Hello I’m 70 year old female who has had tinnitus for 6 months. I had it before that but my Widex hearing aids masked it. Now I can hear it while wearing the aids so it has got worse. I attended the Tinnitus hearing clinic in Stirling and we discussed Lenire. Anyone had any experience of this?
Also Starkey hearing aids with sounds matched to my tinnitus for habitation purpose. called desensitisation therapy. Again, I don’t know if anyone has experience of this. Both these treatments are 3.5K so really in a dilemma.
At the moment I’m using my Widex Zen which helps a bit. I also notice if I have a migraine tinnitus gets worse and then improves with some Sumatriptan.
Would be interested in your thoughts.
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Tinnituscrazy
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I am a little older and have had T of increasing severity for more than 20 years. I have no personal experience of Lenire, nor do I know personally anyone who has tried it. Anything I say is, therefore, entirely anecdotal and you could find the same information yourself on Youtube and various forums.
That said, I was as excited as anyone when I heard that Lenire was under development, and then when it was approved for use. I followed the blog(s) of people whose T was similar to my own, and those of sufferers with different degrees of the condition. Sadly, I have come across hardly anyone, in any category, whose T has been improved by Lenire, and some who feel that it became worse as a result of the treatment (which Lenire themselves accept is a possibility).
I hope that there are others on this forum with better experience / news, but so far as I can tell Lenire tends to be an expensive failure.
Thank you for taking the trouble to reply, much appreciated. I don’t think I will go with Lenire it is very expensive and may not work anyway. If I try the other form of treatment and it doesn’t work then at least I will have brand new hearing aids so I think that is my best bet. I am going to ask for preventative migraine treatment from my doctor to see if this will help.
I get very down about the whole business to be honest but trying to stay positive.
I didn't deal with the Hearing Aid point, - I should have mentioned it at least. The Starkey treatment is new to me. If the £3.5K includes continuing care / refinement from the audiologist who prescribes and fits them, then that may be in line with the cost of other aids prescribed privately with an uplift for the continuing care. If, on the other hand, this is essentially a glorified masker - well my new free NHS Phonak bluetooth aids are programmed to match the frequency of my T - a least so far as that is possible, because it can vary by the hour. By bluetooth I can connect them to my phone and listen to any of the many other masking / treatment sounds available free or at modest cost.
How did the audiologist match masking sound to tinnitus sound? Can you modify the masking sound yourself (not just volume) or do you have to go see audiologist?
The audiologist sits at a computer, with me in the new aids and asks me how close the white noise the aids are producing is to the subjective sound of my T, we go up and down until I say stop. Frankly neither in my current aids, nor in the previous one (one ear only), is the masking sound a very close match to my T, and my expectations are not very high. If the sound is in the same zone (if I can put it that way), as my T, and I can switch it on and off (as I can), to provide a noise over which I have control to compete with the T, over which I have no control, then that suffices for me.
My old aid had no volume control, with the new ones I can change the volume to an extent, just as I can (by the same buttons in a different mode), vary the amplification of the aid when the masker is not in use.
Any other changes would require the audiologist to reprogram that function. If, however, I choose to use the bluetooth to play a sound (or music or anything) from my cellphone, then I can have full control. I have mentioned here before that my favourite masker, which I tend to use when my T is very bad is the one at the following url, because even my reactive T can't track it. I have grown very fond of that weird sound, but it is definitely not to everyone's taste.
many people start their tinnitus journey feeling they have got to DO something. And indeed that could be the case, or it could be that quiet acceptance (which does take a while to achieve) is easiest, cheapest and longest lasting.
If you haven’t already, do go to the website of Tinnitus UK, the specialist charity. Lots of helpful information there.
You’ve been to a Tinnitus Clinic and this is a step further than many people are offered. Do you go back there? Or was it a one-off?
I’ve found my experience of tinnitus .. a long hard battle to find a solution. I’ve been to a few places to try and alleviate the problem. The Conclusion was I have a balance disorder.
I’m none the wiser now to when I first went. Nothing has changed. No further forward on the subject.
I would only go back if I decided to purchase the Lenire device or get the Starkey hearing aids so after reading all your replies have decided to hold off for the moment.
a balance disorder - that’s a new one on me! And I’ve been a member of this forum for about five years.
There is often no cause for tinnitus. More than one in ten of us has it. There isn’t a “cure” as such, though ways to alleviate any distress - see Tinnitus UK website.
It’s called vestibular balance disorder, I’ve just looked it up on google. I actually get a lot of bad balance issues. Anyway hello Happyrosie , How are you?
Aha yes - nothing to do with tinnitus as such. I misunderstood the description. The balance is indeed ears. The tinnitus FEELS as if it’s ears because you think you are hearing something that isn’t there. So as to speak.
All well here and enjoying the lovely weather! How are you?
I’m fine thanks. I have definitely habituated to mine , however if I get really tired I have to lay my head down but basically I’m coping really well. I know that your fine too as you’ve had yours many many years I think mine started in 2020 after my mother died
Hi TinnituscrazySorry to hear your dilemma, I'm 54 and lost my hearing in 1 ear and now have tinnitus, this happened overnight. Me and my husband spent the last year spending money/time on finding relief, which leaves me disheartened and upset after being given promises of help again and again. My last session of cbt was the most helpful, the lady told it me as it is, there is no cure, don't waste your money on the promises, guarantees of cures, promises of relief. When people are desperate there is always someone ready to cash in on your misery. It baffles me how these products are allowed to be marketed based on lies.
Sorry to be blunt, try anything if it makes you feel better that's great but don't expect any cure no matter how much money you spend or how many promises you are given.
I am 48 and problems started in lockdown. Hearing loss and HA. I can hear tinnitus despite and over HA. Not sure why, I have suspicions. I tried through private healthcare route trying finding some answers but only ended up spending money with no value.
I think T is worsening, I have suspicions as to what's going on, but I can't find confirmation/ answers from medical professionals I've seen. I was sent private for ent but the chap seemed disinterested at best. Seems he did what was standard and just the basics.
Still haven't been seen by ent on NHS. I've tried external maskers, they distract me at night when T bad but no good during day for me. HA I have are private and don't do masking, so can't comment. Have not tried any drugs for curing this. TBH seeing GP in my area is impossible (like most) and last time I did for t they really showed no idea/interest
I'm trying to accept it at the moment. Good and bad days (more bad than good right now).
Hello there, I am sorry you have not had very much luck. I didn’t have any care from the private doctor I saw in ent , he sat on the edge of his desk, just swinging his leg !!! looking bored …that was back in 2020. I am ok now and have just got used to everything…. I hope you feel better soon.
Hello, in the trials of Lenire the patients had to be under 30 and have had tinnitus for no more than five years. It was a tightly controlled trial. I think the results were worse than using maskers and having CBT. It’s very hard to find anyone online that has used Lenire and is now tinnitus free, and there is a small group on Facebook who’s tinnitus was made worse by Lenire, in some cases it doubled in volume. There’s a new device being developed in the US by Susan Shore, that sounds hopeful but it’s probably years away from coming to the UK, and it would be a private treatment.
My understanding is that tinnitus is now clinically known to come from the brain, not the ears 🤔. Hearing aids purely being issued to try and overcome the sounds…absolutely never worked for me. Told the alternative is litterally self teaching to ignore the sounds. Obviously that easy to say and not to do but it does make sense as mine can be pretty full on but if I am very busy or concentrating on something I do hear it far less.
I’m sorry, I haven’t got info on what you asked about. Hope you get some help.x
Do you have evidence for source of T? Ive not seen anything stating any single 'source', and would it explain things like tmj, pulsatile or somatic tinnitus? Be interesting if you have any sources of information.
hi there. Just to add a few things. I’ve had T for years on and off but it got much louder following a v stressful year. The things that work for me are meditation, listening to positive stories of people who have found relief or have learned to live with it - even using as an indicator as to how the body is generally.
I know for me that stress amplifies it but I also know it will subside to it’s ‘normal’ setting if I don’t home in on the T itself.
Exercise, gardening, being in natural environments, spending time with non negative people… all good. Check Julian Cowen Hills vids and app called Quieten. Incredibly valuable info from a caring person. Also Dr Ben /treble health on YouTube.
Yesterday my T was mad after too much driving and being in a city, and not eating properly. Today, almost not there…. I don’t think there is a Manuel as such and I don’t rate anything that E N T folk say as they don’t know much and tend to say: just live with it’ very damaging and cruel - there are ways but it takes time and knowing how your own body functions.
Thank you for posting !! Positivity and reading just what you went thru on your recent trip out to the city made me smile ! I too had very angry T after lots of exposure to city traffic and noise and some not so healthy food ! I had a good cry over it as well just cuz I realized how un habituated I really was to the T . Its easy to think you've got it when its quiet in the countryside and the loudest thing going is your rooster at 0330 ! Whew
It’s such an odd thing. Today it’s been almost not there again until I had a siesta then full on then did some audio editing on an audiobook and gone again…. Think it’s so much to do with one’s mental state…
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