To ask you about labyrinthitis?

[helpmepleasee]

Hi! I'm so sorry this is not really an AIBU.

I have been having periods of labyrinthitis for a long time now - around a year, a few weeks at a time.

I've just got rid of it and it has returned. I've taken all the tablets the GP has given me to no avail. Can anyone give me any tips at all?

Also, how long does this usually last? It's absolutely horrific and I haven't been able to leave my bed for weeks now.

@troubleswillbeoutofsight that sounds horrific. I have to go back to work tomorrow unfortunately struggling big time

I think stemetil is the same as prochlorperazine which is what I’ve been taking for the last two days so hopefully it will kick in soon.

Ive just recovered from this. I had drops for my ear that really helped.

I was initially being seen by an ENT specialist at a private hospital - he usually performed the Epley manouvere which always helped , but he was also very fixated on it being linked to anxiety which frustrated me greatly because I completely disagreed. Yes, I did feel anxious , but that was because of the labrinthitis , not the cause of it !

Eventually I stopped going to him becuase he was making me feel crazy and I found out that one of our GPs could perform the epley so I went to him. He was lovely and referred me to a vestibular physiotherapist who was just amazing .
She totally understood what i was going through and gave me lots of exercises to retrain my brain about balance as well as working on my neck and shoulders which had become very tight as a result of holding myself very rigidly to counteract the dizziness. This muscle tightness round my neck and base of my head was causing a lot of brain fog which was very debilitating and she totally cleared it . She also told me to go to a yoga or body balance class to further develop my balance. This has helped a lot with my overall wellbeing.
This all happened over a period of about 18 months , and 5 years on I am much better. I think you always remain susceptible to it and I certainly don’t feel comfortable with certain head movements - looking up at high things or turning my head to look underneath a car for example . However , these things are fairly easily avoided and I am definitely living my life as normal now .
Sorry , this has been an epic reply but I hope it gives you some reassurance - definitely seek out a physio .

Push for a referral to ENT if you haven't already. I have had recurrent lanyrinthitis for the last 6 years. Finally got an ENT referral and it turns out I have nerve damage in my inner ear. I'm on permanent medication now but at least it keeps it at bay for you Cos I know how shit it feels!

I had it it and was put on tablets twice. Not a lot of change and requested a referral to ENO, luckily my work-health insurance covered it.

One session of Epley and a course at home and it was gone. Worth a try, I found it so hard turning unexpectedly and having attacks it really limited what I felt I could do.

What meds, cricketmum?

I have it but vestibular neuronitis
Spelling might be wrong
Went to dizzy clinic
Diagnosed
Sent to brain physio where you get excersise s to retrain brain
Fog is caused by brain working overtime as messages sent to brain from nerve are wrong
Worst thing to do is lay in bed
I was told that because the message sent from ear to brain was wrong my brain was struggling
The physio was best thing ever
There are exercises on YouTube.
I did not have crystals though so might be different

Sorry I've disappeared a bit - tonight's been particularly bad.
@monkeycat that is actually really helpful, thank you. I'm glad you're better. I think I'm going to phone the doctor in the morning and ask for further help or a referral. I think by this point it's needed.

I am back to work tomorrow evening. I am unsure if this is going to help or make it worse. I can't even think of getting up, BUT a PP also said the worst thing to do is to stay in bed. I just don't know

OP I think going back to work is too much. Especially if you have to drive.

I’ve been taking prochlorperazine and it’s giving me the most exhausting dreams. I don’t know if they’re helping.

Good luck.

@MrsBertBibby I'm on betahistine. They work by increasing the blood flow to my ears.

Prochloperazine/stematil are good but only in the short term. Basically you need to retrain your brain to read the messages sent by your ears. Stematil blocks those messages and stops the dizzy feelings but whileever you are on them your brain cannot fix itself.

My GP kept me on stematil for ages and then when I was referred to ENT he hit the roof and told me to throw them away and switched me to betahistine. My dizziness was better within a few weeks, on the stematil I was just living tablet to tablet to stop the dizziness.

Betahistine worked for me too. That and the drops for the infection in one ear. My gp was adamant it was stress related. Stress was a factor, but it frustrated me that he only looked in my ear because I insisted. Sound hurt and made the dizziness so much worse. I had an infection. Clearing the infection helped.

That is interesting re betahistane. I am in the same bunch as you, cricket : battling nonsense ear signals and trying to retrain my brain. Prochlorperazine was useless but I haven't tried the betahistane. Balance physio sorted me last time around but I guess getting older and more stressed with every year really doesn't bode well for the brain's re-trainability.

Half an hour in and it already feels like I've came back too soon. Unfortunately i wouldn't be allowed to leave or work from home nobody to cover

Still absolutely awful. Honestly it seems to be so so so bad. The GP said it will pass and there's nothing else they can do.

I found that stemetil or betahistines both helped on occasion. When I was finally diagnosed with Hashimotos and put on thyroxine though the vertigo totally disappeared and only came back when my thyroxine dose became too low (pregnancy). Supposedly it is linked when it's Menieres disease but the thyroxine isn't meant to treat it, it just does for me. Anyway I suggest getting a thyroid check done, just in case.

Aw op I know how you feel. Promise you will feel better. The first time I had it, it took about three months. Just hang on I there. Sleep and rest is crucial. You might need to take sone time off. You have my sympathies.

Hugs, OP. I am in remission for secondary Meniere's and the vertigo was the vilest thing I have ever experienced. I had symptoms on and off for 18 months, and it went away (more or less) as mysteriously as it appeared. I got acute attacks lasting up to four or five hours once or twice a month and basically didn't go anywhere except to work and back during that time. I took a bag to be sick into and enough cash to get a cab home every time I left home. I do find now that moving my head in some positions makes me dizzy for a few minutes - the dentist's chair is a bit of an issue, and the one time I was put on a Swiss ball at the gym I felt very sick very quickly. If it's positional, what can help is working out which position triggers it and avoiding it.

Thank you all so much for the advice/reassurance.
Honestly I'm just so so miserable. I cannot believe how badly it can make you feel. Massive to all fellow sufferers!

I think tonight will just be another night of cups of tea and doing nothing. Feel so unproductive and bored it's unreal

No advice but lots of sympathy from a fellow sufferer. It completely knocked me for six and I couldn’t read, watch TV, move, eat for almost four weeks. The thought of it returning sends shivers down my spine. Out of interest, has anyone else had long term hearing problems as a result of it? I have and now require hearing aids to hear properly.

OP it is possible as other posters have suggested that the original bout of labyrinthitis (a viral attack on the inner ear) has left you with a damaged ear. I banged my head 4 years ago and then went down with labyrinthitis 2 weeks later which irreparably damaged my left ear. Taking prochlorperazine made me feel better temporarily but led to heart palpatations which I discovered were a mild panic attack because my brain wasn't happy with the damaged vestibular system. Ultimately I had to recalibrate and retrain my brain which means coming off all medication. I started walking about and going about my normal business - gradually without trying to overdo it. I won't say it wasn't awful - going to bed feeling like the bed was sinking beneath me. It was a long hard slog and I had an almost permanent migrainous headache for several months not to mention vertigo. However ears don't mend and the doctors couldn't help me. I had to do it myself. I am now absolutely fine with the exception of boats !!

@silverrain22 honestly it could be possible but I can't even begin to think of how awful that would have been for you.

I honestly don't think I can cope with trying to get up at the moment and get on with it - I just don't think it's possible

I was not suggesting you should because your problems may be different. Just lots of sympathy because vertigo is horrid I know. I was referred to an Ear Nose and Throat consultant in the end. I hope things improve for you soon.

@silverrain22 thank you so much another terrible terrible week. Got a warning because I've been off for 5 days now.

I'm back to work on Thursday and I have to make it

Oh @helpmepleasee sending so many sympathies. Mine is bloody awful at the moment. Even scrolling on my phone makes me feel sick. My head spins and then it does this weird whooshy thing where it feels like I've fallen to one side.

I've been warned about absence too so have to go to work. I work with paper and computer screens so a lot of head movement which doesn't help.

I would honestly go and get signed off for a further week, give your head chance to start getting back to normal. They can't give you a second warning for the same absence!!

When you see the doctor ask about ENT referral and how long they expect you to suffer before they look into it properly!