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!
Having my excessive daytime sleepiness affect different aspects of my life. I can't enjoy my favourite subjects to the fullest because I keep falling asleep and missing out on content, missing out on memories or inside jokes between friends because I am asleep while they talk and I sometimes have to restrict when I want to make sure I don't fall asleep afterwards.
Hi
. Welcome to the community! Excessive daytime sleepiness can really be debilitating, more so than many people understand. Are those closest to you supportive? Have you ever tried any medications that promote wakefulness? Thinking of you. - Lori (Team Member)
Having the lingering urge to sleep all day long.
Hi
. Welcome to the community! It can be tough to focus with that urge always there. Are you on medication for your narcolepsy? If so, does it help? Thinking of you. - Lori (Team Member)
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.where in missouri can you find the right help? I have been looking for years. The only good doctor my daughter had retired 4 years ago, and the person they put her with told her that narcolepsy would not kill her; it would be her weight gain from all the antidepressants they were giving her . And now the Ozark Center, which is to help people, last time I took her there, which was almost 2 years ago, told us they could not help; it was not mental; it was a health problem since they are the ones who put her on all the meds Hi
. The American Academy of Sleep Medicine has a directory that might help. Here is a link: https://members.aasm.org/site/AASMMembers/Accreditation/Accredited-Facility-Directory.aspx. Is your daughter off all the antidepressants now? If so, this would be a good time for a new sleep study since some psychiatric medications can interfere with the results. I hope this helps and you are able to get her the care she needs and deserves. Warmly, Lori (Team Member)
