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pixiestick

711d

i’ve never actually met or talked to anyone who shares this disorder with me, so i’d really like to hear your experiences :) my episodes don’t happen very often, and they’re almost exclusively closed-eye, but episodes make me so so so dizzy. how often do you have episodes? how do they make you feel, physically or emotionally?

Top reply
    • whalesocks

      631d

      Hi! I've had a low variation of this syndrome ever since I was a kid. Objects around me would sometimes appear further away than they really were, and I knew they weren't that far. I've found it happens most if I'm looking at/talking to someone across the room for an extended period of time.

    • whalesocks

      631d

      Hi! I've had a low variation of this syndrome ever since I was a kid. Objects around me would sometimes appear further away than they really were, and I knew they weren't that far. I've found it happens most if I'm looking at/talking to someone across the room for an extended period of time.

    • TurtleQueen

      706d

      My AiWS is actually connected to my epilepsy, so every seziure (6-7 times a day when not on meds) is an episode of AiWS. Mine always start with a circle spilt into four in the top left of my vision flashing red, green, blue and yellow, and then it's different each time. Everything is super blurry and distorted, I'll see things that simply aren't there, and sometimes it'll even give me touch and auditory hallucinations along with the visual. It's super weird, but I've had them for ~17 years, so I guess I'm used to it, I just haven't met anyone else with it.

    • Greenery

      707d

      I go through this to. For me it feels like I'm not in my own body. Kinda like the world is constantly spinning. It causes migraines as well. Most the time I get the sound bit. And everything sounds like it's being blasted through speakers. Other times I feel like I'm miles away from stuff I'm just a few feet from. It's the worst. It used to happen once a month most of the time but now it is more like a yearly thing

    • tara_kina

      710d

      WOW! Yes!! Crazy to hear someone else describe it as well. Sounds like yours is a bit more intense though, and I’m so sorry it keeps you from sleeping.

      • pixiestick

        710d

        @tara_kina i’m not sure, because i don’t get episodes very often!!! and they usually don’t last very long. the worst part is definitely the keeping me awake ☺️

    • tara_kina

      711d

      HI! I recently only found out what this might be called, and still trying to decide if it’s fully what I have, but I no doubt experience episodes when I close my eyes that feel like, I lose sense of reality. By that I mean, I cannot tell how big or small I am, and though it’s always black (no visions/pictures), it’s like I’m imagining different shapes/objects growing bigger and bigger until they overcome me, then it happens again and again. Honestly, it’s really frustrating and the only way to make it stop is opening my eyes. I’d love to hear what you’ve experienced.

      • pixiestick

        711d

        @tara_kina that sounds incredibly close to what i experience!!! it comes with a sense of dizziness and makes my head hurt. i was actually brought to the hospital by my mom when i was a kid and first described it happening 😅 i have to open my eyes too to make it stop, but usually have to turn the light on as well. it’s very disorienting and keeps me from sleeping. i can’t think of a better way to describe what i see than the way you explained it, tbh!! i have a very visual brain so when i try to imagine proportions of things right in my head during these episodes, it won’t work. faces and body parts and objects around whatever i’m imagining change size and i seriously cannot fathom the correct sizes of anything until it either passes or i open my eyes/turn on the light. it really is such an odd phenomenon

☝ 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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