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Original poster

Labyrinthitis

28 replies

Leene83 · 23/03/2025 23:57

Hi ladies
just looking for some hope of recovery. I was diagnosed with labyrinthitis nearly 10 weeks ago. It’s been debilitating to say the least. For weeks on end feeling dizzy off balance nauseated ear fullness tinnitus headaches etc.

Over the past 2-3 weeks I really thought I was turning a corner as it sort of ebbed and flowed and wasn’t all day but I got a cold and now back to being off balance though nowhere near as bad as weeks ago dizzy most of day ear fullness etc.

I just feel pretty crappy again… cold has been gone now for 2-3 days but I still feel
disgusting.

anyway, looking for anyone else’s experiences with labs and the ups and downs of it, catching a cold and regressing, how long did it last for you and did it gradually just get better or did it just disappear one day?

My GP has been great saying it’s a time thing can take 3 months or so but yeah pretty depressing to think it will last that dam long. Not been to ent as no apps available for months - ridiculous !

so please anyone experience this - light at the end of the tunnel ? I’m just starting not to cope anymore

thank u ladies

OP posts:

jasflowers · 23/04/2025 15:26

Leene83 · 23/04/2025 09:30

Oh my gosh. You poor thing I can’t believe you have just had to deal with it. I’m so glad it’s gradually gotten better re the attacks. Were the attacks vertigo episodes ? I understand the part about dealing with ear fullness / deaf which is hard in itself but better than the vertigo / dizziness. I also have neuropathy which I got through medication - super nasty side effect and I hate it but after having this issue I can deal with the neuropathy.

crazy how you had no idea you were rotating - the ears are literally our balance mechanism.

praying the best for you.

Show quote history

Please don't worry about me, i ve not had an attack for years and tbh the tinnitus is something i don't really ever think about... my deafness bothers other people more than me!! lol!

When i did have attacks, it would literally floor me, i'd be on the ground, unable to move, attempting to get up would just mean i'd fall down again, it was terrifying, vertigo on steroids!
I would only get maybe a few minutes warning, so i couldn't drive either, though funnily enough no medic ever suggested i shouldn't, i just chose not too.

From memory, these attacks were regular for about 6 months, then gradually reduced, by 12 months they had stopped and the deafness etc took over.

I hope you get a resolution for your issues.

btw Meiners is thought to be associated with extreme stress/anxiety, such as death, divorce etc.

TuesdaysAreBest · 23/04/2025 16:53

I think Meniere’s always involves loss of hearing, plus vertigo and tinnitus. I’m partially deaf from having it years ago.

YourRubyMaker · 19/05/2025 19:06

jasflowers · 23/04/2025 08:24

Hi One ENT Consultant gave me meds... with awful side effects, another told me my brain would adjust and to get on with my life!

I took that advice! the attacks gradually reduced over the next 6 months, i would only take the meds when i had an attack & i now have tinnitus and pretty much deaf in my left ear but my attitude is "if thats it, i can live with that"

At one point i was convinced i had an ear infection as it always felt that my ear was "full" AB's did nothing.

He diagnosed with observational tests, one involved holding my arms out stretched, hands locked, shut eyes and march on the spot, i rotated right around! i had no idea i was rotating.
Now i can that same test and stay where i am.

Meiners can also go the other way and affect both ears, i was fortunate.

Show quote history

So I went to a private ent today and I did this test and rotated on the spot too !!! I’ve had mine for 10 weeks and now and it’s like I’m stuck on a boat constantly it’s horrible, have been referred for mri but no hearing loss but constant tinnitus in both ears and feel sick , also numbness feeling in face but gp won’t take me seriously hence why I paid to go private , all other tests she did seem fine so I feel like I’ve got more questions than answers again 😞 do you go vrt ? Nobody has told me too but thinking of starting

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