Hyperacucisis: Hi everyone Been around these... - Tinnitus UK

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Hyperacucisis

34 Replies

Hi everyone

Been around these TINNITUS corridors for coming up to three years, I think till now I have been putting it off, it's not there, but to honest it's driving me crazy.

Went to ent and to be honest it was a waiste of my time, I think my T is more than just T, reading others posts it sounds like I've got hyperacis--- Aural fullness ( pressure in the ear ) nearly painful at times, with at times screaming T ( nice eh ) who apart from my GP and ent can I go and see.

Thanks Gary

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34 Replies
Andy0708 profile image
Andy0708

Hi Gary.

It does sound as though you may have Hyperacusis. Does it feel uncomfortable or appear too loud if you bang two plates together ?. You could try getting referred to a hearing therapist by your ENT specialist if they have one in your area. Your experience with ENT won't surprise many of us who post here. When it comes to T and H , there isn't much they can do or say. You do end up feeling let down though wondering where to turn next ! I am sure you are aware that there is a fact sheet on the BTA website which provides an overview to Hyperacusis and ways to treat it. I am about to start down the road of using WNG's from tomorrow in seeing if they will be to desensitise my ears and allow me to get back on with life as I am struggling to cope with everything sounding too loud at the moment . It seems little is known about Hyperacusis and how to deal with it. There are other websites and forums you could try and take some advice from. Good luck. I hope you find some help and effective treatment. If you do, let me know !!! 😉

in reply to Andy0708

Hi Andy

Thanks for the quick response, I think I will go back through the ent and see if I can get see a hearing therapist.

Thanks Andy

Ps two plates together would unbearable 👂

Andy0708 profile image
Andy0708 in reply to

All the best Gary. I hope you get sorted as quick as possible. Additionally, I know Micheal Leigh posts on here sometimes and he has some useful info regarding Hyperacusis as he has suffered from it in the past. You might want to pm him and he can send to you directly.

Lindsay6 profile image
Lindsay6 in reply to Andy0708

Good luck with the wng ☺

Seashore22 profile image
Seashore22 in reply to Andy0708

Hi Andy,

I hope you find the WNGs effective and find some relief. Are you going through the NHS for this as it doesn't seem to be available in a lot of areas. I was referred to Audiology and was advised that this treatment had been withdrawn but I did obtain 6 sessions of CBT. I have asked my GP for referral to a different hospital but he is not hopeful. Best wishes

Andy0708 profile image
Andy0708 in reply to Seashore22

Hi Seashore22

I have got hold of the WNG's through the NHS but I am not following a TRT program as they don't do that anymore. I've had them for 4 days now keeping the volume low. Too early to say whether they are helping or not. I sympathise completely with your predicament , it really does seem unfair that one person can get treatment yet another can't . I hope you can get some help for your Hyperacusis. I can deal with the tinnitus as it stands but this Hyperacusis is another beast entirely. I'm desperate to get it under control. How do you manage ?

Seashore22 profile image
Seashore22 in reply to Andy0708

I hope you find them helpful Andy and things improve for you , I think like many treatments is a postcode lottery. Yes I was also dealing with the Tinnitus but am finding it more and more reactive to different sounds and louder. The Hyperacusis to be honest am really struggling despite using a sound oasis machine and pink noise . I do find the noises soothing when ears feel full and tired. Quite a stressful time at moment though so not helping. Can you just use the WNG's yourself or are you having sessions alongside although not TRT?

Andy0708 profile image
Andy0708 in reply to Seashore22

I am about to start some CBT sessions through work . Hoping they will help me to mentally deal with this better than I have been. The WNG's I am using based on advice from the hearing therapist and from what I have read on various forums. I have pink noise passing through them at a low volume. It's early days but I am hopeful it will ease the sensitivity. Sorry to hear what you are going through. Keep pushing to see if you can get WNG's as it will give you hope. My tinnitus doesn't appear to be reactive so far but I fear that it will get like that. Keep going and stay positive.

Seashore22 profile image
Seashore22 in reply to Andy0708

Thank you for your kind comments, Good luck, Ihope they help. Yes It is so mentally draining and tiring. I have an appointment with my GP on Monday so hoping he has heard back from the different hospital I have asked for referral to. I am quite hopeful about the WNGs as on a windy day like today I find the wind in the trees a great distraction and soothing sound so I do think they would be of help.

Andy0708 profile image
Andy0708 in reply to Seashore22

If you do find noises such as wind in the trees soothing and restful then WNG's should certainly help you. Good luck on Monday !

Gwenda12 profile image
Gwenda12 in reply to Andy0708

What do you mean WNG? Is it short for something?

Gwenda12 profile image
Gwenda12 in reply to Gwenda12

White noise generator...duh😖

I've been using one for about a month, but didn't know them

as WNGs. Anyway, I've found that mine is working very well for me. I wear it all the time (except night time)and now only occasionally have difficulty with sounds. I have tinnitus as well. My audiologist has been very, very helpful.

Andy0708 profile image
Andy0708 in reply to Gwenda12

White Noise Generators. They are very similar in appearance to hearing aids but play a hissing sound into your ear canal. The idea is that they help you to habituate to your tinnitus & desensitize the effects of Hyperacusis.

Hi Garry,

You could have a chat to your doctor about if he /she could try you on Cinnarazine 15mg. It's mostly for Menieres and helps ear pressure and helps calm tinnitus down.

Another meds Nortryptaline.

Love glynis

Thanks you lot. I feel so by my self with this sometimes, god it's hard to deal with,

Thanks

Andy0708 profile image
Andy0708 in reply to

Remember you are NOT on your own trying to deal with this. It isn't easy but others are trying to get through this one day at a time just like you. No retreat , No surrender.

in reply to Andy0708

Hi Andy

Reassuring words mate, I'm sure this is making me stronger And a bit more caring to others as well.

Cheers

GDJTAM profile image
GDJTAM

I agree with my fellow sufferers, ENT should send you to an audio specialist that could help you calm the T down. If it's effecting your sleep then speak to your GP. The GP will put you on an anti depressant, I'm on Amitriptyline 36mg. I sleep much better now but you may find you will have to try different drugs to help you but persevere and you'll find one that suits you.

Good luck

Graham

NicBTA profile image
NicBTAPartner

Hearing therapists can help with hyperacusis as well as tinnitus - you can get a referral through ENT. You might want to check out our factsheet at tinnitus.org.uk/hyperacusis and don't forget our helpline is available M-F 9-5 on 0800 018 0527

Best wishes

Nic

Seashore22 profile image
Seashore22 in reply to NicBTA

Hi Nic,

I have really struggled to get a GP referral as my GP states I have already had enough referrals for Tinnitus and Hyperacusis . I've had two in the past 6 years. One at the beginning to ENT which was privately through my work policy where I only saw ENT and wasn't referred on to hearing therapy and the second one more recently under the NHS where I received 6 CBT sessions but was told WNG's no longer given . I have battled now to get a referral to a different hospital . I have an appointment on Monday with my GP so hoping this will be going ahead but he is not hopeful about treatment. I like many others find trying to get access to the correct treatment almost as much a struggle as Tinnitus and Hyperacusis itself.

Thank you far all your helpful advice

Best Wishes

NicBTA profile image
NicBTAPartner in reply to Seashore22

Do keep putting pressure on your GP. Sometimes its just that they are unaware of what services are offered, so don't realise where they can refer you to. We do keep information sheets on services offered, so if you would like more information to share with your GP, drop our helpline team a line on helpline@tinnitus.org.uk or call on 0800 018 0527.

Good luck!

Nic

Seashore22 profile image
Seashore22 in reply to NicBTA

Thanks for your helpful advice, I saw my GP today who has referred me to the Royal National Throat , Nose and Ear hospital in London but as I haven't yet heard anything he asked me to contact them. I called the hosp and after 6 weeks am told they haven't even received the referral!! I have contacted the surgery who said they will rerefer. I can relate to how a lot of people must feel, just so tired of all this to be honest.

NicBTA profile image
NicBTAPartner in reply to Seashore22

I hope that this re-referral has been successful - the team at RNTNE are excellent, there's lots of support not only from the audiology side, but also there's a specialist team of psychologists available

Seashore22 profile image
Seashore22 in reply to NicBTA

Thanks Nic and that's good to hear. I called the appointment team this morning to check if rereferral had been received and was advised it has and appointment booked for the 15/08! Letter was sent but I not received this. I'm very relieved things are moving though and hopefully can get access to treatment.

Best Wishes

NicBTA profile image
NicBTAPartner in reply to Seashore22

That's positive - let's hope everything keeps moving now and works out for you!

Seashore22 profile image
Seashore22 in reply to NicBTA

Thanks Nic, Best Wishes :)

Lindsay6 profile image
Lindsay6

Hi. Hope you have found comfort from the ideas and support in the previous replies. My tinnitus has developed in the same way as yours recently - today it's like bees competing with the echo of my own voice 😂 Always trying to be very positive, at least I have a valid excuse for not going to a Forst pre season friendly this evening ! Best of luck ☺

Lindsay6

Do think we started this T thing about the same time, if I remember rightly coming up three years about now.

I'm still not wanting to go see anyone, I think I'm still in denial, but the ideas and support does give comfort.

I will ring and make an appointment, I'm just putting it off lol.

Thanks for the post Lindsay, and best of luck to you to x

Seashore22 profile image
Seashore22

Hi Gary,

Sorry to hear you are experiencing this , I can relate to this and probably many more. I do hope you get access to the correct treatment. Best Wishes

WNG's what is this and how does it work ?

Sorry to be a thicky

Andy0708 profile image
Andy0708 in reply to

White Noise Generators. They are very similar to hearing aids but pass broadband noise into your ear canals to help mask against the tinnitus plus help to desensitize Hyperacusis. There is a lot of debate as to whether such an approach helps with Hyperacusis. Some people say it has helped them, others say no.

l guess anything is worth ago.

Thanks Andy

Sarah251 profile image
Sarah251

Hi Gary. Sorry to hear about your bad experiences with ENT. It won't surprise anyone on here with long term tinnitus though. I had white noise generators for a period and can't say they helped very much. However, you are correct that this is no longer a therapy available on the NHS - if you want to try if may be possible to purchase privately but is expensive and may not help much.

Highwycombe profile image
Highwycombe

Is your t in both ears or one I have this t in my head one ear with popping pressure when I stand I get a head rush pulses in head 8 months waiting time ent.3 years ago seen ent with hearing loss with t in left ear MRI found cyst but they said nothing to do with ear tinnitus will go on its own on still got t never went away now got it in head .

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