Questions & Answers

When my narcolepsy kicks in for me it sort of feels chemically induced as if I’ve taken a hand full of Ambien vs not sleeping for a few days. It’s almost like I get this slight feeling down the back of my neck, it’s hard to describe. Does anyone else get this as well?? BTW I don’t have cataplexy, not sure if it makes a difference. Please let me know if you know what I’m talking about and can describe it in your words.

Looks like a new, timed-release version of Xyrem/Xywav might be available soon that will eliminate having to wake up and take a second dose.

https://investors.avadel.com/news-releases/news...

Don't judge me. This coming September I will have 4 years clean and sober. Since I was 25 and I have abused methamphetamine. And it didn't really get me high it just allowed me to function and do things that everyone else was doing my age. Has anyone else found that they were literally self-medicating with stimulants?

Hello everyone
After reading so many stories, it seems no one ever really feels awake even with medication. Medication helps, but it never seems like enough
I am frustrated, probably like many of you, with my medication. I know it's better. I am not having sleep attacks as often I used to. I realized that early on in taking the meds. I was still falling asleep around 11:30 though so I started taking a second dose at 12 (so I could have another 2-3 hours) and I just feel so frustrated. I'm out… read more

Having narcolepsy, does it make u angry or just a little upset when other people that really don’t understand you say “I wish that I could sleep like that” or is it just me? I’m saying “I wish that I could stay awake like u!”

I basically live off energy drinks to keep me awake... but honestly I feel like it’s more of a placebo effect than the caffeine doing the job. Now I have kidney stones! So, obviously, energy drinks are BAD. I don’t know what else to do! I’m already on modafinil, but it doesn’t seem to be very effective.

I get stuck in my sleep. I can open my eyes and I can see around the room but it's like I'm being held down and my breath is being taken from me! I try to move my body, sometimes I think I am! when my friend stayed over I was trying to kick her cuz I couldn't wake up even though my eyes were open and I could see the room I was being held down and my brother was being taken it was hard to breathe the hardest part to say, I'm going to see right now. sometimes it feels like I'm being held down… read more

When I was first diagnosed beginning of high school, my doctor had me try a couple different treatments. One of them was Ritalin, but I was wary of pills and didn't want to go that route. College has really been testing my limits, and I'm starting to fall behind. Do stimulants help any of you guys? Which kinds help the most? Do side effects outweigh the pros? Thank you!

Even a 30 minute conversation absolutely drains me. But if I spent that same time doing something else, it's not as tiring???