Pulsatile tinnitus

[RacingGirl3]

I have otosclerosis and have lost most of my hearing, I also have tinnitus but also pulsatile tinnitus which is with me all the time, I am being referred to ENT but it is a long wait.Any comments from anyone would help.

[heartmatters1]

Hi. I was diagnosed with otosclerosis 18 years ago & subsequently had a stapedectomy to my left ear, which I now call my bionic ear. Although this ear is now deteriorating, as is my right ear. I suffer too with tininitus 😫. I think I have learned to live with this over the years, although sometimes if I think about it too much it can really get to me. I have got hearing aids for both ears, but find wearing them most uncomfortable. If I had not had the stapedectomy I would be probably be almost completely deaf.

I hope you get the help you need asap. Best wishes.

[Edgar77 in reply to heartmatters1]

I worked in a noisy factory when I was young and was left with permanent tinnitus. I was diagnosed with menears disease and had been on medication for it for about 10 years. Every time I told them it didn't help all they would do was up the dose. Until I was on the strongest I could take. Finally I was told it was not menears after all, and to stop the meds immediately. The doc said I had been permanently sedated for 10 years. I went into melt down and was very ill for a long time. I was suicidal! I'm now told that I should have come off the meds slowly with medical help. I did look into complaining but have left it too late. I was in no fit state to do so until now. Just couldn't talk about it.

[heartmatters1 in reply to Edgar77]

Sorry to hear about your terrible misdiagnosis. I can understand how this must have affected you over the years. We are so in the hands of medics & take what they say as correct, but with my personal experience (long story) I am not so trusting any more. We could have taken it further, but was not strong enough at the time.

Best wishes for a healthy & happy 2024!

[Whit75]

hi I have otosclerosis & I developed pulsatile tinnitus about 1 & 1/2 years ago, mine is 24/7 along with normal tinnitus. Mine gets louder & quicker when I stand or bend over to pick something up etc. I waited along time for ent & I’m having an mri & mra on my head today.

[heartmatters1 in reply to Whit75]

Good luck with your scans & hope you get a positive outcome 🤞

[RacingGirl3 in reply to Whit75]

Hello I was diagnosed in the 1980s and gradually my hearing has gone , the pulsatile has got bad at night and also standing and bending,I have been referred to ENT but i am told it will be nine months to a year before im seen i have 2 hearing aids .

[BabsyWabsy]

I have a neurological problem in my left ear. Going to the same ENT dept where my husband was diagnosed with terminal throat cancer last March. He died in August 2023. My appointment is on Wednesday. It could be difficult.

[Skyline4 in reply to BabsyWabsy]

My thoughts are with you. Do look after yourself and accept any offers of support.

[Stoer]

While waiting for your appointment, have a look on Tinnitus UK'S website for some useful help. There are tinnitus support groups around the country and some are held via zoom, including the one I attend.

[winfong]

There is a tinnitus forum. Seach on "tinnitus" and join them. I'm sure they'd be a great help.