Noise sensitivity

[Nikkilama]

I would love any suggestions that you can think of. Since my problems kicked off 18 weeks ago I have had constant intense ear ache and tinnitus. What is most upsetting of all is I cannot bare to listen to music and it's my greatest love. I've had to cancel the opera and ballet and music festivals all through this year. It's very hard to try and stay positive when my main way of coping has been taken away from me. So please tell me any way at all that you have found to ease noise sensitivity. On very bad days I use the ear plugs recommended on here. I also take deep hot baths with Epsom salts to bathe my ears which helps a lot. 🌻

Thank you for any and all suggestions.

[Ianrussell69]

I have the same please tell me if when you get tennitus dose it make you dizzy.some times I get it and it stops me in my tracks but luckily it only lasts for seconds I find that 3m earbuds work very well

[Nikkilama in reply to Ianrussell69]

Hi. Sometimes dizzy. Sometimes nauseous

[whisperit]

Urgh, that must be just horrible, Nikkilama, but I'm afraid I have nothing useful to offer. The NHS Choices site talks about a few options, some psychological and some physical. It also has a link to an Action on Hearing Loss forum which might have some people with lots of experience?

Have you tried any treatments or had anything suggested by your medics?

I do hope you can find some relief - keep us updated in any case x

[Hidden in reply to whisperit]

I can only say that tinnitus is something I'm still learning to live with and hyperacusis (noise sensitivity) is too. My dad had the noise sensitivity and both my sisters have been profoundly deaf since birth. However the audiologist says that, in my case, it doesn't relate to hearing loss. It appears to be a common feature in Sjögren's and I think I was told this is due to lack of ear wax and the related dryness. But the audiologist also wants me to speak to the ent about it and get my oral consultant to confirm the extent of my jaw arthritis.

Meanwhile I have been given this wee white noise aid - but I'm a bit hopeless at remembering to use it tbh! In fact I have so many health related gadgets now that I could start calling myself Silicon Valley!

I am getting to the stage where I don't think about it as much. It's always there whining away as a nuisance but I'm not always aware of it if there's background noise I can focus on. My main issue, like yours, is not enjoying listening or singing along to music anymore - and becoming irritable if any of my family subject me to their music too. I was singing in chamber choirs for 28 years so this is a real bummer for me too.

My sons and husband just laugh and roll their eyes about me when I put hands over ears -but they don't realise just how unbearable certain frequencies have become now. It's grim living with all this stuff as you know, but I do find that understanding the cause is a key ingredient to how well I manage to cope with it.

Similarly to burning mouth syndrome - if you are anything like me then you need to get to the bottom of the underlying cause before you can learn to live with it. Easier said than done of course but in my case my lip biopsy result made sense of a great deal. X

[Hidden in reply to whisperit]

Ps Action on Hearing Loss tinnitus helpline was worse than useless for me I'm afraid - the lass had a monotone, nasal voice and sounded about as interested in my tinnitus as a person from a random call centre might have been!

[Nikkilama in reply to Hidden]

Thank you. I agree with you that getting to the bottom of it would really help me. So far I have not been able to persuade my doc to let me go to ENT. She thinks it's not relevant. Which is ok for her to say. She looked in my ears and saw no problem. But it's definitely there. I keep hoping it might go away if I ever get into remission.

I can see why you can identify with me about the music. It's so sad to lose something that means so much isn't it.

Thanks for writing to me.

[Hidden in reply to Nikkilama]

It's tough when you are still in limbo with diagnosis and new symptoms join in on the act isn't it? I guess I've had this tinnitus for over a year now and initially i saw my old gp who couldn't see anything and just hoped it would resolve - but couldn't refer me because I was only a temporary patient by then. So I laid it on with a trowel with new gp over the phone - telling her that both my sisters are profoundly deaf and I've had dizziness, nose bleeds, problems swallowing etc. She did refer me but ENT just forwarded it to audiology and then wrote to gp suggesting naseptin for the nose bleeds. So no ENT person has ever seen me despite many issues over the years with my ears nose and throat.

And now I've got an emergency consult with ENT on Friday morning and I'm dreading them just brushing me off as a time waster!

And to be honest I find other symptoms even more problematic than tinnitus - most of all the tingling lips and gums and numbness plus the awful rotten taste I've had coming and going for stretches for 7 years now. I couldn't keep going with the choral singing anyway as my throat is so dry and I high notes made my nose bleed. I miss it like mad though so this PhD is going to have to fill a big hole!! It's amazing what we have to put up with due to autoimmunity really. But push hard for audiology input as no one should just have to accept this rubbish without proper investigations and opportunity to try white noise aid etc. I've got it in right now but the white noise itself is starting to get as annoying as the tinnitus I admit!