7 replies to this topic

[tabster1]

I was diagnosed with Narcolepsy w/ Cataplexy over a year ago. I take Nuvigil and it really helps. Every few months however I get these weird bouts of insomnia. It's driving me insane! I slept over 16 hours Friday night, and only got 4 last night. At this point I've been awake over 17 hours even though I barely slept last night. Why is this happening?! How do I make it stop? I'm so tired but I just toss and turn and can't drift off. I tried reading but an hour and a half later I still don't feel any different. The only thing I can think of is I'm anxious because my grandpa is in the hospital, but usually that makes me sleep more not less. He was admitted Friday and thats when I went overboard with the sleep and now it has flipped in the opposite direction. Is this normal?

[thecatnapper]

I'm completely nocturnal right now and have been since mid March. I'll be so glad when the doctor can get me approved for Xyrem! Hopefully it will only be another month or so. Nuvigil just made me wired but I was still very sleepy..just couldn't go to sleep. Plus it gave me migrans

[tabster1]

I'm completely nocturnal right now and have been since mid March. I'll be so glad when the doctor can get me approved for Xyrem! Hopefully it will only be another month or so. Nuvigil just made me wired but I was still very sleepy..just couldn't go to sleep. Plus it gave me migrans

I suffered through a month of headaches on Nuvigil and they finally went away! I'm glad they did. Nuvigil keeps me awake for a good 8 hours. I hate the Ritalin, it's this awful feeling of being tired but not being able to sleep. Is the nocturnal thing common in narcolepsy? I seem to be creeping that way, my sister too.

What is Xyrem for? I thought it was for cataplexy?

[sleepywriter]

Are you on any sleep aids? It IS normal for PWN to experience periods of insomnia. It's so strange, and it is so awful. To be that tired and then to not be able to go to sleep is one of the worst feelings in the world because you just know that the next day is going to be absolutely horrible. If you're not on any sort of sleep aid, I would ask your doctor about it. If you are, and it isn't working, you might ask about Xyrem. Xyrem is used to treat cataplexy, but it is also puts you to sleep and encourages that deep, restful sleep that PWN lack. It takes a while for it to work - several weeks and maybe even months - but the results are amazing for a lot of people.

[tabster1]

this recent insomnia thing happened directly AFTER I saw my sleep doctor. And it happens so infrequently I didn't think to bring it up. It did resolve itself eventually.

[tabster1]

Well I think I spoke too soon. . .time to call the doctor I guess.

[drago]

I was diagnosed with Narcolepsy w/ Cataplexy over a year ago. I take Nuvigil and it really helps. Every few months however I get these weird bouts of insomnia. It's driving me insane! I slept over 16 hours Friday night, and only got 4 last night. At this point I've been awake over 17 hours even though I barely slept last night. Why is this happening?! How do I make it stop? I'm so tired but I just toss and turn and can't drift off. I tried reading but an hour and a half later I still don't feel any different. The only thing I can think of is I'm anxious because my grandpa is in the hospital, but usually that makes me sleep more not less. He was admitted Friday and thats when I went overboard with the sleep and now it has flipped in the opposite direction. Is this normal?

I have insomnia sometimes, which is terrible if I've been having a 'very tired day' then can't fall asleep!

We know that narcolepsy is caused by missing certain types of brain cells (orexin/hypocretin). I'm not sure if this is "in the books" for the definition of narcolepsy, but it seems logical that narcoleptic people would struggle with not just EDS and insomnia but also "night owl" v. "early bird" swaps. Circadian rhythms are based on melatonin and tons of other neurochemicals and neurotransmitters, and since narcoleptics are missing at least one (or have a substantial deficiency), it makes sense that our rhythms could be plain out of whack. Especially for those of us who only treat EDS.

There has been one thing that has made my sleep MUCH BETTER (fall asleep faster, avoid sleep paralysis episodes, and stay asleep through most of the night) -- and that thing is --- exercise. Yep, plain ol' workout routine. I do karate (4x a week I do 2 hrs, and then I practice at least 30 minutes the other days). It's worth it when I can close my eyes and fall asleep (and stay asleep) at night!

drago

[tabster1]

I have insomnia sometimes, which is terrible if I've been having a 'very tired day' then can't fall asleep!

We know that narcolepsy is caused by missing certain types of brain cells (orexin/hypocretin). I'm not sure if this is "in the books" for the definition of narcolepsy, but it seems logical that narcoleptic people would struggle with not just EDS and insomnia but also "night owl" v. "early bird" swaps. Circadian rhythms are based on melatonin and tons of other neurochemicals and neurotransmitters, and since narcoleptics are missing at least one (or have a substantial deficiency), it makes sense that our rhythms could be plain out of whack. Especially for those of us who only treat EDS.

There has been one thing that has made my sleep MUCH BETTER (fall asleep faster, avoid sleep paralysis episodes, and stay asleep through most of the night) -- and that thing is --- exercise. Yep, plain ol' workout routine. I do karate (4x a week I do 2 hrs, and then I practice at least 30 minutes the other days). It's worth it when I can close my eyes and fall asleep (and stay asleep) at night!

drago

Yeah I've been planning to start exercising 4x a week when school starts and I have access to a gym. Do you exercise at a certain time? I'm afraid if I do it as soon as I wake up I'll be exhausted the rest of the day.