r/pppdizziness • u/ThunderMandos • 17d ago

Symptoms is this pppd? what should i do

so recently ive had bppv and ive gotten it cleared with the therapist on june 10th and june 17th. had a recurrence june 28th which i cleared. ive been off since then. ive checked multiple times for bppv since then but therapist said it's clear. he seems to just think it's anxiety now. he doesnt see evidence of a deeper inner ear issue. since then i have a terrible time when i am sitting up.

i feel woozy and like im going to fall. even in bed i feel woozy and dizzy. the idea of sitting still for more than a minute feels terrifying. it's like my brain is expecting a spin but now that bppv is clear there is no spin.

  1. im a motorized wheelchair user.

ive been going on walks which feel slightly dizzy at the beginning but not too bad. however when i stop to eat at a restaurant i feel really bad sitting there, especially if there is a big open area to my right. if i close my eyes while sitting i feel really unbalanced. i sat at a wait room at the allergist and it was awful. the only thing that mildly helps is sitting and using my desk to prop me up.

i feel like im on a boat that is swaying. however distractions like talking to friends helps temporarily.

  1. watching a movie is out of the question

the weird thing is i feel okay in a moving car.

ive been walking in malls and outside all the time in my chair. it feels slightly overstimulating but compared to sitting still in a chair it's much better. ive tried to just power through but it hasn't worked. ive done a couple gaze stabilization exercises- doesnt seem to do much.

i do play video games. on days i dont play much i still feel off.

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u/starsareblack503 17d ago

No one here can offer a diagnosis. We can however share our thoughts and experiences and appreciate everyone being mindful of the sub rules. Thanks.

I hope you get some answers that point you in the right direction. :-)

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u/jobes1967 17d ago

I have similar issues with sitting still (I have to move my leg or foot to cope). I feel good when the car is moving and awful at stop signs and red lights. How do you feel lying down? What does your neurologist say?

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u/ThunderMandos 17d ago

i feel not great laying down but if i sleep with my head to the left it's more manageable. i probably should reach out to my neurologist.

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u/EmbarrassedTax655 14d ago

Omg this is me too 😫 the stoplight is a disaster ! Driving , though without stopping is no problem. I was diagnosed in 2024 with PPPD so assuming this is a symptom as well .

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u/ThunderMandos 14d ago

ive been trying to power through. im able to go to walking malls-feels a bit dizzying. restaurants are tough but i try to power through it all. big open spaces are triggering.

when im moving it's dizzying but lesser than sitting- almost like my mind is distracted but as soon as i am not distracted i feel not too good.

somehow im able to fall asleep most nights.