Nystagmus for 2 years

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i had BPPV about 4 years ago. Since then my balance has always felt off. i had a child and since i have been breastfeeding, i have ear pain, intermittent blurred vision and nystagmus. i have done the eply manuever and nothing resolves. i have been to a PCP, opthamologist, neuro opthomologist, neurologist, ent and now im on a year long waitlist for a neuro ent. i did have a mri and its normal. my labs are all normal. But i feel so far from normal. Has anyone been through this? Maybe a permanently damaged ear nerve?

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  • Posted

    i had horrible vestibular neuritis that lasted months and returned exactly a year later results in loss of hearing in both ears now using hearing aids, it gets better with vestibular therapy you may need that. it helped me along with taking meclizine on the tough days. wish you the best hope this helps

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  • Posted

    simple bppv doesn't last years. probably something else. i had the same problem. docs who didn't know what i had wrote it off as bppv. i actually have menieres. after over 10 years i was sent to a neurotologist. he diagnosed me properly. told me bppv doesnt last for long periods of time even if not treated. why epely and rehab didnt work.

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    • Posted

      it is brought on by head movements. does menieres come on in general or is it provoked by head movements as well? and my right ear has a mild constant pain. could the hormones from breastfeeding have an effect? coffee seems to not be great for it either.

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    • Posted

      menieres episodes can be triggered by head movement but not always. they can just happen for no reason. caffeine, chocolate,salt must be avoided. they trigger it to. menieres ppl do report pain which can be caused by the fluid build up in the endolymphatic sac which can cause it to rupture. hearing loss is also a symptom but sometimes doesn't occur til later

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  • Posted

    I had vestibular neuritis over 3 years ago. Today I still have issues and I'm convinced I have a permanent damaged nerve . I now have balance issues and also slight tinnitus. Nystagmus is still there slightly and I still feel wobbly when walking . I have just learned to live with it . Hope you find some answers. You are not alone .

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