Labyrinthitis & tinnitus

[Cityfan1]

Had mild tinnitus for a while which I could cope with, but since the onset of labyrinthitis back in March the tinnitus has got much worse, particularly recently..anyone had similar?..Currently in bed after another labyrinthitis 'episode'.

[Beesmac]

Hello - I have had tinnitus for many years which didn’t really bother me but in December 2020 I had a bout of Labyrinthitis which left me almost totally deaf in my right ear. The dizziness and nausea was bad enough but after a week I developed musical ear syndrome - i now also hear undefined repetitive music 24/7. Have you seen a specialist regarding your Labyrinthitis? I had an MRI which was ok but needed new hearing aids which I was told would help my tinnitus but unfortunately they don’t, but do help some people so if you haven’t had your hearing tested it may be a good idea. I still have balance issues. Hope you improve soon x

[Cityfan1 in reply to Beesmac]

Thanks for your reply, I have had similar in that my right ear is almost deaf and the tinnitus has increased to very loud level in that ear with the other beginning to follow suit. Ihave now had 7 labyrinthitis 'episodes' when I am sick/dizzy...each one seems to have a negative impact on the tinnitus....after a lot of tooing and froing I have an appointment with a specialist in just under 2 weeks, part of me is hopeful, the other fearing there might not be much positive news to come, hope I'm wrong...I am hoping that hearing aids will be one of the outcomes before to long. How are you coping? Is sleep a problem for you?

[Beesmac in reply to Cityfan1]

Hello, Sorry to hear how much you are suffering - has Menieres been ruled out?? Good that you are being seen soon as it really is debilitating. I was in a dreadful state when all this started and I couldn’t sleep. In the early days I used to listen to Zen music on YouTube until I dropped off but as I started to accept that my tinnitus was not going away I find that if I have a good book to get absorbed in, with my hearing aids out and no noise for my tinnitus to compete with, I do drop off ok. If my tinnitus is really bad I have Diazepam to take, only 2mg and I don’t take it regularly, but it does help. Being asleep is the only time I am not aware of my tinnitus, and thankfully it doesn’t invade my dreams!!! Hope you get on ok with the specialist. x

[Cityfan1 in reply to Beesmac]

Looks like it is meniere's after all according to the specialist...have some tablets Inc steroids for a week, (into 3rd day) but tinnitus as bad as ever been since woke up at just before 4am this morning.

[Beesmac in reply to Cityfan1]

Don’t despair - it’s good that you have a diagnosis and hopefully the steroids will help. Menieres can burn itself out in time so there is hope. Just try and take each day as they come and try and remember distraction can help take your mind off the tinnitus. You will get better days. Thank you for keeping us informed and hope you see some improvement soon x

[Cityfan1 in reply to Beesmac]

Thank you for your reply appreciated...

[Cityfan1]

In my mind meniere's is still a strong possibility, over the 6 months I have gone from diagnosis of BBPV, to possibly meniere's, to its labyrinthitis ...the tinnitus being loud is a fairly recent thing so I'm trying to work out whether zen music helps , and I also have Diazepam which I'm trying for the second time tonight , problem so far is not dropping off quickly, and when I do drop off waking up a few times when the routine starts again...how long have you had the tinnitus..and the labyrinthitis? With the later if you have had several 'episodes' do you feel ok after or does it still linger? ....One doctor said if you have been living 10 out of 10, you now have to live 8 out of 10....at the moment I would be glad for an 8!... just to say, I appreciate your replies and time...please say if I'm bombarding you or being a bit selfish with all my questions!

[TrentR65]

I got tinnitus after COVID and it got a lot worse after getting flu the same year. Since then I've had repeated ear infections. With nausea and dizziness. I've had to take weeks off work this year because of the infections. It's very life limiting! I'm learning acceptance, and trying to adjust to living at a lower level of functionality, but I keep raging against it and wanting to 'fix' it. I've been waiting almost a year to see a specialist and finally did last week. No answers as such yet, but some reassurance that what I'm dealing with is difficult and that there is support - even if there isn't a solution as such.

I posted here because it's helped to hear others stories, and because labyrinthitis definitely made me T a lot worse. For me it's made it change pitch and tone randomly, and I get random pain and loss of hearing since then, then it settles again and my hearing comes back, the pain subsides, but the changes are enough to wake me up from deep sleep sometimes. It's harder to tune something out and ignoring when it keeps changing.

[Cityfan1]

I share your desire to want to 'fix it' that desire can be almost overwhelming, have you found anything that works for you / helps? what did your consultant say?