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Unresponsive During Sleep Attack?


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#1 eww

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Posted 20 December 2009 - 09:03 PM

So last week I was writing an exam and I put my head down for a scheduled 20 minute nap and didn't wake up. The staff at the examination centre tried to wake me but eventually called for paramedics. I was out for a lovely 2 hours, all the while able to hear and feel everything going on.

I wasn't all that worried about the sleeping thing, (the ambulance/hospital/giant bruise from the sternum rub thing was not appreciated though) but now my father and his girlfriend (a dr) are "worried about my health and wellbeing". I've had a busy and stressful, but mostly successful, semester but now I'm having to try and justify myself. I've lost weight in the past few months and apparently they're firmly of the belief that I'm depressed and the episode was not related to a sleep disorder at all but rather my body shutting down for emotional reasons. I (as well as my therapist) had considered me to be doing really well lately, happy, coping confidently and looking forward with hope and excitement but I'm tired, sore and pissed at this point so who knows, maybe they're right. And now I'm throwing it out there.

This wasn't cataplexy, had no emotional trigger and lasted for 2 hours but I was unresponsive except for eye flutters. I figured it was just a sleep attack. This was not the first time something similar has happened, though it was the longest time. Does this sound Narcolepsy-related, or should I look into other causes?

#2 jenji

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Posted 21 December 2009 - 01:30 AM

Hey Ewww.


Sounds like a cataplexy episode, albeit it an extended one. I was juggling grad school and teaching at the same time and while the experience and opportunity to do so was lovely (full scholarship, so yeah lovely!); that is I loved my class that I was teaching, the classes I was taking, as well as my cohorts, my body tends to have cataplexy when I'm pushing myself too hard as well, aside from emotional triggers like laughter, fear et al. My sleep doc said that I needed to cut back to minimize any further, serious episodes of C. And yes, I was out for one for about 30 minutes (after having put my head down for a rest) and then kept having them on an off that entire evening (not with my head down, while trying to navigate my way home with friends helping me) when I finally was driven home. Too much stress on my body in that I was doing too much. I also have comorbid conditions (lupus, APLS, and so on) so it may make me a bit more vulnerable to C whilst stressing my body even though I feel pretty decent; that is, I was muddling along okay. But then it started. So, it could be C. Prolonged episodes that have not been emotionally triggered are more common than you might think. And just b/c it's not the norm for you doesn't mean it's not C. I had very minimal C until I started pushing myself too hard.

Good luck and it's surely a good idea to talk to your sleep doc about it, but don't worry in the interim that it's something horrific happening (although C does suck) like another neurological issue. Sometimes episodes are longer.

best,
jenji

#3 eww

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Posted 08 January 2010 - 03:01 PM

Thanks for the response. I have another few (million) questions though. What is the difference between cataplexy and a "sleep attack"? The reason I wasn't at all worried about the whole situation is because it is very VERY common for me to hear/feel during a nap. I used to just consider it "resting my eyes" but my MSLT showed I had fallen asleep when I didn't think I had. And subjectively my body feels different when I'm napping. Almost like my body disappears, I can still feel when people touch me or whatever, and if I'm propped up in an awkward position I definitely feel the ache. I used to think that I COULD move, I just didn't want to badly enough. But frankly anyone who's ever had a sternum "rub" (I prefer the term flesh-grind) knows that there's no way to not WANT to move during that. Apparently I wanted to move so badly my eyelashes fluttered.

Hm. It's like... when I'm awake I can close my eyes and instinctively know where the tips of each of my fingers are. When I nap that proprioception melts and warps so that I can't exactly tell which finger is which etc. At these times I also go completely limp-noodle, without muscle tone. It actually freaks people out, including the paramedics. But even with all of that my "mind" is very often still present. I can think about how it feels, rationalize it and debate what it all means in my head.

I know it all sounds incredibly weird when I literally describe it but I suppose I'm still trying to figure out what everything I feel subjectively means in reality. And my dr is far FAR from helpful.

#4 ndenning

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Posted 05 February 2010 - 01:48 PM

First let me say that it would sound incredibly weird when you describe this, except I've lived it -- with one exception. Thankfully, no paramedics have gotten involved. I have scared my husband and a friend, though.

To answer one of your questions the best I can, the difference between a sleep attack and cataplexy is that with cataplexy, you are aware of everything around you but cannot move. However, with a sleep attack, you actually fall asleep. There is also sleep paralysis, which is very similar to cataplexy but occurs when trying to wake up or when falling asleep. (Forgive me if I have this incorrect.) For me, I have a mild case of Narcolepsy, so my sleep attacks do not happen suddenly -- I can usually get somewhere safe and secluded from gawking eyes first. I've only had a couple of instances of cataplexy, all of which pre-date my diagnosis and prescribed medication. Sleep paralysis, however, is pretty common for me. I've had to explain to my husband how to tell the difference between sleep paralysis and me just being lazy and not wanting to get out of bed. The difference, I explained, is that if I'm being lazy, I will respond verbally somehow. If it's sleep paralysis, I can't respond, but I want to.

I think what you described in your original post would be the sleep paralysis because it happened after taking a nap and trying to wake up.

I'll try to pass on what I've learned helps me in hopes it will help you and/or someone else: Relax and don't fight quite so hard.

Basically, if I internally panic during a sleep attack or sleep paralysis, though no one in the world would guess I'm panicking since I'm completely unresponsive, it prolongs the attack. When my doctor diagnosed me with Narcolepsy, he explained that there is a sleep center and a wake center in everyone's brain. In a normal brain, these will give way to the other upon request, albeit reluctantly at times. In mine, however, the sleep center takes over the wake center sometimes against my will and refuses to relinquish control.

Keeping that explanation in mind, when I have a sleep attack/paralysis, I try to remind myself that what's happening is OK. I really try to convince myself that it's normal, because in a sense, it is for my body. Then, I try to concentrate on coaxing one part of my body to respond, as if it is disconnected from me somewhat. I literally have to think, "Ok, eyes, you want to see what's going on. There's cool things around you. Just blink once and check it out." Yes, it feels silly to type that out, but it's the truth. Usually, if I can get one part of me, such as my arm or my eyes or maybe my voice, to respond, other parts will usually follow suit -- slowly, and still without rushing or panicking.

Sometimes, though, I just have to give in and not fight at all and allow the sleep attack to happen. I have to lie down or recline in my car, etc., and just not fight it for 30 minutes. If I do that, I usually wake up on my own and actually feel refreshed.

I hope this helps. :)

#5 jenji

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Posted 05 February 2010 - 04:35 PM

Hey, Ewww...

I suppose I have always believed my sleep attacks to be different from C in that sleep attacks are an overwhelming feeling that if I don't lie down flat somewhere as soon as possible, I'm going to absolutely die. And I suppose by die I mean, drop to the floor with exhaustion. That's the best I can describe it: it's an exhaustion feeling; I'll feel extraordinarily unwell. When I had my MSLT I had quite a few sleep attacks that I had to literally touch myself on the face over and over to get through (my hands are always freezing cold, so it helped a bit) because the technician didn't want me to go to sleep yet and once she came in and allowed me to sleep, well I got into the bed and would swear under Oath that I never truly fell asleep, although I fell asleep in 4 out of 5 naps; it was that twilight nap that you speak of; a different kind of awareness and for me, my naps are usually not at all restful if I'm in this twilight state.

On the other hand, my cataplectic episodes have felt different in that they catch me somewhat unaware that it's about to happen, I don't have an urgency to lie down. I mean, sometimes I'm feeling relatively engaged and quite well and still I'll have small, short bursts of cataplexy and it frustrates me because I'm usually just trying to listen to someone talk or in fact talking myself, however I know that's C in that if I do indeed crumple in on myself, I'm keenly aware of my surroundings and supremely annoyed that I can't just open my eyes and carry on like a normal human being. I'm quite impatient, however fighting it only makes it worse to get out of, so I settle in and just ride it out. My eyes flicker like mad when I'm having a C episode and as I go in and out of sleep --> wake my body will sometimes jerk: awake, limp, awake, limp--like someone is throwing a switch on/off. I tend to jerk much less if I don't fight the episode and just ride it out.

Honestly, if you're having prolonged episodes, whether C or SA, it would seem that you're pushing your body too hard.

Oh, and MDenning's point of "just blink and check it out" made me laugh out loud because when i'm having SP or HH I tell myself: just open your eyes and look at your hands--which forces me to try and move so that I can see my hands. Although, as you have probably all experienced, I do wake up and see my room and my hands only to find out I'm dreaming that I've woken up. Rinse, repeat. It's a process and it takes practice.

Just remember, what you are describing probably sounds odd to friends, family and even your doctors because they haven't experienced it first hand. However, it doesn't seem odd to me in the least. People who don't have N w C just aren't going to understand it, period. A friend of mine was telling me the other night about how he was amazed by Narcan's ability to bring someone out of a heroin induced coma-like state (he was watching a documentary) and he said: can you imagine your brain just going from coma to alert in seconds? Can you imagine your brain doing that? My response: is this a joke?

Tell me, have you had an MRI lately?

jenji

#6 eww

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Posted 16 March 2010 - 05:25 PM

(long overdue) UPDATE- So I FINALLY saw my sleep specialist today. He called it "sleep paralysis" said it's normal with my condition. Dr Dickhead admonished me that if I even bothered to read up on my condition I would know this.

(on a side note, if I get caught plotting to do terrible, terrible things to my sleep specialist, they would totally write "difficult patient" on my file and it would follow me forever right? I mean, if it's not already there, in red... bold font... underlined multiple times. But still. It's worth considering, right? :unsure: )

Anywho. Yeah, so I casually commented that sleep paralysis is usually referred to in terms of a few minutes in length in the evening/morning when going to sleep/waking, to which he responded that sleep paralysis can happen at any time, especially during intense or emotional situations. I refrained from asking the difference between "sleep paralysis" and "cataplexy" in a clinical sense because he was being generally pleasant. He even said I seemed to have things much more together and I didn't want to poke the beast.

He's given me a tricyclic anti-depressant (Trimipramine) and claims that it should eliminate the problem.

Anyone had any experience with Trimipramine?

#7 eww

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Posted 29 April 2010 - 09:31 PM

So. Trimipramine. It didn't eliminate the sleep paralysis problem so much as likely caused tachycardia. Or more technically tachyarrhythmia. Nice. My heart apparently decided NASCAR was the way to go and my pulse was clocked at 134! B)

I'm currently undergoing cardiac testing. Generally I'm fine though. I feel "a bit funny" from time to time but not like I'm ill or anything's seriously wrong or whatever. Just frustrated.

I just thought I'd give an update.

#8 SarahAddy

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Posted 14 June 2010 - 06:23 PM

I have the nearly EXACTLY the same thing happen to me when I am not taking an SSRI. They say it helps regulate the REM sleep, which is the mixup that causes paralysis and cataplexy. I hate sleeping when I am not taking Effexor XR because I know I will get "trapped" in the "in-between." Your description was perfect! I try to focus on breathing, since it is something physical that happens when I am asleep or awake, and if I can start to control my breathing I feel like I can come back into my body. I really do think to myself over and over again about trying to find my hands and feet and legs while I am breathing. HaHa, super crazy really, no?

I should also say that I am not a proponent for Effexor. I have heard and read horror stories about it and it is very difficult to come off, also you will gain weight and have no sex drive. For me, however, those things were nothing compared to the cataplexy and sleep paralysis multiple times a day.

Good Luck,

Sarah

#9 eww

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Posted 14 June 2010 - 08:50 PM

Ah yes. Well, let me just say that the saga continues.

I had another sleep test last week at a new clinic and it was mightily f*'d up. I fell asleep in only one of the four naps at 16.5 minutes! Seriously! It was... surprising to say the least. My previous MSLT had me falling asleep at about 5 minutes all four naps but with no sleep onset REM.

So... this sleep dr says he doesn't think I have Narcolepsy. BUT, he says I definitely do have atypical Cataplexy. This is a complete reversal from my previous sleep dr, who diagnosed me with Narcolepsy without Cataplexy.

I told you. Completely f*cked up.

The new sleep doc also claims that the above attack was not sleep paralysis. Apparently sleep paralysis lasts only seconds to minutes. No longer. He gently brought up that the attack may have been related to stress and emotional conversion. Which, well, would suck but if that's the actual answer I'll take it. I'll take any firm answer at this point however, I really don't think that's it. It wasn't the first time that had happened and they're not always related to stressful events (like an exam). A year ago I was "discovered" unresponsive by university staff as they were closing up the coffee lounge and was out of it for 45 minutes. I understand that some would find it stressful that the coffee shop was closing up for the night but I don't even drink coffee. It was just a convenient place to crash (or so I thought). LOL.

So... yeah.

This whole not-sleep-paralysis thing is again another complete reversal from what my previous doc said. Ironically, this new guy is generally much better regarded and I pretty much begged my GP for a referral to him.

I've been told that my next stop is at a Neurologist to get an EEG and an MRI. I'm in a bit of a mood about this new development because well, it all seemed to fit! And I had just come to a place where I was happy and ok with it. I was just reaching that acceptance that I'd been going for and was finally able to really reevaluate the 'lazy' and 'crazy' labels I've been wearing for far too long. Now it seems they're back on the table and I hate that.

The sleep dr IS in agreement that my brain is thoroughly whacked though, so that's good. Kinda. :blink:

#10 Finallyfoundtheanswer

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Posted 24 March 2013 - 09:18 PM

OMG! Here goes .... I have trouble sleeping at night ... for over 50+ years. For the past month or so, I'm taking ONE HIT of marijuana before bed. I've cut my sleep med (Trazadone) from 200 to 100mg, and with the extra edge of the weed, it's working!!! I often smoke with friends, and have never had a problem. I am a lightweight, I don't smoke a lot .... a joint could last me a week.

 

Ok, so ... usually I light up, wait a while, get really sleepy and, I assume, fall asleep (but I don't always keep track of how long it takes me to fall asleep). Sometimes it's for 45 minutes, sometimes it's for a few hours.

 

Twice in the last month, I have been invited to a friend's house for my hit. On both those occasions, I have been taken by ambulance to the ER. On the way, I've had to endure sternum pressure, smelling salts shoved violently up my nose, comments of "this is REALLY going to hurt," as they jam IV's in my arm, etc. This past episode (earlier this week), I came awake in the ambulance, but I was still not completely "with it." All I knew was that the EMT's were hurting me. I made the mistake of muttering "Just let me die," because I wanted them to stop hurting me, not because I was suicidal.

 

*** In both instances, I remember being 'very deep in thought,' watching tv, smoking one and only one hit, and feeling quite peaceful and serene. In fact, during the first instance, I honestly thought I was experiencing my own death, and I was quite happy ... not that I had done anything to "rush" death .. just that I couldn't remember being that comfortable in a long time.***

 

So, among other things, apparently I "held on" to one of the medics while being transported into the ambulance and I heard her say, "She's holding on, she's faking." Then, I had people screaming at me (apparently wanting me to wake up) asking what I had taken, how much, who was my roommate (it wasn't my apartment, but no one seemed to believe it).

 

When they handed me off to the Emergency Dept. this time, they told the intake nurse, "She's on something. She's high. She's faking. She's all yours." !!!!!!   Needless to say, I get Nurse Ratchett who literally threw my discharge papers at me when it was time to leave.

 

The first episode kept me in the hospital for 8 hours, because apparently my potassium was importantly low.

The past time, everything was fine. I left in 2 hours. 

 

In both cases, I was told that my heartbeat was fine, my vitals were fine, there was nothing wrong with me, and I could leave. In fact, during this past incident, I spoke to a policeman. Despite all these *accusations* of drug use, no one even did a tox screen; I offered to pay a fine for the pot and the cop told me not to worry about it.

 

Anyway, I'm rambling.  I am under the contention that I just FELL ASLEEP. What is happening (other than not responding to my name) that is causing the ambulance to be called.  One of the things that led to my semi-diagnosis of Narcolepsy is that I have periods during the day where I "zone out" while during stuff like playing cards, watching tv, etc.  People just call my name a few times or, if it lasts longer, just wait for me to wake up.

 

Other than changing friends (who don't even come to the hospital with me), is there anything else I should be aware of?? I've voluntarily stopped driving for the past year.

 

Also, has anyone had similar experiences with EMT/ER staff? How did you handle it?

 

P.S. Apparently, my BP was 168/128 or something this time; it's usually very low. Thing is, I don't know what it usually does at night, just before I go to sleep.      I also considered sleep paralysis ... maybe I'll have to wear that on a dog tag.



#11 DeathRabbit

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Posted 25 March 2013 - 09:48 AM

These are really sounding more like absence seizures than cataplexy, but it can be difficult to distinguish between the two sometimes.



#12 exanimo

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Posted 28 March 2013 - 06:07 PM

In my opinion, it sounds like sleep paralysis.

 

I would be extremely wary of your new doc. I don't know if you were still on the trippamine, but with all the tachycardia and whatnot, that could easily screw up an MSLT. 

 

There is no atypical cataplexy. None that I've ever heard of anyway. It's one of those rare symptoms that can only be attributed to one thing: Narcolepsy.

 

I never thought I had sleep paralysis until I read Julie Flygare's book. This is basically how my episodes go:

 

It feels like I'm in my body, I can somewhat distinguish my surroundings, but they're kind of hazy. I can hear things, or people if they're talking. I can see things, somewhat, again, it's more hazy than vivid. I usually want to move, to see who is talking or get up. But I can't seem to move. *At this point, I just decide oh well, I guess that's cool* and it goes on. Eventually I either wake up or go back in to a dream. I never panic about not being able to move. I just always attribute it to being a dream. But I do want to move, I just end up deciding it's not worth fighting. The perception of my surroundings is warped though. Like you said. I usually have internal conversations with myself at this point. About whatever is going on, or just general rationalizations. 

 

So the question I have for you is, during these episodes, have you ever asked someone to repeat exactly what was being said? Is that what you heard? Memory is a funny thing, during sleep paralysis and hypnogogic hallucinations, our brain waves are interpretted as wakefulness. Thus, we remember them. Despite that they were dreams and not real. There are sleep paralysis without hallucinations though. But 70% of the time, it is accompanied by hallucinations. 

 

Again. I would be really wary of the new doc. I understand his wanting his own test results, and only reading those results. But perhaps you can get him a copy of your previous MSLT, and have him take a look at those? It's a bit different than reading a diagnosis another doctor gave you. It gives him the actual data that he can interpret as he sees fit.

 

Good luck!



#13 h.wynn

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Posted 29 March 2013 - 09:46 PM

I agree that it is sleep paralysis.  I have hade those last for up to an hour. It was very scary at first. I found that if i go to sleep i can wake up and it is over. Its alot faster that way, most of the time nowone even notises it.