Experiences with Autoimmune Inner Ear Disease (AIED)?

[Matchbox]

Hey everyone,

It's been a while since I posted in here. I was briefly doing better when suddenly I took a turn for the worse out of seemingly nowhere (was listening to work colleagues at meetings when I suddenly developed new low tones).

I am actively trying to at least keep myself "stable" so as to make a life and maybe improve, but that's impossible as this gets worse without a diagnosis. What started as simply "sound damage" has progressed to something else entirely over 4 months.

I was curious if anyone with Meinere's or AIED could chime in as to what their symptoms and attacks were like.

Did you experience wavering low tones (as if hearing a sink drain or inside a seashell)?

Thudding loud low frequency intermittent tinnitus?

Balance issues?

My hearing tests keep coming back with "some" drops in low frequencies. The kicker is, unlike the higher frequencies, when they are barely heard, they are barely heard.
Anything below 750 Hz, once it's "barely heard" my tinnitus goes ape-poop. Absolutely nuts, and it's around that frequency. The tone blurs from a beeping to a wavering that bounces from left and right in my skull. I can barely hear it, but what I hear is a mess... but it's still the tone.

My reactive tinnitus is definitely taking on more and more low tones, and I've had complete random bouts of ear fullness (it's mostly my right, but my left ear isn't doing well either).

I need to get another proper audiogram done to confirm or an OAE test to see what's actually going on.

Every SINGLE time I have been on Prednisone and come off (3 times), these "low tones and seashell sounds" got WORSE permanently.

I had one night where I exercised and listened to music on speakers, my ears were ringing but calmed down at dinner and for the rest of the night.
That night I went to bed and as I fell asleep I heard a flurry of chimes in my entire head, and saw a thousand tiny sparkles in my vision... I was using a benzo pill and this occurred falling to bed... I awoke to... guess what? NEW chimes, which since disappeared.

After trying HBO (12th time) I had a moment where all tones disappeared, and then out of nowhere sound effects began popping into existence. This was the catalyst of when I began to experience sound distortion.
Only benzos could limit their volume / intrusion into life.

Noone has a damn clue what's happening/happened to me, my theory is I had some kind of auditory seizure, twice... but I really don't know as I'm getting these other symptoms.

My partner mentioned that I have an autoimmune skin disorder, and perhaps maybe the Prednisone and that condition are connected to what's happening to me.

Note while ON Prednisone, my symptoms never got worse. Only ever coming off of it.

Unknown if connected points:
I feel a tad unsteady sometimes when hearing the low tinnitus... but generally no balance issues at all (very slight vertigo... but I have had that before the onset of tinnitus). It isn't some huge concerning thing.

Finally, I've begun getting flashes in my eyes (as if lightning went off but I wasn't looking at it directly) which goes across the edges of my vision only. It is not retinal detachment (checked). It is in "both" eyes, so I find it unlikely that it's PVD in both (a non big deal), but could be as I'm 30 and have floaters...s o who knows.

A week ago my right eye only went completely (and I mean completely) white in my vision for a split second when going to sleep, and my tinnitus (and perhaps all hearing, couldn't tell as it's very quiet in bed) went DEAD silent, and then everything snapped back to "normal".
No other vision issues (light visual snow but have had that since I was little).
It could be some glitch and something totally unrelated.


Since then, and doing my fulltime work my symptoms have worsened with more low tones and low frequency loss (I'm totally sure I've already lost 10 dB @ 150 Hz), followed by MORE seashell sounds and MORE tinnitus that sounds like the beeps on the hearing test where I have loss.

The insanely low intermittent thudding is impossible to get used to (sounds like below 150 Hz) as well as an intermittent ring upon hearing ANY white noise which is in both ears at 500 Hz.

I score very well at 50 0Hz (5 dB and 0 dB levels) but like the other low sounds, when I approach "inaudible" it becomes a complete HOGWASH where the beeps are not consistent and bounce around my left and right ears... as if it's hitting the reactive tinnitus and causing it to spike.
To experiment further I've found that basically right at 480 Hz I perceive that tone at probably half to 2/3 normal volume (real world measurements, Audacity).

Anyone had any connection with these symptoms or can tell me if you have had something similar?

I can't be the only crazy.

 

[Samantha R]

@Matchbox,

I feel like I can sympathise and understand what you are going through.

About 6 months ago, after an IVF cycle, I developed what I now believe was cochlear hydrops (Meniere's without the vertigo).

Low frequency hearing loss, horrendous ear pressure, aural fullness, hyperacusis and diplacusis.

I was put on Prednisolone and misdiagnosed with SSNHL.

Prednisolone did not help, and I eventually worked out I needed a diuretic.

That worked like a charm and I take one a day now as a preventative.

I saw a wonderful ENT who is well versed in Meniere's and she firmly believes a lot of Meniere's cases are autoimmune in nature.

She puts her patients on Prednisolone and if they respond, well that's indicative of AIED.

What struck me with your story was that I too had the flashes in my vision, only occasionally, whilst in the midst of my flare up, Usually when falling asleep, but bright enough to fully wake me up again.

My thoughts would be to try a diuretic maybe.

The thumping could be middle ear myoclonus which I get with the hydrops, both times I've had an 'episode'. The fluid build up in the inner ear must disturb the middle ear muscles ? I don't know....

I think the seashell sound effect is quite common in low frequency loss, a few people in my Meniere's Facebook group complain of low frequency tinnitus like that.

I don't know if I've helped, but maybe treat this as Meniere's and see if you have any luck. Lower your salt, try a diuretic and even Betahistine.

 

[Juan]

@Matchbox,

I feel like I can sympathise and understand what you are going through.

About 6 months ago, after an IVF cycle, I developed what I now believe was cochlear hydrops (Meniere's without the vertigo).

Low frequency hearing loss, horrendous ear pressure, aural fullness, hyperacusis and diplacusis.

I was put on Prednisolone and misdiagnosed with SSNHL.

Prednisolone did not help, and I eventually worked out I needed a diuretic.

That worked like a charm and I take one a day now as a preventative.

I saw a wonderful ENT who is well versed in Meniere's and she firmly believes a lot of Meniere's cases are autoimmune in nature.

She puts her patients on Prednisolone and if they respond, well that's indicative of AIED.

What struck me with your story was that I too had the flashes in my vision, only occasionally, whilst in the midst of my flare up, Usually when falling asleep, but bright enough to fully wake me up again.

My thoughts would be to try a diuretic maybe.

The thumping could be middle ear myoclonus which I get with the hydrops, both times I've had an 'episode'. The fluid build up in the inner ear must disturb the middle ear muscles ? I don't know....

I think the seashell sound effect is quite common in low frequency loss, a few people in my Meniere's Facebook group complain of low frequency tinnitus like that.

I don't know if I've helped, but maybe treat this as Meniere's and see if you have any luck. Lower your salt, try a diuretic and even Betahistine.

I am trying two medications right now: brand names are Higrotona (chlortalidone) and Clinadil (cinnarizine etc).

So far no success at all, those 2 medications did nothing at all, I don't feel any difference really .. in theory these are medications that could work in case of cochlear hydrops. My doctor prescribed them on suspicion my hyperacusis could have some connection with hydrops, although my hyperacusis is clearly due to noise.

Have you been prescribed any drugs specifically for hydrops?

 

[Juan]

Hey everyone,

It's been a while since I posted in here. I was briefly doing better when suddenly I took a turn for the worse out of seemingly nowhere (was listening to work colleagues at meetings when I suddenly developed new low tones).

I am actively trying to at least keep myself "stable" so as to make a life and maybe improve, but that's impossible as this gets worse without a diagnosis. What started as simply "sound damage" has progressed to something else entirely over 4 months.

I was curious if anyone with Meinere's or AIED could chime in as to what their symptoms and attacks were like.

Did you experience wavering low tones (as if hearing a sink drain or inside a seashell)?

Thudding loud low frequency intermittent tinnitus?

Balance issues?

My hearing tests keep coming back with "some" drops in low frequencies. The kicker is, unlike the higher frequencies, when they are barely heard, they are barely heard.
Anything below 750 Hz, once it's "barely heard" my tinnitus goes ape-poop. Absolutely nuts, and it's around that frequency. The tone blurs from a beeping to a wavering that bounces from left and right in my skull. I can barely hear it, but what I hear is a mess... but it's still the tone.

My reactive tinnitus is definitely taking on more and more low tones, and I've had complete random bouts of ear fullness (it's mostly my right, but my left ear isn't doing well either).

I need to get another proper audiogram done to confirm or an OAE test to see what's actually going on.

Every SINGLE time I have been on Prednisone and come off (3 times), these "low tones and seashell sounds" got WORSE permanently.

I had one night where I exercised and listened to music on speakers, my ears were ringing but calmed down at dinner and for the rest of the night.
That night I went to bed and as I fell asleep I heard a flurry of chimes in my entire head, and saw a thousand tiny sparkles in my vision... I was using a benzo pill and this occurred falling to bed... I awoke to... guess what? NEW chimes, which since disappeared.

After trying HBO (12th time) I had a moment where all tones disappeared, and then out of nowhere sound effects began popping into existence. This was the catalyst of when I began to experience sound distortion.
Only benzos could limit their volume / intrusion into life.

Noone has a damn clue what's happening/happened to me, my theory is I had some kind of auditory seizure, twice... but I really don't know as I'm getting these other symptoms.

My partner mentioned that I have an autoimmune skin disorder, and perhaps maybe the Prednisone and that condition are connected to what's happening to me.

Note while ON Prednisone, my symptoms never got worse. Only ever coming off of it.

Unknown if connected points:
I feel a tad unsteady sometimes when hearing the low tinnitus... but generally no balance issues at all (very slight vertigo... but I have had that before the onset of tinnitus). It isn't some huge concerning thing.

Finally, I've begun getting flashes in my eyes (as if lightning went off but I wasn't looking at it directly) which goes across the edges of my vision only. It is not retinal detachment (checked). It is in "both" eyes, so I find it unlikely that it's PVD in both (a non big deal), but could be as I'm 30 and have floaters...s o who knows.

A week ago my right eye only went completely (and I mean completely) white in my vision for a split second when going to sleep, and my tinnitus (and perhaps all hearing, couldn't tell as it's very quiet in bed) went DEAD silent, and then everything snapped back to "normal".
No other vision issues (light visual snow but have had that since I was little).
It could be some glitch and something totally unrelated.


Since then, and doing my fulltime work my symptoms have worsened with more low tones and low frequency loss (I'm totally sure I've already lost 10 dB @ 150 Hz), followed by MORE seashell sounds and MORE tinnitus that sounds like the beeps on the hearing test where I have loss.

The insanely low intermittent thudding is impossible to get used to (sounds like below 150 Hz) as well as an intermittent ring upon hearing ANY white noise which is in both ears at 500 Hz.

I score very well at 50 0Hz (5 dB and 0 dB levels) but like the other low sounds, when I approach "inaudible" it becomes a complete HOGWASH where the beeps are not consistent and bounce around my left and right ears... as if it's hitting the reactive tinnitus and causing it to spike.
To experiment further I've found that basically right at 480 Hz I perceive that tone at probably half to 2/3 normal volume (real world measurements, Audacity).

Anyone had any connection with these symptoms or can tell me if you have had something similar?

I can't be the only crazy.

My tinnitus does change, depending on tiredness, stress, sound exposure etc etc, and sometimes just for the sake of it, without any known cause or connection.

That said, I still do not understand if you have hearing loss or not... nowadays ENTs say that only a drop exceeding 20 dB is clinically considered hearing loss.

 

[Samantha R]

I am trying two medications right now: brand names are Higrotona (chlortalidone) and Clinadil (cinnarizine etc).

So far no success at all, those 2 medications did nothing at all, I don't feel any difference really .. in theory these are medications that could work in case of cochlear hydrops. My doctor prescribed them on suspicion my hyperacusis could have some connection with hydrops, although my hyperacusis is clearly due to noise.

Have you been prescribed any drugs specifically for hydrops?

Hi Juan,

Yes, I'm taking Moduretic (a diuretic) and I was also prescribed Betahistine.
Personally, I think a diuretic is essential to drain the excess fluid from the inner ear, worked a treat for me.

Might be worth a try?

Sam

 

[Juan]

Hi Juan,

Yes, I'm taking Moduretic (a diuretic) and I was also prescribed Betahistine.
Personally, I think a diuretic is essential to drain the excess fluid from the inner ear, worked a treat for me.

Might be worth a try?

Sam

Thanks for the advice! I am going to ask my doctor about Moduretic. I am trying two medications right now: brand names are Higrotona (chlortalidone) and Clinadil (cinnarizine etc).

The thing is I have always heard that it is important to have a low salt diet and low sugar diet, and avoid caffeine etc...

However, I have small quantities of all the "forbidden" food items, like olives, tea, cheese, chocolate, almost daily, and I do not really feel any adverse reaction. My diet includes most of the items of a healthy diet, like fruit, vegetables etc. Bread is kind of tricky, I guess, as it is of such a bad quality where I live..

I sometimes feel an adverse reaction only when I have coffee, for instances, a temporary tinnitus spike.

How do you feel after exercise? Do you experience any reaction, in terms of your tinnitus spiking, subsiding or fading temporarily?

How do your ears react to noise, let's say a motorbike passing by. Is your tinnitus or your hearing affected afterwards?

 

[Kriszti]

@Samantha R

Are you on a Meniere's diet currently?

Although I don't think that I have hydrops, because I only have the recurring low hum (working hard on making me insane for more than 3 months now), some really slight ear clogging here and there, but I may try out the diet to see how my sound reacts to it. Atypical MEM is more likely for me, I guess.

Do you think, one needs to follow a set-up, special diet, or it's enough if I lower my sodium intake? Do you think it requires medical assistance to start a diet like that?

 

[Forever hopeful]

So I had a hearing test today and in less than 10 months I have experienced additional hearing loss in my left ear. My ENT agreed to put me on steroids and suggested I see a rheumatologist and otologist to rule out AIED.

I'm absolutely terrified. I've read up a little bit on it and none of it looks good.

Does anyone on Tinnitus Talk have any experience with this or been diagnosed with this?

Thanks in advance.

 

[Matchbox]

Any examples of how bad it's declined and what frequency? Both ears?

 

[Matchbox]

I don't know. Suddenly this evening I have a low thudding at 120 Hz in my ears which became a hum. Terrifying. Reacts to any impulse sound like footsteps or keys. Like a yoga ball bounce. Insanely loud. Like 45 dB sounding and thudding behind my head. Seems to be unilateral though once it hums.

Ears are hurting for no reason. I raised my voice... they fluttered was that all it took? When I swallow I hear a ton of clicking too very loud...

I also took Magnesium, Potassium and Zopiclone the night before. Not tonight. Why the insaneness.

 

[Forever hopeful]

@Matchbox, there have been no changes in my right ear. It is fine. May of last year after I developed tinnitus in my left ear (seashell noise) they noted a significant drop in one tone (mid frequency) to 30 dB from 10 dB or 15 dB when last tested in 2016. Given my age, 25 dB is considered the cut off before they call it mild hearing loss. Last year they didn't even want to give me Prednisone but I begged them so they did. It clearly didn't help because my recent audiogram did not show any improvement in my hearing. The ENT thought maybe I had had a virus last year because it was affecting only one ear and apart from that one frequency, everything was else still within normal limits. They retested me yesterday and that same tone dropped 5 more dB. Last year they just kept telling me the loss was so ridiculously mild and was within the standard deviation of being normal.

The audiologist who tested me last year was the one that tested me again yesterday and she said I am still performing in the same range in my left ear with the exception of that one frequency that is now at 35 dB, but It also appears that I have a higher frequency that dropped down to 25 dB but still considered normal.

Then last night the ENT called me saying there was definitely a threshold shift, although all but one frequency are still considered normal but wanted to try me on Prednisone. Then she suggested that it could be an autoimmune condition. I looked it up and I don't really have any of the other symptoms. I have no vestibular issues. A little fullness in that ear on and off which I also had last year.

Interestingly, when this first happened I was actually on an immune suppressant for eczema. I would think that if AIED was the etiology, this would never have happened last year because my immune system was completely suppressed.

They are thinking now that I need a full work up including an MRI of my brain. You can imagine how utterly terrified I am.

 

[FGG]

I don't know. Suddenly this evening I have a low thudding at 120 Hz in my ears which became a hum. Terrifying. Reacts to any impulse sound like footsteps or keys. Like a yoga ball bounce. Insanely loud. Like 45 dB sounding and thudding behind my head. Seems to be unilateral though once it hums.

Ears are hurting for no reason. I raised my voice... they fluttered was that all it took? When I swallow I hear a ton of clicking too very loud...

I also took Magnesium, Potassium and Zopiclone the night before. Not tonight. Why the insaneness.

Sounds a bit like Tensor Tympani symptoms. It can interfere with proper Eustachian tube function as well which can give you a low tone.

 

[Matchbox]

Hi Juan,

Yes, I'm taking Moduretic (a diuretic) and I was also prescribed Betahistine.
Personally, I think a diuretic is essential to drain the excess fluid from the inner ear, worked a treat for me.

Might be worth a try?

Sam

What was / is your dose of the diuretic?

The old thumping has turned into a new LOW tone and is not going away... so yeah I'm getting worse for no reason I know of and am terrified.

If it is autoimmune I should be on Prednisone... every time I've come off it I've had a massive worsening in the night of and morning however once I stop taking it (brand new seashell sounds, gradual return of hums and bells, and feeling like I came out of a concert).

 

[Samantha R]

What was / is your dose of the diuretic?

The old thumping has turned into a new LOW tone and is not going away... so yeah I'm getting worse for no reason I know of and am terrified.

If it is autoimmune I should be on Prednisone... every time I've come off it I've had a massive worsening in the night of and morning however once I stop taking it (brand new seashell sounds, gradual return of hums and bells, and feeling like I came out of a concert).

My dose of diuretic is 50mg of Moduretic.

If you respond to prednisolone then consider seeing an immunologist who can prescribe an immune suppressant that you can take for a longer period of time.

 

[Samantha R]

@Samantha R

Are you on a Meniere's diet currently?

Although I don't think that I have hydrops, because I only have the recurring low hum (working hard on making me insane for more than 3 months now), some really slight ear clogging here and there, but I may try out the diet to see how my sound reacts to it. Atypical MEM is more likely for me, I guess.

Do you think, one needs to follow a set-up, special diet, or it's enough if I lower my sodium intake? Do you think it requires medical assistance to start a diet like that?

Late reply, sorry. How you doing these days?

I stopped the diet because salt does not affect my Hydrops. I just eat what I want. I'm 24 weeks pregnant atm and a bit on edge about a recurrence of the Hydrops either during or after the pregnancy.

@Juan, how are you doing these days? I had horrible sound distortion with low frequency sounds because of the hearing loss. Being in a pharmacy for example, sounded like a train station. I needed to be in quiet environments.

The kettle boiling sounded like thunder. It was so awful, I was so distressed. Exercise didn't really affect my ears one way or the other.

 

[Kriszti]

@Samantha R, congrats on the little one.

 

[IntotheBlue03]

@Matchbox, what you describe between an autoimmune skin condition and the white flashes in your peripheral is exactly what's happening to me.

I've had what appears to be very mild psoriasis for a few months (took a microbiome test that revealed I have the bacterial makeup for it at least) and the flashes have been increasing and look like small white spots going across the very top of both of my eyes (I am high myopic and have floaters as well but this is such a strange symptom).

2 weeks ago the tinnitus started which was sudden and is constant at a very high frequency along with ear fullness and random sharp ear pains in both ears.

Have you been diagnosed with anything else?

I'm terrified this is undiagnosed AEID, though I've had 2 normal audiograms (I still suspect high frequency hearing loss).

 

[Matchbox]

@Matchbox, what you describe between an autoimmune skin condition and the white flashes in your peripheral is exactly what's happening to me.

I've had what appears to be very mild psoriasis for a few months (took a microbiome test that revealed I have the bacterial makeup for it at least) and the flashes have been increasing and look like small white spots going across the very top of both of my eyes (I am high myopic and have floaters as well but this is such a strange symptom).

2 weeks ago the tinnitus started which was sudden and is constant at a very high frequency along with ear fullness and random sharp ear pains in both ears.

Have you been diagnosed with anything else?

I'm terrified this is undiagnosed AEID, though I've had 2 normal audiograms (I still suspect high frequency hearing loss).

My diagnosis has gone nowhere.

I do have pityriasis lichenoides which could signify autoimmunity issues.

My most prevalent reproducible symptoms are:

1) Having my head below my body lying down (below horizon) will cause the seashell sounds to explode in volume until I'm right side up. Both ears, one ear louder. "Might" induce some lateral spinning vertigo (very mild).

2) If I do the Reddit head tap to inhibit my tinnitus, it quiets it very briefly, then snaps back like a tsunami of sound with bells, drones and all sorts of hell... for about a minute. Then it slowly ramps down over 2 minutes to almost silence... and then comes back to baseline. It is literally like a pendulum moving from silence to suicidal to silence again.

3) The flashes have become much milder over time and involve the entire visual field. On the "whole" the sounds are lesser in the morning.

4) Diuretics or low doses of Dexamethasone may be helping.

5) I have an enormous air bone gap in low frequencies. but my low frequency hearing is still "normal". 20 dB. I can hear 250 Hz down to -20 dB by bone conduction.

6) SSCD seems to be ruled out. If it's a fistula I don't know how I'll ever know. My symptoms sound nothing like otosclerosis (wasn't visible via CT scan).