Tinnitus retraining?

[QueenieV]

Hi. I have just been diagnosed with an AN and am waiting to see a specialist consultant in January. It has been suggested I might benefit from Tinnitus Retraining. Has anyone else done this and if so what were your results?? Many thanks

[Sewtastic]

Hi I don’t have AN but what is described as catastrophic/severe tinnitus it’s loud and constant every single minute am awake. I have moderate hearing loss due to infection 18 months ago and the tinnitus is caused by this. I have hearing aid and the training maskers fitted, for 4 months. I wear it around 14/15 hours a day. So far it doesn’t seem to have helped in terms of noise level of tinnitus or having any tinnitus free time but I believe it can take up to a year.

[flappers in reply to Sewtastic]

Hi Sewtastic! I remember our chats about this! It's so good you didn't have an AN but I also know how utterly pants the tinnitus is. I looked back at our chat about the hearing aids and how they can help a bit (and tinnitus masker programme), but I guess we are both just learning to live with the constant noise. I had a bit of hypnotherapy and it helped in that I was more able to 'turn it down' and relax. Knowing we will never ever have silence is mind blowing but it is also amazing how we can adjust and live with it. i pretend it is cicadas and I am on holiday somewhere hot and that's the noise I can hear!

[DesertLady2 in reply to flappers]

I do the dame with my tinnitus...I pretend it is a white sound noise to help me sleep...during the day when I am busy I can deal but at night it is maddening!

[flappers in reply to DesertLady2]

I hear you! ( pardon the pun)

[DesertLady2 in reply to flappers]

Well, at least we can still hear something!

[Sewtastic in reply to flappers]

Hi there how lovely to hear from you! Yes it’s totally pants constant tinnitus I have wondered how you were getting on. It’s just constant every day, I wear the maskers and notice the ringing less but I need to take hearing aid out by 7pm latest so my brain can adjust in time for sleeping. Even so it just screeches especially in the quiet of the bedroom. I have bought a sleep phones headband it has flat speakers in which you can sleep in, so listen to an audible book on timer to disguise the ringing whilst I try and get to sleep. Great idea about cicadas I’ll give that a go! Have been given info about CBT course haven’t signed up yet but have hearing therapy check in a few weeks and it’s one of the things they’ll ask, so I probably will. Anything to help! I hope you’re doing well and so pleased to hear from you.Vivienne x

[flappers in reply to Sewtastic]

Definitely do the CBT…. As you say, anything is worth a try! I’m about to have my follow up scan in February to see how much ( or little) the AN has grown, so hoping for not a lot so I can stay on watch and wait for another year… in the meantime I’m taking free adult education lip reading courses, it’s such fun, great to be with others who understand the strain of hearing loss and feels like I’m doing something helpful. Love to hear how the CBT goes, I think I have strong self talk which helps me deal with the tinnitus and have used CBT techniques in my work with others so practice those myself…. But probably could do with a refresh… Good luck with your next ‘check in’ and staying sane in amongst our noisy brains! Lin x

[Sewtastic in reply to flappers]

Aah thank you, I’ll let you know. The lip reading sounds great my husband is profoundly deaf, he had a cochlear implant in October, still in the settling in and adjusting phase but is extremely promising. We are in Bristol having a city weekend ahead of an early appointment at the hearing implant centre here on Monday. He couldn’t get by without lip reading x

[QueenieV]

Thank you for all your replies. I have been diagnosed with a 9mm vestibular schwannoma and have been put on a watch & wait list. My tinnitus has moved completely in my right ear now and in noisy situations, I have no hearing on that side. It’s all very frustrating.

I have no issues sleeping because it settles down.

My balance is a bit all over the place so my keep fit classes are challenging!! Although after a few Gins I seem to be a lot steadier 😂

After discussions with my consultant, it was decided not to try tinnitus retraining but I am waiting for a couple of hearing tests.

Like the rest of us on here, I’m having to learn to live with this and stay positive!!

I’ve currently got Covid which is effecting my head & balance. X