I have just found a facebook wall that is super active and everyone is so nice. Its a narcolepsy support group. You should join!!

http://www.facebook.com/home.php?sk=group_2212151373&ap=1

Three years ago, I was diagnosed with narcolepsy. I've tried five or six different combinations of medication and I'm currently on 150mg Tofranil PM at night and 5mg Ritalin twice a day. The Tofranil has been working fine, but I feel like I might be building up a tolerance to it, since it doesn't seem to be as effective in the last few months. Has this happened with anyone else? I still feel very sleepy when I wake up and now it seems to be taking a little longer for me to fall asleep than when I first started on it.

I take the Ritalin in the morning when I remember, and I'm disappointed to report that I forget more days than I remember. I've tried putting the bottle next to my toothbrush and by my purse and by my shoes, but I just can't seem to remember. Any ideas of how I can be more on top of things?

I work in retail and I reeeeeeally don't like my job. It's a job, though, and it took me three months to find one, so I'm sticking with it, even though I dread waking up every morning to go. I'm the manager of the Children's Department in a department store and I have these uncontrollable urges to lock myself in the fitting rooms and take a nap. I still haven't actually done it yet, but the temptation is there every day. Because I don't like my job, I'm not a very chipper salesperson. All of these things combined with the fact that I'm all kinds of exhausted makes me so anxious to go to work that today I called off because I felt sick. I did have a little bit of an upset stomach, but it was mostly because I slept horribly and the idea of standing for eight hours and repeating the same six questions all day and trying to sell people things they don't want made going to work the very last thing in the world I'd want to do. I know this was very irresponsible and I know I need to be more on top of taking Ritalin during the day, but I still know I would've made the same decision under different circumstances. Has anyone felt like this before? I feel alone quite often since nobody seems to understand what it's like to be *thisclose* to falling asleep all day, every day. I'm usually much more responsible, but like I said, the lack of sleep and anxiety about knowing that I'll be an even worse worker kept me from doing the smart thing.

Any insight you can give me is greatly appreciated.

Hello! I'm Bridget from Ohio.

After a recent sleep and nap study, I've been told that I probably have idiopathic hypersomnia. I was prescribed provigil and I wanted to hear any and all experiences that you guys have had with the medicine. Thanks for your time, guys.

OTHER MODS: Given the results of the survey I posted, should we create a community to discuss issues like this - and (perhaps) getting all of the posts tagged and how to consolidate them into memories of FAQs? I'm not even the maintainer and I've undertaken this massive task alone - which has come to a standstill now that I've been dealing with personal issues for about a year now.

MEMBERS: Thank you for the valuable input in the comments and in the poll. While I'd have liked to see more of our 1,000+ ish members vote, I will assume that they don't care either way. Also, please try to tag your posts based on existing tags. Thanks!

EVERYONE: How do you explain to others that an episode of sleep drunkenness/sleep inertia is not your fault? How do you make them understand (2 and 1/2 years post-diagnosis) that it isn't a matter of willpower?

Hey everyone!

This might be a long shot, but I thought I'd ask. I think I'm having some issues with my medication interacting. I posted here when I first joined. It turns out I have hypersomnia, and for it, my Sleep Doctor has me taking Ritalin. I don't think I take that much . . . 15mg twice a day. So, this has been added to my Epilepsy. I was on Carbatrol before I was put on the Ritalin, and I was fine from March til July. In July, I started to feel over-medicated (dizzy, lightheaded, poor balance, horrible double vision) when I took both my Ritalin and Carbatrol. Both my Neurologist and Sleep Doctor thought it was my Carbatrol. We decided to do some crazy switching with my meds. I'm on a lower dose of my Carbatrol, but I'm also on Zonisimide as well. At first, things seemed fine. A month or so ago, when I went up to 400mg a day of the Zonisimide, I started to feel over-medicated again. I called my Neuro, we lowered my Carbatrol again, and I have yet to feel any better. I only feel badly when I take my Ritalin when I take the dosage near the time I take my Zonisimide. (Actually, I took the Zonisimide 5 hours ago, and I took my Ritalin an hour ago, and I feel like crap.)

Is anyone else on both Zonisimide and Ritalin? If you are, have you had issues with feeling 'over-medicated' on them? I'm going in to see my Neuro next week, but I'm curious if maybe it's something other than a feeling of being over-medicated. I apologize if this sounds confusing in any way. Thanks for any help! :D

Silly question I know, but whn you are narcoleptic things can be more complicated than just yes or no...
I have had N since I was 12. I am now 30. And I have experienced EDS on the daily, C on the daily, now more like weekly and SP about a dozen times. But the hallucinating I have never experienced. I think I may be as of recently. Just wondering if it was more like vivid dreams or hallucinating...
Example: I always take a nap about 1 or 2 pm. I fell asleep while talking to my husband. I was kinda listening to him fighting the EDS and then I remember being in a store looking at stuff and telling him about it, like wives do in a normal situation at a gift shop. It took awhile for me to realize it wasn't real, maybe 10 minutes, but eventually I did. After I woke up I remembered what happened. He said I told him very clearly the things I remembered saying to him.

Hey! Can anyone recommend a travel/portable CPAP machine that they like?

Or, ones to stay away from?

Thanks!

I've just had the weirdest and scariest sleep paralysis. I've been going to bed at 22:30 and getting up at 4am everyday this week so I'm pretty burned out and went to bed early because I could barely keep my eyes open.

I got my SP episode, but I can move certain parts of my body. I can move my jaw, and if I try hard I can blink. Sometimes I can move my hands/feet a bit. Buy moving them, it usually helps me break out of it. If I try hard to no avail, I make myself fall back asleep.

This episode was having none of it. I tried to move and I couldn't break out of it. Fell back asleep and woke up still in SP. Still couldn't break out of it, and I started to panic by this point. But...a dream sort of intervened in the SP (almost like a hallucination, because I could still see my film going on and I haven't seen it before so it's not like my brain has subconciously played it to me in a dream)

I dreamt/hallucinated that my dad came into my room and I was happy because I thought that'd break me out of it. But it didn't and I really panicked. I managed to get my arm moving and lazily swung it over me, causing my body to swing with it and I fell straight off the bed and hit my head really hard on the floor (wooden).

Again, I thought that'd wake me but it didn't. I was just lay there with a really sore head, unable to move to comfort myself. After another minute or so of trying to move, I broke out of it with one of those movie style sit-up-bolt-upright-and-gasp (as I usually do when I've been trying particularly hard to break out) but I was in bed, not on the floor.

What's weird is, I know it was a dream/hallucination, but my head REALLY hurts in the place I hit it...and there's nothing I could have hit it on in my sleep....

I'm still absolutely knackered aswell but I'm too scared to go back to sleep. I hate this...

Hey everyone.

I've been dealing with some stuff and haven't been so terrific about back-tagging posts. But it would be immensely helpful if you could tag new posts and reduce my workload a little. :)

I wanted everyone to know that Desoxyn was recently approved in a generic formulation - there is now one brand-name version and one generic version. So anyone having trouble with obtaining a prescription due to insurance denials might actually be able to try this med without being completely cock-blocked by insurance companies.

I've heard it's an immensely effective drug, one that doesn't require the type of dose escalations associated with Adderall and Dexedrine, and it's so centrally-acting that the side effects are quite minimal and (contrary to popular belief) the feeling less "tweaky" or euphoric than the former two.

Have you tried this med before? Did it help?