Looking for recommendations for private tinnit... - Tinnitus UK

Tinnitus UK

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Looking for recommendations for private tinnitus treatment please.

hollyhock0 profile image
19 Replies

I have high-pitched ringing, permanent tinnitus and slight hearing loss in the same ear. The other ear has a slight ringing noise. It began 2 years ago following an extremely stressful period in my working and personal life (loss of job and bereavement). I have seen my GP 2 or 3 times. I have also seen an audiologist, physiotherapist and consultant at my local NHS hospital. I have had an MRI (because the problem is in one ear only), and thankfully this proved negative. While I am very grateful for all these appointments, it was a long wait to get them and they were over in minutes. The consultant, without really engaging with me, said that the cause was an episode of labyrinthitis that I had 10-15 years ago. Both he and the physio told me clearly that it would not get better. I am managing as best I can. But sometimes, particularly if I am tired, congested, stressed or in quiet places - the ringing is incredibly loud. Certain noises also 'hurt', eg. whistling, banging plates, anything sudden and loud. I am also mis-hearing/not hearing certain words people say, eg. partner, shop assistants, TV etc. I am beginning to dread going anywhere where there is background music or that is 'echoey', as I struggle to tune in. I am doing some p/t, temporary work but need to do more, and am hoping for a career change (previous career was in classroom teaching - my ear could not now cope with the demands that come with this). In researching how to cope/live with tinnitus, mindfulness is often suggested. I have done this for years, prior to the diagnosis. I do not find it difficult to relax when I need to, but find that mindful practice doesn't help my tinnitus at all. I have tried apps and mined YouTube for sounds, and tried various water, wind, coloured noise - but nothing hits the mark. I've also been taking gingko biloba for the last 3 months. I would like to spend time with a specialist who can really talk through my condition, and begin a course of treatment to lessen the noise (I accept it won't go away completely). I want to improve my quality of life and pursue a career that I can realistically cope with. I'd be grateful for suggestions of private clinics and treatments that have been positive. For example, has anyone used an 'ear bud' or sound treatment that has worked well for you? Sorry, for the long post! I am completely at a loss now, and don't want to throw money away. Thanks.

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hollyhock0
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19 Replies
prf1 profile image
prf1

I am very sorry to hear of your discomfort and experiences with tinnitus, it is a distressing and little understood condition. My own experience started 3 years ago with profound tinnitus in both ears followed quite quickly with rapid hearing loss and a diagnosis of Ménière’s disease which is awful. Eventual treatment for the Ménière’s was the destruction of the inner ear resulting in total deafness but still loud tinnitus.

I have tried many treatments including various drugs, mindfulness and consultations with top consultants. Sadly I have concluded that there is no magic cure and you just have to learn to live with it.

I do think that hearing aids help a little and keeping busy and distracted is also useful. I find that if I am busy I don’t notice the tinnitus.

I hope this helps and good luck with it.

Paul

hollyhock0 profile image
hollyhock0 in reply toprf1

Sorry to hear about your issues too. Sounds like an ordeal of the first order. I hope you’re feeling better these days. I’m just learning about all this. Hearing aids are the most common suggestion - I’ll look into this. Thank you. With best wishes.

Judyspal profile image
Judyspal

To be perfectly honest with you,I would keep your money in your pocket,and as prf1 says just learn to live with it ,give white noise apps a chance,and keep busy ,I've had tinntitus since an incident at work,you have to listen to the white noise which should be just below the volume of the tinntitus to try to retrain the brain into thinking it's a normal noise and I still struggle with it but at least give it another longer chance.

Good luck

I'd go back to my GP & ask for an urgent referral to a tinnitus clinic at hospital.

Urgent because this is clearly causing you distress & affecting your mental health (stress).

Also: do you have *any* hearing loss? If so ask them to consider hearing aids when you see them. I know everyone's different but they helped me significantly & I now manage my tinnitus, rather than it control me.

I'd recommend you try those again before spending your own £.

hollyhock0 profile image
hollyhock0 in reply to

Going to go back to my GP. Thanks mkcol.

cjb2 profile image
cjb2

I have read that Tinnitus sufferers are also deficient in many of the B vitamins such as B1, B3 and B12 and also in Zinc and Magnesium which boost the immune system. I have increased my intake of these and do not know if it is a coincidence or not but the symptoms ease as soon as I get up. It might be an idea to reduce salt, sugar and saturated fat intake as this reduces blood pressure. Reducing these also cuts the risk of contracting type 2 diabetes as well where a side effect of this is also tinnitus and regular exercise also helps.

Although I am only speculating on this and don't know if this works or not, if anything is pressing on the auditory nerve between the cochlea and the brain then this could create an electrical signal that we hear as a single tone sound. If there are blood vessels running adjacent to the auidtory nerve then the pressure from the blood vessel could in theory be reduced and thus lower the volume of the Tinnitus sound. Also, make sure that you keep your Eustacian tubes clear and use a hot compress against the ear to soften up any catarrh that could form.

It might also be worth investing in a Tinnitus Sound Relief Pillow (I got mine from Hearing Direct) where this has an audio jack on it and can be plugged in MP3 players, etc. Also, it can be used to play sound relief therapy which masks Tinnitus during the night. The best way to manage Tinnitus is to take your mind off of it and the brain does ignore it.

Woodentop99 profile image
Woodentop99

Save your hard earned dosh,believe me there are numerous people out there claiming to have the “ cure” etc,hoping to relieve you of £1000s,,,as previous back to gp,my case following an appointment with my local ent then audiologist who specialise in the big T ( I appreciate not all authority’s have this) but go to the nearest possible one.If I had not seen this guy who sorted a pair of hearing aids/ maskers free on the nhs,I would not be writing this I was that desperate I wanted “out” and would be pushing up daiseys now,honest,no joke,I was that bad,please don’t go to the “dark place” I was so fortunate to get out of there,best wishes.

hollyhock0 profile image
hollyhock0

Thanks for all the advice. It does seem like a minefield! cjb2 coincidentally I’ve just started taking B12 complex vitamins for a different reason, so I’ll see if there are any changes in time. I also sometimes use a earphone/headband if I have trouble sleeping. Woodentop99, I was told by the ENT specialist that I didn’t qualify for hearing aids, because my hearing loss isn’t bad enough... I live in a rural area, and am not sure where else I can go. I’m glad you’ve been able to get some relief. I’m hearing quite a bit about Neurorod in Dublin and would be interested to learn more about that. Yes, being busy and distracted does help. I have learned to live with it to some extent, but I’m worried that it’ll get worse. I also like doing quiet things, eg. reading, so it’s pretty testing. The current hot weather and humidity, seems to have increased my T too. Glad to have found this forum. Thank you all.

hollyhock0 profile image
hollyhock0

Oh - I would also be interested to hear if anyone knows anything about the ‘Tinnitus Clinic’? They have branches situated in London, Bristol, Leeds and some other UK cities.

Woodentop99 profile image
Woodentop99

Just to clarify, I was given aids purely because of my tinnitus, I only have minimal hearing loss, if it were just for that, correct , I don’t qualify, but I guess having a specialist in T in audiology I am lucky,good luck in your quest as I feel you are committed to finding a cure or some respite, we all are, but please don’t think the private route is better, been there and done it, like most of us on here have.

hollyhock0 profile image
hollyhock0 in reply toWoodentop99

Fortunate that you have a T specialist. I’m clueless about hearing aids. What do they look like please? Small/large? Are they ear buds inserted into the ear only, or do they wrap around the outer ear as well? I think I may return to my GP and ask for more help. Thanks.

Woodentop99 profile image
Woodentop99

Ok, I believe that different authority’s use different aids, only because of the posts I have read on here, mine are called , oticon, hardly noticeable when in your ear( google them), they have a very small rocker switch on, they have x4 settings, number 1 is purely hearing aid, and 2/3/4 are what we call “ maskers” they give out a noise which is supposed to lessen your T, though think of it like this,, “ it’s just one noise replacing another!!” Or this noise(s) is much more easy to tolerate, they have a volume + and - and the batteries are replaced roughly once a week they come included, I have to sleep in mine but I think 99% of folk do not.Icould not sleep without mine as T is far to loud!!!.I have had these since November when I was “gripped “ with fear and anxiety and I wanted “out” however I was extremely lucky with support of family, brilliant gp, counseling, a brilliant audiologistand latterly finding this site, I couldn’t stop fiddling with them and 99.9% of my day was hooked on these aids , fiddle, fiddle, fiddle, however slowly but surely things changed, and now it’s completely the opposite % wise, during day I hardly notice them, though it’s not that easy it takes time but I guarantee you will get there,,stick with it and be pushy regarding referral as gp, well most of just don’t understand T they might not admit it, but if they can get you out of their hair so to speak they will refer you on,,,as regards to neuromod just keep an eye out on here for bta’s take on it please don’t expect miracles here but anything positive is a bonus.

hollyhock0 profile image
hollyhock0

So grateful for your detailed response - thank you so much. GP next, and be pushy... Glad to hear you’re in a more positive place nowadays. I didn’t know T was such a ‘thing’ until I came on this site! All the best to you.

1Dar profile image
1Dar

Hello .. I have just read your message and can relate so much to what you are going through. I actually did message you this morning , but thought I would respond again to you. Also happy to private message if you want to.

I think you are going through a similar journey to me , I live in Australia though and can’t really help you with audiologists and ENTs . I had a grommet put in my ear 3 years ago and woke up with awful tinnitus. I then had the grommet removed and put back in 3 times. Each time causing the ringing to ramp up. I then had a stapadectomy, that did nothing but cause pain , then I had a cochlear implant put in. After a year I had it taken out though as I had so much pain. I now have a cochlear implant which does mask the tinnitus to a certain degree. I have tried absolutely everything from ginkgo tablets, to meditation to mindfulness ... but nothing seemed to have worked ... so I just take each day as it comes and avoid loud places and people! I have a very good audiologist ,, but have had a lot of pain due to all the surgeries. I hope this makes you feel better, as sometimes I do feel like I’m alone in the suffering which I know I’m not. I have retired from teaching now which is fine,

I hope you can find some answers, I was out of the forum for awhile , but have just joined it again. Have you had any success in the past couple of months ? I hope so. I use Bose ear buds for sleeping at night along with a good glass of wine ! I have always got some sort of noise in the back ground.

All the best! Jenny

1Dar profile image
1Dar

Hi ... for some reason .. I can’t read your message which you sent a couple of hours ago... I think it’s a problem from my end. Can you please send it again. I’m hoping I was able to help you... strangely I have had a pretty bad day today. Thanks !

hollyhock0 profile image
hollyhock0 in reply to1Dar

You should be able to see it on the public pages. Maybe log off and log back in?

hollyhock0 profile image
hollyhock0 in reply to1Dar

Hi again - I’ve just checked and can see I replied to your message that you put on the ‘Tinnitus and Work’ thread. You should find it there. I’ve had a full on day (not T related) so have just pieced this together! Hope you’re coping okay :)

1Dar profile image
1Dar

Hi.. I’m not very computer savvy I’m sorry! I can’t find your message ... but will keep trying. If you want to private message on Messenger that would be okay with me , having a tough few days .. but just trying to get on with things !

Paulbrighton profile image
Paulbrighton

Hi. I went to the tinnitus clinic in Harley Street and had two maskers (small heating aids) fitted and wear a headband at night playing purple noise that was set up by the consultant. This has really helped me and I’m much more relaxed about the tinnitus now. I keep forgetting to put the maskers in and before the tinnitus was really driving me bonkers.

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