Menieres is a disorder of the inner ear with the most pronounced symptoms being vertigo and hearing loss. I'd be happy with any mildly related communities also such as for non-visible disabilities, permanent progressive illnesses, hard of hearing, deaf, etc. I haven't found anything through searches yet and I'm not experienced enough to create or moderate my own community. Thanks!

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[–] 1 point 1 year ago (1 child)

I made !chronicillness@lemmy.world which is decently active, but a bit more general.

I’m functionally deaf due to a chronic illness, so I can relate a bit, sorry to hear you have Menieres.

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  • [–] 3 points 1 year ago (6 children)

    If you find anything, lemme know. Ménière's disease sucks, and my left ear is pressurized currently.

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  • [–] [S] 1 point 1 year ago (5 children)

    It most certainly does suck. It's be great to have a place where we can vent, talk about what triggers attacks and what helps prevent/soothe attacks. There was a sizeable community on Reddit, and I miss that resource.

    If you don't mind me asking, how long have you had symptoms/been diagnosed? It's been an eight year struggle for me, but only recently diagnosed after moving states and seeing a new ENT.

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  • [–] 1 point 1 year ago (4 children)

    it's been roughly 7 years on the diagnosis, maybe 8 or 9 for the symptoms. I had a pretty good ENT.
    I didn't know there was a subreddit for it, that may have helped me lol

    I've been mostly managing with magnesium and hydration, but for some reason this last couple of weeks, it's really kicked in hard

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  • [–] [S] 1 point 1 year ago (3 children)

    Hydration is super underrated!

    Sorry to hear you're having it tough lately. I have been too, and that's why I was trying to find the right group here to chat it out lol. I'm honestly surprised there's no community that's remotely relatable for what we're going through.

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  • [–] 1 point 2 months ago (1 child)

    Circling back on this one. Did you ever find anything?
    For what it's worth, my ENT got me on a Sumitriptam/prednisone combo that is an on-demand med. When the vertigo starts, I take both, and helps knock the absolute worst off the experience.

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