Anyone had Labyrinthitis?

[OnNaturesCourse]

What was your experience?

Since middle of last month I've had 2 episodes of vertigo badly, and 4 episodes of a woozy dizziness that lasts from 5 mins - 30 mins. It's all horrible and makes my heart race. More recently I've been a bit lightheaded and heavy feeling, ringing in my ears and a cool burning feeling in my ears if I've been in a noisy, busy environment. Can't find any set triggers for the vertigo or dizzy spells but looking up, even slowly, for a longer than a minute or so seems to bring on a woozy lightheaded spell and multiple noises (think busy restaurant everyone talking etc) makes me feel like I'm on a boat. Loud noises don't seem to trigger it, just multiple noises.

I know my anxiety is starting to set in and grab hold of all this so I'm trying to remain positive and sensible but everything I read says Labyrinthitis should be clearing up by now whereas I am getting more symptoms.

Been to the GP twice, including today, and just keep being told it's all "likely" inner ear. Today they said labyrinthitis and to give it another month before they'll refer me to ENT.

Aha before my labrynthitis diagnosis I had this once when I looked up from my desk at work. It was probably in the preceding months. Now and again since the full blown attack over 10 years ago, get a brief feeling when I have a head cold

The GP has said they will do a ENT referral in another 3 weeks as that will be near two months with it.

I've started myself on a multi vitamin and some Kalms to help ease my worries surrounding it all. Getting lots of rest and hydration. Another good day today with only a few spells of feeling on a boat - again the worse was in a noisy, busy environment and it was like my ears couldn't work out what direction the noise was coming from and it was throwing my balance off.

Just updating my own record... And for future searches should this come up..

Yesterday (4.5 weeks since it all started) I had a better day but, at a kids party, the noise triggered a massive weird turn where my ear rang and buzzed, my balance went like on a ship and my heart started racing after I panicked I was going to faint. Other than that it was much much better. Today I've braved the shops and managed! A bit woozy when we went for food afterward and I was looking up and down at my plate and continuing the conversation etc. But I feel like I'm improving, slowly.

I'm taking anti sickness (4 days in now) Kalms (4 days in) multi vitamin (4 days) and a sinus spray (2 days in).

Finding my triggers to be looking up and down but only when doing so slightly, large movements not as bad, and extremely loud environments with multiple noises (think party, lots of overlapping conversation) Plus my anxiety of having a dizzy attack makes it all worse when it starts.

One week on.

Still woozy in noisy environments, and my neck feels a bit tight and tender but that could be down to me using a neck massager to get my tension out. Overall more relaxed, possibly a placebo effect from the Kalms tablets but I'll take it as i feel better. Ringing in ears is much more frequent and my level of hearing is still very much up and down plus my ears went through a very sore phase and the underneath of them is still tender to touch.

Hoping I am turning a corner and won't need any referrals.

Currently taking multi vitamins with iron and kalms. Anti sickness stopped per GP advice of only using for three days.

Checking back in as after a very mild cold this has come back 😭 no spinning but very unstable on my feet sometimes and I have come to loath busy environments.

Had eyes tested - all good, slight change to glasses but nothing major. They did note a slight muscle weakness in my left eye but no concerns.

Going to try the GP again on Monday but I'm sick of feeling like a shell of myself.

I get it when I bend my head back. I had an episode in the dentists yesterday from going into the chair and I tilted my head back. I had to grip onto the doorframe to stop me from falling over when I got out of the chair. I think you do probably need a referral. I'm holding off for the time being as I know what triggers it.

I'm hoping when I speak to them on Monday they treat it as a ongoing issue and not a new problem as there was a break of a few weeks with no issue. That way they should refer me.

I'm wondering if it's maybe actually migraine related now tbh.

Could be Menieres. Had a friend with this.

I had similar for several months during Covid. Couldn’t work, couldn’t drive. A balance physio diagnosed bilateral vestibular hypofunction and several weeks of vestibular rehabilitation exercises finally sorted it. I had never felt so ill.
It also started with pulsatile tinnitus which I still have! MRI clear.

Mine started all of a sudden when I just couldn’t walk upright, crawled to my bedroom
where my phone was and vomited over my bed. I called 999 and was quickly taken to hospital where it was first suspected I’d had a stroke. However it was quickly established I hadn’t and eventually labyrinthitis was diagnosed. I think it went on for a few weeks. It’s all a bit of a blur tbh and I felt so very unwell all the time. When it got better it was also very sudden, I got up one morning and it was gone. I was about 50 at the time.

Will phone tomorrow. Today hasn't been much better. Dizzy just sitting down.

Sorry to hear your symptoms are back.

I have similar and I’ve recently found that holding my head over a bowl of steam until my nose really clears helps a bit to stop the off balance dizzy feeling.

might be worth a try as you say it’s come back after having a cold

I had it. And god, it was horrendous. I could do nothing other than lie down. Any standing up or moving at all made me so nauseous and dizzy. I couldn’t walk in a straight line, never mind drive or work.
After about 2 months and nothing the Dr doing helping me, in desperation, I had acupuncture. I generally don’t go in for “woo” but if I’d been told to chop my leg off to feel better, I would have. Either way, acupuncture sorted it in 24 hrs.
Coincidence, would it have gone away anyway? Who knows. But I never want to have labyrinthitis again. It’s vile and so debilitating.

Thanks all. Failed to get an appointment today 😞 will try again tomorrow. Did anyone have a mild on and off headache with it?, feel the pressure in my ears is causing it

I had suspected Labyrinthitis but as it didn’t clear up they now think Ménière’s. Been waiting for an ENT referral for 4 months so have gone private.

Are you on betahistine?

Perimenopause caused mine. Look into it.

Your post could have been written by me! Mine started with a horrible cold just after Christmas and then a few days later I got the horrible spinning vertigo when I tried to roll over in bed. I had also fallen down the stairs the previous day so I thought I was dying when I got the vertigo, it was so frightening. After some research online I did the Epley manoeuvre and it worked. Then the following week I started just feeling dizzy when I moved my head. It was nowhere near as bad as the vertigo but the EM didn’t work for this. I bought some Stugeron and that helped a lot. It’s still there a little bit but I saw a doctor and she said that there isn’t much I can do and that it will eventually clear up on its own.

I'm not on anything as still haven't got a GP appointment. I won't get one tomorrow either as I'm away with work so looking like Thursday or Friday. I'm so tired with it, was up most of the night with ringing in my ears making it impossible to nod off.

Went to chemist who referred me to GP (ironic...) and GP has said "let it run it's course". When u pointed out this is ongoing they just said they weren't concerned as the room wasn't spinning anymore I just felt a bit dizzy. I asked how long I should let it run it's course and got a vague "give it time and phone back if it gets worse."

Fabby.

Look up vestibular rehabilitation exercises. But they don’t work instantly. Weeks.

Goodness , OP, you poor thing . I get severe attacks where I have to drop to the ground . I then lie there and vomit and usually have the other end too 🙈until the spinning stops . Mine lasts about three hours . I’m then a shaky mess for a day but usually ok again . I tend to get a series of attacks and then it goes away , sometimes for years . It’s horrendous. I’d rather give birth pain free . My last attack was August when I was in London on our annual musical trip . I had to lie on the floor and be sick for the entire performance of Phantom…..

@Dublassie oh no, how awful. This is my fear, it getting in the way of life. Had a attack on the school run and it was awful.

@Dublassie mine sounds like yours. Literally out of nowhere - first time I was sitting there completely stationary at work and the boat feeling came. Someone got me to the bathroom and I spent 2 hours on the floor throwing up.

OP as others have said, hassle your doctors over and over. I have had this on and off for about 8 years. Some attacks just fleeting spells of dizziness and sone so debilitating I haven’t been about to leave bed for days. Once we were due to go on the holiday of a lifetime when the DC were younger. I spent the week before we were due to fly completely bedridden and was on the verge of cancelling the holiday but it magically went the day before.

Apart from it being completely horrendous, your hearing is the thing I would be thinking about. I have 80% hearing loss in one ear because of it and I often wonder if this could have been avoided it if I had had a greater sense of urgency after the first attack.

I have had just about every test / appointment there is over the years but I think it just does it’s own thing (I may be wrong but I think the Epley manoeuvre only works if it’s just ear crystals) but I think it cleared up of its own accord. I have not had an attack in 3 years and it’s a huge relief. I am conscious it could return at any stage however. I’m not sure I’ll ever feel completely in the clear.

Def hassle to get an appointment as the referral process can take a while and see if you can get prescribed Betahistine.

I have an NHS hearing aid but can’t seem to get on with it so I don’t wear it most of the time but I would say the hearing loss is the thing that has bothered me most. Hopefully it won’t happen to you but pls try and get a docs appt asap. Don’t do what I did and feel so much better between attacks that you forget about it and don’t bother!

Try EPLEY MANEUVER. Just go on youtube and find videos. I have tries the one kneeling and second lying in bed on your side. Did both once, and miraculously was cured! Could not believe it! My vertigo came after heavy cold episode.

My husband got diagnosed this by his GP. He got tablets to take every day and was referred to a physio to get advice on exercises he does 3 times a day. They involve him lying down either on a bed or the floor.

Whether it's the tablets or the exercises or a combination I don't know, but he is feeling much better now, a few weeks on.

@OnNaturesCourse I've just remembered something else my husband did. When he was at home and hearing ringing in his ears, he put on classical music as background music and said that really helped.