Tinnitus Been Getting Worse for a Year (No Reason)

[Pitseleh]

Hi all,

I'm 31, been facing this condition since I was 17.
I have no idea why it originally started, but I already had mild hearing loss back then.

I can hear 4 different tinnitus frequencies: 2000 Hz (left), 8000 Hz (left), 10 000 Hz (right), 14 000 Hz (right).
Only the 2000 Hz can be masked.

Last year, I only had 2 frequencies, only in my left ear.

I have no idea why it's been getting constantly worse for a year. It's like it's unstoppable. I've had various appointments with ENT specialists. My hearing has strongly decreased in 3 months (again... no explanation).

My January audiogram showed, on average, 22 dB loss in the left ear (peaking at 35 dB in the 2000 Hz range) and 17 dB in the right.

I did one audiogram last week: 27 dB hearing loss on average in my left hear (peaks at 50 dB in the 2000 Hz range) and 28 dB in the right (peaks at 40 dB in the 4000 Hz range)

No concerts, no headphones, no antibiotics, no noisy environment, no nothing really...

I just don't get it and I'm tired of it getting worse and worse, with nothing I can do.

Any help, piece of advise, is strongly appreciated.

Best

 

[Tybs]

If no noise trauma was involved, then check for TMJ/neck issues. Pain signals from these can be mis-interpreted as sound as well. Did you have any recent physical trauma's?

 

[Pitseleh]

I do not have any recent physical trauma. I have slight TMJ issues though (popping jaw on the right side). My osteopath is a jaw specialist and my wife a dentist, they haven't been able to fix the problem in more than 2 years. Still popping a lot on the right side.

Tbh, I wouldn't understand how a popping jaw would lead to an aggravated hearing loss but who knows.

Feeling quite desparate right now

 

[FGG]

I do not have any recent physical trauma. I have slight TMJ issues though (popping jaw on the right side). My osteopath is a jaw specialist and my wife a dentist, they haven't been able to fix the problem in more than 2 years. Still popping a lot on the right side.

Tbh, I wouldn't understand how a popping jaw would lead to an aggravated hearing loss but who knows.

Feeling quite desparate right now

Did they have a theory why they can't fix it? Did you try splints? There are dentists who are TMJ specialists. Maybe you should consult with one.

 

[Pitseleh]

Did they have a theory why they can't fix it? Did you try splints? There are dentists who are TMJ specialists. Maybe you should consult with one.

I've been wearing splints every night for the past 2 years, yes.
At first we tried 2 splints, no change. Then we tried only 1 (top, then bottom), no change either.

My wife and another dentist I consulted with tell me my bite is fine and they can't do anything more than splints as my dental/jaw situation is OK apart from the popping.

About the osteopath who's worked with me, she does wonders with the other patients she works with when it comes to TMJ disorders.

Except with me ... Yay ! I've consulted with another one, no better result.

Oh and what I didn't say is I'm a hypnologist, so I'm well aware of all the inconscient aspect of stress and anxiety on TMJ disorders, but I can't figure out what's going on with the Tinnitus and Hearing Loss getting progressively worse while I'm not facing any stimulus that would cause it to aggravate.

I'm not posting in the "suicidal" post, but really, this thing is becoming a hell. I would say the worst is not the Tinnitus and Hearing Loss itself (although it's a nightmare, nothing masks it, even white noise) as I could be able to habituate as I did in the past, the difficult thing is that it's been getting worse and worse, I'd say weekly, sometimes daily, for a year now. The sound is louder and louder and frequencies add up.

 

[FGG]

I've been wearing splints every night for the past 2 years, yes.
At first we tried 2 splints, no change. Then we tried only 1 (top, then bottom), no change either.

My wife and another dentist I consulted with tell me my bite is fine and they can't do anything more than splints as my dental/jaw situation is OK apart from the popping.

About the osteopath who's worked with me, she does wonders with the other patients she works with when it comes to TMJ disorders.

Except with me ... Yay ! I've consulted with another one, no better result.

Oh and what I didn't say is I'm a hypnologist, so I'm well aware of all the inconscient aspect of stress and anxiety on TMJ disorders, but I can't figure out what's going on with the Tinnitus and Hearing Loss getting progressively worse while I'm not facing any stimulus that would cause it to aggravate.

I'm not posting in the "suicidal" post, but really, this thing is becoming a hell. I would say the worst is not the Tinnitus and Hearing Loss itself (although it's a nightmare, nothing masks it, even white noise) as I could be able to habituate as I did in the past, the difficult thing is that it's been getting worse and worse, I'd say weekly, sometimes daily, for a year now. The sound is louder and louder and frequencies add up.

Another thought: have you looked into immune-mediated hearing loss? It can cause a rapidly progressive loss, too.

 

[Pitseleh]

Another thought: have you looked into immune-mediated hearing loss? It can cause a rapidly progressive loss, too.

First, thanks for replying to me, FGG.
I have not looked into it. How can I do that? Is it something I have to mention to my GP? How does that work?

 

[FGG]

To get a good work up, you would need to see an ENT, and in some cases an ENT subspecialist, an Otologist. You might have to ask your GP for a referral depending on your health care situation.

 

[Juan]

My January audiogram showed, on average, 22 dB loss in the left ear (peaking at 35 dB in the 2000 Hz range) and 17 dB in the right.

I did one audiogram last week: 27 dB hearing loss on average in my left hear (peaks at 50 dB in the 2000 Hz range) and 28 dB in the right (peaks at 40 dB in the 4000 Hz range)

Maybe conductive hearing loss? Like earwax? Or eustachian tube problems?

Your ENT should be able to have an idea according to the shape of your audiogram. Some hearing conditions have a certain shape in the audiometric curve, and also the progress happens in a certain way. And that's how doctors guess... apart from tests of course.

 

[Tybs]

I do not have any recent physical trauma. I have slight TMJ issues though (popping jaw on the right side). My osteopath is a jaw specialist and my wife a dentist, they haven't been able to fix the problem in more than 2 years. Still popping a lot on the right side.

Tbh, I wouldn't understand how a popping jaw would lead to an aggravated hearing loss but who knows.

Feeling quite desparate right now

Tinnitus caused or aggravated by any cause can give negative audiograms as a result. The cause is simple: on a bad day, T can be so loud that it's hard to hear the minor beeps. I've had three audiograms where #1 and #3 were flawless, while #2 showed diminished hearing. Guess what, with a concert of twelve sounds in my head, my T was the worst ever on the day of audiogram #2... sorry for not noticing those minor beeps in between.

Audiograms can give an indication of hearing loss, but they're far from objective when it comes to tinnitus.

 

[Pitseleh]

Maybe conductive hearing loss? Like earwax? Or eustachian tube problems?

Your ENT should be able to have an idea according to the shape of your audiogram. Some hearing conditions have a certain shape in the audiometric curve, and also the progress happens in a certain way. And that's how doctors guess... apart from tests of course.

It is SNHL, not conductive loss. He did a complete check but could not give me any explanation.

As to Tinnitus masking the beep, I know what you mean, but he also checked speech recognition and the hearing deteriorated a lot too. So it's not just the T masking beeps, it's my hearing abilities quickly decreasing for no reason

The ENT could nlt tell me more than "you have very bad ears for your age, you're going to be needing hearing aids now and get your ears checked at least once a year".

 

[Juan]

It is SNHL, not conductive loss. He did a complete check but could not give me any explanation.

As to Tinnitus masking the beep, I know what you mean, but he also checked speech recognition and the hearing deteriorated a lot too. So it's not just the T masking beeps, it's my hearing abilities quickly decreasing for no reason

The ENT could nlt tell me more than "you have very bad ears for your age, you're going to be needing hearing aids now and get your ears checked at least once a year".

Something similar has been happening to me, after many years of hearing problems, but it is usually triggered by the odd loud noises that sometimes happen when I go for a walk with double hearing protection (earplugs and earmuffs on). At the beginning it was more or less ok after those episodes, but months down the road my hearing is getting worse and worse and, like in your case, it has been confirmed by audiometric test and speech recognition test.

I don't have a clue either of whats going on. My guess is that the input of sound is worse, but what my hearing system does when processing the sound through the cochlea, neural synapses, hearing nerve etc somehow is worse too, and this affects the quality of sound, and speech recognition.

The bottom line is that, like you, I have no answers and don't really know whats wrong and why my hearing keeps getting worse. I thought of going to a neurologist, but my feeling is it won't be of much help either.

 

[trft2]

I didn't look at all the responses. I do have one question. Did your tinnitus get worse in jumps as opposed to a steady increase?

 

[Pitseleh]

I didn't look at all the responses. I do have one question. Did your tinnitus get worse in jumps as opposed to a steady increase?

Hello,

It's been a steady increase. I never really noticed a tinnitus spike at any moment.

 

[Pitseleh]

Hi all,

So the T is still blasting.

What I didn't mentions is I've been taking Rivotril (Clonazepam) for 3 years and obviously, it has no effect anymore. I'm facing a double issue here, which is that the T has kept increasing for a year (as I wrote in my 1st post), and Rivotril makes no difference anymore.

So 2 days ago, I couldn't not bear it anymore and took a bigger dosage. It helped a tiny bit during one day (T went from 9/10 to 7/10), but I don't want to keep a higher dose and today, I'm back to the blasting T.

This really is a vicious circle, as I know I could get a bit of relief with more Rivotril, but I also know how quickly the body habituates to it and then just leaves you with no effect and just dependance (thus needing bigger doses for the same action)

So yeah. I wish my T could at least settle, stop increasing. It is intrusive, loud and unmaskable, but if it stayed the same, maybe I could learn to live with it at some point, as some severe T sufferers sometimes do.

 

[Lane]

What I didn't mentions is I've been taking Rivotril (Clonazepam) for 3 years and obviously, it has no effect anymore. I'm facing a double issue here, which is that the T has kept increasing for a year (as I wrote in my 1st post), and Rivotril makes no difference anymore.

@Pitseleh -- My take is your clonazepam usage is almost assuredly responsible for your increasing tinnitus. I'd suggest checking out some of the posts by @Star64. She's posted fairly extensively on how benzodiazapines kick-started her tinnitus, and how she's struggled (mightily) to cope with it. She may have some good advice for you as well.

All the Best...

 

[Pitseleh]

Hey again,

Quick update : low pitch has added up, around 250 hz, super loud when it's quiet (as opposed to all my high pitched frequencies that stay more or less the same in volume).

I have no idea what's going on.
This low pitch started 2 months ago. Then after 2 weeks, it calmed down for 2 weeks.
It came back, louder, stayed, then wen nearly completely away for 10 days.

I got a bad cold 3 weeks ago, and now the low pitch is back, louder than ever. It's been here for 10 days without showing any sign of improvement at all.

What is going on ?
MRI, blood tests, all came back normal, except for high cholesterol (I'm super thin and eat healthy though).

I suspected Rivotril, but I've been slowly tappering and this low hum faded at some point while I was tappering, so Rivotril may not be in cause.

Anyway, looking for some support, because basically, months go by, and it's louder and louder.

 

[WillBeNimble]

Anyway, looking for some support, because basically, months go by, and it's louder and louder.

I hope it improves for you. I don't really know what to say, other than that. I wish I had a cure here for everyone, as no one deserves this.

 

[DebInAustralia]

Another thought: have you looked into immune-mediated hearing loss? It can cause a rapidly progressive loss, too.

I was about to suggest that too...

And consider low dose naltrexone.

https://www.ldnscience.org/resources/interviews-patients/sue-christiance-autoimmune-hearing-loss

 

[Pitseleh]

I was about to suggest that too...

And consider low dose naltrexone.

https://www.ldnscience.org/resources/interviews-patients/sue-christiance-autoimmune-hearing-loss

I had not seen your post, sorry for not responding sooner.
I could try LDN but I'm not sure about taking it along with clonazepam.
Any view on that?

 

[DebInAustralia]

I had not seen your post, sorry for not responding sooner.
I could try LDN but I'm not sure about taking it along with clonazepam.
Any view on that?

I wouldn't have thought there's a cause for concern... you can't take opioids with LDN though.

Have a look here...

www.ldntrust.org

And have a read of Linda Elsegood's book, *The LDN Book*

There are Facebook groups also if you put LDN support in the search bar...

 

[dan]

I'm not posting in the "suicidal" post, but really, this thing is becoming a hell. I would say the worst is not the Tinnitus and Hearing Loss itself (although it's a nightmare, nothing masks it, even white noise) as I could be able to habituate as I did in the past, the difficult thing is that it's been getting worse and worse, I'd say weekly, sometimes daily, for a year now. The sound is louder and louder and frequencies add up.

Hi Pitseleh,

I think your username means "tiny" in Hebrew.

Anyways, I was wondering if you could elaborate on your tinnitus for me.

If nothing masks it and it still gets worse, how can you tell? Is it more pronounced against the background outdoor noise, etc?

Also, if the low hum is maskable, how can it be the worst one?

Any tips on habituation for unmaskable, high frequency tinnitus? It is screechy sounding, right?

 

[Gabriel5050]

I am in a pretty similar situation. It's a one way street to worse tinnitus. It doesn't even make any sense anymore. Sometimes it will not get louder even though it was a loud day. Sometimes it will get louder even though I had a streak of quiet days. Just FML.

And @dan, I know you didn't ask me, but yeah. You compare it against familiar sounds like a fan, the sounds you use to mask it usually, TV, etc. Sometimes the change is very noticeable. I'd say even in silence.

 

[Freyja95]

Hi Pitseleh,

I'm surprised you've been to ENT specialists several times without receiving an explanation.

Considering you've had this since quite a young age, my thoughts goes towards that it might be genetic/hereditary. But your ENT/audiologist have already looked into that possibility I surely hope? And at least where I'm from, big changes in a short periods of time is important to investigate thoroughly, so I hope they've had you do quite a large amount of tests.

 

[weab00]

I'm surprised you've been to ENT specialists several times without receiving an explanation.

I'm not, ENTs are mostly useless when it comes to noise-induced tinnitus.

Considering you've had this since quite a young age, my thoughts goes towards that it might be genetic/hereditary.

Inheriting several tinnitus tones suddenly at 17 and having it develop into hyperacusis?

I hope they've had you do quite a large amount of tests.

I hope not. That could make him worse, especially LDLs. Audiograms are useless if you're not hard of hearing and are not an accurate reflection of hearing loss.

 

[Freyja95]

@weab00 I didn't see anything about hyperacusis being mentioned, they mainly talked about tinnitus and hearing loss getting worse. And saying they already had mild hearing loss at 17, so yes.

 

[Pitseleh]

Hi Pitseleh,

I'm surprised you've been to ENT specialists several times without receiving an explanation.

Considering you've had this since quite a young age, my thoughts goes towards that it might be genetic/hereditary. But your ENT/audiologist have already looked into that possibility I surely hope? And at least where I'm from, big changes in a short periods of time is important to investigate thoroughly, so I hope they've had you do quite a large amount of tests.

Still no explanation, still getting worse, now the low hum has become super loud and the high tones have been increasing too.

As to investigations, I did a complete brain + auditory MRI, which showed nothing. Hearing tests are not good in terms of hearing loss, but apart from that, my ears are working "fine".
Blood tests are OK, just high cholesterolemia. No sign of autoimmune disease.

I don't know what to investigate more, but I can't find any solution nor any relief anymore.

 

[Matchbox]

Still no explanation, still getting worse, now the low hum has become super loud and the high tones have been increasing too.

As to investigations, I did a complete brain + auditory MRI, which showed nothing. Hearing tests are not good in terms of hearing loss, but apart from that, my ears are working "fine".
Blood tests are OK, just high cholesterolemia. No sign of autoimmune disease.

I don't know what to investigate more, but I can't find any solution nor any relief anymore.

Did they even TRY steroids? Immunological testing is difficult and for all you know, you had a good day between attacks.

Bilateral progressive hearing loss over months is classic autoimmune.

I'd bet my left nut Prednisone would help you followed by immunosuppressive therapy.

Did they check for heat shock protein?

Might want to ask @Zugzug for his opinion here.

 

[Pitseleh]

Did they even TRY steroids? Immunological testing is difficult and for all you know, you had a good day between attacks.

Bilateral progressive hearing loss over months is classic autoimmune.

I'd bet my left nut Prednisone would help you followed by immunosuppressive therapy.

Did they check for heat shock protein?

Might want to ask @Zugzug for his opinion here.

Hello and thanks for your reply.

They tried high doses of Prednisone, yes. They did nothing

They didn't check for heat shock protein though.

 

[Matchbox]

They tried high doses of Prednisone, yes. They did nothing

Shit. I'm sorry man. That's god awful.