Fill in the blank: My most frustrating narcolepsy symptom is _____.
From excessive daytime sleepiness to vivid dreams, what is your most frustrating symptom of narcolepsy? Share in the comments below!
Cataplexy. I can live with being tired, Cataplexy is what turned me into a worthless human.
My heart goes out to you. Do you take any medication that helps? Gentle hugs. - Lori (Team Member)
The most frustrating for most narcoleptic patients has to be the extreme sleepiness when you have appointments, plans, or just things that need to get done. The sleepiness is totally debilitating for some of us.
That has to be the number one complaint of people with narcolepsy and the most misunderstood symptom. Do you take any medication to keep you alert during the day or have any strategies that help? Have you been diagnosed long? Warm wishes. - Lori (Team Member)
falling asleep mid sentence. or waking up not knowing where you are.
That has got to be frightening sometimes. Gentle hugs. - Lori (Team Member)
EDS
sadly yes. Wakix 35.6mg, Nuvigil 250mg twice/day. Still struggling though. I've had type 2 since at least 2010, but was "lost to follow-up" until a doc at the Cleveland Clinic pieced everything together. I'm still trying to improve routines and nighttime sleep (Xywav, 4.5 + 4.5), it's just a much longer process than I expected. I'll get there! And I better change my username… I like the new username! I hope you find a medication regime that works for you and that brings some stability into your life soon. That's not an easy task. Know that we're here for you whenever you need us. - Lori (Team Member)
