Tinnitus and Progressive Low Frequency Hearing Loss

[Prince20]

Hello everyone,

My tinnitus started in late February two days after catching a cold. I recovered from the cold in 2 weeks, but the tinnitus remained. The most annoying tinnitus is a low frequency hum that at first I didn't know was coming from my left ear. I had TMJ issues on my right, so I thought it must have been coming from the right, only that it didn't come from the right so I had no idea what was happening. However, when I did a hearing test with a cell phone app in April, I didn't detect a low frequency hearing loss. I saw an ENT in mid-May when COVID-19 restrictions were slowly being lifted, and the ENT didn't detect a low frequency hearing loss for either ear at 250 Hz, so he called it idiopathic tinnitus.

Then, in early July while listening to low frequency sounds on my iPad, it dawned on me the hearing on my left side wasn't as good as the right. I ended up seeing an audiologist in July. She confirmed that at 250 Hz my left ear had sensorineural hearing loss that is 20 dB worse than my right ear. I redid the hearing test with the same cell phone app that I used in April, and it seemed that the low frequency hearing in my left ear has become a lot worse.

I don't know what's going on. The audiologist didn't think it's Meniere's because I didn't have vertigo attacks. If it was sudden hearing loss due to the cold in February, then I couldn't explain why my hearing has gotten worse since May. I don't know of other likely causes of unilateral low frequency hearing losses.

My family physician doesn't know much about hearing issues. Right now I don't know what's going on, or how to proceed.

 

[Jrblovsky]

Just because you don't have vertigo doesn't mean you don't have Meniere's. I have never had a vertigo attack yet my low frequency hearing continues to decline. I'm 33 years old and have always protected my ears. I thought I caused tinnitus from gunfire but it seems my losses are all now in low frequencies.

Also don't ever listen to an audiologist. They are all idiots.

Cochlear hydrops.

 

[DebInAustralia]

Just because you don't have vertigo doesn't mean you don't have Meniere's. I have never had a vertigo attack yet my low frequency hearing continues to decline. I'm 33 years old and have always protected my ears. I thought I caused tinnitus from gunfire but it seems my losses are all now in low frequencies.

Also don't ever listen to an audiologist. They are all idiots.

Cochlear hydrops.

Cochlear hydrops?

@Samantha R

 

[Jrblovsky]

Cochlear hydrops or secondary Meniere's disease. Meniere's can affect the vestibular or cochlear region of your inner ear. Just because you don't have classical symptoms doesn't mean you don't have it.

You probably have the same thing I have but it sounds you have it bilaterally. I hope you are able to deal with the noise better than I am. My life, my career, and my sanity are all in shambles since this started. I had to give up a near six figure job because of the noise.
I have researched Meniere's a lot since I lost my career, trying to find a cure or even relief. As of now I have nothing. Some habuiate to their tinnitus and are fine, I am not one of those people. Mine is 750 Hz and 75 decibels constantly.

I am trying Diamox now and plan to try antivirals next. If those dont work I'm going to see about a cochlear implant.

Best of luck

Josh

 

[Matchbox]

Cochlear hydrops or secondary Meniere's disease. Meniere's can affect the vestibular or cochlear region of your inner ear. Just because you don't have classical symptoms doesn't mean you don't have it.

You probably have the same thing I have but it sounds you have it bilaterally. I hope you are able to deal with the noise better than I am. My life, my career, and my sanity are all in shambles since this started. I had to give up a near six figure job because of the noise.
I have researched Meniere's a lot since I lost my career, trying to find a cure or even relief. As of now I have nothing. Some habuiate to their tinnitus and are fine, I am not one of those people. Mine is 750 Hz and 75 decibels constantly.

I am trying Diamox now and plan to try antivirals next. If those dont work I'm going to see about a cochlear implant.

Best of luck

Josh

How are you getting on? Any update on what you've tried?

 

[Jrblovsky]

How are you getting on? Any update on what you've tried?

I'm in a world of shit. Multiple high pitched tones, loud roaring 24/7. Insane pressure, pain. I'm really running out of patience honestly.

 

[Blue28]

I'm in a world of shit. Multiple high pitched tones, loud roaring 24/7. Insane pressure, pain. I'm really running out of patience honestly.

Hi @Jrblovsky, sorry to hear you're struggling too. Your symptoms sound very like mine... And like you I've searched for answers that could help and have found nothing. My cochlear hydrops was triggered after hearing damage from microsuction.

 

[Jrblovsky]

Hi @Jrblovsky, sorry to hear you're struggling too. Your symptoms sound very like mine... And like you I've searched for answers that could help and have found nothing. My cochlear hydrops was triggered after hearing damage from microsuction.

How do you function? I literally am bedridden several days a week, the noise is so extreme. I am contemplating ending my life. It's that bad.

 

[Blue28]

How do you function? I literally am bedridden several days a week, the noise is so extreme. I am contemplating ending my life. It's that bad.

With great difficulty. I have a 6 year old daughter... I live for her. I feel constantly ill, ear fullness that's debilitating, screeching multiple tones in my ears and head, hyperacusis... Sadness

 

[Matchbox]

I'm in a world of shit. Multiple high pitched tones, loud roaring 24/7. Insane pressure, pain. I'm really running out of patience honestly.

You had indicated giving antivirals and Diamox a try. How did that work out? Did you try it?

If it's that bad, I'd be asking for steroids injected in my ear.

Do you have actual hearing loss on an audiogram over time?

The onset totally sounds like inflammation if the noise was loud / impact level, it is not some impossibility.

Mine started "after" steroids, so a rebound response or fluid screw-up makes sense... but I'm having a lot of trouble getting doctors to give a damn enough for testing "before" things keep getting worse.

What do you hear in the mornings? Any low droning/wavering or "ear to seashell" like things? Bells?

Do you ever try head tapping for some relief or benzos?

It would be interesting to hear from other people with wavering low tinnitus about the head tapping. For me it provides a few seconds relief but I get a ramp up of a "whole bunch of sounds, wavering and bells" before it calms down to ringing... then back to what I always have.

When this all started for me, head tapping would get rid of the static and ringing, with no "post effect" just a slow return of the tinnitus... this all began while on steroids.

 

[Jrblovsky]

You had indicated giving antivirals and Diamox a try. How did that work out? Did you try it?

If it's that bad, I'd be asking for steroids injected in my ear.

Do you have actual hearing loss on an audiogram over time?

The onset totally sounds like inflammation if the noise was loud / impact level, it is not some impossibility.

Mine started "after" steroids, so a rebound response or fluid screw-up makes sense... but I'm having a lot of trouble getting doctors to give a damn enough for testing "before" things keep getting worse.

What do you hear in the mornings? Any

Do you ever try head tapping for some relief or benzos?

It would be interesting to hear from other people with wavering low tinnitus about the head tapping. For me it provides a few seconds relief but I get a ramp up of a "whole bunch of sounds, wavering and bells" before it calms down to ringing... then back to what I always have.

When this all started for me, head tapping would get rid of the static and ringing, with no "post effect" just a slow return of the tinnitus... this all began while on steroids.

Hi,

I've tried Diamox up to 1000 mg a day. I've done massive doses of antiviral treatments. In the last three months I've had three middle ear injections with Dexamethasone. After the injection I had intense, severe pain in my ear for roughly four hours. The next day the tinnitus and fullness went from 10/10 to 2/10 around 5pm. By 3am the next morning it was 10/10 again. When I wake up the roaring is typically unbearable. Large box fan next to my head and I can hear it clear as day.

I'm at 60 dB losses at all low frequencies. I was at 25 dB to 30 dB losses from 1 kHz to 8 kHz when it started. Now I'm at a 70 dB loss at 6 kHz and 8 kHz and getting worse in others too. No clue why. I had a very brief 4 or 5 second exposure to roughly 100 dB white noise 5 months ago and since then it has been unbearable. Junk Amazon noise machine was defective. The roaring had actually stopped then and returned roughly 4 days later.

Weird thing is when I went to have a chiro adjustment the noise was going down from severe to mild. This was s recent as a week ago.

The tinnitus is typically 10/10 and severe all the time. The roaring along with piercing high pitched noise is crazy. It cant be a solid tone it's like a bell or something but I feel like I can feel the noise in my ear.
The whole thing has me so frustrated. My ear feels stopped up and I have intense burning pain all the time. Plus the roaring onto the high pitched fleeting noise is unbearable. I'm honestly at my wits' end with this shit.

 

[Jrblovsky]

With great difficulty. I have a 6 year old daughter... I live for her. I feel constantly ill, ear fullness that's debilitating, screeching multiple tones in my ears and head, hyperacusis... Sadness

I feel bad for my wife. I also have a child whom I am having a great deal of difficulty providing for. I used to make a lot of money and my wife worked because she wanted to. Thankfully she has a decent job or we would be totally screwed.

 

[Jrblovsky]

I honestly begin to wonder if the steroids are causing more hearing loss. These doctors keep pushing the injections but I'm done being they don't seem to help. I can't understand why I'm losing my high frequencies either which has made the high pitched stuff way worse. It was moderately annoying before. Now it's unmaskable.

 

[Blue28]

My ear feels stopped up and I have intense burning pain all the time. Plus the roaring onto the high pitched fleeting noise is unbearable. I'm honestly at my wits' end with this shit.

This is EXACTLY how I am... It's just unbearable. I had little to no hearing loss in the low frequencies after the noise trauma, but now I do. The high frequency loss has also worsened. My ears feel constantly plugged up too. None of the doctors (ENTs and neurologists) have any clue, or even give a damn. I'm hanging on by the tips of my fingers

 

[FGG]

I honestly begin to wonder if the steroids are causing more hearing loss. These doctors keep pushing the injections but I'm done being they don't seem to help. I can't understand why I'm losing my high frequencies either which has made the high pitched stuff way worse. It was moderately annoying before. Now it's unmaskable.

I know you had asked your ENT about this but quickly progressive low frequency hearing loss can be a sign of a perilymph fistula. And acoustic trauma can cause it. Furthermore, intratympanic steroids especially can sometimes exacerbate it.

It's notoriously difficult for ENTs who don't specialize in it to diagnosis.

Rapidly progressive low frequency hearing loss is a very unusual.

 

[Jrblovsky]

I know you had asked your ENT about this but quickly progressive low frequency hearing loss can be a sign of a perilymph fistula. And acoustic trauma can cause it. Furthermore, intratympanic steroids especially can sometimes exacerbate it.

It's notoriously difficult for ENTs who don't specialize in it to diagnosis.

Rapidly progressive low frequency hearing loss is a very unusual.

Hi,

It seems the high frequencies are dropping off quicker but something is definitely wrong. Shouldn't that just heal up itself? The tinnitus is so extreme I literally am unable to do anything. I spend most of my time in bed or on the couch.

 

[Jrblovsky]

This is EXACTLY how I am... It's just unbearable. I had little to no hearing loss in the low frequencies after the noise trauma, but now I do. The high frequency loss has also worsened. My ears feel constantly plugged up too. None of the doctors (ENTs and neurologists) have any clue, or even give a damn. I'm hanging on by the tips of my fingers

So what has your doctor suggested besides living with it? I hate ENT doctors.

 

[FGG]

Hi,

It seems the high frequencies are dropping off quicker but something is definitely wrong. Shouldn't that just heal up itself? The tinnitus is so extreme I literally am unable to do anything. I spend most of my time in bed or on the couch.

If that's what you had: They can heal themselves sometimes with bed rest, etc. But anything that raises intracranial pressure (stress can activate the sympathetic nervous system and increase pressure but the pressure itself can also activate the sympathetic nervous system so it is a vicious cycle).

Not all heal on their own but some doctors are trying blood patches now with success instead of traditional surgery for those cases.

Regardless, you need a real diagnosis, though. Your ENTs have been pretty useless :/. You might need to get a few more opinions as frustrating as it is.

For my own hearing issues, I didn't get a good workup in my state so I saw Dr. Kopke in Oklahoma (at Hough Ear Institute). I live nowhere near Oklahoma. I know people are kind of down on Hough Ear Institute but I will say he was very, very thorough as a clinician (he retired to focus on research since I saw him, unfortunately). My point is, not all doctors are equal, even in the same practice. I have found the best ones are clinicians who also do research. Those are pretty rare though.

 

[wwtsai]

I honestly begin to wonder if the steroids are causing more hearing loss. These doctors keep pushing the injections but I'm done being they don't seem to help. I can't understand why I'm losing my high frequencies either which has made the high pitched stuff way worse. It was moderately annoying before. Now it's unmaskable.

Have you considered applying to Sound Pharmaceuticals' SPI-1005 Phase 3 clinical trial for Meniere's? One of the trial locations is the Michigan Ear Institute. I know you've had bad experiences with them, but this drug does look promising and could at least be something to try while you wait for other drugs like FX-322.

SPI-1005 for the Treatment of Meniere's Disease (STOPMD-3)

 

[Jrblovsky]

Have you considered applying to Sound Pharmaceuticals' SPI-1005 Phase 3 clinical trial for Meniere's? One of the trial locations is the Michigan Ear Institute. I know you've had bad experiences with them, but this drug does look promising and could at least be something to try while you wait for other drugs like FX-322.

SPI-1005 for the Treatment of Meniere's Disease (STOPMD-3)

I've thought about it, but now they aren't sure if I even have Meniere's. Absolute imbeciles.
I was planning to enroll but I'm not sure what to do. I can barely get out of bed most days and cannot imagine this getting any worse.

 

[Jrblovsky]

If that's what you had: They can heal themselves sometimes with bed rest, etc. But anything that raises intracranial pressure (stress can activate the sympathetic nervous system and increase pressure but the pressure itself can also activate the sympathetic nervous system so it is a vicious cycle).

Not all heal on their own but some doctors are trying blood patches now with success instead of traditional surgery for those cases.

Regardless, you need a real diagnosis, though. Your ENTs have been pretty useless :/. You might need to get a few more opinions as frustrating as it is.

For my own hearing issues, I didn't get a good workup in my state so I saw Dr. Kopke in Oklahoma (at Hough Ear Institute). I live nowhere near Oklahoma. I know people are kind of down on Hough Ear Institute but I will say he was very, very thorough as a clinician (he retired to focus on research since I saw him, unfortunately). My point is, not all doctors are equal, even in the same practice. I have found the best ones are clinicians who also do research. Those are pretty rare though.

I'm not sure what to do. I've been to five different doctors. And I'm not sure how to get them to give me answers. Honestly I don't give a shit if I do have Meniere's, I just want to get on with my life. I honestly think they are wrong being literally everyone I've spoken with that has Meniere's experiences episodes with remission. A lady I worked with has had Meniere's for 20+ years and doesn't have half the issues I have.

I'm honestly at my wits' end. I can't stand this roaring and loud ringing/hissing anymore.

 

[Forever hopeful]

Hi Josh,

I recently returned to this site after having my own spike.

I am so very sorry to hear about all that you're going through. I'm not sure where in the US you live but it seems quite disappointing that you cannot get any sound medical advice. I also don't know how old you are but it certainly seems like you are not at an age where hearing loss should be so prominent and drastic without some causative factor. I mean it certainly doesn't sound like it's age related hearing loss, which is more subtle over time. I'm just baffled that no physicians are able to help you and I think that is such a crime.

Assuming your hearing loss is not improving and I so hope it does, has anyone suggested hearing aids?

I just wonder if it might alleviate some of your symptoms if your general hearing improved. Of course, I'm not a physician so take it for what it is worth. I do know some people who have tinnitus and found some relief in using a hearing aid. I'm not saying it went away but improved.

Also, I hope you have a way to get some support for what you're going through. I know therapy and such is not for everybody but I hope you have a good support network.

Wishing you all the best and praying for you,
Danielle

 

[Blue28]

So what has your doctor suggested besides living with it? I hate ENT doctors.

Not a lot... Betahistine and a diuretic. That's it... I've noticed very little change.

 

[Jrblovsky]

Hi Josh,

I recently returned to this site after having my own spike.

I am so very sorry to hear about all that you're going through. I'm not sure where in the US you live but it seems quite disappointing that you cannot get any sound medical advice. I also don't know how old you are but it certainly seems like you are not at an age where hearing loss should be so prominent and drastic without some causative factor. I mean it certainly doesn't sound like it's age related hearing loss, which is more subtle over time. I'm just baffled that no physicians are able to help you and I think that is such a crime.

Assuming your hearing loss is not improving and I so hope it does, has anyone suggested hearing aids?

I just wonder if it might alleviate some of your symptoms if your general hearing improved. Of course, I'm not a physician so take it for what it is worth. I do know some people who have tinnitus and found some relief in using a hearing aid. I'm not saying it went away but improved.

Also, I hope you have a way to get some support for what you're going through. I know therapy and such is not for everybody but I hope you have a good support network.

Wishing you all the best and praying for you,
Danielle

Hi Danielle,

I've tried hearing aids with no improvement. I woke up this morning completely deaf on the right side. No clue why this continues to worsen. I just turned 34 years old.

 

[ajc]

I woke up this morning completely deaf on the right side.

I hope you're going for an immediate course of oral or intratympanic steroids!

 

[FGG]

I hope you're going for an immediate course of oral or intratympanic steroids!

Agree. I would throw everything you can at trying to save your hearing, @Jrblovsky.

 

[ajc]

Agree. I would throw everything you can at trying to save your hearing, @Jrblovsky.

Which pegs the question, do you know if it's proven if intratympanic steroids are more effective at restoring SSNHL than oral steroids?

 

[FGG]

Which pegs the question, do you know if it's proven if intratympanic steroids are more effective at restoring SSNHL than oral steroids?

Seems surprisingly comparable:

Efficacy of oral vs. intratympanic corticosteroids in sudden sensorineural hearing loss

 

[Forever hopeful]

@Jrblovsky, oh no, get on steroids right away. And if you can get the injections even better.

I can tell you that I have unilateral hearing loss and they're working me up for everything. Auto immune condition, Ménière's, acoustic neuroma, other tumor. I'm hoping they're going to do the same for you, as unilateral SSNHL is unique and not usual.

I'm not sure if I read your introduction but did you have an acoustic trauma in that ear? I wonder if it's damage that is delayed?

Sending healing thoughts your way.

Best,

Danielle

 

[Jrblovsky]

@Jrblovsky, oh no, get on steroids right away. And if you can get the injections even better.

I can tell you that I have unilateral hearing loss and they're working me up for everything. Auto immune condition, Ménière's, acoustic neuroma, other tumor. I'm hoping they're going to do the same for you, as unilateral SSNHL is unique and not usual.

I'm not sure if I read your introduction but did you have an acoustic trauma in that ear? I wonder if it's damage that is delayed?

Sending healing thoughts your way.

Best,

Danielle

No clue. I was actually taking Prednisone when this happened. I've been to many, many doctors all whom which cannot offer a thing. It's a lost cause at this point.

I did have a trauma in the right ear but it happened almost a year and a half ago. Who knows, just keeps getting worse.