Hello - Newbie alert :-)

[SquealyEars]

Hi Everyone,

Getting very fed up with tinnitus in my right ear, so have decided to reach out to like-minded/eared people!

I'm early 40s (how did that happen?!) and have a hearing condition (Otosclerosis) - have done since early-mid 30s. Have had stapedectomy - on list for another one (Loooong wait so far). Wear moulded aids in both ears all day - need them, cannot get by without them these days.

The worst thing is the tinnitus at the moment though (very high pitched whistling). Night time is the worst, suppose because my hearing aids are out by then. I have tried wearing aid to bed and listening to white noise app through it and it does help but the aid is quite uncomfortable to fall asleep with.

I'm not really looking for a solution - more just to talk to people going through same thing. I try sometimes explaining what it is like to friends and family but like with so much in life, I think unless you've lived it, it is very hard to empathise/understand.

I am not often on social media type platforms, so apologies if I don't respond quickly. Just wanted to introduce myself.

Thanks for reading!

[perlcoder]

Hello,

This may not be very helpful, but it is at least a response from which you can see that there are those who share the problem (and I know there are many, some of them on this forum). I have had T for 20+ years, worsening considerably in the past 7. For me, nights are by far the worst - for the two obvious reasons that the quietness is the perfect environment for T to manifest, and that one desperately needs the sleep to recharge batteries for the next day's coping.

I have not found any psychological technique that helps, nor am I a fan of the "get up and walk around" school of thought. I would be walking marathons, and it is cold.

Some people find sleep bands (there are now several) and pillow speakers helpful. I don't, because the sound must be in my ear canal to defeat my reactive tinnitus.

Bose marketed some (very expensive) lie flat earbuds that were apparently comfortable and effective for many who tried them, but they were withdrawn before I could buy some due to technical problems - battery life I think. You might find youtubes and other reviews of alternative buds that help some - but those I have read are honest, and not sufficiently convincing to persuade me to invest.

Best wishes.

[GreyMerlin in reply to perlcoder]

Hey Perlcoder.

Just a quick follow up on the Bose point. I have had several pairs of their Sleepbuds - each pair eventually failed and were replaced by Bose. They were expensive but they have worked pretty well for me in masking T so I can sleep. Before Bose withdrew them (due to low take up) I bought an extra pair of reconditioned ones so I have gained some time before the two pairs I have eventually fail - which they will do at some point. You are right that they are expensive however as they are the only thing that will allow me to sleep I have dug deep to fund them.

On a positive note - three former Bose employees have bought the rights to the product and are currently developing/launching a different version (upgraded features and better reliability) under the name Ozlo Sleepbuds. They look like they will be pretty much the same thing to be honest. As I understand it they are launching via Kickstarter soon. One to watch out for maybe…….

Take care.

[perlcoder in reply to GreyMerlin]

Thank you GreyMerlin

That is very helpful. Although I have had T for so long, the Bose buds somehow passed me by until it was too late. I know that they would be ideal for me, and I would willingly spend the money. I had heard rumours of their return, but did not know about the ex-employees. If they open a waiting list, I will join.

Best wishes

[GreyMerlin in reply to perlcoder]

……in the meantime it might be worth trying to locate a pair of reconditioned Bose Sleepbuds if you can find them anywhere. I know Bose kept a reserve of them to send out as replacements for failed ones, but not sure if there are any still any kicking around anywhere.

I have joined the Ozlo mailing list, so fingers crossed…….🤞🏼

[perlcoder in reply to GreyMerlin]

Yes - and thanks again.

[SquealyEars in reply to perlcoder]

Thank you for your reply to my post. It really does help hearing from people that are experiencing the same thing. I have not considered the sleeping lie-flat ear buds and have found the info provided by yourself and GreyMerlin really useful and I will definitely be investigating. It is a shame these things cost so much usually but for a bit of shuteye and peace, I'd say they are worth it.

[Sonnybee]

Hi there. I too have a screaming right ear, and a diesel engine drone in my left. For me, bluetooth sleep headbands were a life saver. Much more comfortable in bed than ear buds. Plus you can still hear other sounds around you. I also find the various white, brown, violet etc noise apps never worked for me as they never quite match the frequency of my T. I listen to Art of Zen neuromodulation on YouTube, which is a series of beeps, mixed with natural outdoor sounds.The most important thing, however in my T journey, was realising how many avoidance measures I was taking in relation to T. Whether it be dietary changes, avoiding loud noise, stopping activities I loved doing etc. I soon realised that T does its own thing regardless. When it peaks, it peaks! All I was doing was making it MORE important. So eradicating all these behaviours was important, and I find i actually need sound therapy less and less. These are actually CBT fundamentals. Hope you find something here, and take care. We are with you.

[SquealyEars in reply to Sonnybee]

I really like your take on things and it does resonate - particularly the avoidant behaviours. The white noise works well for me - it is just the discomfort of hearing aid crammed in ear when trying to get off to sleep. Have had excellent advice here re:bluetooth headbands and BOSE reconditioned lie-flat ear buds. Really glad I joined this group Thank you!

[anna-c]

I am suffering the same, sometimes I wear the hearing aid to bed and it seems to help. I am trying self hypnosis at the moment as near end of tether, too soon to advise if working but looks promising, have had tinnitus almost 4 years now and driving me crazy. There's an app called mindear which was mentioned in the Times, its free but I think to unlock further information you need to subscribe. I am working way through the app to soon to tell if helping as doing self hypnosis too. Seems to be a lot of info on app without paying but I havent worked way through it yet

[SquealyEars in reply to anna-c]

Hi - thanks for your post. Sorry to hear you are struggling. It is actually maddening at times, isn't it - the fact that you have little control over these constant sounds in your head. Occasionally I will start to freak out inside my mind, telling myself I have to stop this noise but as soon as I do that I start to spiral to very unhappy place. Can I ask what self-hypnosis method/app/therapy you're using? I have done meditation and yoga for years and the breath-work and mindful thinking does help a lot but I can never tune completely out from the T. Wishing you loads of luck with the new app you're trying - if it proves to be a winner, let the group know as many others may want to try it out too Take Care

[anna-c in reply to SquealyEars]

Thank you for your kind response.I am reading self hypnosis easy as 1'2'3 by Joann Abrahamsen, unfortunately I have had a bit of a setback after the initial feeling I had hit on something but may be its just one step forward and 2 back. It's been a stressful 2 days work wise which I think has caused the spike but I know it will calm down. I have reached a point with the app where I need to subscribe, its not a huge amount of money but I am reluctant to throw money at something which may not help and at the moment after initially thinking it may help I have reservations, there's too many people out there cashing in on suffering and from what I see what helps one tinnitus sufferer doesn't help another, its a personal journey. So jury out at the moment.

I feel for everyone suffering with this and there's times you feel like you are losing control but we sort ourselves out don't we.

All the very best to you and everyone else out there struggling with this.

Will update if and when I have success with self hypnosis don't suppose it happens overnight.

Take care