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jilliebug

735d

hey does anyone else with POTS get seizures? non epileptic we think and semi-conscious with few memory, not able to speak back, heart pain, elevated BP and major twitching in the face, neck (seizes back), eyes, and one arm/hand. i also have panic disorder though along with other random stuff so im genuinely not sure. these are new around the time my POTS showed up.

Top reply
    • ashi3

      643d

      Wait thats not just me? I thought I was the only one that that happens to... Honestly good to know I'm not alone in it

    • ashi3

      643d

      Wait thats not just me? I thought I was the only one that that happens to... Honestly good to know I'm not alone in it

    • Kashmir01

      707d

      hahahahahahahaha yup, i had 3 in 3 weeks. we think it’s from my antidepressant but my HR always increases before, during, and after. i find it sus. my neurologist barely knows POTS and my POTS doc barely knows about seizures it’s an amazing combination lol but we think it’s also a blood flow issue, which could explain a possibility of maybe having pelvic congestion syndrome

    • honeyscape

      717d

      Before my diagnosis I was actually getting tested for microseizures, but my testing came back negative. After a little more research, I found that a lot of my seizure like symptoms could be linked to pots. I wish I had more info to offer but good luck!

    • Leaf98

      727d

      I feel that I also have that semi conscious un able to move my body issue with my spells aswell! Like I'll remember bits and pieces and I'll jerk or my eyes will roll and flicker slightly! I wish you the best with your search though!!

    • Pugmamma

      728d

      🙌

    • gymdog

      729d

      I call them adrenaline surges and they can look very similar to pain attacks but it is essentially your autonomic system freaking out. I also get dystonia (random twitches) which sound like what you are describing. Clonidine helped immensly

      • jilliebug

        727d

        @gymdog ive taken both that and im currently on xanax but it makes no difference 😔

        • gymdog

          727d

          @jilliebug 😞 I did find the transdermal patch to be a lot more helpful

    • Dorkasaurus

      730d

      I've seen some ppl say it's just body jerking. There is a difference when it's affecting your speech, consciousness/memory/awareness, cognitive functioning, and limiting movement. There are lots of different seizures. If you have a level of consciousness, it's "partial." I have POTS and seizures. I'm still in the diagnostic process for the seizures but am on medications for it. I've only had a few "simple partial" seizures where it was really scary with seizing. Everything else has been "complex partial" seizures where it looks like I'm "spacing out" but I'm stuck in a seizure. It can make you internally panic during one for sure. I have panic disorder, can go catatonic, chronic dissociation, and regular fainting, so it took me a long time to discover the differences between the sensations and symptoms and criteria. It's good to follow new leads because no matter what the result, you'll be learning about yourself. If you find out they're seizures, it can still be very hard to find the cause of seizures. They can be linked to epileptic and so many nonepileptic conditions like diabetes. I've seen dysautonomia can be a cause. Some people will just have a couple seizures in their lifetime for seemingly no reason. For anything concerning me physically, I'll accept psychogenic/psychosomatic causes but only after the other possibilities are ruled out. Depending on the situation, it can be dangerous to jump to that conclusion. Lemme know if you have any questions about it or what my seizures feel like <3

      • jilliebug

        729d

        @Dorkasaurus i have the exact same though process with it! i try to rule everything out before landing on psychiatric issues especially with stuff this scary! fingers crossed it can be figured out and thank you so much for the help man :))

    • Potsiespoon

      732d

      Syncope can cause body jerking and I get that too

      • jilliebug

        730d

        @Potsiespoon oh good to know, thank u! sorry u have that too mate :/

    • Oceans

      732d

      I have it, and mine does have seizures,but actual term for it is jerks, it's like mini seizures

      • jilliebug

        732d

        @Oceans oh damn sorry dude but thank you for telling me the proper term!! now i know what to call them haha

        • Oceans

          732d

          @jilliebug no problem, and you have any other questions about pots, just let me know

    • Elytra

      734d

      It's actually really exciting to me to find out that other people have this too. This is the first time I've heard of anyone else experiencing it

    • Elytra

      734d

      I get this too!! Im always conscious, just unable to speak or move much or at all. I shake and twitch quite a bit and I often have a panic attack along with it. It certainly looks like a seizure when its happening but I never fully lost consciousness.

      • jilliebug

        734d

        @Elytra i’m so sorry dude this stuff sucks! but it is so amazing to find others with the same stuff, answers are so euphoric haha

        • Elytra

          733d

          @jilliebug yeah they truly are, I've been asking about some niche things in other groups and getting responses is SO exciting. Because I live with people who have my same disorders but we don't share all of the little niche problems. So finding others with the exact same thing is euphoric

    • NixFyre

      735d

      I have POTS as well as non-epileptic psychogenic seizures. My seizures are brought on by stress and anxiety and will start out feeling like a panic attack. After that my entire body starts seizing and shaking. Afterwards I'm generally very tired and out of it.

      • jilliebug

        734d

        @NixFyre how did you go about get diagnosed and treated for them? im not sure what test i need to ask for? i relate so much to the tiredness and my face will be puffy after, so odd

        • NixFyre

          725d

          @jilliebug I actually got diagnosed for them because I had so many in one day that I had to go to the emergency room. And from that I ended up going inpatient and that's how I got treated for them I got put on anxiety meds.

    • wise

      735d

      if you can remember what happens during an episode, it's not a seizure, and it's definitely not a seizure related to POTS. if you have an anxiety disorder and the episodes usually come on during a POTS attack, you probably have functional neurological disorder, or FND. it used to be called conversion disorder

      • Dorkasaurus

        730d

        @wise you can be conscious during a seizure

      • jilliebug

        735d

        @wise thats exactly what i thought as well! hopefully ill figure that out sooner rather than later hah 😅 thanks :))

        • wise

          735d

          @jilliebug I hope you get to a neurologist soon!! and that insurance doesn't try to give you the runaround the entire time 😅

☝ 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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