New to deaf

[Molbel]

Hi, I had a virus (according to my doctor), told my instant deafness would return...... 6 months later, course of steroids and steroid injections into my eardrum, almost no hearing in 1 ear and tinnitus that goes from slightly annoying at the start of the day to OK you've beat me by the end of the day. What I am curious about is, sometimes I can be hearing a whistle type of noise and with no reason it changes to a different pitch/tone and sometimes I can almost have 2 or 3 different noises (does that make sense)? i've joined here out of desperation, as I don't feel i'm getting anywhere with NHS or 2 x private consultations, Apparently I am struggling more because I lost my hearing overnight and not gradual and 1 more thing I don't appear to have any sensation when I put my finger in my ear, it feels numb and I can't stand anything rubbing against my ear. Never joined a chat group ever before, so sorry if i'm rambling. Just wondered if anyone can relate.... Thank you

[Marydairy]

Hi I have hissing like a snake mostly but it does change sometines to a whistle or clicking like morse code, I put it down to my brain is bored of the hissing so it likes to jazz it up!Tinnitus is s**t Ive had mine for 2 years come April, at first I was going crazy googling everything trying all sorts of so called remedies now I have accepted it nothing else can do.Where do you live in the UK?

[Molbel in reply to Marydairy]

Hi Marydairy thank you so much for replying, I feel slightly better just knowing "it's not just me" family are very sympathetic but it's not the same. I live in South Yorkshire. I look forward to learning to accept it. Thank you x

[Marydairy in reply to Molbel]

Morning only people with tinnitus can understand others with tinnitus when you tell people that don't they go, oh ok, which I guess is understandable, but talking to people with tinnitus is so much better. There are groups called Oto etc they help they do cbt which is meant to help.Try not to join groups on fb as it can be quite despairing quite negative.

It still drives me crazier some days. But as Beesmac said your not alone xxx

[Beesmac]

Hi Molbel - welcome. I can certainly relate to this, 3 years ago I lost the hearing in my right ear overnight. Woke up and thought I had a blocked ear, went down to make a cup of tea and had terrible dizziness and nausea start. Cut a long story short I had Labyrinthitis, a virus which attacks the middle ear. I too was given steroids but my hearing has never recovered in that ear.

About a week later I thought I could hear music, it was mid December time and I told my husband I could hear ‘Silent Night’. He looked outside in case it was the Rotary club out for their Christmas collection but of course, there was no-one there and he couldn’t hear anything. Next day I could still hear music but nothing I could identify and I thought it was funny to begin with. After a couple of weeks I began to get stressed so googled my symptoms only to discover I had a condition called Musical Ear Syndrome which is a form of Tinnitus. I was so distraught and thought I was going mad. As the pandemic was at its peak I paid to see an ENT specialist and had an MRI scan to rule out anything untoward. I see a lovely Audiologist at my local hospital who explained to me that when you have a sudden profound hearing loss, your brain recognises there is no sound being heard in that ear so puts some sound in for you!!! In my case, having a great love for music, that is what I hear although it is undefined, repetitive 24/7. I also hear noises like Cicadas and someone sending morse code!!

Has your GP suggested an MRI and have you had a hearing test as hearing aids do help some people to minimise the tinnitus. Read as much as you can about the problem. I did read that some people do get their hearing back after several months so don’t despair. Try and distract yourself from the tinnitus, I know it’s hard but if you can accept it, it helps. You are certainly not alone. x

[Molbel in reply to Beesmac]

Hi Beesmac thank you for responding. I've had am mri, I've tried hearing aids but my eardrum is fine, only a cochlear implant could help but because its only 1 ear I don't qualify. (Apparently). I'm trying CBT currently on week 2 but I feel I'm wasting the therapist time. I can't get passed just wanting silence and feeling angry with the GP for not taking me seriously in the beginning. Thank you so much for taking g the time to read my post. X

[Marydairy in reply to Beesmac]

Hi that made me laugh when I read that your husband looked out to see if it was the rotary club outside.Xx

[Beesmac]

Hi Molbel, my GP dismissed me at first saying he couldn’t help me and gave me a link to the British Tinnitus org. I was desperate at first and when he realised how much it was affecting me have me anti-depressants. I take either half or one diazepam (2mg) when it really gets me down which now, is occasionally. Glad your MRI was ok. You will get used to it in time. It does take a while but be assured there are loads of us going through the same. Xx