Hi I'm new to the site

Just joined the site today but been dealing with hearing lost for well over 30 years. I have otosclerosis (don't know how to spell it lol) and was given one hearing aid originally but later on I got enough hearing in my other ear to have two. Most of the time it is great being able to hear but I do suffer sometimes from crackles and annoying noises and most recently my left ear has been reacting to the moulds and I have had 4 different ones in the last 6 months. I now have a bad ulcer on my ear and have been told by doctor not to wear it till they can change the mould again!! This is so frustrating because it is sore ear or hear and the ulcer won't heal up with it in. Things like watching TV have become such a struggle and I can't hear on my left side at all now so everything seems so unbalanced. Sorry for the moan here I am really lucky to be able to hear anything

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  • Hi. Hope things have improved a bit since you joined.

    My hearing aid generator has decided to start working again but luckily got a cancellation on Friday to go and have it turned up. Audiologist wanted it louder in the first place but I found it scary. However, I got used to it quickly and found it comforting when I could hear it. She did take out some of the higher pitches. Didn't like them at all. It's tailored to your hearing test results I think.

    Dr gave promethazine last week and my tinnitus went up. No doubt nerves about an otoxic medication didn't help.

    Been in a bit of a state as he wanted me to keep taking it. Saw him again last week several days after he gave me it. Said to continue for another week and there was nothing else he could give me. Diazepam etc ..only fix things a little while.

    Well, I've felt panicked ever since. I felt as if help had been cut off.

    Anyway after days of getting in a state and wearing earphones and trying different sounds to help ease it I went back to see him today and laid my cards on the table about how horrible the last days have been and I need something to help me.

    I go for an operation next week, a hospital appointment several days later and back to audiology to get a noise generator for my other ear. My hearing is fine in that. I never had tinnitus in it till I had a breakdown last May and it's been getting more noticeable.

    With what I thought was a broken noise generator for my bad ear, the news the doctor said there was nothing else, dizziness and foggy eyes I was up to high so to say the least.

    He has given me diazepam for three weeks to see me through all these appointments and I hope when I get the other generator for my other ear I will truly start to feel better.

    My tinnitus has been sky high and up and down and in between today. Don't hear the generator sometimes just the tinnitus. I only got the generator about three weeks ago and as I say I found it comforting knowing it was working away and the noise had softened a bit within a fortnight.

    I would sit and watch TV and do all the normal things I felt too paralysed by it to do before. It still scares me and I am hoping two generators will sort that. I have been better than this since May but the new tablets sent me on a backslide. Anxiety probably as well as having the other things wrong

    I suffer dizziness and catarrh as well. Bleary eyes for a good bit of the day. Sinuses and ears are clear and nasal spray doesn't do much at all so decided to change my diet to see if that will help congestion. Doctor said the eyes could be down to elimination of the foods from my diet. The toxins coming out.

    It is confusing to have different things wrong and deal with tinnitus and it can make you more ill. Stress etc..

    How are you now? Better or nearer I hope.

    Jennifer x

  • Hi there I'm new here too and recently diagnosed with otosclerosis. My hearing was fine (I thought anyway) until May of last year when I lost my hearing in one ear almost totally over the course of a week. Took a lot of too-ing and fro-ing, scans and tests before I finally got my diagnosis. Anyway the upshot is I'm waiting for a hearing aid, got my first audiology appointment next week. Ive also had awful tinnitus in that ear ever since.

    Sorry you're having trouble with your ear moulds, my mums been having similar trouble with hers since she got new ones, I'm a bit nervous about getting mine but looking forward to being able to hear again and not feeling so isolated! It's not nice is it? Bev X

  • No Bev it's not nice feeling isolated. I'm back to feeling a bit like that again til they sort something our for me. Buying my own is unfortunately not an option for me. How is your mum doing with her moulds now? Jan x

  • A bit better thanks Jan, had to take them back to the hearing aid clinic a couple of times, says they filed a bit off to make them fit better?! Sounds strange but what do I know? Lol. She's had aids in both ears for 15 years but hearing loss (otosclerosis) for about 40.

    How do you get on with the aids generally? It's not like your own hearing, so I'm told. Bev X

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