Be Honest. Do You Still Enjoy Life?

[Simon85]

What does one do in my situation.

@F-u-T I know this is very difficult. I usually put on heavy duty earmuffs when playing with my son (around 4 years old). Hyperacusis just makes it difficult to be around other people, especially when they're noisy.

I try to explain it to my boy at a whisper. Sometimes he'll copy me and we'll make it part of the game. This doesn't always work, of course. Boys like to bash and make loud noises. Although, they won't be 3 forever and will have less of an impulse to make sudden loud noises.

 

[F-u-T]

I had to put my 2 year old into day care. He is going through a stage where he squeals when he is happy, squeals when he is sad, and throwing some epic tantrums. I can't handle the sound so he has to go. Breaks my heart. He was so wanted and I tried 8 years to have him, and now I am unable to take care of him. Not only because of the noise, but because tinnitus & hyperacusis have brought me to my knees emotionally and psychologically. I can't even look after myself.

I am so sorry you are dealing with this too.

I can tell you that my boys went through a similar phase of screaming/squeals and they don't do it as often now. I do feel things will get better as they get older. The hard days are just really hard sometimes and today was one of them. I pray one of these new treatments is successful and we all find the relief we so deserve!

 

[Psych]

@guenguer, do you know what caused your SSNHL, especially since it has happened repeatedly?

I've had some recent hearing loss in my left ear. Two hearing shifts in 10 months. Tinnitus started last April, 2020. It was a seashell/echo sound only in my left ear and I got used to it fairly quickly after several months of masking. And then I think it's sort of improved because most of the time I never heard it and pretty much all ambient noise covered it up. The seashell noise was tolerable. When I plugged my ear I could hear a faint pure tone ring but could not hear it otherwise.

Two weeks ago, the tinnitus worsened and the pure tone ring was dominant. Testing revealed more hearing loss. And it was only a mild shift! What the heck?

Because my condition is unilateral, they are doing $1 million work up to rule out acoustic neuroma and other scary conditions.

Since this new presentation two weeks ago, I have had two nights where it has spiked miserably. Waking up in the middle of the night with a ringing I could hear over everything. Last night it was so bad I ended up taking 1.5 mg of Klonopin to call myself down. I had completely weaned myself off of it months ago and was doing great I used it for sleep. And then when this started again, I was being very careful to keep my dose at .5 mg only per day only when I needed it but last night was awful. It seems to be back to baseline this morning.

Anyway, sorry for the long post. I was just wondering what your experience has been. I'm terrified that as my hearing continues to worsen, assuming it well, I'm just going to end up getting increasingly louder and louder tinnitus and I don't know how I'm going to manage. All I could think last night while I was laying in bed listening to the ringing was how am I going to work like this? I have two kids to support.

I know my profile says I've had to the test since 2015 but that was after noise exposure and it went away. I haven't been able to figure out how to update my profile.

Thanks.

Sorry to hear you had an increase. Hope it stays away! Mine got a lot louder last night, and is still loud today. I really hate the wondering of "Is this going to stay loud or attenuate?" And my increases always seem apropos of nothing! May we all find satisfactory answers soon. <3

 

[Lane]

Hence, many researchers now believe that a substantial number (perhaps even the majority) of patients who receive a diagnosis of interstitial cystitis/overactive bladder syndrome/painful bladder syndrome in fact have a chronic infection that is not being picked up by the standard tests.

Hi @serendipity1996 -- You may want to consider looking into ozone therapy. It can be very effective in treating chronic infections such as the ones you describe. Some health care practitioners specialize in using these therapies, which have been proven to be very safe as well.

Anyone can purchase the equipment necessary to do their own ozone therapy at home, which would end up being very cost efficient in the long run, as well as providing lifelong preventative treatment. The videos available at the above linked website gives detailed instructions on how to do that. -- Ozone therapy can apparently do wonders for all kinds of heart and cardiovascular diorders as well.

@Steph1710 Below is the link to a prominent ozone organization.

American Academy of Ozonotherapy

 

[Chinmoku]

No.

Acute, how are you doing?

 

[acute]

Acute, how are you doing?

Hi @Chinmoku, thanks for caring about me.

It's very kind of you.

I'm not doing well.

I hope you feel better I read your posts in the Suicidal thread and it breaks my heart. I am in the same boat.

 

[Poseidon65]

Things have taken a big positive turn for me ever since getting hearing aids / wearable white noise generators. Previously I would have answered "sometimes, usually not," but now I would answer "yes."

 

[Chinmoku]

Hi @Chinmoku, thanks for caring about me.

It's very kind of you.

I'm not doing well.

I hope you feel better I read your posts in the Suicidal thread and it breaks my heart. I am in the same boat.

I'm sorry to hear you are still suffering a lot, but I'm relieved to know you are safe. For some reason I was worried. Let's hope things get better at some point.

 

[just1morething]

Yes, I need them to check my heart. My great grandfather died at 52 from a heart attack. My grandfather died at 49 from a heart attack. My uncle died at 54 from a heart attack last year. Two of my uncles have had triple heart bypasses, and another has had a quadruple heart bypass, and my dad is on medication for his heart. And all the women on my dad's side, suffer with angina...

Something tells me, they should really be checking my heart.

How are you doing now? Did you get checked out thoroughly? I went to Mayo Rochester Thursday, but the doctor said very little about my left TMJ. He said to see an ENT there. Driving drove my noise nuts... screechy sounds. I seem better today.

 

[gregmech26]

My life has effectively ended when I was diagnosed with an acoustic neuroma in May 2015 with high-pitched relentless tinnitus.

Nearly 6 years later, and nothing new has been developed to help me with my tinnitus. I don't see much promise for the next 6 years either, as my tinnitus was caused by an acoustic neuroma and then treated by Gamma Knife.

My primary care doctor was shocked when I told him I was suicidal. He actually said to me "so your ENT basically told you nothing can be done?" And the answer to that question, for me, is YES.

Apparently there are some things medical science can't fix/treat/cure.

Most people with an acoustic neuroma who have Gamma Knife lose all their hearing after 10 years. The more hearing they lose, the worse their tinnitus gets. I haven't habituated to my severe high-pitched tinnitus in 6 years, so why would I habituate in the next 6 years or the rest of my life?

My tinnitus is strong and severe and relentless. It's impossible to work or enjoy life with this alarm going off in my ear. And what makes it even worse is nobody can see or hear it except me. I feel like I'm a burden complaining about it since nothing can be done. So why even mention it? Kill yourself or move on.

I've tried all the hearing aids, maskers, vitamins, ringing bells, diet, distractions, anything trying to habituate, TRT and trust me nothing has worked. Not for me. I know a lot of people here are in the same situation or worse.

My audiologist says people with tinnitus should seek therapy with a psychologist. HaHa. What a joke.
What is cognitive behavior therapy going to do? "Hey doctor my ear is a 5-alarm bell nonstop", or "my arm is on fire"... "tell me how you feel about it...?"

There is no amount of mental gimmicks that will help me. I think it's kind of insulting to even suggest a shrink can help with severe tinnitus.

So to answer my primary care doctor's question, "YES" my ENT basically said "live with it" as there's nothing that can be done. I don't blame him. This is the truth. He not sending me on some endless goose chase.

There is no cure, and the treatments are pathetic. They offer little to zero relief. It's very stressful and frustrating. Anyone with a brain knows there is no good outcome.
This is my truth, and my sadness. I know people love to always give (false) hope, but this is my truth. At least for me. I wouldn't wish this on my worst enemy. The only reason I'm still here is because I've seen the pain suicide can cause to others, even those you barely thought you knew. I couldn't put my mother through that. But as I've said, if my mother goes then I will be shortly behind.

 

[roy1159]

I can't seem to enjoy anything I used to enjoy pre tinnitus and hearing problems.

I can't watch movies or anything whatsoever without getting depressed that I can't understand everything that is said (I hear half words and mainly 'sh', 's', and 'tz' sounds although all tests came back normal). Playing the piano is not the same as before as well. Exercising outside sucks as well because the reactivity of the tinnitus and the mild hyperacusis which causes it I guess.

This doesn't resemble life anymore and I really don't know know what's the point of hanging on at this point.

 

[Ava Lugo]

I can't seem to enjoy anything I used to enjoy pre tinnitus and hearing problems.

I can't watch movies or anything whatsoever without getting depressed that I can't understand everything that is said (I hear half words and mainly 'sh', 's', and 'tz' sounds although all tests came back normal). Playing the piano is not the same as before as well. Exercising outside sucks as well because the reactivity of the tinnitus and the mild hyperacusis which causes it I guess.

This doesn't resemble life anymore and I really don't know know what's the point of hanging on at this point.

What happens if you wear earplugs? Do you think earplugs would make the reactivity not noticeable?

I also want to add, I definitely understand. I feel like I can't listen to music unless I'm intoxicated.

 

[roy1159]

What happens if you wear earplugs? Do you think earplugs would make the reactivity not noticeable?

I also want to add, I definitely understand. I feel like I can't listen to music unless I'm intoxicated.

Earplugs reduce the reactivity but then the tinnitus is SCREAMING like crazy. Even outside there is no break from it. As for music it's horrible at the same time to hear the tinnitus reacts to it as it takes all the joy off of listening. I don't even know why it's so reactive and loud.

 

[FGG]

Earplugs reduce the reactivity but then the tinnitus is SCREAMING like crazy. Even outside there is no break from it. As for music it's horrible at the same time to hear the tinnitus reacts to it as it takes all the joy off of listening. I don't even know why it's so reactive and loud.

Part of your issue might be middle ear or even jaw/TMJ. Artificial speaker audio can make some ears more touchy, too, in some of those cases and I think you are especially sensitive to that. I would at least examine if it may be a co-factor. You ever get jaw or face pain, ear fluttering or ear fullness?

 

[roy1159]

Part of your issue might be middle ear or even jaw/TMJ. Artificial speaker audio can make some ears more touchy, too, in some of those cases and I think you are especially sensitive to that. I would at least examine if it may be a co-factor. You ever get jaw or face pain, ear fluttering or ear fullness?

I have had TMJ issues for more than 3 years. I have Condylar hyperplasia which means my right jaw condyle has grown more than the left one causing jaw misalignment. I will soon have surgery in order to stop the growth. I did have these problems before the tinnitus so I and the doctors as well doubt it has anything to do with it.

 

[FGG]

I have had TMJ issues for more than 3 years. I have Condylar hyperplasia which means my right jaw condyle has grown more than the left one causing jaw misalignment. I will soon have surgery in order to stop the growth. I did have these problems before the tinnitus so I and the doctors as well doubt it has anything to do with it.

Those issues can be progressive and eventually affect middle ear function while still having "normal" hearing.

I doubt their doubts . At least as far as being a severity cofactor.

 

[Lane]

I doubt their doubts .

Me too!

 

[roy1159]

Those issues can be progressive and eventually affect middle ear function while still having "normal" hearing.

I doubt their doubts . At least as far as being a severity cofactor.

Indeed it's progressive. The growth ceased when I first checked it 3 years ago and then it recurred... I wonder if it has any effect on the symptoms. I hoped it would but was discouraged after doctors assuring me it's never seen in other patients. I also never found any reference for a connection between the two in the medical literature. I will undergo the surgery in about 2 months so no way of knowing what effect it will have until I go under the knife.

 

[FGG]

Indeed it's progressive. The growth ceased when I first checked it 3 years ago and then it recurred... I wonder if it has any effect on the symptoms. I hoped it would but was discouraged after doctors assuring me it's never seen in other patients. I also never found any reference for a connection between the two in the medical literature. I will undergo the surgery in about 2 months so no way of knowing what effect it will have until I go under the knife.

Well, Condylar Hyperplasia itself (which varies a lot in severity) wouldn't be the cause, the secondary misalignment would be. Keep that in mind in your web searches. Yours is also still changing and not stable, so this would put abnormal stress on the interconnected muscles and nerves around the jaw and ear.

As an aside, the reason your surgeon might not see a change in their patients following surgery alone is because it's likely imo that surgery will need to be followed up with muscle retraining. I would look for a TMJ specialist to work with your surgeon if you haven't already.

Jaw issues are especially linked to *severe* tinnitus in particular:

Impact of Temporomandibular Joint Complaints on Tinnitus-Related Distress

 

[roy1159]

Well, Condylar Hyperplasia itself (which varies a lot in severity) wouldn't be the cause, the secondary misalignment would be. Keep that in mind in your web searches. Yours is also still changing and not stable, so this would put abnormal stress on the interconnected muscles and nerves around the jaw and ear.

As an aside, the reason your surgeon might not see a change in their patients following surgery alone is because it's likely imo that surgery will need to be followed up with muscle retraining. I would look for a TMJ specialist to work with your surgeon if you haven't already.

Jaw issues are especially linked to *severe* tinnitus in particular:

Impact of Temporomandibular Joint Complaints on Tinnitus-Related Distress

Thanks for the insight. I can only hope for the surgery to better the symptoms. I always wondered because my tinnitus is severe, reactive and multi-tonal... it could be the reason.

 

[Greg Sacramento]

@roy1159 You probably need Condylar Hyperplasia surgery as your doctors would know there's no condylar facture. There's little study on Condylar Hyperplasia and tinnitus, but indications have been made to indicate the shenomandibular ligament and the anterior malleolar ligament causes the ear to react with CH - muscles and nerves. Surgery should help with pressure release to these ligaments.

Wishing you the best.

 

[roy1159]

@roy1159 You probably need Condylar Hyperplasia surgery as your doctors would know there's no condylar facture. There's little study on Condylar Hyperplasia and tinnitus, but indications have been made to indicate the shenomandibular ligament and the anterior malleolar ligament causes the ear to react with CH - muscles and nerves. Surgery should help with pressure release to these ligaments.

Wishing you the best.

Thanks Greg. I will undergo the surgery a month from now.

Do you know of any evidence between auditory processing and TMJ issues/condylar hyperplasia?

I know it's probably not connected but it's my last chance regarding my baffling speech comprehension problems that are not explained by peripheral problems in the ear.

 

[dan]

I'm not doing well.

I'm sorry you aren't doing any better. What have you been up to these days?

 

[guenguer]

@guenguer, do you know what caused your SSNHL, especially since it has happened repeatedly?

I've had some recent hearing loss in my left ear. Two hearing shifts in 10 months. Tinnitus started last April, 2020. It was a seashell/echo sound only in my left ear and I got used to it fairly quickly after several months of masking. And then I think it's sort of improved because most of the time I never heard it and pretty much all ambient noise covered it up. The seashell noise was tolerable. When I plugged my ear I could hear a faint pure tone ring but could not hear it otherwise.

Two weeks ago, the tinnitus worsened and the pure tone ring was dominant. Testing revealed more hearing loss. And it was only a mild shift! What the heck?

Because my condition is unilateral, they are doing $1 million work up to rule out acoustic neuroma and other scary conditions.

Since this new presentation two weeks ago, I have had two nights where it has spiked miserably. Waking up in the middle of the night with a ringing I could hear over everything. Last night it was so bad I ended up taking 1.5 mg of Klonopin to call myself down. I had completely weaned myself off of it months ago and was doing great I used it for sleep. And then when this started again, I was being very careful to keep my dose at .5 mg only per day only when I needed it but last night was awful. It seems to be back to baseline this morning.

Anyway, sorry for the long post. I was just wondering what your experience has been. I'm terrified that as my hearing continues to worsen, assuming it well, I'm just going to end up getting increasingly louder and louder tinnitus and I don't know how I'm going to manage. All I could think last night while I was laying in bed listening to the ringing was how am I going to work like this? I have two kids to support.

I know my profile says I've had to the test since 2015 but that was after noise exposure and it went away. I haven't been able to figure out how to update my profile.

Thanks.

Sorry it took me so long to respond.

No, they have no idea what caused the SSNHL. It's like with tinnitus itself, they don't have a clue.

At some point they thought that it's maybe Meniere's disease, but it isn't. Then Hydrops, but it isn't that either.

While I had no SSNHL since then, hearing is still getting worse but slowly. Tinnitus is still worsening, even faster than ever. I feel like the tinnitus gets worse every few weeks. Permanently. Plus the occasional spikes and fleeting tinnitus episodes. It's hell right now to be honest.

 

[Matchbox]

Indeed it's progressive. The growth ceased when I first checked it 3 years ago and then it recurred... I wonder if it has any effect on the symptoms. I hoped it would but was discouraged after doctors assuring me it's never seen in other patients. I also never found any reference for a connection between the two in the medical literature. I will undergo the surgery in about 2 months so no way of knowing what effect it will have until I go under the knife.

I doubt a chronic worsening problem "wouldn't" have downstream effects. If you have active bone remodeling going on you should probably think about otosclerosis, or your auditory nerve is somehow getting pinched.

At any rate post surgery should be interesting.

Me, for example, an autoimmune or infection related problem makes sense as I've had those my whole life as well.

 

[Pharz]

No.

 

[roy1159]

I doubt a chronic worsening problem "wouldn't" have downstream effects. If you have active bone remodeling going on you should probably think about otosclerosis, or your auditory nerve is somehow getting pinched.

At any rate post surgery should be interesting.

Me, for example, an autoimmune or infection related problem makes sense as I've had those my whole life as well.

Hey, I think you mixed that up. We are talking about overgrowth of the right TMJ (regarding you mentioning otosclerosis). It doesn't affect hearing apparatus per se but, because of the discrepancy between left TMJ and right TMJ, I have TMJD so theoretically the surgery which returns full function of TMJ should diminish the severity of tinnitus, assuming it has anything to do with it.

 

[Matchbox]

Hey, I think you mixed that up. We are talking about overgrowth of the right TMJ (regarding you mentioning otosclerosis). It doesn't affect hearing apparatus per se but, because of the discrepancy between left TMJ and right TMJ, I have TMJD so theoretically the surgery which returns full function of TMJ should diminish the severity of tinnitus, assuming it has anything to do with it.

True it could be a direct cause, but "why" is your bone remodeling in the first place?

That might extend into a more systemic problem, which would include your middle ear bones / cochlea remodeling.

Fluoride treatment has been suggested as a fairly safe way to stop the damage, and the testing is easy enough for it.

 

[Kriszti]

Hey, I think you mixed that up. We are talking about overgrowth of the right TMJ (regarding you mentioning otosclerosis). It doesn't affect hearing apparatus per se but, because of the discrepancy between left TMJ and right TMJ, I have TMJD so theoretically the surgery which returns full function of TMJ should diminish the severity of tinnitus, assuming it has anything to do with it.

How long do you have to wait after surgery to see whether it has a beneficial effect on tinnitus?

 

[roy1159]

How long do you have to wait after surgery to see whether it has a beneficial effect on tinnitus?

It can be immediate but to restore TMJ function I will need some physiotherapy.To be honest, I don't know if I can hold on for a month. My hearing problems are too severe at the moment and I'm seriously considering applying for VAD in Pegasos.

True it could be a direct cause, but "why" is your bone remodeling in the first place?

That might extend into a more systemic problem, which would include your middle ear bones / cochlea remodeling.

Fluoride treatment has been suggested as a fairly safe way to stop the damage, and the testing is easy enough for it.

The etiology of the problem is poorly understood. Bone scintigraphy showed anomaly only in jaw condyles so it's not systemic.