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About Dalton

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  • Birthday 10/27/1993

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  1. Hi all. I'm here on behalf of my fiancé who is dealing with some sleep issues, primarily some serious EDS. He's working on getting a sleep study done to get a definitive diagnosis of some sort, but in the meantime we're looking into options that might be available to him right now. I've got N and very clearly remember being prescribed nuvigil before I ever had my sleep study done, I assume provigil can also be prescribed without a specific diagnosis? I'm on xyrem currently and it's been so long since I used either nuvigil or provigil that my memories of both are kind of foggy, and even if they weren't it's always good to have more input. Right now he's taking caffeine pills, and says he feels very awake but very shaky. I remember both provigil and nuvigil leaving me pretty shaky as well, but I've never tried caffeine pills so I have no idea how they compare. Has anyone here tried both caffeine pills and (at a different time) provigil and/or nuvigil? How did they compare? If you experienced shakiness and/or heightened anxiety as a side effect of any of these, which one was the most and least severe? Which one did you find the easiest to work out a good dosage regimen? Personally, nuvigil would keep me awake for 2 days at a time, and I'm not touching provigil again until I'm back on anxiety meds. Anyway. tl;dr we're just looking for some input from someone who actually has personal experience to compare pro/nuvigil with caffeine pills. Thanks
  2. Thanks!
  3. So I'm a little bit lost when it comes to The Rules re: driving. I'm 23, was diagnosed in August 2014, and hadn't got my license before that because I was so tired all the time I couldn't think straight enough to handle driving. It took a while for treatment to really work, and then I just sort of never got around to getting my license. (Read: I gave up on figuring out the paperwork headache that it seemed to require.) I get around okay thanks to my family and friends, but I'm moving to Hawaii in September to live with my fiancé and his family, and I really don't want to pester them for rides. My fiancé is also dealing with sleep problems that he's in the process of seeking a diagnosis for. He's 21 and also doesn't have a license yet. (I mention our ages just because I know certain aspects of getting a license in the first place can differ depending on whether you're a minor or an adult.) Aaand we plan to move to Oregon at some point, possibly as early as February 2018. So we've been scouring the internet trying to figure out what exactly we need to do to be street legal in both Hawaii and Oregon. Is the MWT still the standard test? Is it required of anyone with any kind of sleep-related problems or just people with specific sleep disorders or? And is it always required? I haven't had any sleep attacks since finding the Xyrem dose + sleep schedule that works for me, I very very very rarely experience cataplexy, and my fiancé is waiting for a sleep study so he can also seek treatment for his symptoms. Do we need the MWT? A doctor's note? Both? Sorry for the wall of text and thanks to anyone who can help us out!
  4. Late reply but thank you both!
  5. Thank you both! (And haaa sorry I was kind of pre-defensive about my phone, I'm used to that being the first thing someone latches onto if I mention problems with waking up on time.)
  6. Back again with another question about xyrem, sorry. I've generally had good results from xyrem so far. I'm currently on 3 grams for my first dose and the original 2.25 for my second. Twice now, I've had problems with my alarm. The first time was early on and I think I just slept through it. The second time, since I use my phone, I forgot to take it off Do Not Disturb so it Did Not Disturb me with the alarm I set. Whoops. I woke up on my own, about half an hour too late to take the second dose. So I have to ask - is the 2.5-4 hour window a hard rule? I can't see myself ever wanting to take the second dose any sooner than two and a half hours after the first, but is something like 4 and a half hours really too long? I haven't been able to find anything explaining where that window of time comes from, so I don't even know how to make an educated guess. I erred on the side of caution and didn't take it, of course, but since this has happened to me twice now, I thought I should at least ask about it in case it happens again. Also, please don't tell me I shouldn't be using my phone as my alarm. I realize it's not ideal, but I really can't do anything else. With my executive functioning and my memory being as bad as it usually is (xyrem helps, but it's not a miracle fix for everything and I don't expect it to be), it's better to use the alarm system that I already know how to use. And the one that I definitely won't forget to take with me between my parents' houses.
  7. Thanks. I had to stop for a few days so I could talk to the program and the nurse practitioner at the clinic, and she thinks I should be okay to start it again. I'm sure the side effects will be back in full force since I quit for so long, but at least this time I won't be as worried.
  8. Thanks, everybody. IdiopathicHypersomniac - no, I take it for excessive daytime sleepiness. I either have narcolepsy without cataplexy, or my cataplexy manifests in minor ways we haven't been able to detect yet (my eyes occasionally twitch, I'll feel weak for a second but won't fall down, etc. There's only been one incident that might have been a more severe cataplexy attack but it happened before my diagnosis so I don't remember the details very well) So far the first dose has been taking about an hour to make me fall asleep. I think my body and brain's instinctive reaction is to fight it. It worked a little faster last night (third night), and the second dose is always much quicker. It's the first dose that's starting to freak me out. I lay there feeling dizzy and getting less and less coherent. Last night I started losing feeling in my hands. Thinking I might skip tonight and check with the doctor or the program or both tomorrow just to be safe, but also worried skipping a night so early will just make it worse next time.
  9. Thanks! I have to wear prescription glasses but I think I've got an older pair somewhere with tinted lenses, I'll try those! I'm drinking a lot of water and trying to eat but I've also got the nausea side effect. Hoping that one will calm down soon, it's been better each time. My doctor and the Xyrem program don't seem to be particularly well coordinated with each other so I'm not sure which one I should call. Probably both, I guess. (I had the sleep clinic telling me I was supposed to drive out half an hour to them to pick up my prescription - I can't drive! - and the Xyrem program telling me the clinic wasn't allowed to do that and that the SDS pharmacy would mail me the stuff themselves. It came in the mail. I'm hoping the person calling me from the clinic was just new or not very involved in the process.) ETA: Sorry, yes, I'm on a low dose. 2.25gm twice a night.
  10. I just had my third night on Xyrem and I'm consistently noticing a side effect that I haven't read or heard anything about: everything is so bright! Almost too bright. As soon as I take it, lights start hitting me way harder - it's not like I'm sleeping with the lights on, but there are a few electronic things around the room that emit faint glows, and I use my cell phone as an alarm clock. It's not unbearable but it seems strange to me, I guess. It doesn't go away once I'm awake, either. Lights sort of slowly fade back to normal by the end of the day and then I have to start all over again. My mother suggested the medication might be causing my pupils to dilate, which is the only thing I can think of short of my brain deciding to process light differently. But I haven't been able to find anything about Xyrem causing this reaction. Am I worried over nothing? I'm also feeling dizzy for a good while after waking up and lethargic for most of the day, but I'm not too worried about that. I was warned it might make things worse before it potentially makes them better. One other thing I am worried about - I've seen numerous people say that after taking Xyrem, they noticed their legs turning blue or red or purple, especially in the shower. My legs sometimes do that in the shower anyway and I'm worried I won't notice something potentially dangerous. Sorry if this isn't the most well put together post, I'm a bit of a zombie right now.
  11. I've always had a bad memory, but the past couple of years it's been getting steadily worse. I forget conversations I've had and commitments I've made. I forget to respond to texts (and forum messages!) and I can never find what I need because I have no idea where I put it last. I can't help but notice that my memory started getting worse right around the time my excessive sleepiness spiked badly enough that I started to really suspect something was wrong, which was what eventually led to my N diagnosis. I have a feeling I've been doing a lot of micro-sleeping in the middle of important things like conversations and appointment bookings, etc., and also that my mind just doesn't latch onto things as well when I'm so tired. Does anyone else have this memory problem, or any idea how to deal with it? It's getting scary.
  12. Thank you all very much! I ran into a ton of computer problems right after I posted, so I haven't been able to reply for a while. I did my sleep study about two weeks ago and just got the results today. Definitely narcolepsy! My average sleep onset time for the MSLT was something like 8-10 minutes but this was mostly put down to my anxiety disorder and I hit REM during two of the naps.
  13. I finally got in to speak with a neurologist, and both he and the nurse were very knowledgeable and helpful. He had me do the Epworth sleep scale on the spot and I ended up with a 19. We've scheduled an EEG on Tuesday and they are looking into where and how I can get an overnight sleep study + MSLT done with my insurance. The neurologist seems to find narcolepsy very likely, and told me that if I have it, it may not be full blown yet. He said it tends to be fully developed when a person is around 29 or 30 (I'm 20). This makes a lot of sense to me because while none of my symptoms are new, they've certainly gotten worse in the past couple of years and even the last few months. I'm already nervous about the MSLT. I struggle with occasional insomnia (it goes away and comes back in cycles but the eds is always with me even if I've had several nights of a "normal" amount of sleep) and general anxiety, and I'm afraid I'll lie down and be too anxious to fall asleep. Do they usually let you listen to music or anything if you bring your own?
  14. Wait to do what, exactly? Seeking a diagnosis is the only thing I'm doing. My worry is that we might be barking up the wrong tree and need to be paying more attention to genetics, and/or that this might be scaring my sister into looking in the wrong direction. I went through symptoms with my doctor and he recorded them all, which is good, because I think my mother brought up narcolepsy with him before I even got in the room and the first thing he said was "I don't think it's narcolepsy, because that would mean you just drop straight to sleep at random points throughout the day." I didn't assert the condition or anything, just told him my symptoms. By the end of the appointment he told me he was thinking it might be narcolepsy.
  15. Update: Had an appointment with GP, mostly about quitting cymbalta. As expected he really doesn't know what narcolepsy is. But once I'm officially off cymbalta we're going to work on scheduling a sleep study. I'll make sure he doesn't send me to a pulmonologist. The thing is, my sister is trying to figure out her own sleeping problems and I'm wondering what that might mean for both of us as far as statstical likelihood goes. She's younger than me and her symptoms aren't exactly the same. I don't know. I don't want to give details on her troubles since it's really not my business to be talking about. I'm just wondering what the odds are of both of us having sleep disorders, let alone the same one. She's certainly not faking anything, and neither am I. I just wonder if it might point genetically to some third option that we haven't found yet.