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!
I have insulin resistance so when my blood sugar spikes or drops I pass out. Normally, I would get sleepy or groggy but coupled with narcolepsy I just pass out into this trace where I’m paralyzed and sometimes with cataplexy my lungs or I don’t even know but it just gets hard to breath like my mind forgets so I have to remind myself. And it hurts after sometimes when you fall into positions that are unsupportive. I always sit up with my hand under my chin but I’ve fallen asleep so many times like that that it’s kind of just makes me sleepy, but if I don’t my head will hit my computer or I’ll risk like compressing my throat with my chin to my chest. Also when I’m stimulated too long like on devices I start like twitching and my brain fizzles out same when I find something really funny, my automatic breathing function shuts down and I’m gasping for air.
I see you're new here,
. Welcome! My heart goes out to you. All those triggers must make any sense of normalcy difficult, if not impossible. Do you have much support from those closest to you? Do medications for narcolepsy and/or diabetes help? Sending lots of gentle hugs your way. - Lori (Team Member)
Cataplexy and Excessive Day time sleepiness are both equally the most frustrating symptoms. Cataplexy is because my extreme dependence on medication. The side effects caused by the medication caused me to develop lymphodema in both my legs. The lymphodema can cause cellulitis randomly and put me in the hospital for at least three days. I have found that doing lymphatic therapy had helped. However I need to go three days a week for an hour each visit. The excessive day time sleepiness of course effects my ability to drive depending on how I am feeling. It is very inconvenient. Thankfully I have a great support system. It just gets frustrating to ask for a ride so much.
It can be so frustrating when treatment for one condition causes another. I'm glad you have such a good support system. They probably mind giving you rides far less than you mind asking for them. I know that doesn't make it easier though. Gentle hugs. - Lori (Team Member)
Realizing that I’m falling asleep during an important work meeting and am completely helpless to do anything about it.
Hi
. I imagine that's stressful when you realize you have no control. Is your employer understanding and supportive of you? - Lori (Team Member)
I had to retire because of my falling asleep and an understanding and unsympathetic boss.
That seems so unfair. Are you managing well financially? - Lori (Team Member)
