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!
My biggest difficulty is to get going in the morning. A tiny speck of carb, and then I'm crashed out for several hours. I have a script for Dexadrine extended release, I'll take some of that FIRST in the morning, then some sugar free chocolate. Then I'll attempt some sausage. If successful, then I'm fine for the rest of the day.
I just started a script for Naltrexone. It has changed my dreams from nasty Twilight Zone, to All in the family, and I usually forget the dreams after 30 seconds.Hi
. I'm glad Naltrexone is helping. Researchers are finding all kinds of new, off-label uses for it. I hope the reduced nighttime stress helps with your daytime alertness, if even just a bit. - Lori (Team Member)
My cataplexy is one of the biggest issues. I am able to control it with medication but if I am really struggling with being awake it will kick in
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) Dexadrine has dramatically helped me with day time sleepiness. I don't take the full 15mg, just a couple mg at a time. And definitely, don't take any after 4pm.
