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#1 Wokndead

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Posted 15 April 2013 - 03:54 PM

Hi everyone!

I came on here not because I think I have narcolepsy, but because my wife thinks I do, and she may be right. I am also autistic (Asperger's Syndrome), and have found that forums are a huge help. I haven't yet been tested, but I'm seeing my doc tomorrow to talk to him about what's been going on. I know narcolepsy (or "N", as it seems to be preferrably referred to here) tends to set in earlier in age than where I am now (I'm 35), but the signs are there.

 

As with my autism, the symptoms are mild, but present. I get tired frequently during the day, and feel as though I could just lay down and sleep. I've fallen asleep at work, right at my desk, and also have felt myself dozing while driving. Then sometimes I'll come home from work and just lay down in bed and fall asleep for a bit. This is usually a short nap, no more than a half hour, but recently I took a two-hour nap when I came home and crashed. Even after said nap, I still felt tired and went to bed at my normal time (around 11-11:30pm).

 

I never have trouble falling asleep. In fact, I tend to fall asleep right away, and many times I'll start dreaming before I'm even fully asleep. When I doze at work, it's like I start hearing voices (like in a crowd) as I'm falling asleep, then many times one of the voices would call my name and I'd wake up. Freaky! I don't ever have visual hallucinations, just the auditory hypnagogic ones. When I feel tired at work, sometimes I'll try having a cup of coffee to stay awake. Sometimes it works, and sometimes it does just the opposite. I'll even try exercising in my office to get me feeling more awake, but even that doesn't last. Some days I'm not as tired, but I feel foggy and sluggish. I always thought I had SCT (Sluggish Cognitive Tempo), but now I'm wondering if it might be something else.

 

I get tired at times while socializing because, being autistic, it tends to make me feel drained. So I don't know if that's related or not, therefore it's confusing in those cases. Many times my wife and I will have people over at night, and at a certain point I'll want to just go and lay down. Again, I can't tell if that's just me being an "Aspie" or if it's some kind of hypersomnia.

 

I also thought I had reactive hypoglycemia, as I would feel tired and irritated or dizzy if I don't have something to eat every two to three hours. I was never actually tested for this, as my doc seemed to think it made sense, and simply told me to try to keep snacks with me at all times and try to snack on things that are rich in protein. Snacking can help me stay awake, but sometimes I just want to sleep after eating. I've frequently fallen asleep at my desk right after eating lunch. (I eat meals at my desk at work. Again, I'm not very social, and like to keep to myself. Nothing against people, it's just me.) But my point, in this case, is that I don't know if I actually have reactive hypoglycemia or if it's just coincidence and there something more going on.

 

I don't experience cataplexy, but I am quite clumsy, and I tend to drop things or knock things over frequently. Again, this could be part of me being autistic. As for sleep paralysis, I'm not sure. I do go through times when, as I'm waking up, I feel as though my brain is awake, but my body doesn't want to work just yet. It doesn't scare me, but it does feel odd. I've experienced this through most of my adult life. Maybe it's normal? It's like I'm a car that's running, and the driver hasn't gotten in yet to put me in gear. Would this be considered sleep paralysis? It only happens when I'm waking up, and not as I'm falling asleep.

 

I have a horrible memory. I forget things all the time. I forget things I had just done, or conversations I just had, or recently had. Many times I'll forget what I'm doing as I'm doing them! I'll be in the middle of something, and I'll suddenly stop and think "What was I doing just now? ...oh yeah!" and then I'll continue.

 

Now here's what I'm wondering. Does anyone here have symptoms, but also have good days? I don't always feel as though I could just fall asleep at any moment. Sometimes I have quite normal days, where I can just stay awake, and don't start to feel tired until after work. But even on those days, I can be clumsy, or feel slightly foggy at times, or be forgetful, or become irritable. My wife hates that I can hardly ever watch a movie with her without falling asleep. A lot of times, when we do watch a movie, I can't sit with her in bed. That's instant sleepiness right there. I'll need to sit in a chair, or on a stool, and even then I'll sometimes fall asleep. Many times I'll do some push-ups while we watch the movie, just so I can stay awake through it all. I hate it!

 

I'm sorry that this is so long, but I just keep adding things as I think of them. But I'll wrap it up now. My main point is, do any of you think that I may be slightly narcoleptic, or does it sound like maybe just some other form of hypersomnia?

 

Thanks for your time!



#2 DeathRabbit

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Posted 15 April 2013 - 05:21 PM

Yeah, there are always better or worse days. Everyone has nights where there sleep quality is better or worse than normal. Us Narcos just get impacted a whole lot more because our sleep runs from crappy to slightly less crappy. Like, I'm wiped today, because I was doing some major REM last night. My dreams were like one big hollywood blockbuster feature length film after the other. I can't really remember them well, but at the time, they were quite vivid. So yeah, now that I've got a decent treatment for N established, some days I can feel semi-normal. But days like today remind me that all is not well indeed. And the tiredness after socialization is something I get as well. Any period of increased concentration or emotion brings on a sleep attack that has me stumbling in a stupor. And since I'm kinda socially enfeebled, being at a party or gathering requires a lot of focus. I can only maintain it for so long. I don't get cataplexy and I've developed the willpower to resist actually sleeping at these times, but it still bites.

 

EDIT: Also I noticed that you say you still have cognitive impairment on days when you aren't sleepy. That's been a hallmark of my N experience as well. Some days I'm just in a stupor for no discernible reason. Must be some neurochemical BS due to chronic crappy sleep. Haven't been having many of those days lately since I started this new treatment, and even on the sleepy days, I'm impaired less than I was before. However, even on my really good days, I still don't feel near as sharp as before N. My neural networks are probably shot to hell, from being in a fog for so long. I'm hoping now that I'm feeling better that, over time, the clarity and sharpness will return to some degree. I'm not foolish enough to think I'll ever be fixed. But I can maintain at the level I'm at now, and if I could just have a little bit more of the old me, back, well, I'd be pretty content with my existence.



#3 Wokndead

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Posted 16 April 2013 - 11:05 AM

Yeah, my dreams are always pretty crazy, too. I also find that if I get too much sleep at night, I'm even groggier the next day. It's hard to find a balance. So far, I feel pretty good again today, aside from the fact that I have ice pick headaches since I woke up. I suffer from those every now and then. :(



#4 MINItron

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Posted 17 April 2013 - 10:56 PM

I find that I can't sleep more than about 6 hours at night. If I go past that I start having crazy, crazy dreams that wake me up every few minutes, and I will just be more sleepy. Without something to block REM the only way I can get more than 6 hours of sleep is if I am completely and utterly exhausted.



#5 Wokndead

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Posted 18 April 2013 - 06:08 AM

I function pretty well on six hours, too. I can function well enough at five hours, but six is best.



#6 SnoozleBear

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Posted 22 April 2013 - 02:26 AM

Hi Wokndead, 
Like you, I too am having huge difficulties with sleep. I always have had issues right from birth, where I would wake 13 times or more a night until age 11, at 13/14 I had bad insomnia, ranging from 3 to 4 hours on a good night, to close to 4 days without sleep. I started on a sedative at night and after finding one that worked, managed to sleep....however, when sleeping, I would get constant, vivid, weird, and long dreams all night, and wake up exhausted. I had other issues such as anorexia draining my energy during the day. My required sleep time, even after recovery from the eating disorder gradually went from 8. 9. 10, 12, 14, 16 hours...
Since stopping my sedative at night about two or three months ago, and now another medication that was helping with anxiety (but sleep specialist thought would interfere with sleep lab results - if we go down that path) my sleep has gone hay-wire since...I seem to have insomnia for the first half of the night. (sometimes the whole night) then eventually crash from pure exhaustion around 2am - 5am and need a minimum of 10 hours, maximum 12 hours - otherwise like you described I will get headachey and more tired from oversleeping (odd huh?). It was suggested I may have had narcolepsy or Idiopathic hypersomnia at my first review 5 weeks ago...but my falling *uncontrollably* asleep isn't often and is usually just the need to sleep urgently, but can fight it off some days. I believe I am closest to having Idiopathic hypersomnia. However, after a half serious/half joking comment by my partner that I may be autistic...I finally looked into symptoms of high functioning/mild autism, and through that, found the condition 'aspergers' ,....I realised many of my troubles I've had throughout my life, could be described by this diagnosis, including many sensory issues, constant planning of possible conversations in my mind, that I might need or need to have with people, difficulty in understanding more subtle emotions/expressions etc. I do not have an official diagnosis, and don't know if I should bring it up with my therapist, or sleep specialist - as i certainly don't want to self-diagnose, and the condition is apparently rarer, or less diagnosed in females. I did do some reading Wokndead, on 'aspies' and sleep disturbances. Some studies reported great difficulties in falling asleep, or a regularly getting a good, restful quality of sleep. However I'm not really sure that the sleep troubles you describe (and I semi-relate to as well) are completely asperger's related... it sounds a bit like you are struggling with excessive daytime sleepiness (EDS) or a hypersomnia - i'm definitely not a doctor though :) ...but you should really see a sleep specialist since it sounds like its really impacting on your life! I'm really hoping to find some answers myself from my sleep doc appointment tomorrow, where he will download and look at the data from this 'Agtigraphy' watch i've been wearing all week...can't wait to get it off my wrist! so uncomfortable ggrrrr! 

Good luck Wokndead, hang in there and keep us all updated on your progress! 



#7 Wokndead

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Posted 22 April 2013 - 12:43 PM

Thank you, SnoozleBear! I didn't see my normal doc when I had my appointment, as he wasn't available. I saw my least favorite doc, who only dismisses everything (I can't stand that!), and he chalked it up to my taking Klonopin and Zyrtec daily. I kept trying to tell him that these issues began long before I started on these two meds, but he didn't even seem to hear it. I was able to get him to set up a sleep study, though, so that's good. I'm just waiting on the phone call to schedule it. Today hasn't been a good day for me. I didn't sleep well last night, and have been sleeping most of the day (aside from brief breaks to get the kids ready for school, walk the dog, and run to Dunkin' Donuts for breakfast. I just can't seem to stop being tired! My wife is making us lunch right now, so that should keep me up for a little while. ;)

 

Thanks for the support, guys! I will keep you posted.



#8 Starbuck

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Posted 22 April 2013 - 06:56 PM

Yeah, you can get N at any age, so just because you're 35 doesn't mean it can't be N.

It's common for people to get diagnosed 10 to 15 years after the problems initially surfaced.

Good luck to you on finding out what's going on with you and to get appropriate treatment.

Be persistent! It took me about a decade and went to a lot of doctors before I got help. I had never even heard of narcolepsy or cataplexybefore my sleep specialist spoke the words to me so you're on the right track! :-)

#9 Wokndead

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Posted 24 April 2013 - 03:08 PM

Thank you!  :)  I'm still waiting on the call for my sleep study. :mellow: Hope it doesn't take long, I just want to know something.



#10 Hank

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Posted 23 May 2013 - 09:27 AM

Thank you! :) I'm still waiting on the call for my sleep study. :mellow: Hope it doesn't take long, I just want to know something.


I hope you are beginning to get some answers. Please be aware that Klonopin will invalidate your sleep study because it changes sleep architecture. It supresses REM sleep so, if you have an MSLT, it is unlikely you would not experience sleep onset REM because of Klonopin. If your doctor does not already know this, consider that a red flag that you need another doctor.