Sleep Disorders

[firewatcher]

After looking up narcolepsy and seeing some of you with cataplexy or conscious paralysis, I am wondering if some of us don't have some "altered" versions of sleep disorders. Perhaps the conscious paralysis is actually narcolepsy, but with incomplete sleep mechanism, and happening while awake. I know that my Delayed Sleep Phase Disorder is not "typical" due to hypervigilance once upright (I won't go back to sleep if I have to get up with the kids or go to the bathroom.) With sleep being almost purely autonomic, it would make sense that it would be screwed up too. Just curious.

[jdqm]

This is interesting. After I come to from passing out I am in conscious paralysis for several minutes. Once it was almost an hour before I was able to move and communicate.

Joy

[Guest tearose]

I have had two sleep studies which show non-restorative sleep due to micro-bursts of awakenings...but still have no clear diagnosis. It appears to indicate that it is dysfunction of the ANS while sleeping. I also get up two or three times a night for trips to the bathroom but do go back to sleep.

[jjb]

HA! I was just reading about this subject.

I have issues w/ delayed sleep phase, sleep paralysis, good ole insomnia etc.

Ava has desats and HR elevation during sleep and unusual episodes that may be cataplexy (or something similar) or an unusual seizure that leaves her paralyzed and unable to speak, but she can respond with her eyes.

Ava's epi neuro seems to think it is probably a seizure but maybe something else, aut neuro thought it looked more like a parasomnia, cataplexy maybe.

[firewatcher]

I am wondering if the fainting or POTS symptoms trigger that fight or flight response which is similar to a narcoleptic response to strong emotion (or like the fainting goats.) Could our ANS dysfunction also be messing with the "classic" narcoleptic response and causing the brain to pull cataplexy/paralysis in a conscious, possibly hyperadrenergic state? I believe there is also a correlation in brain-waves and (lucid dreaming) dream-recall ability to hypervigilance and ANS dysfunction. Just a theory.

[jjb]

I think probably so.

[jump]

Is it too late to add "no diagnosis" to the first question? I want to vote but it won't let me leave the first question blank.

I've had sleep problems since adolescence, but I think I also could have had some ANS stuff starting in adolescence, although it didn't get debilitating until early adulthood. I find when my POTS symptoms are worse my sleep problems are worse.

I have stunningly vivid dreams now. I've always had dreams I could remember, but nothing like this. For the past three years or so, it's honestly like going to the movies every single time I fall asleep.

For the past two years, since my dysaut has been it's worse, I seem to have no trouble falling asleep, but then I almost always wake up and can't sleep again from about 2 am to about 5:30 am -- then I can sleep again. I tend to assume this is some kind of weird circadian thing, but I've never been tested for anything. When I started taking vitamin D, I started sleeping better, but then after about a week or so I started having the same problem again.

I never, ever, ever sleep more than 3 or at the very very most 4 hours at a time without waking up. Usually I wake up every 2-3 hours like clockwork. I can actually count on one hand the number of times I've slept an entire 6-hour night without waking up, because the few times it's happened it's been so startling I actually notice it. I don't think I've slept 8 hours straight since I was a child.

To be honest, though, I sort of thought this was somewhat normal until I started living with my boyfriend -- and I noticed he doesn't get up in the night AT ALL. I thought maybe it was a guy thing, to be able to sleep like that. I mentioned it, jokingly, to some of my friends... who all seemed really surprised that I don't sleep through the night. When I started asking around, I realized there are way more people out there who sleep through the night most of the time than there are people like me. It seems like lots of people have the occasional night where they toss and turn, but very very very few have nights like that all the time. I was shocked, and I have talked to my doctor about it, but I've had so many tests in the past year we just sort of decided not to do much about it just yet.....

[mjan]

Yes thanks for this topic/poll. I too could not vote as they are STILL trying to diagnose me with narcolepsy and cataplexy. Now they are draggin their feet as my Autonomic testing was 2/5 and still no tx or help. My PCP has been trying to reach the neuro who tested me..and I said I would see him again.

So YES I have not only nighttime APNEA..but DAYTIME too. And Yes they think my "spacing out" is micro sleeping where they brain "shuts off" reality to make up for poor or lack of sleep.

And YES my "episodes" which they think are narcolepsy with cataplexy ALWAYS start with autonomic symptoms..and end up at time with altered consciousness..that looks as if I am unresponsive BUT I can HEAR. IT takes me HOURS to come out of this.. not your typical narcolepsy. I cannot speak for a long time...or its messed up..I am in a major FOG..and I present like I just had a stroke..weakness and off balance too.

Go figure.. I am tired of this..and trying to keep working

Jan

[mjan]

OH yea.. PAIN keeps me up at night..but mostly I CAN sleep through the night..but once in awhile.. ALWAYS around 3:30 AM I wake up and remain awake for a couple of hours.. knowing I have to get up and work.. its gruesome.

Jan

[pat57]

I have had episodes that look just like Atonic Seizures or Catalepsy. But for me its is NCS. Mine are very brief tho - like 20 seconds. I've had lots of seizures

from lack of 02 to the brain. Properly called convulsions when lack of 02 is the cause those are 2-3 minutes.

[firewatcher]

New choice added. Please vote!

Thanks!

[ramakentesh]

The leading specialist on POTS in Australia told me that many patients with POTS suffer from what psychiatrists would call 'hyper vigilance' - and the excessive sympathetic overactivity is the cause of this symptom.

Interesting thread.

[Maxine]

Interesting poll. Although I am diagnosed with obstructive sleep apnea, my orthopedic surgeon thinks it's related to my cervical/cranial instability/brain stem compression, and believes it's central sleep apnea. He said I do not fit the profile for obstructive sleep apnea.

I wonder how many people are also misdiagnosed with obstructive sleep apnea, who may actually have central sleep apnea.

Thanks for the poll!

Maxine :0)

[green]

I believe that dysautonomias sometimes interact with narcolepsy.

I have been diagnosed with narcolepsy by a polysomnography, which showed rapid onset REM during daytime napping. So, I'm pretty sure I "really" have narcolepsy and yet I rarely can take an afternoon nap and I have only experienced the involuntary loss of consciousness that characterizes narcolepsy once or twice in my life.

I think this is because during the day my CNS is working extra-hard to keep my blood flowing and while this is exhausting in the long-run, in the short-run it keeps me awake. My brother has narcolepsy, but not a dysautonomia, and he falls asleep whenever and wherever the opportunity arises.

Interesting poll. Although I am diagnosed with obstructive sleep apnea, my orthopedic surgeon thinks it's related to my cervical/cranial instability/brain stem compression, and believes it's central sleep apnea. He said I do not fit the profile for obstructive sleep apnea.

I wonder how many people are also misdiagnosed with obstructive sleep apnea, who may actually have central sleep apnea.

Thanks for the poll!

Maxine :0)

[firewatcher]

I believe that dysautonomias sometimes interact with narcolepsy.

I have been diagnosed with narcolepsy by a polysomnography, which showed rapid onset REM during daytime napping. So, I'm pretty sure I "really" have narcolepsy and yet I rarely can take an afternoon nap and I have only experienced the involuntary loss of consciousness that characterizes narcolepsy once or twice in my life.

I think this is because during the day my CNS is working extra-hard to keep my blood flowing and while this is exhausting in the long-run, in the short-run it keeps me awake. My brother has narcolepsy, but not a dysautonomia, and he falls asleep whenever and wherever the opportunity arises.

Interesting poll. Although I am diagnosed with obstructive sleep apnea, my orthopedic surgeon thinks it's related to my cervical/cranial instability/brain stem compression, and believes it's central sleep apnea. He said I do not fit the profile for obstructive sleep apnea.

I wonder how many people are also misdiagnosed with obstructive sleep apnea, who may actually have central sleep apnea.

Thanks for the poll!

Maxine :0)

Like a colored lens in glasses, I think that ANS dysfunction alters or distorts EVERY other disorder. Most if not all disorder classifications are based on symptoms which occur when the ANS is intact and functional. With us, the regular or "classic" symptoms are distorted or modified by the autonomic glitch. Just like we have no way of assessing our "conditioning/deconditioning" status because the markers are based on autonomic responses, I think our symptoms are changed because we don't respond "normally" to anything! We may have plain vanilla, fixable disorders, but they look either normal or really weird because our dysfunctional responses.

[erik]

I've got the "non-restorative sleep" or whatever it's called, which seems so common with dysautonomias. I almost wonder if that is "a given" with us. I can literally remember just a few days when I woke up feeling truly "rested and bright" (which lasts a few hours when it happens)... other than stretching back to childhood memories.

I've had bouts of overt sleep disruption (waking in panic/terror, myoclonic jerks, insomnia, stuck in tired-but-wired mode, etc.) that are definitely improved with better autonomic management... but "restful sleep" or "wakeful feeling" remain elusive (except during panic/terror modes ).

[ladyt]

hi..

I didnt answer the poll because I didnt know what to check.. It doesnt quiet fitt me..

I needed a lot and lot of sleep when younger.. Always dreamt alot, all sorts of dreams.. And waking up feeling paralized etc..

The sleep problems started years ago, and then after hiting my head it got worse.. And the resons i wake up are many, my bladder (if lucky lucky 2-3 times, normaly more all depending), dry eyes, pain, restless legs, and all the potsy stuff.

I had a sleep studie, and they found that I had major sleep problems, initial, medial, and terminal insomnia.. I have problems getting to sleep, staying in sleep and in the mornings.. And I dont sleep during the day, even if i whanted to..

And I had very very litle deep sleep, and somthing veird whit my rem sleep ( better read the stuff again)..

For periods if I got an half hour conected sleep it was great..

Now i take some pain killers and a smal dose of melantin every night. That doesnt work miracals, not even close. But i migth gett 1-3 hours sleep undisturbed in the early nigth, and then it varyes more the rest of night... Its seldom 3 hours, but it has happened..

Somthimes i take a stronger coctail, stronger painmeds, anthistamins, and gett to sleep pills.. Then i tend to sleep more and longer before waking. But seldom trhou the nigth.. mostly 4 hours, but sleep deeper and faster again most of the time..

I had one night whit 7 hours (i did sleep walk to the toilett but, I dont remeber that so...=))...

Somthimes when doing the coctail I ust feel like keep sleeping, like I whant to sleep sleep sleep.. other times I feel lovly refrehesed, and wish every morning was like this..=)

I dream of a good nights sleep..

sweet dreams to y all

[lmt033167]

I've fainted since I was 9, but every time I told drs they said unless it was a daily thing they weren't concerned, until I went to a cardiologist last year for heart problems and she sent me to see a dr and have a sleep study done.

I've had sleep problems for as long as i can remember, trouble falling asleep; then I don't go into rem sleep and very seldom do I sleep for more than an hour or two at a time. My sleep study showed I had moderate OSA and I can't tolerate the masks - they make me go into tachycardia and I pass out or get close; which they said was a panic attack even though I never suffered panic attacks until a month later after heart surgery

interesting thought

I wonder how many people are also misdiagnosed with obstructive sleep apnea, who may actually have central sleep apnea.

what's the difference?

[erik]

Obstructive refers to an anatomical obstruction of airflow... like stuff near the tonsils (adenoids???) or stuff like that (glottal parts falling in bad positions or whatever, disgruntled wives "accidentally" placing a pillow in an inconvenient location)... or an otherwise blocked/restricted airway. Central refers, usually, to brain trunk problem... where the ANS is "deciding" not to breath rather than "tolerating" some lack of breathing. Central is said to be incredibly rare... "it is said" that those who have central, more often have "mixed", which means both central & obstructive combined. Statistics are nice and all... but zebras are statistictaphobic.

Intuitively, it sure seems like folks with ANS trouble would lean toward "central or mixed", but I've not bumped in to any statistics or "science" in that regard.

Apnea can create symptoms very much like dysautonomia. It seems to have gained "recognition" in somewhat recent years, so docs are screening for it way more than before. One concern is that like many things, it can create/promote a harmful cycle where modest or transient trouble then induces some persistent (but initially minimal) damage. Then that damage pushes further to dysregulation and further apnea. And the cycle spirals to bad effect. It seems wise to screen and prevent as best one can. There are also "theories" about brain & nerve regeneration being somewhat resilient, so long as supportive circumstance exists (and maybe future med interventions will assist).

"Chronic hypoxia", "Apneas", etc. don't seem so different from dysautonomia with so called "chronic blood flow disturbances". Brain trunk damage is one "known" cause of dysautonomia... perhaps not "common", but known. The brain trunk is the ANS brain, in a simple way of putting it.

Anecdotally, when I first saw my doc & described myself... his first recommendation was sleep study to screen for sleep apnea. (I skipped that so far, but will get to it some day). One cannot do a useful "home screening" for sleep apnea without, as yet rare devices... but it was my attempting an amateur apnea screening that made my "odd pulse behavior" evident. I am now at POTS diagnosis instead (but will tidy up loose ends as I can). My point is that symptoms can be "coincidentally" similar!

Edited March 20, 2010 by Erik

[Griffin]

I have delayed sleep phase disorder and perodic limb movement in sleep (plms) which means I am constantly surfacing from sleep hence non- restorative sleep. I have always had delayed sleep, but now it is so bad I have complete day/night reversal.

[lmt033167]

Thanks Eric, I'm going to do more research on it until now I havent heard of central only obstructive.

I found my sleep study and found something I wanted to ask about. My HR was 115 bpm at some points during sleep, but mostly stayed around 70 bpm, the dr never said I had tachycardia during sleep.

Anyone know if this points to something or is the tachy worse since it during sleep? I've suffered tachy and VT for awhile and have told them I wake up sometimes with my heart racing - meds haven't helped this.

[erik]

I found my sleep study and found something I wanted to ask about. My HR was 115 bpm at some points during sleep, but mostly stayed around 70 bpm, the dr never said I had tachycardia during sleep.

I had pulse spikes like that in my own overnight self-studies (with a pulse-ox). While they are "associated" with various sleep disturbances and are probably a good clue... they aren't considered "diagnostic" for apnea at least. Gotta go by the more direct stuff like chest expansion, air flow, blood O2 & CO2, EEG, etc. at least according to these folks:

http://www.sleep-journal.com/article/S1389...0198-9/abstract

I like the WebMD page on central apnea (mostly because I have all the symptoms :

http://www.webmd.com/sleep-disorders/central-sleep-apnea

Plenty of other things can disturb sleep too. And there might be clues in subtle HPA changes that POTSies & such may share with folks like PTSDers and others (not to mention crossover folks):

http://www.nature.com/npp/journal/v28/n9/full/1300215a.html

Maybe studies will eventually probe out the subtle things as well as the big ones.

[MomtoGiuliana]

When my POTS was severe and during flare ups I generally sleep lightly/poorly. When I am not in a flare up everything with sleep seems pretty normal for me.

[Detrick7]

Jump,

Your post describes exactly what I have gone through since adolescence. Can't sleep through the night, can count on one hand number of times I have slept more than 6 hours striaght (without meds), being awake early morning for hours, than being able to fall asleep again etc. etc.

I did have a sleep study done, before I was diagnosed with NCS thought that sleep apnea was the problem. I did not have sleep apnea, but did show I woke up multiple times. Pretty much left it at that and called it insomnia.

Are you on any medications? That could explain the dream thing. I was on Citalopram (generic of Celexa(sp?)) for about a month for my NCS and the dreams were like you described. I did some research and pretty much any anti-depressant can cause that. After I stopped taking Citalopram my dreams went back to normal.

I do have a perscription for Lunesta, that DOES make me sleep through the night. However, it makes me feel groggy in the morning so I rarely take it. I will say when I do take them though it is amazing to fall asleep and not wake up until the alarm goes off As you said when I talked to other people they were shocked that I didn't fall asleep and wake up once in the morning. I have pretty much accepted I wake up every hour or so (I usually fall right back asleep) and just consider it "normal" for myself. Not sure what else to do, can take sleeping pills, but prefer the least amount of medication as possible, and don't like how I feel when I wake up.

Sorry, probably wasn't much help (unless the meds thing can explain the dreams), but hope it was nice to know someone experiences the same exact thing. If you ever come across anything to help with this please let me know.

Thanks,

Lance

Is it too late to add "no diagnosis" to the first question? I want to vote but it won't let me leave the first question blank.

I've had sleep problems since adolescence, but I think I also could have had some ANS stuff starting in adolescence, although it didn't get debilitating until early adulthood. I find when my POTS symptoms are worse my sleep problems are worse.

I have stunningly vivid dreams now. I've always had dreams I could remember, but nothing like this. For the past three years or so, it's honestly like going to the movies every single time I fall asleep.

For the past two years, since my dysaut has been it's worse, I seem to have no trouble falling asleep, but then I almost always wake up and can't sleep again from about 2 am to about 5:30 am -- then I can sleep again. I tend to assume this is some kind of weird circadian thing, but I've never been tested for anything. When I started taking vitamin D, I started sleeping better, but then after about a week or so I started having the same problem again.

I never, ever, ever sleep more than 3 or at the very very most 4 hours at a time without waking up. Usually I wake up every 2-3 hours like clockwork. I can actually count on one hand the number of times I've slept an entire 6-hour night without waking up, because the few times it's happened it's been so startling I actually notice it. I don't think I've slept 8 hours straight since I was a child.

To be honest, though, I sort of thought this was somewhat normal until I started living with my boyfriend -- and I noticed he doesn't get up in the night AT ALL. I thought maybe it was a guy thing, to be able to sleep like that. I mentioned it, jokingly, to some of my friends... who all seemed really surprised that I don't sleep through the night. When I started asking around, I realized there are way more people out there who sleep through the night most of the time than there are people like me. It seems like lots of people have the occasional night where they toss and turn, but very very very few have nights like that all the time. I was shocked, and I have talked to my doctor about it, but I've had so many tests in the past year we just sort of decided not to do much about it just yet.....

[Amber]

I sleep horrilby and never feel rested in the morning....mostly feel like I've been run over by a bus.

I wake 10-20 times a night even if its just for a few seconds, sleep very lightly and feel like I dream constantly. No matter if its been 5 minutes since I fell asleep or hours I always wake out of a dream and can remember them vividly most of the time. Honestly its like living another life at night. These dreams are very vivid, active and long and often unpleasant or even horrifying. I also experience sleep paralysis, and hallucintaions when falling asleep or waking sometimes. I have had epsiodes that seem like cataplexy but I think they might be some kind of drop attack or partial faint instead. I had 5 the day of my TTT so I think it must be related to POTS. I just lose control and collapse to the ground. I can't even get my arms out to stop myself. OUCH! I am still concious though.

I had a sleep study that in my opinion was poorly interpreted. They determined that I didn't have narcolepsy since I couldn't sleep on the MSLT even though I was so tired I was physically ill. Also, I didn't have any deep sleep (stage 3 or 4) but the doc never mentioned it. I only noticed it later on the report.

I also had an excessive amount of 'spindles' whatever that means but the report blames it on the use of benzodiasipenes (sp?) even though I'm not on any or ever have been. Don't think they believed me and I'm not even sure what it would point to.

I've tried some sleep meds (low dose antidepressants) in the past but they only amplify the hallucinations and make me stupid all night so I sleep worse.

I have CFS and Fibromyalgia in addition to the POTS so who knows where my sleep problems come from exactly.