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Does This Have To Do With Narcolepsy/hypersomnia Or Something Else?

narcolepsy hypersomnia eyes jerking

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#1 equilibrium



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Posted 16 November 2013 - 01:37 PM



I am in the process of assessment and figuring out why I am so tired all the time. Not tired but...out of it daytime. I don't know if it's narcolepsy, hypersomnia, circadian r. issues, etc. 


I have just had a nighttime sleep study and a mslt. More boring almost a full 24 hours that I have ever experienced. I have my followup next week.


The one thing that I didn't discuss or ask was that during the day I get a tad zoned for a few minutes and my eyes suddenly jerk back and forth. I can feel it and sometimes I feel like falling asleep that second and like I am trying really hard just to focus, be awake. But, it isn't like the standard big huge crashes. I feel, sometimes that 3/4 of me is almost like asleep when I am awake when this happens ...like everything is shut off but there is just barely "me" keeping things going. I have trouble at home. Severe trouble. If things are messy, out of place, I have to think...and can't...have to sit looking like a zombie. Everything has to be automatic, routine.  Often the beautiful blue skies are too bright and as much as I feel I had energy to get out of the house, do things...it's incredibly hard to get out. It feels like it's night time with bright lights on that are bugging me. Anyhow, there are tons more things I am worrying about but most...and I have had two mris for nerve/parasthesias/pituitary stuff but came back good. 


The other thing, probably unrelated to sleep issues is that if I yell like yelling to the other room on and on to the kids lol, getting overly stressed/noise etc it feels like I am about to pass out. It's like a weird surge of something and then I feel like I have to lay down. Totally drained exhausted immediately.  Maybe that's a hormone, adrenaline, cortisol or something? 


Anyhow, not sure what my results will show. I had some anxiety so didn't fall asleep as fast as normal, and was super cold during the day so couldn't settle much. I did sleep at 5 naps but  I was anxious of the pressure so it didn't feel as normal to me. They kept flinging the door open and flipping lights on suddenly and I was like, ugh! Already?!!!   Did you dream? Some were I think so (two) and three were yes, definitely. The only thing is the last 2 naps were really starting to get back to my norm and the tech left, I thought about something for like a minute and then BAM the door opened. I said, seriously? It's been only like 1 minute! haha. I don't think I went into rem sleep quickly because when I was falling asleep I could feel my legs or body twitch...I think that happens in early stages of sleep?


Anyhow, happy to start figuring out why I'm so groggy, sleep drunk feeling most of the time..



#2 equilibrium



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Posted 16 November 2013 - 01:50 PM

Sorry, one more thing. I am confused about the whys behind a few of my things. Can anyone shed any light/experiences that might be similar?


During the night once I hit say 4am to 630 am I get into such a deep sleep that I am awakened by a child, my husband saying something, a bad dream etc...I wake and feel like my body is not my own. Paralysis, I have had full on without just a sensation but full on yelling "I can't move! I'm stuck!". The thing is that if I hit this time where this happens a lot it is extremely difficult to wake me. I will wake after an hour of my husband trying to get me up and he has to help me off the bed (lift by hands) and he has to get me my medication (modafinil). But, my brain is closed. Full on can't think, "thud" and this lasts for hours. The only beginning of wakefulness is when I take my second dose of modafinil (200mg x 2 daily) and a bit later...I feel "clearer" like I was in deep fog all day. I can't respond to my kids very well, engage, anything. It's extremely hard. I won't fall asleep while they are talking/playing beside me most of the time but my body /brainexhibits this...90% shut off. I've been battling confusion in the day, can't get organized, dressed, fed, etc because I just can't "think". Then around 3-4pm ish it starts to get better and by dinner I am now excited I feel it's like "just woke up refreshed" and now can start to do things and feel happier, better...I feel useless as a parent right now, and a person. Each day is I'm going to get out, go hike with kids, walk, park...and then...I get overwhelmed because I can't think and it's bright, and I feel like it's the middle of the night and I've pulled an all nighter...

#3 exanimo



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Posted 05 December 2013 - 09:07 AM

Hi! Okay I will try to answer your questions as best as I can.

Your first paragraph, sounds like a sleep attack. Or automatic behavior. The part about 3/4 of you being asleep but the other 1/4 being there just to keep things going, is exactly what automatic behavior is. You go in to a total mental fog, where it is impossible to think straight and you just keep going. And a lot of times, you make mistakes since you are not cognitively there. An example: I often come home a total zombie. I get on my computer and I try to do something, like answer emails. I'll suddenly come to, and realize that I've been typing nonsense. With no memory of typing such nonsense. And often it is full of mistakes in grammar, spelling, and sometimes I've typed some warped story about a dragon. Or something weird like that! Othertimes, I'll be working on something and will just suddenly realize that I have been trying to write the same sentence for the past 10 minutes. Yet it only seems like a few have passed and I really don't remember anything except that my brain has just turned to mush. So yeah, that is automatic behavior. For some reason, it is separated from sleep attacks. But I do believe they are the same - basically your brain has sent you to sleep and yet you continue to do things. It's all about the physiology of Narcolepsy - which briefly, is your brain (lacking the neurotransmitter hypocretin/orexin) being confused. It cannot properly regulate sleep and wake cycles. Cataplexy comes from this as well - your body interprets strong emotion as it might a dream and suddenly tries to paralyze you as it would in REM sleep. So with automatic behavior, your brain has put you to sleep (I'm guessing here but I would think the brain waves would be similar to sleep) and yet it has not paralyzed your muscles as it would normally, at least in the REM portion of sleep.

I cannot really relate to your mention of bright lights - since you mentioned paresthesia though, my guess is it could be related to that. Although some people on here have mentioned lights, especially those form projectors, can cause cataplexy or other N symptoms to become apparent immediately. But I really don't know.

When you mention yelling at the kids, and feeling a surge of something, this makes me think cataplexy. Straight away! Because cataplexy is a sudden weakness of the muscles, that is usually triggered by a strong or intense emotion. But cataplexy comes in many forms. Many people on here and on other PWN forums have mentioned the sensation of 'waves' or a 'surge' as you put it, washing over them quickly (like just a second or two) and then feeling exhausted or tired. I actually had a pretty odd cataplexy episode today. I have mild C and have never fully collapsed, just general muscle weakness, my knees have given out on occasion, ect. Well I was at the store and I ran into someone who I did not expect to see. I felt like my legs were jello for the next 5 minutes while walking around the store. I was literally afraid that I might collapse. They just kept feeling like noodles, and I had no control over it. It eventually subsided, but I felt tired afterwards. Many PWNs have experiences this feeling of exhaustion or tiredness after C episodes.

I can relate to your experience with the MSLT. It was very frustrating to be awoken so soon after falling asleep! I cannot give you any answers though. Often when we fall asleep and feel as if we just fell asleep, but wake up and it has been 20 minutes, this is a deeper stage of sleep. Not REM. But it's possible - I'm not a doctor! But those deeper stages of sleep are often very hard to wake up from and may leave us feeling groggy or disoriented. This feeling is known as sleep inertia. Which brings me to your next question, about being a zombine for most of the morning. This is sleep inertia - the inability to fully wake up. Again, it is because physiologically, our brain cannot distinguish or properly regulate the sleep and wake cycles. So while most people who wake up, and hit snooze, will fall back into light sleep. Us PWNs often fall back into a deeper stage of sleep = we can even go right back to a dream we were awoken from! This is quite rare for normal folks.

Confusion, disorganization and forgetfulness are common with N. It's just because we have 'sleep attacks' and automatic behavior. It becomes nearly impossible to live normally. There may be a pile of dishes, a basket of laundry and kids who want to play, but after a long day, it's like "what more do you want from me?!" we just can't find the energy. It's extremely difficult to get through brain fogs, sleep attacks and automatic behavior.

A question: Were you off the Mofandil when you had your sleep study? Stimulants can interfere with the results and if your doctor did not take you off these medications prior to the test (usually at least 5 days or more) they didn't know what they were doing. Even antidepressants (perhaps especially antidepressants) can interfere with REM and are known REM suppressants (at least some antidepressants),

Good luck! I hope that helped some :) Please keep us updated!

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