Comma sleep again

Discussion in 'Fibromyalgia Main Forum' started by jmq, Mar 8, 2009.

  1. jmq

    jmq New Member

    I use to have this symptom last year but have managed to get rid of it....but its back. I get a decent nights sleep....ambien sleep...but its been working well enough that if I get out of bed around 10 am , I am good until late in the evening. No naps during the day unless I really over did things.

    This weekend...two days in a row...I literally could not wake up. I managed to say a few words to family members coming in and out of my room...but I was barely able to open my eyes and speak clearly. I would wake up every couple of hours and try to move but had pain everywhere. I could not even move to reach on my night stand for my water and pain medication. I just fell back into a deep paralyzing sleep. Its very scary!!!

    Does any one else have this happen to them? The only change in medications I have is I have weaned off my Cymbalta. I can not imagine that this would cause this symptom...but maybe?
    Please let me know what you think....

  2. 3gs

    3gs New Member

    By ambien sleep do you mean you are taking the sleeping pill Ambien?

    Have heard of people doing strange things while on this med. You need to talk with your doc.
  3. spacee

    spacee Member

    I don't know a thing about it might be that.

    But thought I would share my sleep problems. They are not as drastic as yours and may well be something else.

    First I want to mention "mitochondria disorder". Don't know anything about it but a baseball player for the Tampa Rays has it. I think the mitochondria has something to do with cell energy. You might want to google. There are a couple of products sold here to try to help this. I have tried them but didn't help my problem.

    Also, ATP which every cell uses for energy. Dr. David Bell, CFS researcher says that is a problem with CFS patients and it isn't known how to fix it. Well, that isn't encouraging.

    I have had different sleep issues. When my kids were home, every three week I had to sleep all weekend. This is how I would describe it. "The first day I couldn't get to CVS (closest store to my house) if my life depended on it. The 2nd day, I could get there ONLY if my life depended on it). So, you can see...that was not coma sleep. And I could eat lying down.

    Next. Later after the kids left, I could travel for a 4 day weekend with my sister. She would have almost every minute planned so I relied on enada and a LOT of caffeine. Then when I got home, I would sleep for 36 hours straight BUT wake up at meal times to eat. So, that wasn't coma sleep either.

    Now. For about 1.5 years, I am sleeping, sleeping, sleeping. It isn't a coma but I don't get dressed, I don't leave the house. I can barely make it to doc and dentist appts. I am so tired I cannot even explain what is happening to me. So, my youngest is home at Christmas and I want to ride with his dad to take him to the airport...but I can't stay awake. He happens to have ADD. So, I see his bottle of ritalin and I decided to try 1/2 of a 10 mg pill. Boy, DO I WAKE UP! It is fabulous. It is incredible. I still can't do things I used to do but I am awake! I can run errands. I can TELL the doctor what is happening to me.

    So I make my appt to get my own ritalin. I copy off about CFS where they say that ritalin is used experimentally for CFS (for my file) and the doc is willing to rx it BUT I have tachycardia (fast heart beat), so he says not more than two 5mg a day.

    Ok, if I am around the house and just running errands, I have found that only 2.5mg is ok (I cut in half a 5mg). But if I am going to a wedding, say. I need the whole 5 mg. and if I am going to be there (with driving time) more than 3 hours, I had better have some ritalin with me.

    It is a terrible problem. I am so hoping that you find something that will help you.


  4. Smurfette17

    Smurfette17 New Member

    I take Ambien too (10mg/night) and based on my experience, I don't know that the Ambien is your problem. I also take 25mg of Trazodone.

    What happens with me with Ambien is that once it starts to kick in, I do things in a very out of it manner, and the next day remember it as in a dream. For example, last night after taking Ambien, I barely remember having a weird conversation with my husband before I fell asleep. But Ambien is known to have this amnesiac effect. But for me, it's a very "clean" drug, in that there is no hangover. In fact, the reason I take Trazodone is that the Ambien won't keep me asleep for more than 5-6 hrs.
  5. PatDLT

    PatDLT New Member

    I remember my comma sleeps as far back as my 20s. It is a paralyzing sleep. You go to sleep as usual, but when you want to wake up, you can't move a muscle. You try yelling to see if anyone has heard you, you try everything in your power to move and for a moment you think you are getting up, but you are back in the same position and haven't moved at all. The last episode was a week ago. I had not had it in years, but that afternoon, I tried and could not move. I remember trying to open my eye lids with my fingers, but that was all part of the dream you are trying to wake up. Then you realize you are still in the same position and never moved. This goes on for awhile, then you just wake up.

    I am taking Cymbalta and ambien right now, but all the other times I had the comma, I was not on them, so I don't think it is the drugs.

    The thing I noticed about my commas is that It only happened to me during a nap, not when I went to bed at night. This last time was during a nap.

    Hope this helps.
    Take care
  6. LadyCarol

    LadyCarol Member

    You didn't say how long you were taking Cymbalta and Ambien ?

    The Cymbalta is in a class of medications called selective SNRIs (serotonin and norepinephrine reuptake inhibitors). SNRIs are a class of medications that are thought to relieve symptoms by affecting the levels of serotonin and norepinephrine in the brain and in the spinal cord. By reducing the absorption of serotonin and norepinephrine into cells, SNRIs increase the levels of these two substances. Hence, it's possible your may be experiencing a delayed reaction from coming off Cymbalta (i.e. your body hasn't yet adjusted sufficently to living without the Cymbalta).

    Also long term usage of Ambien may result in a person experiencing excessively weak, fatigue, sleepiness, hence this is also a possibility of what may be happening to you.
  7. " You go to sleep as usual, but when you want to wake up, you can't move a muscle. You try yelling to see if anyone has heard you, you try everything in your power to move and for a moment you think you are getting up, but you are back in the same position and haven't moved at all. The last episode was a week ago. I had not had it in years, but that afternoon, I tried and could not move. I remember trying to open my eye lids with my fingers, but that was all part of the dream you are trying to wake up. Then you realize you are still in the same position and never moved. This goes on for awhile, then you just wake up. "

    THIS sounds a LOT like "cataplexy".. or sleep paralysis, have either of you checked into this, google it online...

    I'm not saying this is *your* problem, or your *entire* problem, but, especially to the poster I quoted above, that sure does sound a lot like the cataplexy/sleep paralysis thing.

    I don't think it would hurt either of ya to look into those sleep disorders...

    Oh, and as far a Cymbalta- that is one anti-D that I have *not* been on, but, my sister has. I've been on PLENTY though, suffice it to say.... and, several of them, had me so zombied out, I was pretty much about 2 steps above being a comatosed vegetable.

    I might sit up for this or that, or try to get out of bed, but, I'd be O U T again, in less than 15-20 minutes. Could NOT sit upright in a recliner for the life of me.

    I could NOT have ran, if my own HAIR was on FIRE. The last one that comes to mind, is Lexapro... I was on a tiny dose, either the starting dose, or one above that, maybe. and I think Remeron was the same...

    Anytime that I *was* up... I would begin sweating, tremoring terribly, then get short of breath, faint-like, and have to sit down- this is just simply trying to stand in front of a mirror to button a shirt, or brush my hair.

    one time, after collapsing, onto a footstool at the foot of our bed (all of 3 feet from the door/mirror), I only remember my husband sitting behind me, holding me under each arm, and my whole body shaking, as if I were in at least the 'moderate' stages of parkinson's disease! (I was all of 25-26 yrs old then!)

    I'm 31 now, and after those last two AD's, my *primary doc* agreed (finally!), that, (DUHH!!!) anti-depressants were NOT going to benefit ME, in any way, shape, OR form. Wish she'd just have taken my word, (and other specialists!) before I ended up on heart medicine, and clonazepam, for 'foot flapping', intention tremors (may be MS, maybe not. certainly came ON, during anti-d trial(s).... and severe myoclonus...

    My sister continues to try anti-depressant, anti-psychotic, anti-convulsant mixtures, for her bi-polar II disorder, & BPD, etc... & has tried trazedone for sleep also... but, I've seen her* in some *TERRIFYING* 'coma' like states... not to mention, some med combo's also caused very very SUDDEN sleep... and there was NO waking her from it. She snored, had apnea, weird breathing/gasping fits, (awake AND asleep), and was NEVER aware of her doings, what she said, didn't say, what time it was, what day it was, etc----

    Which was SCARY, since, she was my caregiver, while my husband was at work- and she took me to all of my appts. We ran off the road, *frequently*, she finally allowed me to have a few (not so kind words) with her psych doctor. her counselors are great- but, the prescribing doctor over her meds, was a fat, clueless, odd,..... well.... anyhow. She's much better, cognitively right now, but, I think she's only taking flexeril, topamax, and one or two other things, (she's still fighting SO hard, to lose 50-60 lbs she'd gained throughout all that medication 'fiddling' that was done on her, UGH!)

    Anyhow, for ME, personally... at least on Lexapro/Remeron particularly (I think lexapro), might as well have been slipping me a prescription 'rhoofy" (however it's spelled. ugh!)

    Anyhow, I'd look into the meds, read every single side effect, consider interactions, and also maybe google sleep disorders...

    I have *near* coma sleep, just as one of the wonderful problems of my CFS/MS/FMS. I don't sleep, but, every few months, I won't be ABLE to get up, for ANYTHING. I will fall back to sleep with a full/painful bladder, even. that's pretty bad.... if u ask me...

    Hate those times. I'm never in very 'good' shape anyhow. but, when I'm literally almost comatosed, I absolutely hate the weeks, even months, I miss(ed) out on.

    Take care,

  8. AuntTammie

    AuntTammie New Member

    Going off of Cymbalta could most definitely be causing your could being on Ambien, although I think that is less likely if it hasn't been causing problems prior to this....I wasn't on Cymbalta for long at all, so going off of it wasn't a problem for me, but with other antidepressants, I felt horrible going off them and had all sorts of symptoms...they used to say that going off them was not a problem, so when I had problems I wasn't sure what was going on....I suspected it had to do with the meds, but it wasn't until more recently that I had that confirmed, as new research and patient reports have confirmed that there can be a lot of issues, even when people wean off, as you said you did
  9. AuntTammie

    AuntTammie New Member

    Mitochondria are the "batteries" of our cells, and they are the part of the body that makes and recycles ATP. In people with CFS, they have shown that the mitochondria are not working rt. Some of us might not recycle the ATP at all and some of us might recycle it very slowly. That is why we have post exertional malaise. Google Sarah Myhill's website for more info. She has actually even come up with a way to test this. Unfortunately, it is so new, it's not available yet for most people. She is in the UK. I bring this up, bc your post was kind of on the rt track, but you said you didn't know much about this. Also, I don't know which products you have tried, but there are several thigns that our bodies need in order to have the ADP cycle work rt. So, if you are supplementing with one or two of these, and still missing others, it won't help, but if you have all the components, it should help a lot.

    Also, as to the ritalin, I am glad that you are finding it helps, but please be very cautious about using it. It is actually usually advised against (contrary to the Mayo website....there is quite a bit that is wrong with their info - actually people have discussed it on here), bc it can tend to wind up causing more of a crash, either when it wears off, or a day or two later when it has allowed someone to think he/she has more energy and to push it too hard and then crash...or even further down the road after pushing too hard for other words, it can perpetuate the push crash cycle, and eventually make things worse....and it can also cause other long term/permanent issues with twitching and other weird things like that, it can cause behavioral problems, and it can be addictive....and tying into the mitochondrial stuff, it can actually damage the mitochondria, causing more long term problems, too.....not saying not to take it, but just to be aware of these possibilities.
  10. ilovepink4

    ilovepink4 Member

    That happens to me every so often. It only is during the day, not a night time thing. Some days I can't stay aawake the whole day. I will try to open my eyes and my eyes feel like they are rolling around in my head!! I will sleep in the same position for long periods of time. This has nothing to do with my 5 mgs of ambien....because it doesn't happen every day. Once every few weeks.

    I think it is just a symptom of my FM
  11. shari1677

    shari1677 New Member

    Thanks JMQ to raising this question. I have had this exact symptom for the better part of 1.5 years, but I thought it was just me. No change in medication.

    I get so tired that I would sleep hard and even try to wake up, but couldn't. I would try to move, even to reposition myself because of a leg cramp or something, and be too weak. I would hear everything around me, but be unable to respond, either by opening my eyes or speaking.

    Not only to have a coma-like sleep, but I am so asleep that my daughter has had to splash cold water on me to wake me up because nothing would work, which is very scary for a 14 YO.

    Like I said before, I haven't had a change in meds, so I don't think this is it, but, if anyone can enlighten me - please do so! It is very scary! I mean, what happens if there is a fire and I can't wake up??

    BTW - I can't tell you how many doctor appts I have had to cancel because I am just too tired to go. I'm surprised no doctor has dropped me from his/her practice yet.

    [This Message was Edited on 03/09/2009]
  12. LadyCarol

    LadyCarol Member

    It is very interesting to hear about so many of you are experiencing similar symptoms. I have also experienced numerous bouts of extreme tiredness & weakness especially after a night of sleep, far worse than I've had for a long time. Trying to get out of bed was very difficult such was the weakness & tiredness throughout my entire body, it could take 2+ hours of trying to get out of bed and then another 15 minutes to get from the bed to the bathroom and then the rest of the day I'd slowly improve before going to bed and then the next day I'd go through the exact same cycle again. This cycle would reoccur day after day apart from the odd day when I'd feel relatively ok, no obviously pattern.

    I was wondering if any of you have noticed if this occurs more often during winter months or does it happen at any time of the year in particular ?

    Are any of you not taking a sleep medication but still encounter the same problems ?

    Has anyones doctor been able to suggest what may be causing the problems ?
  13. As I said in my post, though, this is a physical state that I am in, much of the time. I sleep very very poorly, and very little, but, every few weeks to months, I will absolutely, hit-the-wall CRASH... and, rather than it being like I am 'trying to wake up'

    It feels truly more like I have been DEAD for years, and that I am literally trying to come back from the dead, as if my organs, each are literally trying to 'start back UP'...

    My mother, (she has FM, diabetes, OA/RA, diverticulosis, etc), agreed, and said a loud "YES, that is a good description for it... I have that too, and you hit it right on the head, with that" when I told her that..

    We've gone through 'phases'... where, when we sat up, we could feel the heaviness of organs moving around, like they were all heavy, and all were 'sliding back into place'... and, it just felt like you were trying to 'come back to LIFE'

    NOT 'wake up, from a deep sleep".

    It's soo soo much *heavier* than that... as you others must know.

    And, as far as a true *cataplexy* episode, I have had that one time. (I woke up, tried to scream for hubby- laying right beside me, and could not make a sound... tried to reach over for him- could NOT move a SINGLE MUSCLE, after several tries, and fear just immediately striking me, I "hoisted" my entire upper body over onto his side of the bed, still, failing to tap him, or wake him...)

    I was having a truly truly HORRIFYING nightmare, when I woke from it, this is when I'd had this episode, and Sylvia Browne, explained exactly what that was, and, I was calm(er) about it after...

    I've had other issues, in all sorts of 'ranges', but, that was the only time that *I* have EVER experienced true *paralysis*, while sleep/waking, which is why i do mention this for two of the posters to check into, but, especially (sorry the name???) mentioned not being able to move NOR *speak*..

    Anyhow, I'm not on medication, my episodes, yes, at times are worse, or more frequent/longer in duration in winter- but- that's also the huge holiday season as well (???),

    No, my primary had no answers for me way back yrs ago, when that was mentioned... but more pills, and I declined... I've never asked my neuro of 7+ years..

    He just deals with muscle weakness/spasms/spasticity, falls, brain lesions, and my trigeminal neuralgia, really... but, also does not like everytime I've lost weight when he sees me, but, even the weight, he tells me to see somebody (else) about it, ASAP...

  14. LadyCarol

    LadyCarol Member

    I know exactly what you mean regarding the awaking horror mentioned in the above reply. It occurs when the person is just coming out of sleep. The person is only partly aware of things around them but are physically paralyzed and unable to respond to the state of semi-sleep & dream. They are indeed locked into a state of partial sleep whereby they are actually living a dream state through a combination of both partial consciousness and partial unconsciousness. I've been through this and know what it's like, it's literally a living nightmare until something/someone wakes the person up, which in my case was my dog jumping on me to wake me up. Then it's like the whole body has to start up from scratch until movement is restored into each limb, organ, etc. a bit like a computer reboot.

    The condition occurs as a result of shallow quality sleep and eventually when the person does become unconsciousness they enter into a mixed zonal state as described above. The mind then plays out something weird which can and often does result in physical feelings being transmitted into a semi-reality dream state that becomes a living nightmare.

    I've only exerienced this twice and both times was during very poor sleep deprevation cycles and no medications were involved. Also on both ocassions one of my dogs used its canine senses and detected all was not well and wake me up.
  15. of the sleep paralysis/cataplexy I experienced maybe 3-4 years ago,, was absolutely horrifying... Particularly due to the terrifying 'subject' of the dream I had had..

    I was literally in a 'face off', standing face to face with the 'devil' (notttttt a pleasant dream at all!!!) and just kept (in my dream) repeating to myself, "I will not be afraid, cuz Jesus saves" over and over... so, yes, obviously I was creeped out, upon waking..... and *then* to not be able to just move closer to hubby, to sort of calm my nerves.... not be able to move a single MUSCLE, not even a *toe*... and THENNNN have NO voice- it was horrible.

    I just thank goodness that passed i'm SURE, quicker than I even realized... it felt like forever, I bet it was under 60 seconds.

    I wonder if the sleep issues we're mentioning above, might be similar- even though it feels deep, coma like sleep- if we might feel like night of the living dead, yet again- due to poor quality of sleep... which we know we have- regularly, but, during these 'coma' sleeps... I wonder if something totally different kicks on, or off..... DUE to the months/years, of poor sleep... and if we don't enter some other phase altogether of poor (miserable) sleep, for a while...??

    "Curiouser, and curiouser," as I've heard said before... as a different, purposely grammatically incorrect way of saying 'interesting'..

    (my mom used to say it once in a while, as a way of being silly... it's from t.v. or somewhere...)

    It is 'interesting' though... not in a 'good' way... but, interesting. ODD, a better word.

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