My Tinnitus Seems Variable with External Sound?

[Dave Neale]

Hi Guys, I'm new to Tinnitus and also this forum.

Hello All ;-)

I'm a newbie and so obvioulsy I'm struggling at the moment.

I went deaf in my left ear in december on a night out (which I've come to terms with quite quickly - no problem), but what has been left behind is my challenge at the moment

I have tinnitus which in itself is pretty awful, but i have another bigger problem. My T seems to get louder in my deaf ear, when I hear sounds in my good ear, which is not only weird but totally annoying. This means that I cant go in to loud places, and I'm talking a cafe not a night club, without the Tinnitus going off the scale.

When at rest, like now it sounds like an electrical cable buzzing, but when it stirs up when I enter loud places, it sounds more like a jet engine

Has anyone else had this, and can it be habituated?

Please give me some good news, and tips

I have an ENT specialist booked in February but I'm in need of some encorougment

Thanks

Dave

 

[Jamclem]

Hi Dave,

Do you actually have T in your deaf or good ear? I am not sure if my case is similar. I just know that I have T (actually pulsilate tinnitus) in my right ear and if I am on the phone, I hear a buzzing from my left, which I assume to be my better ear.

I sometimes use http://generalfuzz.net/acrn/ to listen or a white noise app when I am feeling a bit frazzled.

Hope you feel better soon and get support from your ENT.

 

[Alue]

I recall someone on this forum mentioning that the tinnitus in their deaf ear reacts to noises in their hearing ear. I don't remember who it was, though.

 

[Dave Neale]

Thanks guys. I feel like I have 2 T's. One seems to be in my head, and only when i go to bed can i hear it in my right (good ear), but the T in my left (bad) ear also makes my ear feel "full" or pulsates a little when I hear noise in my good ear

 

[Lorac]

@Dave Neale , welcome!

With sudden sensorineural hearing loss, the normal protocol is steroid treatment and it is recommended to start the treatment asap in an effort to recover some hearing. I received steroids one month after sudden snhl but it was not successful.

I lost all hearing in my left ear too, in 2013. Like you, I have tinnitus in my deaf ear that increases when I am exposed to sounds in my good ear. I hear noise in my deaf ear with each sound in my good ear, even my own voice. ENT told me there is a place in the brain where sound is shared between the two ears.

My deaf ear never feels normal, just a constant sensation of fullness and heat. The good news is that it is not nearly as full and not as painful as it was three years ago. I think the level of noise has decreased too or I am better at ignoring it. I can tolerate being in a cafe or grocery store now without plugging my good ear to block the sound. I still avoid most really loud venues and I often allow my ears time to rest in silence.

I guess I have grown accustomed to experiencing sound in this way, with the reactiveness in my deaf ear. Each passing year brings me increased tolerance and happiness as my brain rewires. I hope time will help to heal you too.

If you just lost your hearing in December, then you are doing quite well emotionally. I had a harder time accepting the loss in the beginning. Was your hearing loss caused by noise exposure?

 

[Dave Neale]

@Lorac Thanks for your response, I was worried that it was tied up in my brain. My Tinnitus was caused by a "stroke" in my brain, which starved the cochlear of oxygen (I have been told at my initial ENT meeting) and then sent me deaf in the left ear. I didnt go to Accident & emergency since the week before I had been told that I had Labyrinthitis by a GP since I was having dizzy spells. I read up on Labyrinthitus, and temporary deafness and temporary tinnitus were the symptoms. therefore I sat it through, thinking it would just come back. Big mistake, I should have gone straight to Hospital for steroids. May not have helped but may have. Oh well, gutted, but dont know for sure.

When I say I have come to terms with the deafness, I mean if I had the choice of deafness or tinnitus, then i would chose deafness 100% (on one ear). I would also be happy with a simple Tinnitus, which i could mask with music or white noise, but my T gets louder with noise.

I was thinking about a cochlear implant in the affected ear (although this is very expensive and not covered on the NHS for Unilateral deafness), to reduce or remove the T. Have you considered this, or are you hoping that the brain will rewire itself. Also have you tried other types of habituation, like TRT, CBT sound therapy etc.

Its comforting to know that you have become more accustomed to it over time. I keep forcing myself to visit cafes, and bars etc even though it is noisy in order to try and reprogramme the brain to ignore the noise

Once again thanks for any comments.

 

[Lorac]

@Dave Neale ,
I live in the U.S. and insurance does not cover costs of cochlear implant here unless there is severe hearing loss in both ears. I know that some respond well to implants but others do not so I, personally, would not be willing to foot the bill for a CI. I have tested twice for hearing aids but not with good results. My audiologist recently allowed me to sample the Cros aid for a week and I hated it. I actually had more trouble hearing conversations with the aid than without it because it amplified the reactive tinnitus. I had an initial consultation for TRT but my deaf ear just reacted like crazy to it so I did not opt in. Some of these things might work for you but they did not work for me. The only doctor who helped me was a psychologist.
I agree that the reactive tinnitus (hyperacusis?) is more problematic than the hearing loss. I am most disturbed by the aural fullness and burning sensation in my deaf ear. Even though the pain has decreased since 2013, the constant discomfort is still very hard to ignore.
I avoid bars unless they are not crowded and don't have live music. I am okay with restaurants now, in spite of the vacuum cleaner noise going on in my deaf ear. I remain optimistic that there will be more rewiring and more improvement as time goes on. I choose to cope and hope.

 

[Dave Neale]

@Lorac
I too am looking at a CROS, and am trialing a CROS hearing aid at the moment, but again its making more noise in my good ear which in turn creates more T in the bad ear. Grr. Otherwise I quite liked it. Currently I am slowly trying to integrate my hearing back to loud noises. I sat in a bar with my wife on Saturday, and although the noise was loud, it was bearable. I'm hoping that this gets more and more bearable, and quieter and quieter.

I'm pleased that you can sit in restaurants now, and am looking forward to that one day. With regard to the CI, although a lot of the reports say its good for Tinnitus, I've also read people saying that it creates new T, which I could do without.

Thanks for your response and I'm now looking forward to a slow recovery. I have set aside 2 years minimum

 

[Lorac]

@Dave Neale ,
My husband and I have a favorite restaurant that we patronize regularly . It has a quiet dining area on one side and a fun bar area on the other. My husband is very outgoing and social and he prefers the bar area but he understands that I can be overwhelmed by the noise there. We always sit in the dining area on weekends when the bar is packed and noisy but we sometimes choose the bar area if we go on a weeknight when the bar is not crowded. To me, it's all about balance. My deaf ear reacts badly to every external sound so my comfort zone is absolute silence, but living like a complete hermit is painful in a different way and I want to be there for my family and friends. I just have to choose wisely and don't go as often, don't stay as long, etc. I can deal with the reactive noise, just makes it harder to hear in social situations. It is the reactive discomfort that is more troubling for me.
You may find that you are able to habituate in less than two years as you do not seem as anxious or depressed as I was in the early stages. Accepting the hearing loss was a major hurdle for me. I think you are doing really well at this stage of the game but I would caution you to seek balance, give your ears rest time and protect your one good ear. Good luck going forward!

 

[Dave Neale]

@Lorac I am very low at the moment, and my doctor has put me on anti depressants as a short term solution. I feel better and am sleeping. I have an ENT appointment soon which will shed some light on things. I'm now trying to look forward to small wins and little achievements. I read that some people habituate fog horn style T, so there's hope for us all. I'll be honest, a 20pc reduction in noise etc would make the world of difference. So here goes on my mini campaign against tinnitus. Good luck with yours. My plan is to be better by my 50th when we take the kids on a Californian road trip in 2 years. Yeehah

 

[Lorac]

@Dave Neale ,
Good luck with your ENT appointment and keep us posted about your wins and achievements. They will come. I was unwilling to travel during my first year with T and H but we are making plans to go up north with kids and grandkids this summer to Mackinac Island and I am really looking forward to it! I am so grateful that my children and grandchildren are healthy and happy (and tinnitus free). My life is not as easy as it used to be but my life is good! Hang in there Dave.

 

[Dave Neale]

Following my ENT visit, he annoyed me saying that the GP that I saw should have offered me steroids. I've been told this by 2 people now after the event. Great. Too late!!

He has offered a trial of Baha, but it looks really serious, and I'm not sure that it will help.

He has also recomended that I visit an NHS balance specialist and a Tinnitus specialist, and so will update you again when and if i Know anymore

 

[GregCA]

Following my ENT visit, he annoyed me saying that the GP that I saw should have offered me steroids. I've been told this by 2 people now after the event. Great. Too late!!

He has offered a trial of Baha, but it looks really serious, and I'm not sure that it will help.

Wow you really don't seem to be in very good hands.

If you truly have Sudden SensoriNeural Hearing Loss, then steroids is indeed the common treatment and should be administered asap - it's a shame they didn't offer it to you, but you could still try an intratympanic injection of steroids as you are still in the 2 month window (which is closing fast).

I don't understand why he'd suggest a BAHA, since it's a bone anchored hearing aid that helps you when you have conductive hearing loss. In your case, your losses are sensorineural. That means you have measured losses when the sounds are transmitted through the buzzer that was attached either to your forehead or the temporal bone behind the ear, which is essentially what a BAHA would be doing. So that suggestion is perplexing.

 

[Dave Neale]

@GregCA I have seen 2 specialists since the first 2 weeks, and they have told me the window is 48 hrs to a week max. I havent heard of a 2 month window. Also the Baha would conduct the hearing across to the the right ear, and play the sounds through the good ear

 

[GregCA]

I have seen 2 specialists since the first 2 weeks, and they have told me the window is 48 hrs to a week max.

Yes and I clearly question your "specialists" - see here, and here... The sooner the better of course, but even if the chances are slim at 2 months, you may still want to take that small chance. I know I did (and got the injection).

Also the Baha would conduct the hearing across to the the right ear, and play the sounds through the good ear

Sounds like a CROS hearing aid...

 

[Lorac]

My GP misdiagnosed my condition and told me to take Claritan. Her diagnosis was middle ear effusion but it was actually sudden sensorineural hearing loss. When I asked if I should be referred to an ENT, she told me to wait a month and I stupidly followed her advice. I'm not angry at myself any longer and I am not angry with that GP now but I did find a new GP. The ENT tried prednisone but it did no good. I do not know if the prednisone outcome would have been better if I had gotten to the ENT sooner. ENT also suggested a baha for my sensorineural loss and so the audiologist at his office used a simulator to find out if I was a good candidate for the baha but I was not. My ability to hear actually decreased using the baha simulator and I really appreciate the fact that she did not try to steer me toward an expensive operation that would not have helped me.

 

[Dave Neale]

I saw 2 separate Gp's in a week. Annoyingly neither of them suggested steroids. One said it was menieres which it clearly wasn't, and the other said it was a tumour and referred me to get an MRI. I'm gutted that I didn't go to a&e since they may have referred me to an ent quicker. I'm left with the remains of tinnitus and deafness, gutted.
The latest specialist has suggested that I trial the baha band, before the cros. I'm not sure that I want the device on my head. I would also have a screw which would need to be maintained I guess as well
I'm slowly improving each day, but the fact my T gets louder when I listen through my good ear is tough. Although it's not bugging me as much as it did on day one, so every cloud has a silver lining

 

[Lorac]

@Dave Neale ,
I don't harbor any anger towards my ex GP. I just don't want to carry that feeling around for the rest of my life. It took me awhile to get there but I think it is healthier for me to let the anger go. I was angrier at the ENT who told me to learn to live with tinnitus but did not give me any tools to help me learn to live with it! If I had lost my arm or leg instead of my hearing, I believe I would have received immediate physical therapy, occupational therapy, etc and my health insurance would have picked up the tab.
I think you should test for both the baha and the cros before making any decisions. You should be allowed the opportunity to compare. I hope one of the devices will help you. Best of luck and keep us posted.

 

[Vinnitus]

I recall someone on this forum mentioning that the tinnitus in their deaf ear reacts to noises in their hearing ear. I don't remember who it was, though.

That is interesting. Considering sound input at certain frequencies is usually bilateral, the phenomenon described as "reactive tinnitus" might perhaps be caused by lack of bilateral input for certain frequencies at certain volume levels. I have noticed with myself; if I administer white noise to both ears, I get an overtone "hiss" type of tinnitus with it. Perhaps this is because the white noise spans the whole spectrum from 20Hz to 20kHz and my left ear fails to provide sound at low volume at places between 13 and 14kHz. The other ear however can still provide these sounds at low volume, so there you have a one-sided gap of missing information. The brain and/or neurons perhaps cannot make sense of this and seems to respond to the sound with a sound resembling "reactive tinnitus".

It would be interesting to know in what kind of people "reactive tinnitus" seems to take place. Are these for example only people with a "gap-like" (so between certain frequencies, not at the end of the hearing spectrum) asymmetric (unilateral) hearing loss for certain volumes at certain frequencies?

Problem is that our current audiometric measuring equipment is most probably too crude for such precise measurements.

 

[reinergirl]

I think I experience something like this "reactive tinnitus". My T is relatively quiet, however it seems to react to certain noises and as the noise is made it gets louder but immediately quiets. Voices on TV are the most obvious, although sometimes just walking down the tiled hallway in my house does it. At one point clicking my mouse did it, closing cupboards doors in the kitchen and typing sometimes does it....a lot of that has faded away although the TV is still annoying. Pretty hard to distract your mind from the T when it seems to dance on every word. Loud noises have no effect on it, only little ones. I have an appt with a TRT trained Audiologist in my area in a few weeks, so hopefully I'll get some answers or explanation. I've just had T since Dec 2016 so hoping I'll be told that it will fade away eventually. I have no hearing loss, a ring in both ears(mostly the right) and a "white noise" in my left ear. I am being treated for TMJ by a specialist who says the ringing hangs on the longest....hope shes right

 

[Zug]

Hi Guys, I'm new to Tinnitus and also this forum.

Hello All ;-)

I'm a newbie and so obvioulsy I'm struggling at the moment.

I went deaf in my left ear in december on a night out (which I've come to terms with quite quickly - no problem), but what has been left behind is my challenge at the moment

I have tinnitus which in itself is pretty awful, but i have another bigger problem. My T seems to get louder in my deaf ear, when I hear sounds in my good ear, which is not only weird but totally annoying. This means that I cant go in to loud places, and I'm talking a cafe not a night club, without the Tinnitus going off the scale.

When at rest, like now it sounds like an electrical cable buzzing, but when it stirs up when I enter loud places, it sounds more like a jet engine

Has anyone else had this, and can it be habituated?

Please give me some good news, and tips

I have an ENT specialist booked in February but I'm in need of some encorougment

Thanks

Dave

Hey @Dave Neale, my Tinnitus changed a lot in the first few months. It's a strange and slow evolving condition, so keep in mind that you may still be in the early stages of this and it may improve. I know a person who's deaf on one ear and I'm always under the impression that she's better habituated than me.

Best,
Zug

 

[Applejuice]

@Zug
What changes did you notice?

@Dave Neale
I'm sorry to hear it. We who got the T are often left in the dark by professionals. They probably just don't understand it and have little knowledge about it. I hope that you'll get over the grudge etc. A lot of us blame someone, most noteably ourselves, for this condition. It might be true but it won't get you anywhere.

My T is also reactive. Last week it responded to a fridge buzz. It is weird but that is what our ears do.

 

[Dave Neale]

Hi Guys, I haven't been on the forum for a few weeks. Things have certainly improved, although I must admit the sound is exactly the same, and the reactive T is still reactive. The reason things have improved is that I have changed how I perceive the T. It still blows up in cafes, pubs gatherings, but I try and ignore it, and that sort of works. I have been told by so many people, websites etc to stop searching for a cure, or reading posts online, since it generally makes things worse.
I ended up printing off around 3 - 5 "Positive" stories off this forum. The reason I did this is because, if i read a nice uplifting story on the forum, somewhere in the trail I'd get "my tinnitus is ruining my life, its ok for you" type comments which ruined the positivity etc, and so by printing the stories out i could filter the negative comments.

If i was at a 1/10, my life is ruined, and I can't continue, I'm possibly at a 4/10, so not a total return to form, but its now been 6 months, and I can only see that as a massive step in the right direction.

My tinnitus is bearable when things are quiet, and sounds like white noise crossed with crickets. When I go in to a public spaces it shoots up. Strangely single loud voices are the worst and running / flushing water, which really affects me, and most annoying is that my mother is going deaf and she always shouts, which is also very difficult.

I hope that I am on the path to habituation, there are definitely moments when I don't notice it, they are few are far between, but do happen.

I'm hoping that in another 6 months, if i make this kind of recovery again, I may get to a 5 or a 6 out of 10. I will never be a 10, since I'm deaf in my one ear, but if I was to get to 7 or an 8 at some point in the next 2 - 3 years it would be a minor miracle.

The success stories REALLY helped. One guy wrote about his T driving him to consider the S-Word, and if I'm honest I did too. Me and my wife had a few days of horrible conversations, and tears, but now that's behind me.

I'd never consider that as an option now, which is already a huge step forward. In fact one of my friends went through a messy divorce whilst I've been suffering with my T, and took his own life 3 weeks ago. WOW that brought home how important life is, even with T.

Massive thanks also go out to people who respond because its nice to know we aren't on our own suffering, but other people can get on and deal with it. That has helped me to adjust

Thanks