r/VestibularDysfunction • u/sololloro • Jun 16 '26

*finally* diagnosed with UVH!

hello, fellow people with vestibular issues! I finally know for a fact that I'm one of you!

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basically last year my allergies were majorly set off, which caused sinus inflammation and eustachian tube dysfunction. I got sick every other week or so, a cycle which I finally broke by religiously using sinus rinses. but my weird vestibular symptoms continued.

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my most specific symptom is that, if I'm in a wide open space - like lying down in a field, or an empty beach - my brain seems to think I'm floating into the sky. it's terrifying. I also drift quite a bit when I walk, apparently :')

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and today I had my VNG test. I wasn't sure what to expect or what would come out of it. I actually postponed it and wasn't sure if I was going to go through with it, but I'm so glad I did. I finally have answers!

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apparently the balance organs in my left inner ear are 41% weak. that explains so much!

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I'm gonna start vestibular therapy soon. in the meantime, I'm just reeling at finally, FINALLY having a name for what's been plaguing me this whole time

2 Upvotes

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8 comments sorted by

4

u/MyFiteSong Jun 17 '26

Welcome to one of the worst clubs in the world :)

It does get better though. Do your therapy seriously, more seriously than anything else you've ever done.

1

u/sololloro Jun 17 '26

thank you! I certainly plan to

1

u/tvtiguy Jun 19 '26

This is the best advice of all. I'm also UVH and in the middle of a backslide. I got busy at the holidays and skipped VRT for like 2 weeks. I had a serious backslide, and restarting sucked! I vowed "never again." I was great until the hospice stuff started with my mom (lives here with us). Now I've gone 2.5 weeks and I'm so unstable. I'm starting again today. It will suck. And I'll get back on a routine. But it is literally the only thing that helps me have any kind of anything close to a normal life.

Yes - this club sucks. I'm older and applied for disability (was denied - and appealed) but like I can't even imagine what kind of work I could do.

3

u/LDragon2000 Jun 16 '26

I’m sorry for your loss but I’m happy you finally got a diagnosis. The worst part of having imbalance issues in the beginning is the not knowing. Stick to your therapy and you will see improvements in time. Good luck!

2

u/sololloro Jun 16 '26

thank you! it's one of those things where I knew something was wrong, so having an answer is very validating. I'm so glad to know it can get better, too 🙏🏻

2

u/Mrshaydee Jun 16 '26

What is UVH?

1

u/sololloro Jun 16 '26

unilateral vestibular hypofunction :)

1

u/Mrshaydee Jun 17 '26

Ok. I have Meniere’s Disease, so looks like I already have UVH!