first time post : Hello all, my tinnitus started... - Tinnitus UK

Tinnitus UK

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Bridiecat profile image
9 Replies

Hello all, my tinnitus started around 6 years ago with a few days of pulsatile, which then ended but progressed onto very distant sshhh tinnitus. I have had two bad bouts of bppv ( managed by the figure of 8 manoeuvre) before the tinnitus and no recurrence since the tinnitus arrived. My brother has meniers with tinnitus, my grandfather and father also suffered tinnitus with hearing loss, all of us around the ages of our 50’s. I have been a dance instructor and played fiddle for years, so music close to my ears has always been a feature of my life. After the third covid jab, I had bad side effects but noticed that the tinnitus had ramped up to noticeable. Since then I have had two hearing tests both showing a rapid decline to profound loss of high frequencies. I now wear hearing aids that also emit a high frequency tinnitus white noise (my tinnitus sound is actually white noise with a far distant mild whistle) as though someone is saying shhhhhhh in my head/ears). It is has become louder since my hearing loss but I don’t let it get the better of me. It is loud now but I am habituated as it has been a slow gradual process of increase sound over many years, I can actually cancel it out by making the sound with my mouth. Sometimes when I am distracted by it at night, I shhhshhhh shhh myself to sleep. So many interesting experiences here and so reassuring that I am not the only sufferer. I am also a swimmer and find that swim training with my head under water with ear plugs is a welcome relief.

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Bridiecat
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9 Replies
Happyrosie profile image
Happyrosie

thank you for posting, Bridiecat. There are many people who’ve posted on this forum. Mostly they are asking for help and advice on what to do about their tinnitus.

I assume that responses have been helpful as they no longer post on here.

So it’s really god to hear from someone who has Mr T under their thumb, as you have. To me, it’s part of life - annoying maybe, but that’s how it is.

Part of life’s rich pattern.

Beesmac profile image
Beesmac

Good morning Bridiecat. Thank you for posting and I feel sure it will give hope and encouragement to all reading your positivity. It is so easy to let tinnitus rule your life and with my tinnitus which is Musical Ear Syndrome, I find it both fascinating and infuriating!! I too have lost the higher tones and what should be familiar pieces of music that I love don’t sound the same any more. I was interested to read about the shushing as I do get that when settled in bed reading my book - almost as if I were in a tunnel. Mine began 3 years ago when a bout of Labyrinthitis left me almost totally deaf in my right ear. That is brilliant that you have habituated and again, I’m sure that will give hope to a lot of people. I’m looking forward to the day that I can post that I’ve achieved that goal. Well done. x

Tal-r789T profile image
Tal-r789T

Hi, it sounds like your experiences are like mine, I've had hearing aid for 10 months now, and have in the last few noticed the spikes in T are less pronounced and my mood and outlook improving. I'm not 50 and the reason for my hearing loss is different, but the hearing aids have saved me. It sounds like you are much further down the road of habituating than me, I'm hopeful over the next year or so I get much more stability and my brain learns to pay less attention. It's positive to me to read people in similar circumstances are getting there with habituation.

Covenette1 profile image
Covenette1

hi Bridiecat, it was great to read your post, I’m with Happyrosie, my view on T is it’s just part of my life now….. so I try to get along with it and like you, don’t let T stop me. Yes, some days are harder but on the whole it’s ok. Keep up the positivity! Kimx

Agnetha1985 profile image
Agnetha1985

So good to hear your story so far. I am always surprised when I talk about T how many people around me have a version of it. Thank goodness for this forum which supports people to not feel on their own.

Bridiecat profile image
Bridiecat in reply toAgnetha1985

I think more people have it in early degrees, than is known. I’m concerned for our young people and ear buds in their ears all the time.

UsOrThem profile image
UsOrThem

Only had T for two months but have experimented with it.

Things that have helped; Walking outdoors (6k steps and upwards), especially later in the day to assist intensity of T and sleep; foam ear plugs for an hour or two; sound pillow to assist sleep.

Things that make it worse; as per Bridiecat - ear buds playing music or radio (trying headphones this week).

Neutral; as opposed to walking outside, using an exercise bike indoors doesn’t affect my at; diet doesn’t seem to have any impact, including caffeine and alcohol

Cookie24 profile image
Cookie24

Did the audiologist set up the white noise for your hearing aids? Do your hearing have an option to change the masking noise? I am in USA.

Bridiecat profile image
Bridiecat in reply toCookie24

I mentioned it at one of my early reviews, not sure if my aids can change sound. The white noise from the hearing aids (I cannot hear it) are apparently replicating the noises frequencies that my brain is ‘hunting’ for and that have been lost, hence the high frequency white noise, whilst wearing the aids, gives the brain something else to focus on rather than making it up itself, so cancels itself out somewhat. When I take the aids out to sleep, the tinnitus is noticeable again however it doesn’t stop me sleeping anymore. Head colds spike it though. I am in UK.

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