Labyrinthitis

[Leene83]

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

Are you going the exercises. You need to put the crystals in your ear back where they belong. If you get sick feeling, the doctor can give you something for that I am susceptable if I get a cold. As soon as I feel it coming on then I do the exercises....abit like a forward roll. You tube is a good start. You may have to live with it.

@Reggiebo that’s for BPPV, not labrynthitis. Different things. I’ve had both, both are shit, my labyrinthitis only lasted a couple of weeks then faded quite quickly. I hope yous does too OP.

My husband was diagnosed with this about 2 years ago. It probably took 3-4 months to really clear up.

But the next time he caught a cold virus it came back again. He was told it can keep coming back when you get a cold.
Something he was advised to do was to try and strengthen the “vestibulo ocular reflex” - he was given a leaflet with some exercises, but you can find them on Google. These seemed to help so now even when he gets a cold, although the ear fullness still seems to be a problem, the dizzy/vertigo attacks seem to have resolved.

Its a horrible problem and can be so deliberating so I am sorry your going through this. Hope it improves soon.

I’ve never had bppv but if it’s anything like this it sounds awful. At least when it does start to clear it will be quick. I can’t wait for that day. Thanks for your comment!

Thank you - I will Def google the vestibulo reflex thing and do it. It’s got to help. GP said to get back to normal life as quick as possible which I’ve been doing although feeling super sick.
3-4 months is a long time … your poor husband. Yeah it’s a pretty awful virus thing I can’t wait for it to disappear. I keep telling myself I’m on the tail end so it’s got to go away soon.

Thank you - I will Def google the vestibulo reflex thing and do it. It’s got to help. GP said to get back to normal life as quick as possible which I’ve been doing although feeling super sick.
3-4 months is a long time … your poor husband. Yeah it’s a pretty awful virus thing I can’t wait for it to disappear. I keep telling myself I’m on the tail end so it’s got to go away soon.

Dizziness I can cope with. Normal for me. The vertigo (spinning room nausea) is grim.

I’m sorry you’ve got it op. I had it for weeks and it’s bloody awful. Nothing the dr did helped me and in the end out of pure desperation, I went and had acupuncture. My employer was getting understandably pissed off with me being off for so long and I was sick of feeling..sick and so bloody dizzy. It went away after 2 sessions of acupuncture. Was it the accupuncture or was it already on its way out? I don’t know, but I’ve never had it again (more than 20 years now).

I had labrynthitis and a perforated eardrum about five years or so ago and it was hell. I literally had to settle on the settee with everything I needed close by because just the slightest movement would cause the room to spin so fast. I even needed help walking around the house/going to the bathroom etc. I couldn't take my child to school, or go out by myself. In total, I was signed off work for about five months.
It gradually began to subside but all these years later and I still find it hard to turn my head to look at something while I'm walking. I've also lost some hearing in my right ear and have constant tinnitus.
I think maybe mine was quite an extreme case but I certainly feel your pain because it was so debilitating.

I will second vestibular ocular exercises aka vestibular rehab aka vestibular physiotherapy. I was ill for almost a year and had to give up working and in my situation it was the only thing that worked. I felt so bad I spent more and more time in bed which was the worst things for me, as walking outside it really helpful. This works for a few conditions, the nhs has balance clinics that can help with this or can be arranged privately without the massive waiting lists. The Menieres society website has details of the exercises on it.
also look up ‘the home epley manoeuvre’ you can find it on YouTube, this if for if your ear crystals have caused the issues. Much easier fix than vestibular rehab (but sadly did not work for me as a different cause of my dizziness).
I hope you feel better soon!

I had this - it was horrible. My doctor gave me a tablet which went between my gum and my cheek which stopped it immediately. I can't remember the name of it but I know it's still prescribed.

Does it make a difference if you hear noises? Maybe see if sounds are triggering it. Could you wear noise cancellation headphones to test this. Disclaimer I am not a doctor.

It could be Menieres Disease rather than Labyrinthitis, especially as you mention ear fullness.

For the times it really flares up, the doc can prescribe anti nausea/dizziness meds - pro something. Advised to only be taken when really needed but they are very good.

How is it how ? I’ve had it badly for a week and I feel I can’t cope anymore , I can’t take the sickness tablets as they make me feel worse and I’ve got terrible heartburn and acid reflux so just started tablets for that too , I’m home alone most days with a toddler and a child who’s just had major surgery and I can’t take much more tbh

Have u had any antibiotics? They haven’t given me anything but my left ear does burn a lot of the day so wondering if I need them , I just feel awful and feel like the dizziness is getting worse not better

Hello. I’m still going through this. I did believe I was starting to recover a few weeks ago but caught a cold and regressed. I went back to docs as after two weeks still feeling like crap and he gave me antibiotics in case it was bacterial and also 15 days of steroids high dose with a taper down to try to get rid of the inflammation. Said I should have had it weeks ago. He believes I’m at the tail end of this thing and it should go away or be close to by the end of the steroid course. I’m on day 6 of steroids and feeling better but still a bit sick with on and off nausea and a little bit dizzy at times.

im so sorry your going through this. It’s the hardest thing I’ve been through in my life it’s so horrible to be dizzy and sick every day. Hopefully yours will go away soon. Lots of ppl recover 1-2 months from what I’ve read. Try to remember too it’s self limiting meaning it won’t last forever and it does go away. Hold on to that hope.

ive got two small kids too and have had to get on with it but it’s so hard and I’ve had to rest when needed too. My mum has come down every few weeks to help. But it’s been so hard days where I’m crying days where I am positive. It’s up and down - I understand. do u have anyone who can come help for a week sometimes just company helps.

How are you doing now ? I’m 3 weeks in and it’s gone back to being really bad again , got given antibiotics and they did seem to help then got told don’t take them anymore cos imtbe swabs come back negative and boom it’s back as bad as ever just constantly dizzy !! I’m doing everything they say and it’s just not working , having to hold out now until Tuesday to probably get fobbed off again

Hi
I am not sure how I’m going atm as I’ve just come off steroid course a few days ago and I am
having bad withdrawal symptoms (confirmed with doc). I should hopefully be feeling better in a week from that. Steroid withdrawal symptoms can be similar to labs … I can say though I’m def not as dizzy it’s more of a lightheadedness that ebbs and flows now a few times a day but nothing major at all - not like how I was prior to steroids. I am more dealing with extreme nausea but that’s def a steroid thing as I never had nausea like this prior to the steroids.

it’s very normal for lab symptoms to increase or feel like it’s getting better than gets worse. It’s a rollercoaster with lots of ups and downs. Do u have any medication to help you when it’s bad ? I used stemetil when mine got bad.

from what I’ve been told from others who had it it seems to gradually get better when your nearing the end like over the span of a week is two then just spontaneously goes.

befor I caught a cold and regressed it was starting to happen to me. It ebbed and flowed throughout the day at first then after a few days of that I had two days where I felt nearly completely normal. I would have recovered I reckon if I didn’t catch that awful cold that inflamed that nerve again.

I’ve got another ear infection now so both 😭 feel horrible worse than ever , been given clarithromycin but it’s giving me horrible insomnia and I’m petrified of taking sleeping medication they’ve given me , it really is the worst isn’t it ! So not sleeping on top of it is just awful lay in bed spinning all night , il be so glad when it’s not constant

Are you sure you haven't Meniere's disease?

I got diagnosed with this many years ago, initially thought to be Lab but i kept getting attacks.

Oh man im Really sorry. That sucks. I understand how you feel it really is the worst. Def take the sleeping pills if u are not sleeping. I have not slept properly since the steroids as they also keep you up. Praying for you that this nightmare ends soon.

Hello. They are pretty sure it’s not. I’ve had the one episode of vertigo 13 weeks ago at the onset and since then it’s been a rocky boat dizzy feeling that’s constant except when I was starting to recover a few weeks back it was very intermittent and was going away. I then caught a cold that irritated the nerves again and set me back a few weeks so that’s when they gave me steroids to help. The extreme nausea is new and only started when I came off steroids a few days ago. I had a sick feeling before with the labs but not like this at all very different. How did they diagnose you? Sorry you have to deal with it it would not be pleasant - hopefully they have meds to help ?

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.

This is exactly like me a big attack then stuck on a boat ever since ! It really is horrible , how do you know it’s not meneres ? My doctors have been pretty useless tbh no tests or referrals

The rocky boat feeling stopped for me after a few weeks maybe 6 weeks or so and kinda turned into like a residual dizzy kind of feeling - hard to describe but I think it was around the 9 wee kk mark I started feeling a lot better as mentioned above Cept catching that stupid cold made it worse. Doc described it like this - you have the initial earthquake - vertigo - then there are little aftershocks that can happen - anything that irritates the nerves like a cold etc. for some ppl they recover really quickly within that 4-6 weeks and others like myself it’s just taking alot longer who knows why.
as for meneires doc said labs dizziness and sick feeling is constant after initial attack. Like mine hasn’t stopped since I got it 13 weeks ago every day I feel dizzy and sick Cept when I was starting to recover then it became intermittent through the day. Meneires is not constant for weeks on end and usually is more episodes of vertigo - but that’s just what he told me.

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.