Labyrinthitus: Hello! I’m Mollie - I’ve been... - Tinnitus UK

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Labyrinthitus

mollieyoung_27 profile image
22 Replies

Hello! I’m Mollie - I’ve been unwell for 6 or 7 weeks now and haven’t been able to get any indication of what’s wrong until now. It started with nausea, anxiety and a viral rash which was diagnosed as Pityriasis Rosea.

I’ve had a load of tests done and all came back clear on everything, but my symptoms had moulded into dizziness, back pain, neck pain and the continuing nausea. The doctor suggested the viral infection I had has caused Labyrinthitus. I’m scared this will never go away, has anyone else experienced this?

Any advice would be great! Got chiropractor tomorrow as I know that can help speed up recovery and of course help with my back and neck pain.

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22 Replies
Jimbob7 profile image
Jimbob7

Labyrinthitus - if that's what you've got will go away - sometimes it takes its time to do so but it will. People usually get better after three or four weeks with complete recovery sometimes taking a month or two.

You should ask/ demand/ get an urgent referral to ENT who can either confirm your GP's diagnosis or search for what else it could be.

Good luck and try not to worry. It's a horrible little infection but it does go.

mollieyoung_27 profile image
mollieyoung_27 in reply toJimbob7

Hey, thank you for your response, the doctor wants to check my heart first as that can also contribute towards dizziness, think she’s just being extra cautious. I defo feel a ‘fullness’ in my ears, so I don’t think it’s my heart but hey ho. Your message is extremely reassuring, II really hope this clears up my Christmas - you’re right though, it is super nasty!

Happyrosie profile image
Happyrosie

as far as I can tell labyrinthites is a bit difficult to diagnose as against, for instance, Benign paroxysmal positional vertigo (BPPVj, Both of which I’ve had. Allegedly. They both feel the same, and the “cure” is just time. You might be prescribed anti-sickness pills, and also exercises to do.

The brain is being told one thing by the ears and another by the eyes, and gets confused, so these exercises help to train the brain to believe the eyes and not the ears.

You will get better.

mollieyoung_27 profile image
mollieyoung_27 in reply toHappyrosie

Thanks for your reply! Thats really reassuring, I hope you haven’t suffered too much or too long when you had it. They think its that as my symptoms are so much worse after any form of exercise where im moving quite a bit. It’s been about 6 weeks now so hopefully I’m nearing the end!

Jimbob7 profile image
Jimbob7 in reply toHappyrosie

Labyrinthitus is a fairly easy diagnosis Rosie. You don a VR-looking headset - you can't see anything but I think it's Infrared and that shoots beams of light in to your eyes, and does some odd things for a minute or two and from your reactions and the reflections back to a camera inside it can diagnose both Labyrinthitus and, in fact Meniere's.

But that's not a GP thing - it's well in to the realms of ENT Consultants.

So, again Mollie - you must push for that ENT referral. That will, I'm sure, set your mind at rest.

Happyrosie profile image
Happyrosie in reply toJimbob7

Wow Jimbob that’s interesting!

My lab started about sixteen years ago and was diagnosed just by to my symptoms being given to GP.

The BPPV again was diagnosed in exactly the same way. It felt the same to me. The last time I looked these up (must be a couple of years ago now) the description of the symptoms seemed very similar.

mollieyoung_27 profile image
mollieyoung_27 in reply toHappyrosie

yeah they are similar, same as vestibulr migraines, all connected for sure! i’ll defo push for an ENT. Thanks both

Beesmac profile image
Beesmac

Hello - My Labyrinthitis began almost 4 years ago when I woke one morning to find my ear “blocked”. I went down to make a cup of tea and instantly felt sick and dizzy. Covid was rampant so I didn’t to see anyone , just a telecon with 111. Turned out that my ear wasn’t blocked but I had lost the hearing in that ear. A few days later my GP prescribed steroids. About a week later my tinnitus began in the form of “musical Ear Syndrome”. Please look it up if you haven’t heard of it. I paid to see an ENT specialist who confirmed Labyrinthitis and BPPV. I think it would be wise if you asked for an MRI . I have learned to live with the symptoms but my balance can be poor at times and I can’t bear noisy environments. As long as there’s nothing untoward happening you do learn to live with it. Have you also had your ears tested? Good luck. X

mollieyoung_27 profile image
mollieyoung_27 in reply toBeesmac

Oh wow, that sounds super rough, I’m sorry you had to go through that, especially when COVID-19 was rampant. I hope you’re doing better than you were. I haven’t had any hearing loss, my ears have been tested, but I have had fullness in the ears, dizziness, nausea and fatigue. Went to the chiropractor today who has dealt with this issue a lot, he found a lot of tension in my neck and back which he said will be slowing down the healing process! He also said no tea or coffee (not even decafe), no alcohol (obviously) and not to exercise bar walking until I’m better. It’s crazy how the inner ear can affect so much of your body! Thanks for your message :)

Beesmac profile image
Beesmac in reply tomollieyoung_27

Hi, yes, we take our ears for granted dont we until something goes wrong! Good news that you don’t have hearing loss. Labyrinthitis can take a few months to get better. Sounds like your chiropractor knows his stuff so hopefully he’ll help you through this x

CamperT25 profile image
CamperT25

Hi, I have had Labrinthitis, it took 9 weeks altogether to go, can take a while. Xx

mollieyoung_27 profile image
mollieyoung_27 in reply toCamperT25

Hi Camper, thank you for your message! What were your symptoms if you don’t mind me asking? Good to know even if it takes a while, it does eventually go!

CamperT25 profile image
CamperT25 in reply tomollieyoung_27

Yes, the Labrinthitis went completely. I was off work for 3.5 weeks, then very wobbly walking, for 6 more weeks. It took another week to walk in the dark without wobbling. The doctor gave me some medication to help with the sickness. I was sick for 23 hours when I first got the virus, then was very wobbly, like walking whilst on a ship on a rough sea.

Philip6 profile image
Philip6

Hello, I had Labyrinthitis once, I had to spend a week in bed, I could hardly move. The Dr normally gives you pills to clear it up. My Brother gets it and is always given pills too, in a few days they clear it up. He has to spend days in bed too. If you try and get up you end up very dizzy and being sick.

mollieyoung_27 profile image
mollieyoung_27 in reply toPhilip6

Hey, do you know what pills? They gave me anti-nausea but told me to not take them after 3 days as they are very addicitive and slow down recovery. I have been able to live relatively normally bar no exercise or driving so maybe they didn’t give me the strong strong stuff?

Philip6 profile image
Philip6 in reply tomollieyoung_27

I was given Stemetil, that's what my Brother gets too, it quickly sorts it out. I hope you soon feel better.

Hel_C profile image
Hel_C

I had labyrinthitis in the summer and it lasted about 4 weeks and was quite debilitating and frightening when it first happened. It has gone and not come back. My GP prescribed medication to take like I would paracetamol when symptoms come on and fingers crossed I haven't needed to take it since.

mollieyoung_27 profile image
mollieyoung_27 in reply toHel_C

Yeah it is super scary, I thought it was just anxiety then the dizziness happened, which then made me think I was going to be diagnosed with something deadly. Glad you’re feeling better, fingers crossed it doesn’t come back :)

Peppemint24 profile image
Peppemint24

Hello Mollie, I can only talk about labyrinthitis. But I can reassure you if it ever comes back it's never as bad as the first bout. I had a first horrendous bout 7 years ago. I've had it mildly several times since including recently. It was much milder. I weirdly find it happens late autumn, early winter. Hang on in there!

mollieyoung_27 profile image
mollieyoung_27 in reply toPeppemint24

Hey, what were your symptoms if you remember? At least you’re prepared for it if it happens and its mild which is good - mine was definitely from a virus but I’ve had viruses before and never had anything like this as an after effect. It is really scary, but went to the chiropractor today and he’s really helped so fingers crossed I’ll recover soon! Thanks for your message :)

Peppemint24 profile image
Peppemint24

Hi Mollie, I can't remember if it was after a virus but my labyrinthitis caused severe dizziness. The room spun violently and I had some vomiting. I had to crawl to the toilet. It was about 4 days at its worst, 2 weeks in total. When I get it again the symptoms are similar but milder. I found anti nausea medicine to have no effect for me personally. Another symptom is a feeling when I turn my head it takes a few seconds for my head to follow. Hard to explain but really disorienting. I'm glad the chiropractor helped, take care 🙂

Inthepark profile image
Inthepark

Hi , I had this 2 years ago one day just woke up with vertigo sickness and couldnt really walk anywhere the dizziness was so bad and I’ve not really been right since . You deffo need to see a ent specialist just to rule out anything else that may be causing your symptoms ,best thing is to keep walking as much as you can it will help with the balance problems and don’t move your head quickly use your eyes first then turn your head this helped me the most along with a few other exercises it did take quite a while for things to settle with me about 6 months but then I ended up with hearing loss in my left ear and tinnitus which drives me mad hopefully you won’t get that .I still get a bit off balance now but nothing like those few months and I’m a lot older than you which is not helpful ,my dog saved me because he needed his walks ,be patient and it will improve .

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