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Paralyzed - How common is it?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by lnester7, Mar 5, 2014.

?

I get paralyzed Like state

  1. Yes

    30.0%
  2. No

    70.0%
  1. lnester7

    lnester7 Seven

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    So I was talking to a member and apparently not everybody get to the point of being paralyzed so I am wondering how common is it.

    I start to feel tired and numb in the brain, the first thing I notice is that I don't' want to talk because takes too much effort. First thing I do is to go to bathroom (lesson learned) and then I try to make it to the bed.
    I cannot move I feel so tired, I cannot talk or do anything, I am conscious if somebody talks but I cannot acknowledge, then I usually fall sleep. I wake up extremely thirsty sometimes I can move sometimes I cannot. But mostly I drink pedylaite (electrolyte I keep next to my bed) and slowly stand. This lasts from 2 to 3 hours. On some days I go all the way through the night 14 to 16 hours.

    Does anybody else experience paralysis?
  2. lnester7

    lnester7 Seven

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  3. anciendaze

    anciendaze Senior Member

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    Does this often happen after you eat?
  4. lnester7

    lnester7 Seven

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    Usually after a busy day or when I push my limits. @anciendaze
  5. anciendaze

    anciendaze Senior Member

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    Your reference to electrolytes makes me think of hypokalemic periodic paralysis, which some people I know find more of a problem after a meal. The answer you just gave me sounds more like the usual (for ME/CFS) PEM, which often has delayed onset after exertion. There are degrees of the condition, so I can't draw a sharp line. This could be a subset of CFS, or an entirely different condition which has been misdiagnosed. Textbooks say it is rare.
  6. lnester7

    lnester7 Seven

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    I kind of figure it was potassium discussed it with doctor but my levels are always in the high end (never low), He said it was impossible to know unless I go get tested during an episode (LIKE I CAN MOVE). So that was that. But that is why I keep the electrolyte because I notice the episodes go away if I keep on it regularly. But sometimes I think is something else because they happen no matter what I take or do.
  7. xchocoholic

    xchocoholic Senior Member

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    This sounds something like a type of seizure I get from time to time. I haven't had one of these in a long time tho. A year maybe?

    I can move but my brain and body feels horrible so I try not to. I slur my words and don't feel like I can see properly. Laying down on the floor or bed work. Chairs aren't stable enough.

    My brain freezes up and I have to wait it out. The last couple of times this has happened klonopin seemed to help.

    I "think" it's related to low blood sugar because I feel better if I eat something to bring it up. It still has to run it's course tho.

    Maybe this is happening less becausr I take Klonopin nightly now and don't hesitate to eat something sweet to get my blood glucose up.

    Maybe? X
    lnester7 likes this.
  8. alex3619

    alex3619 Senior Member

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    I haven't had this issue more than once, not really, so I have not answered the survey. I had sleep paralysis once, and once only, and it wasn't really scary because I was in an altered state or something.

    I do get loss of muscle control, and loss of sensation sometimes though, in my hands particularly. That's a loss of sensory input, so I have no idea what to do with my hand, or what its doing unless I am looking at it. This is still very uncommon for me though.

    I am not sure what you are describing, @lnester7 , can really be described as paralysis. On some occasions I get an uncontrollable need to sleep, for example, which only resolves quickly if I go lie down, but it can be so bad I cannot get out of my chair to go lie down so have to wait till I feel a little better. I think this might be a periodic OI thing though, exacerbated when I have not had enough sleep (which is a lot of the time).

    A crash in energy might produce the same symptoms, regardless of the cause, and not be paralysis.
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    When I had a sleep study, the tech told me that I had a short period of sleep paralysis which he said was common in REM sleep. I wasn't conscious of it.

    Yes, @lnester7 , please tell us more.

    Sushi
    lnester7 likes this.
  10. merylg

    merylg Senior Member

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  11. Ambrosia_angel

    Ambrosia_angel Senior Member

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    This was my first thought before I even read the electrolyte part.

    @inester7 I came across a good video about this. It showed a man going through an episode. I can put the link up if you want to see if it's similar to what you experience. I think he's a physician and goes through the stages very well while it is happening.

    Maybe you could buy some pure potassium and when it happens again you could see if you react better to that then electrolytes?


    Edit - here's the video anyway http://m.youtube.com/#/watch?v=tbP9VhaREO0 you may have seen in before.
    lnester7 likes this.
  12. justy

    justy Senior Member

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  13. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Valentijn, lnester7 and justy like this.
  14. anciendaze

    anciendaze Senior Member

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    Despite Inester7's reply about meals my expert on HKPP suspects that a high-carb diet may be exacerbating the problem. Try reducing carbohydrate intake, and watch out for the hidden carbs in that Pedialyte. (Smaller, frequent meals are also better. Big carb doses kick something into overdrive.) He says your description does not fit the textbook HKPP, but does show up on patient forums of people actually diagnosed with PP. It seems to be a channelopathy which medicine overlooks unless it shows up in doctor's offices. This is a problem because patients can't even move, let alone drive, during an attack, and do not have low potassium evident when they can show up. It can take 40 years to get a correct diagnosis, and this is not a number I pulled out of the air.

    There is also a hyperkalemic periodic paralysis, and low-dose insulin and sugar are used to treat that. Some careful experimentation seems in order. Don't simply go by immediate effects, because that "overdrive" mentioned above can produce the opposite effect over longer times. Patients, and even doctors, following immediate effects can be trapped in a cycle that perpetuates problems.

    On a less alarming note, paralysis during REM sleep is normal, and most people have several episodes every night. People who do not are likely to have very different problems. In particular without REM paralysis they may strike or kick someone sharing the bed during a dream. Most dreams are not remembered at all. If they don't even experience REM sleep at night they may well hallucinate during the day.
    Last edited: Mar 6, 2014
    merylg likes this.
  15. anciendaze

    anciendaze Senior Member

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    @Inester7, do you experience GERD?
  16. Mya Symons

    Mya Symons Mya Symons

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    I don't get total body paralysis, but I have had problems with limbs. I've woken up and have not been able to move my arm. It feels numb and just hangs there. I am unable to move it. Also, sometimes my leg will give out and I fall. When I try to get up I fall again. It's like my leg is not there. It usually does not last more than a few minutes.
    Valentijn, merylg and lnester7 like this.
  17. lnester7

    lnester7 Seven

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    I used to, not Anymore.

    I do not eat carbs too much lately, I am following a ketogenic diet and think I will stick to it.

    I am just so AMAZED AND CONFUSED I thought this was ME symptom. Will try potassium supplement. Will keep you all posted. I will also see how much I can document or somebody record me when it happens so I can analyze it better afterwords.
    merylg likes this.
  18. lnester7

    lnester7 Seven

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    Thank you so much for the video. A lot resonated but at the same time, some didn't example If I am gone I cannot move, not strength to even talk, I wouldn't even try to move!!. Also he felt his in his muscles and mine is more in the brain and general weakness. Is like my brain goes numb.

    I will ask my husband to touch me next time and see if I have feeling on limbs.

    By the way I go to bathroom not because I need to go, I do it so when I am out I will not need to, because if I am alone and unable to move and need to pee..... :oops:
    merylg likes this.
  19. PennyIA

    PennyIA Senior Member

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    I had sleep paralysis once - a truly terifying experience because at the time I had just left my abusive husband with an infant whom he had threatened to kill and I woke up to hearing footsteps that approached my bed, I could hear someone breathing... but I couldn't open my eyes, let alone move or scream.

    But I have had episodes where I HAVE to go lay down right now due to PEM becoming so severe that attempting to stay upright will result in a fall due to severe weakness. I don't want to talk to anyone or be around anyone. I can sit up in the bed during these episodes, but do better at a slight incline versus being propped up or laying flat. I have difficulty following the conversation or being able to interact with any clarity. The few times I tried to resist going to lay down, I've ended up getting severe dizziness that lasts for days or months and makes me incapable of walking without assistance - so I listen to my body now. Time seems to be the only thing that helps drag me out of that state. I wouldn't call it paralysis, more extreme muscle weakness with the brain fog and it's always tied to a previous episode of my pushing a limit I probably shouldn't have.
    merylg and lnester7 like this.
  20. Ambrosia_angel

    Ambrosia_angel Senior Member

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    This makes it seem like it's probably not thats. It must be very scary! Especially that your awake
    merylg likes this.

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