Narcolepsy/Idiopathic Hypersomnia

[Keaton]

maybe this is a long shot, but I was just wondering if anyone here had narcolepsy or its "twin", idiopathic Hypersomnia.

most people have some idea of what narcolepsy is - IH is somewhat similar, possibly rarer, a disease where you never feel awake and you can sleep for 40 hours at a time. It's hell. I'm unsure of which one I have - I may have both. Luckily, I'm on non-stimulant meds that really work for them. Theyre atypical med choices, not well known at all, but they work!

just wondering how other people with MI deal with severe sleep disorders like narcolepsy and IH. it certainly makes things interesting for me. 

[melissaw72]

I have a sleep disorder that is similar to narcolepsy (Idk what it is though).  I am on provigil and wellbutrin for it, which really help.  I still sleep 2-3 times a day plus some at night, but for me that is good.  I also have anemia though, so that may be contributing to it also.

[Velvet Elvis]

My gf is narcoleptic along with OCD, ADD and depression.

 

[Keaton]

I have a sleep disorder that is similar to narcolepsy (Idk what it is though).  I am on provigil and wellbutrin for it, which really help.  I still sleep 2-3 times a day plus some at night, but for me that is good.  I also have anemia though, so that may be contributing to it also.

I'm glad that your meds are helping! The fact that you said "similar to narcolepsy" made me think - my mom has a similar disease. She has to take one or two naps just as you do, as well. Makes me wonder if you have a similar/same illness. Her doctor calls it borderline narcolepsy. I assume you've had a sleep study done - what were the results? (If you don't mind me asking, of course.)

My gf is narcoleptic along with OCD, ADD and depression.

 

that's quite a burden to carry. Especially because narcolepsy can make you depressed as well. I hope she is doing well!

I have a sleep disorder that is similar to narcolepsy (Idk what it is though).  I am on provigil and wellbutrin for it, which really help.  I still sleep 2-3 times a day plus some at night, but for me that is good.  I also have anemia though, so that may be contributing to it also.

I forgot to ask - do you feel refreshed after your naps? If not, maybe look into idiopathic hypersomnia?

[melissaw72]

I did have a sleep study done.  Neuro said it was "ok" even though I slept like crap.  According to my neuro, my brain got the right amount of sleep and went into all stages.  I felt like shit in the morning, was up at least 3-4 times to use the bathroom, and kept waking up, so Idk how I could have gone through all the sleep cycles.  I wasn't asleep long enough at any given point for my body to do so.  But I can't fight it.  That is what the EEG machine says so it must be right (sarcasm).

Neuro told me the only way to diagnose narcolepsy is to take me off of all meds for about 2 weeks, then do the sleep study.  And I was like there is no way I can go off meds without becoming psychotic.  Even my mother said there was no way I was coming off of meds (she knows firsthand what I am like off meds and she wasn't going through that again).

No, I do not feel totally refreshed after my naps.  When I wake up I feel more awake and I am not dozing off, but I'm not refreshed or anything.  Neuro made a comment at one point about it being a circadian rhythm disorder of some kind.  But it wasn't clear.  I was like I don't really care what he wants to call it, as long as I get the meds that I know help.

[dilemma]

I am in the midst of trying to diagnose a similar problem.  I have to sleep 11-12 hours at night, and then after I'm awake a couple hours I am so fatigued that I have to lie down and sometimes I take a nap.

I had a sleep study done, and during the night I had so many "alpha wave intrusions" that they almost couldn't read the results. I only got into level 4 sleep once and never REM. The sleep doctor said perhaps this was due to the pains from fibromyalgia, and I should see somebody about that.  I called my rheumatologist, but he moved, and none of his associates will see people that have fibromyalgia, so I went to my internist and he said he'd refer me to a rheumatologist, but this just made me realize that I have't heard anything from anybody, so I better call tomorrow.

I have a followup appointment with the sleep doctor in two weeks, but I'm not very optomistic.

[Keaton]

I did have a sleep study done.  Neuro said it was "ok" even though I slept like crap.  According to my neuro, my brain got the right amount of sleep and went into all stages.  I felt like shit in the morning, was up at least 3-4 times to use the bathroom, and kept waking up, so Idk how I could have gone through all the sleep cycles.  I wasn't asleep long enough at any given point for my body to do so.  But I can't fight it.  That is what the EEG machine says so it must be right (sarcasm).

Neuro told me the only way to diagnose narcolepsy is to take me off of all meds for about 2 weeks, then do the sleep study.  And I was like there is no way I can go off meds without becoming psychotic.  Even my mother said there was no way I was coming off of meds (she knows firsthand what I am like off meds and she wasn't going through that again).

No, I do not feel totally refreshed after my naps.  When I wake up I feel more awake and I am not dozing off, but I'm not refreshed or anything.  Neuro made a comment at one point about it being a circadian rhythm disorder of some kind.  But it wasn't clear.  I was like I don't really care what he wants to call it, as long as I get the meds that I know help.

just curious - how long do you sleep at night? During the day? Do you sometimes feel woozy or drugged after waking up?

I am in the midst of trying to diagnose a similar problem.  I have to sleep 11-12 hours at night, and then after I'm awake a couple hours I am so fatigued that I have to lie down and sometimes I take a nap.

I had a sleep study done, and during the night I had so many "alpha wave intrusions" that they almost couldn't read the results. I only got into level 4 sleep once and never REM. The sleep doctor said perhaps this was due to the pains from fibromyalgia, and I should see somebody about that.  I called my rheumatologist, but he moved, and none of his associates will see people that have fibromyalgia, so I went to my internist and he said he'd refer me to a rheumatologist, but this just made me realize that I have't heard anything from anybody, so I better call tomorrow.

I have a followup appointment with the sleep doctor in two weeks, but I'm not very optomistic.

I'm sorry.  Sleep disorders are very frustrating. Until I found the right medication I was sleeping 20 hours a day. Pure hell.

your sleeping patterns and lack of REM mirror my symptoms exactly (except I slept longer at night.) I'm not trying to go around diagnosing everyone with IH, but when it's not narcolepsy I always get suspicious and IH is more common than was first thought. My inexpert opinion is that this is not from your fibromyalgia, but what the hell do I know. I hope your doctors find you answers, and soon!

[melissaw72]

I sleep in broken up sleep.  A couple hours here and there, sometimes 3 hours.  Any more hours in a row is rare.  So I am up and down 24/7.  I do sleep during the day.  No, I do not feel woozy or drugged waking up.