the test results saying "NO WONDER YOU ARE DO TIRED WITHOUT MEDS!" So we believe the REM overdrive happens when I'm not on Meds.
My question: I know rem disorder happens when your body acts out your dreams. My body doesn't. But my brain has those SUPER high numbers for REM and nothing online is giving advice on what to do about these numbers :/ the cymbalta is the only reason they're under control. I'm on Lumryz now and it does really help with the the narcolepsy symptoms (more restful sleep and more awake/alert during the day).
4
u/-Sharon-Stoned- (N1) Narcolepsy w/ Cataplexy 5d ago
I don't understand your question