First Year with Tinnitus Over — Seeking Advice for Next Year

[streeter1985]

Hello,

I hope I am at the right place with my thread it's a combination between an introduction of my health issues and what advice you got for me for the next year with my tinnitus.

I have tinnitus since one year now after a hearing loss that made me nearly deaf at 4 kHz and up in my left ear. 4 kHz sounds pretty distorted already at 30 dB. I don't wear a hearing aid because I can't see any benefit. My audiogram looks like a scalpel cut my ear at that frequency. A cochlea implant is no solution as I hear perfect until 4 kHz - that's not worth it.

My left side of the face feels uptight/numb like it needs a massage...don't know what it is maybe the tinnitus affects my face muscles. I had a swollen outer ear canal and crusts over 3 months on my eardrum the ENTs didn't know why. I just got cortisone.

After a wrong diagnosis from the first ENT, who maybe would have been able to at least give me cortisone, I had after one month a very mild tinnitus. After 3 months and 4 cortisone therapies later I got my first middle ear cortisone injection over 3 weeks and at that time my tinnitus got louder and stayed loud. You see life hit me like it wanted to kill me.

Really checked everything. The first thought was otosclerosis because I have a 40 dB gap at around 4 kHz and up but we found out that it's audio device related and otosclerosis starts with a gap in lower frequencies...well you guys know you try everything....you think that can't be true!

Sometimes I feel life is over...I still can't put myself in a position where I can say it's fun again. I also have to say I don't work on me or test different things to see if my tinnitus gets down. Don't take any special pills etc. Maybe I have to search for such things. Right now I just search on treatments in the future. I was on vacation and the tinnitus was there but didn't bother me a lot it was always action around me like you don't watch the time and you are shocked it's already evening. It would be nice to have a life like this but you all know we have to work too and normal everyday problems to solve.

What I wanted to ask you is can the tinnitus still change after one year? I know it's a long time. It feels so loud now that I sometimes think my hearing also got worse and no way to cover it with sound. I'm nearly deaf at 4 kHz - I can't play any sound that loud

Did you as tinnitus veteran tried to habituate by not listing to it by concentrating on something different. Sometimes that works for me but I always fall back like it's an alarm behind me that I wanna look at, I mean that's natural. I hope so much that my brain just gets bored of the tinnitus.

Any advice for me? I don't wanna lie to myself that it doesn't bother me...should I lie to myself? Is that the answer to habituate...what advice for the next year?

Thank you for your time

 

[Wolfears]

I don't really have much of an answer, except that you should never lie to yourself.
By doing so, you would be basically building a house of cards that can collapse in a spectacular fashion at any time.
This is not just for Tinnitus, but everything else in general...always be honest with yourself, even if it's bad.

 

[GregCA]

Really checked everything. The first thought was otosclerosis because I have a 40 dB gap at around 4 kHz and up but we found out that it's audio device related and otosclerosis starts with a gap in lower frequencies...well you guys know you try everything....you think that can't be true!

What do you mean you found out "it's audio device related"?

You should know otosclerosis sometimes presents with very weird audiograms (in my case it started showing as pure sensorineural losses).

If I were you, I'd do a few tests related to otosclerosis. I'd ask my doctors about: fork tests (Webber, Rinne), Schwarz sign, Carhart notch, stapedial reflex, and I'd probably ask for a CT scan and show it around to at least 3 independent doctors (show the images, not the radiologist's conclusion: you want the doctors to make their own interpretation of the images - ask me how I know).

Don't get the impression that I believe you have otosclerosis. I don't know, but it does behoove you to dig and explore, either to rule out or to narrow down.

What I wanted to ask you is can the tinnitus still change after one year? I know it's a long time. It feels so loud now that I sometimes think my hearing also got worse and no way to cover it with sound. I'm nearly deaf at 4 kHz - I can't play any sound that loud

Since you have a AB gap at 4 kHz, you could use bone conduction headphones to bypass the gap. Does your bone conduction look good overall (at other frequencies)?

 

[streeter1985]

What do you mean you found out "it's audio device related"?

The ladies at the ENTs office did not know that the device cant go up 55db on the bone conduction that formed my gap. Also some ENTs did not know that. I dont know if other countries have better devices but I also read that measuring with bone conduction over 4khz is useless. I hear pretty well at low frequencies and that made it possible that I heard sound differences when the sound gets louder. You know the sound wave on instable high frequency tones can make additional sounds at other frequencies too.

If I were you, I'd do a few tests related to otosclerosis.

I did all these tests already. Also 3 CT scans etc. When I tried to get a hearing aid the lady never saw something like that gap before.

Since you have a AB gap at 4 kHz, you could use bone conduction headphones

Yeah I bought some and tried them but its strange to hear normal on the right ear and over bone on the left Bone conduction is fine. I add my audiograms so you can see what I mean. And its not otosclerosis for sure there is no ENT I did not ask (private and insurance covered) no CT I missed - payed a lot because it was not covered. Its just audio device related gap and this 4 audiograms show 3 different ENT/hospital locations. Thats why I really can say that many diagnosis dont keep in mind the technical device limits. As you can see in the first audiogram I even go up again at the bone conduction as I said the higher the frequency the more additional frequencies it can produce over bone. Its a problem just an unsolved problem from a lack of knowledge.

I have to add I hear on air and bone distorted sounds at 4khz and up so I dont think acutally that I hear in that area anything. I just hear the additional sounds an electrical device produces at high frequencies when it fires 80db+ over headphones in your ear

A deaf person can also "hear" sound in an audiogram because he feels the vibrations.

 

[streeter1985]

Here something I wanna add about measuring in audiograms and dangerous otosclerosis diagnosis:

https://www.audiologyonline.com/ask-the-experts/limitations-in-high-frequency-bone-265

So everything you measure with bone conduction in an audiogram can be wrong around 4khz and up. Thats so immense and really noone pays any attention on that when they make diagnosis.

@Contrast thats something for you I saw you also dont like audiograms

 

[GregCA]

So everything you measure with bone conduction in an audiogram can be wrong around 4khz and up. Thats so immense and really noone pays any attention on that when they make diagnosis.

Yes, we do know that bone conduction testing at high frequencies is unreliable: I don't know of any doctor that would diagnose otosclerosis on that alone.

Have you tried hearing aids to boost high frequencies?

 

[streeter1985]

Have you tried hearing aids to boost high frequencies?

Yes, but I hear everything distorted at the damaged area so its useless and doesnt give any benefit. So I think somewhere between 4khz and 5khz I begin to be deaf.

I tried the new Siemens hearing aid. Cant remember the name right now...tried it for 2 months. Only sounds I get when something hits the damaged frequencies are "schshshshhchhhhhh"

 

[streeter1985]

Did your hearing loss started at high frequencies? I mean the ENTs always asked me if I was near loud explosions etc. military and stuff like that. I never heard that otosclerosis can start as high frequency hearing loss with gap. I only know of crusts on eardrums or ear canal problems etc.

 

[GregCA]

Did your hearing loss started at high frequencies?

No, my initial audiogram showed about 30-35 dB sensorineural losses pretty much across all frequencies (no Air-Bone gap).

 

[coffee_girl]

...should I lie to myself? Is that the answer to habituate...what advices for the next year?

Thank you for your time

Lying to yourself may or may not work, as long as you have reasonable expectations. The problem with lying to yourself, is that sometimes reality reveals itself in the most unexpected times, and this might send you into a depression. My first year I did the whole "this will go away, I am just being paranoid"...then after 6 months it still haven't gone and the dawning realization of it being permanent sent me into panic attacks.

It took some courage to come to terms of the situation, there is always a chance T will go away on its own...but there is a chance it might not. If you can accept both outcomes, you will be much happier.

Just my opinion.

 

[streeter1985]

@GregCA I thought that all audiograms from otosclerosis patients have in common that it effects the full frequency range? Like yours, they "just" missed the gap. only in early stage low frequencies. Thats what I thought. Its sad to hear that you also had troubles with the audiologists. I dont know what to do by otosclerosis but in my case the failed audiogram avoid me from regular treatments as the ENT said "its just an eardrum crust and here take some ginkgo come back in 4 weeks..." after 4 weeks and no way to stay at home from work my chances were pretty reduced...

@coffee_girl thanks so much for your posting I already thought that my thread goes off topic. I am already at the stage to accept my health condition and to understand whats going on with me that was the hardest part in the first year because no ENT was sure what my condition acutally was and also the wrong audiogram of the first ENT changed my trust concerning doctors of all kind - first time I need them and they completly failed, what a shame.

The truth is I dont believe anymore in a cure without any medical treatment. The first month was like a countdown until it was over and the T was still there...a shock...but I didnt cry or anything strange I kind of accepted it from the very beginning.....all the cortison made it appear in the hospital I think...maybe also because I was alone and listened to my body I dont know.

I think I habituate to it most of the day but it comes like a wave sometimes the noise makes me unhappy and after an hour my thoughts change and its like "normal" or the full day is destroyed and that phases that come everyday I wonder if they will go away or ease with time because I think they show me that I am still not completly myself.

I have two sounds I hear one is in the background like the normal sound they make in movies when something hits you strong its constant but the other one above is the aggressive one its changing all 3 seconds no rythm to identify its completely random a very high frequency its like fighting higher lower etc its hard not to pay attention because of course it can be a real sound too

I think I am more the person who would say "it doesnt bother me....it doesnt bother me" as I dont believe it will go away.

I have no idea what to do in the next year...my runs to ENTs and hospitals are over...I dont know..they kept me busy...did you look where your Tinnitus spikes to avoid that situations etc? I dont know right now I am afraid of going to the cinema...wearing headphones when I skype at work etc. there are lots of things I still dont know how the T reacts too I think. Maybe thats also part to habituate to it to know whats good and bad in that condition to have a path i can stay on.

Dont have a plan yet.

Thanks for your advice

 

[robHing]

Any advice for me? I don't wanna lie to myself that it doesn't bother me...should I lie to myself? Is that the answer to habituate...what advice for the next year?

Try to habituate your tinnitus and live it one day at a time. Do not think too far (eg. next year).
This is how we face the cruel, merciless T.

 

[Greg Sacramento]

My left side of the face feels uptight/numb

Otosclerosis can cause the face to feel numb with tightness, but I don't know much about that. Otosclerosis is listed as a common facial cause. To narrow other facial causes that can relate to tinnitus and hearing loss would include dental work at time of onset, vision problems, temple pain, stiff neck, shoulder pain, jaw muscle pain or extra salvia in mouth. If there's a problem within the mouth then it could be any number of hundreds of things.

 

[streeter1985]

I don't really have much of an answer, except that you should never lie to yourself.
By doing so, you would be basically building a house of cards that can collapse in a spectacular fashion at any time.
This is not just for Tinnitus, but everything else in general...always be honest with yourself, even if it's bad.

Hey @Wolfears, thanks for your reply! I am a person that is honest with himself but I of course I have trouble to live my life with an incurable disease but I know what you mean with the house of cards that might be true. You know sometimes I meet people where I think that can be what they actually believe in - what they say - what they do - what they offer etc. because when you asked them in detail about what they are doing here they get nervous but I dont know if that works out of them by the end of the day - I mean that not only T related - so I thought, ok maybe thats how to handle an incurable disease to bring yourself to a lets call it meta level that creates a shield around you or your mind against such diseases.

But I think you are right its better to accept it. I was so busy to run from treatment to treatment that I now have a lot of time, less social contact and a mountain of work to do and it just felt like ok one year is over I think the T is now more or less the T i will stay with and there is no cure I tried from acupuncture to middle ear injection with cortison everything. So I asked myself whats now to do...not only saying "go on with your life" I read a lot that most people cant go back to the position in life they had without T - I mean they suffer from it. I had never a problem to sleep with the T i need around 5 minutes and I am away or even faster without any noise machine. I had a noise machine but it was working for me I had more problems to sleep with that thing

Thank you thats a very important input with your house of cards and as my hearing loss might have been stress related its better for me to accept such a disease. Maybe thats better for me to get a better relation to my T. Thanks!

 

[streeter1985]

Try to habituate your tinnitus and live it one day at a time. Do not think too far (eg. next year).
This is how we face the cruel, merciless T.

Yeah @robHing I was shocked how much time I have now since I am done with the treatments and running from ENT to ENT and now I stand here with a T thats louder as at the beginning but seems to be stable since more or less 6 months. I think thats what shocked me now I only can hope for a future cure.

Its like now that you are home of war, noone is here, everything changed and you cant go an with life for what you experienced in war and you see your colleagues getting married, having kids and other good things and you dont even wanna know if the screaming of a baby destroys your last hair cells...you know what I mean. I was so focused on treatments and research that it seemed to be an endless tunnel and now the tunnel is over and I am at a completly different place.

 

[streeter1985]

Otosclerosis can cause the face to feel numb with tightness, but I don't know much about that. Otosclerosis is listed as a common facial cause. To narrow other facial causes that can relate to tinnitus and hearing loss would include dental work at time of onset, vision problems, temple pain, stiff neck, shoulder pain, jaw muscle pain or extra salvia in mouth. If there's a problem within the mouth then it could be any number of hundreds of things.

Thanks for your input @Greg Sacramento the feeling in my face came with the hearing loss or around that time. I had a lot of work and other troubles at that time so I didnt notice it maybe. I have troubles with my left body side anyway: sciatica nerves and numb feeling in my left fingers, sometimes yes shoulder pain. My scars from university but blood circulation etc everything fine and on the CT nothing that could indicate a hearing loss. So I think it was the overall situation of my body nearly dieing combines with a high stress level.

I checked otosclerosis really at around 15 ENTs with a lot of tests because of that impressive gap I have in the higher frequency you know the gap would say to me that if I do something for my middle ear I can maybe gain a lot of db back but its not otosclerosis I even was at a very famous ENT in my town who still makes surgeries by the age of 70 he built up the ENT clinic in hospital and the whole country wanted appointments....and even he is saying thats normal and so I stopped searching...I mean there are not many new methods on the market for ENTs and ears so I kind of can say even a 70 years old ENT can give the same input.

I checked dental problems but no dental problems that could cause hearing loss. So I dont know but yeah its funny that its all on the left side and at the hyperbaric oxygen therapy I only met people with hearing loss on the left side, so strange...

Thanks for your input!

 

[streeter1985]

Thanks to the little helper that changed my thread title now it describes better what this thread is about!

 

[Greg Sacramento]

My left side of the face feels uptight/numb

I quoting this again because there may be a connection. You also said:

I had a swollen outer ear canal and crusts over 3 months on my eardrum the ENTs didn't know why.

Within this link read section Mastoid Infection.

http://www.michiganear.com/ear-services-facial-nerve-problems.html

 

[streeter1985]

@Greg Sacramento thanks that you look that all up. I checked the Mastoids already I even was able to read the CT on my own about shadowing of mastoid cells etc. because it was weekend and I wanted my answer earlier but of course I checked that also at the ENTs office.