• over 1 year ago

    Involuntary body movements while conscious?

    [Tagged as seizures because it is the closest category]
    Hello everyone, I'm a 19 y/o, Assigned Female (I'm trans but was 'born' female), and I've been experiencing some body weirdness since I was about 12 (possibly before, but I have no idea), but never brought it up to doctors as I never knew how.

    Initially, the only way I knew how to categorise the weirdness is "epileptic" but... I've been looking into seizure types and I don't quite fit the definitions. I am not currently diagnosed with anything more than asthma. When I was born, I was premature and had jaundice. No other complications known. I show symptoms of a dissociative disorder, AD(H)D and/or autism, and chronic fatigue syndrome (CFS/ME). I have undocumented CPTSD and only have panic responses (no OCD or habits gained). I am underweight.

    Here's what weirdness I get:
    - Random 'neck bounces': I'll just start bouncing my neck up and down (like those videos of birds bouncing to dace to music), quite rapidly but only small movements. It rarely disrupts my ability to think and I'm always conscious. Usually only when I'm seated, but does happen when I'm stood up too. Never when I'm laying down
    - Limb bouncing: usually my arms, with the "bounce" originating at my wrists, or my legs with the bounce originating at my knees/thighs/hips. This sensation feels like my brain says to my body "need to stretch legs", but my body bounces instead of just stretching. I'm able to "interrupt" it, but I usually still have the "need" to stretch. Usually happens while sat down, sometimes while laying, rarely while standing.
    - 'Body lockup': my whole entire body just stops. I feel my eyes go vacant. Sometimes my head will drop forwards a little (only by an inch or so) and will sometimes also either tilt to the left, OR my face will drop so I'm facing left. I can still move my eyes, and when my head drops, I will continue looking at the "normal" eyeline, meaning I end up looking annoyed as sometimes my brow furrows slightly. My arms relax. My hands "reset to a default position", sometimes they feel like I have rigid gloves on, making them unable to move until I recover. Sometimes my wrists will curl in, towards my torso. I cannot move much until I forcefully regain control by remaining calm and thinking about moving. It presents like a complex partial seizure but I am completely fully aware. It feels like I'm trapped in my own body. Often afterwards I am tried or grouchy. Sometimes I get fuzzy on what happened about 5-10 minutes after the episode. Rarely, it feels like what happened before the episode was "a day ago", that everything that happened after is "today", and I forget almost everything that I was previously aware of. I think this has only happened when I've been seated. I can sometimes feel it coming on, especially if I'm stood up, but I don't really recognise it until after. When it "comes on" while I'm standing, I can brute-force my way out of having an episode by just maintaining action (eg: thinking about moving, the same strategy I use to break out of it). If I'm walking and its particularly bad, I will come to a stop, but this is actually jarring enough for my brain to "snap out of it".
    - Arms randomly curling up. I hate to be that person, but you know how some people with disorders like cerebral palsy have their arms contorted weirdly, often curled up on their chest? Sometimes I do that. I just bring my arms up and in, and my hands do the sort of hand position you make when giving someone a piece of paper (thumb angled in slightly, fingers curled around it and the base of it...) while touching the backs of my hands together. As with the leg/arm bouncing, it feels like a stretch, and I can "interrupt" it but I still feel like I need to do it. Happens when standing or sitting. Might happen when laying?
    - Slapping/smooshing my hands together. Not sure how to explain this one. It's a bit weird. Imagine laying on your arms until they're numb, then try to clap. Happens when sat down or standing/walking. Don't think this happens when I'm laying down.

    I know that these symptoms might read as autistic/AD(H)D stimming, or dissociative behaviour, but I can tell you this: The sensations inside my body and inside my head are so much different. I'm certain that these aren't caused by the things I already listed.

    My questions are:
    1) Does anyone know what I might be facing?
    2) How do I bring these up to my doctor? Every way I plan it feels... Weird.

    Any help appreciated.