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Smoores

698d

Since my POTS diagnosis 2 years ago, I’ve had this one issue that none of my drs or specialist have been able to figure out…When I sleep at night I get what’s called “Hypnic jerk syndrome.” It’s basically where before I enter full sleep, my body wakes me up with a sudden jerk and my arms or legs will feel like sharp glass is stabbing them. I have to sleep in a recliner when I get these because I cannot lie down or the jerks will happen continuously. They also cause my chest to hurt and my heart rate to jump really high. One doctor suspected that I’m having “pots episodes” in my sleep however they haven’t been able to prove that. I do know that I would have them frequently when in the hospital seeking treatment for pots and the heart rate monitor would go crazy every time. The nurse would always say “oh it’s just the machine acting up for technical reasons” but I knew that was not the case. I can never predict the jolts but if I have one, I’ll have them for weeks straight sometimes. Then they will go away and I might not have one for months or I might have them off an on for up to 3 months at a time…It’s exhausting and really taking a toll on my body. Does anyone else experience these?

Top reply
    • ShaeJack21

      681d

      @Smoores i have hypoglycemia issues that seem odd. I have random attacks that seem to make little sense . For example one day I got super hungry and I had already eaten so I ate rice, stake, butter toast and drank orange juice then 30 minutes later my sugar drops and I try sipping on more juice and I was so light headed and shaky and my hr was super high so I called 911 they got there 20 minutes later and my sugar was 72 and they said it was most likely alot Lower before they got there and that it didn't make any sense the way it was acting so they advised me to go to the hospital. My endocrinologist still hasn't figured it out.

    • Livs26

      693d

      My POTS doc told me about hypoglycemia during the night. For me its more waking up with palpitations, drenched in sweat with crazy chest pain. I dont know if this is related. I make sure to eat a high protein snack one hour before bed and have never slept better. Could be easy to try and see if it helps. A glass of milk or protein bar would do the trick.

      • Smoores

        690d

        @Livs26 I eat before bed typically. I’ll eat jerky or soup or eggs etc. it’s just something I’ve always done but it doesn’t seem to have any impact on it. I’ll look into hypoglycemia though. Always appreciate suggestions

        • ShaeJack21

          681d

          @Smoores i have hypoglycemia issues that seem odd. I have random attacks that seem to make little sense . For example one day I got super hungry and I had already eaten so I ate rice, stake, butter toast and drank orange juice then 30 minutes later my sugar drops and I try sipping on more juice and I was so light headed and shaky and my hr was super high so I called 911 they got there 20 minutes later and my sugar was 72 and they said it was most likely alot Lower before they got there and that it didn't make any sense the way it was acting so they advised me to go to the hospital. My endocrinologist still hasn't figured it out.

      • ShaeJack21

        693d

        @Livs26 yes that is also a possibility.

    • ShaeJack21

      696d

      Also some people have a type of seizures that only really happen durring sleep. I thought this may be a possibility for me cute one time I was coming out of an attack and my head neck and arm were jerking everywhere involuntarily for a few

      • Smoores

        695d

        @ShaeJack21 oh that’s crazy! I don’t think I’ve had my arms or neck jerk after I’m awake, but I have been researching those sleep seizures. Another characteristic of those sleep seizures are clumsiness during the day which is something my drs evaluated me for when they were considering MS. I don’t have MS but I have instances where things will fall out of my hands for no reason and where I won’t be able to grip anything

        • ShaeJack21

          694d

          @Smoores i have thos same issues but we are looking into Myasthenia Gravis as a possibility since my migraine blood panel came back negative and I have stroke like symptoms off and on randomly.

    • ShaeJack21

      696d

      Sounds kind of like restless leg syndrome and maybe sleep paralysis. I have the same issues sometimes. When mine happen though I usually am aware and like awake but I can't move or open my eyes or talk...I usually and hyperventilating and jerk when I come out of it and I'm exhausted when I come out of it for hours and sometimes the rest of the next day...still not sure why but my neuro is doing a sleep study on me soon

      • Smoores

        695d

        @ShaeJack21 I get sleep paralysis sometimes but it’s rare. This one isn’t like that though because I’m not aware. I wake up and it’s like a sudden jolt and I’m sitting up fully and trembling and then pain throughout my body. Sleep paralysis freezes you in sleep and you’re unable to move. And restless leg syndrome causes your legs to involuntarily or voluntarily shake or twitch (my husband has that). This is more of an electric shock feeling that wakes me up and makes me shaky

    • poopy69

      696d

      this happens to me also, i’m not quite sure why but i do know i do NOT enjoy it

    • Lew_Bear

      697d

      Sounds a little similar to what happens to me.. my doctors think it’s restless legs syndrome, but I’ve been waiting for months for my sleep study to confirm it. Have you seen a sleep specialist?

      • Smoores

        697d

        @Lew_Bear no, I’ve asked 3 drs now and they’ve all refused to give me a referral. My husband has restless leg syndrome and I get restless legs sometimes but it’s nothing like this. I get this electric shock feeling through my body, I hear sounds that aren’t there, I have significant pain in my hands and feet and tingling, the next day I’m weak and in pain and completely unstable. It’s pretty intense and when it happens, my body can’t break the cycle of it because fatigue seem to worsen it but it causes significant fatigue so it’s and endless cycle 😭

        • Lew_Bear

          696d

          @Smoores maybe CFS? There’s a documentary about it on Netflix called Unrest

    • randochikn

      698d

      I don’t have what you specifically have, but I do get those weird jerks occasionally when I sleep just not painfully. I hope you are able to figure out better what it is!

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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