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Bakon

402d

My doctor thinks I have narcolepsy with cataplexy and I think she is right about the narcolepsy but looking up they symptoms of cataplexy it dosn't feel like my experience. What I experience that my doctor said is probably cataplexy feels like an electric shock inside my body like when I move sometimes it's just in my arm and sometimes it's my entire body but it is very uncomfortable and hard to stay balanced while it's happening. I guess that does kinda track with the loss of muscle tone but idk. I was wondering if anyone has experience with this.

Top reply
    • Bridget53

      203d

      Interesting to here. My cataplexy happens when I laugh to its as if I'm drunk not that know what the feels like but that's kind of how it looks. My knees give out from underneath and my head will bob not being able to hold it up.

    • Bridget53

      203d

      Interesting to here. My cataplexy happens when I laugh to its as if I'm drunk not that know what the feels like but that's kind of how it looks. My knees give out from underneath and my head will bob not being able to hold it up.

    • LukeAM

      315d

      They say I have narcolepsy with cataplexy. I don't really think I do. I don't know what's happening when I go to sleep.

    • KitKat1450

      374d

      That sounds similar to me. Sometimes it’s like a shock thru my foot or from my head and feels like it disregulates my body and balance. When my anxiety has been high, I’ll start shaking (tremor) and feel frozen randomly- muscles trying to work but wont. Mine seems to get worse when I’m more anxious & tired (over long period) and when my back problems are worse. Legs buckles more often. Get more muscle twitches. Usually happens the worse when I go out in public and someone talks to me. I didn’t really think I had cataplexy from looking up symptoms. My doctor diagnosed me with cataplexy w/ narcolepsy. I also have nerve issues from my back so quite honestly sometimes I’m not really sure how to distinguish which it is. But when I told my sleep doc about the issues I do have (I thought were just nerve and musculoskeletal issues) he was like uhhh yeah either way you definitely have cataplexy. My doc said it doesn’t have to be complete muscle tone loss every time. Still not fully clear on which is which but just try to remember no one’s experience is the same. Now I just try and notice weird things that could be cataplexy even if it’s not “textbook” to ask about later so I can get a better idea or track and manage symptoms. Quite honestly the doctors I’ve talked to seem like they’ve only read about it in a textbook similar to fibromyalgia when they use it as a catch all for certain abnormal symptoms because they don’t know what it’s from. It’s be cool to have more clarity but for me it seems to be that when I’m not doing well all my issues get worse so I just try and focus on what I can control and what seems to help me. I think I’ve just accepted that it’s going to be unclear.

    • faerywyrm

      402d

      I don't have narcolepsy, but my cataplexy manifests in lack of muscle tone, intermittent vertigo, shooting pains, and frequent falls. My Dr says I have more important issues that can actually be dealt with, so I am untreated.

      • sapphic

        402d

        @faerywyrm I didn’t realize cataplexy could take place as vertigo! Ty for the info!

      • Bakon

        402d

        @faerywyrm that does sound familiar. Thanks. I have a lot of issues with this

        • faerywyrm

          402d

          @Bakon feel free to contact me anytime. I'm usually available

☝ 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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One user described their cataplexy experience as feeling weakness in the backs of their legs when they laugh too hard, and another mentioned that their muscles feel like jello during a startle reflex. Cataplexy can present differently for different people and is often tied to emotions. However, it's important to consult with your doctor for a proper evaluation of your symptoms, as individual experiences may vary.

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