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Is This Normal For Adhd Or Is This Something Else?

adhd narcolepsy

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#1 TangentManic

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Posted 03 April 2013 - 11:35 PM

I have ADHD and have had it my entire life. I wasn't diagnosed until the last year, partially because I hid my symptoms from my doctors out of embarrassment, and partly because my parents were very anti-medication (so much so, that I had to run cross country without an inhaler despite bad asthma). I've got all the classic symptoms, and hyperfocus has been a particularly significant asset and handicap. I can remember having trouble sleeping all the way back to being a young child (6 years old or so), lying awake - which seems like typical ADHD mental hyperactivity. Till I was about 12-14 years old though, I would sleep through the night, and feel awake during the day. I'm trying to figure out if this is normal for ADHD'ers. I have a friend with ADHD and she seemed to think what I described was odd.

When I was 12, that began to change. It started with my first episode of sleep paralysis, which I thought was just an exceptionally intense dream. It was absolutely terrifying, and nearly 15 years later I still remember it clear as day. A slow decline began from there, especially after an episode of mono where I slept 23 hours a day for 4-5 days - I had more and more trouble falling asleep at night, and increasing sleepiness during the day. I usually don't fall asleep involuntarily, and I didn't then either, though I did tumble out of my chair in study hall once (the supervisor was very strict about not sleeping so my head would just nod until I keeled). But when I got home, unless I went to bed at some crazy time like 4pm, I would end up with insomnia. And the cycle would repeat itself.

It continued to get worse in college, and plateaued there, remaining unchanged till the present day (my sleep cycle is all over the place no matter how hard I try to keep it consistent, I usually end up on some vaguely nocturnal schedule). The sleep paralysis episodes became frequent, and I still get them several times a week, sometimes several times a night, my record being nearly 10 times in a row in under an hour. (It's absolutely exhausting.) I was lucid dreaming so much that I had to make a very deliberate effort to reduce my dream recall because I was getting panic attacks from being trapped in fully conscious dreams - it began to feel like sleep paralysis where you can move, except the whole world is a hallucination. I usually dream no matter how briefly I am asleep. I can have a vivid dream while my head bobs to the side, before the motion wakes me back up, to give some idea. I'm often afraid to go to sleep because the dreams are so intense, and the sleep paralysis frequent enough, I've stayed up for 2-3 days at times to avoid it, but I really try not to do this as it only makes the sleep paralysis worse - I'm only delaying the inevitable.

It's like I can sleep, and I can sleep very easily, but I can't really control when, and if I miss the bus (so to speak) then the result is insomnia. If I go lie down when I feel a wave of delirium come (which usually takes at least 10-15 minutes to develop, though I could be off as I haven't actually made any effort to time it) I will fall asleep almost instantly, and if I wait for it to pass it will take much longer, often over an hour. If I do succumb to a nap, even if it's only a minute long, I'll feel physically different, like my mind is buzzing, or my skin is tingly somehow - hard to describe accurately - but the result is severe insomnia, hours and hours of just lying there. Though maybe I am sleeping randomly while lying there, I had an ex tell me she once saw me sleep with my eyes open. Supposedly I thrash around a lot too.

I sleep like I'm dead sometimes, impossible to rouse no matter the scale of the ruckus, and will get really pissed if anyone tries to disturb me (I have no recollection of it).

I'll have these periods where I'll be unable to sleep more than 5 or 6 hours before I wake up, and I'll wake up exhausted and delirious but I won't fall back asleep, so I just get up out of frustration. Invariably I end up struggling to stay awake at random times throughout the day. How tired I feel has little effect on how quickly I fall asleep. Then there will be a period where I can't seem to get enough sleep.

Usually if I have trouble falling asleep I can stay asleep, and if I have no trouble falling asleep I have trouble staying asleep.

I've sat reading something I found thrilling, and I couldn't stop nodding despite having had a full 8 hours the night before - stomping my toes, pinching myself, shaking my head like I'm insane, trying to stay awake, and still unable to keep my eyes from crossing, my head from nodding, etc. Literally impossible. It passed after an hour or two, I didn't think I'd slept at all and I thought I'd been working continuously but I noticed that the timestamps of two of the documents I was working on were two hours apart, when they shouldn't have been more than 5 minutes apart. So there's almost two hours that went missing, and I was in a library on a public computer near a research desk, and sleeping is definitely not allowed there, so I couldn't have just napped on the keyboard. I'm wondering if that was an episode of "automatic behavior." I did it once behind the wheel over a decade ago and it ended in a terrifying high speed spinout. I haven't owned a car since...

The thing that makes it difficult is that I've had so much insomnia problems in my life, that I have trouble believing it could possibly be narcolepsy. And it's not like I'm collapsing every couple hours, it's usually just once or twice a day that I feel intensely sleepy, and I can usually fight through it (or so I think, maybe I am sleepwalking through it?).

But, here's the stickler: I've had cataplexy symptoms before. I think in most cases it's been subtle enough I probably missed it, where if I'm upset or stressed I sometimes feel weak or clumsy, and sometimes if I'm laughing a lot I'll wobble a bit and bump into things, feeling mildly unsteady. That has other possible explanations though. Maybe it's normal, I don't know.

One time I was dealing with a very scary individual I was living with, and I thought he may have been planning on trying to kill me (turned out he was) - a few times I got really weak after dealing with him, and one time as I walked away my knees and everything turned to jello and I crumpled to the ground in seconds. I fell like a bag of bricks. I recovered in just a few moments enough to get up and leave. The thing that always seemed so strange was I didn't faint - I was fully conscious throughout the entire episode, no dulled hearing, no grayed out vision. I've fainted before so I know what that's like. Now I'm reading that cataplexy is almost diagnostic of narcolepsy, so that really makes me wonder. I had an EEG done years ago - I don't have epilepsy. If I had a brain tumor I'd be dead by now, and if I had a stroke I'd have had some serious problems that would be hard to miss.

Sorry for writing so much, but I felt like anything less would be too little information given all my questions. There's a lot of symptom overlap between narcolepsy and ADHD (boredom leading to sleepiness), so it's really confusing. Any insight would be GREATLY appreciated!

Thanks!!!

 

P.S. To clarify, I have one question I really want answered: Is this normal for ADHD? Also I'm not really looking for replies that just say I should see a doctor - I know I should, and I do genuinely appreciate the concern, but I'm very much interested in answers that address more than that. :)



#2 dormir

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Posted 04 April 2013 - 09:01 PM

Hello!

 

 

I'm kind of in the same place as you.  I have had ADHD my entire life, but wasn't diagnosed until almost two years ago.

 

 

I have had vivid dreaming, SP, HH, EDS and maybe mild cataplexy (jury still out on that) my entire life, too.  

 

 

I have also always had problems falling asleep at very inappropriate times (driving, in class, at work at a desk, etc).  I have also recently started falling asleep after taking Ritalin, which I recently found out is consistent with ADHD.

 

 

I was reading about sleep problems and ADHD and I guess that supposedly us ADHD'ers usually tend to have chronic insomnia and can be easily aroused from sleep.  According to people on here, people with narcolepsy can also have insomnia, so I'm not saying you don't have narcolepsy, but chronic insomnia can partially account for EDS, I think.  

 

I never considered insomnia because I usually don't have problems falling asleep and when my sleep is interrupted by vivid dreaming or SP/HH, I can go right back to sleep.

 

 

You should have a sleep study regardless.  Just know that if you are taking any stimulants for the ADHD, you will most likely have to stop them at least 2 weeks before the sleep study.  It's a rough go for sure and ugh, the sleep study.  If you can afford to go to a really nice sleep clinic, do it.  I think having a good bed (not a hospital bed like I did) and a good MSLT environment (quiet, not loud like I did), can make a huge difference.  It also helps to have a thinking outside the box type of physician.  



#3 TangentManic

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Posted 04 April 2013 - 09:13 PM

Yeah, I won't be able to stop my Vyvanse for two weeks, not with the obligations I have to deal with right now. That part is a total impossibility.

 

I have periods where I wake constantly and can't get much sleep, and I have periods where I can sleep 8 hours, but I'm always tired no matter what. Wired and tired I guess is what you'd call it, usually I can't fall asleep easily but it's like the analogy from earlier...

 

Say most people have a car and can drive away whenever they need to (sleep when needed), I'm carless and I have to catch the bus that only comes at random times (I can only sleep when the delirium hits, and I usually don't know when it will, but if I put my head down when it arrives I am gone in seconds).

 

It happened again today, embarrassed myself, thankfully I was at the back of the lecture hall but I was nodding hard at a seminar with a very notable speaker whose work I was definitely interested in, every time I blinked my eyes would stay shut because I fell asleep and my head tipping would whip me back awake, but my eyes still wouldn't focus, and I was gone again. I slept 7 hours last night too. After it was over and I was able to walk around I felt more awake, though still tired of course. >_>



#4 lizzQ

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Posted 12 June 2013 - 12:22 PM

I was diagnosed with ADHD but the stimulants just weren't cutting it anymore and your sleep sounds almost exactly like my sleep. By college, I couldn't fall asleep when I needed to, slept when I couldn't afford to, and had periods of sleeping like 20 hours each day, as well as periods of barely sleeping. I couldn't get anything done because even when I was awake it was like I couldn't access my brain, I couldn't focus or get my thoughts to calm down so I could actually piece them together. The only thing I could hyper focus on was my artwork.
I had cataplexy in high school once after storming out of my guidance counselor's office and I was so scared I didn't know what was happening so I started panicking and called out for help. I thought it was a panic attack. Now I realize it was cataplexy.
Go see a sleep specialist. I'm on xyrem 2 months now and I have to significantly decrease my concerta. I was still sleeping on 108mg before xyrem and during titration, but now even the 54mg dose is too much for me to handle. I would also suggest taking antidepressants because orexin-cell neurons are supposed to also signal serotonin, so serotonin output is limited.





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