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!
Skipping meals and being too tired to care or cook, leading to feeling just terrible and stomach problems often because I tend to eat whatever is convenient. After work, I am usually incredibly tired and my afternoon "nap" sometimes becomes hours long so it is later in the evening than anyone should be eating dinner. Has anyone else experienced this and what have you done to overcome it? Maybe sharing quick easy recipes would be helpful for all members experiencing this.
Hi
. Welcome to the community! You are definitely not alone. Here is an article about that very issue that might interest you: https://narcolepsy.sleep-disorders.net/living/healthy-eating-tips. I love the idea of sharing recipes. That would make a great topic for a forum post. Here is a link to the forums if you would like to start one: https://narcolepsy.sleep-disorders.net/forums. If you'd rather I create it, just let me know. I'd be happy to do it.
Have you been diagnosed long?
Wishing you the best. - Lori (Team Member)
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)
