Do I Have Acoustic Trauma (Microsuction) Induced Cochlear Hydrops or AIED?

[Liam_Cairns]

Hey guys, so I've obviously been on these forums for three years now since my tinnitus went from being stable to unstable due to microsuction. I have spent thousands of dollars on doctors' appointments and different drugs and I think I have finally come down to the conclusion that I possibly have acoustic trauma (microsuction) induced cochlear hydrops.

I have consulted with my ENT and he seems to think that it is either this or AIED (autoimmune inner ear disease).

All I know is that when I am exposed to either loud sound or intense exercise, my ears become really full feeling and my tinnitus becomes really pissed off and the only thing that seems to return it to baseline is corticosteroids, whilst benzos produce a transient reduction.

I also have noticed that Betahistine seems to help with the full feeling in my ears.

The only other things that I have really found to set off my ears are drugs that affect Serotonin in one way or another, which from my understanding is super common amongst all tinnitus sufferers.

I have suffered a couple of bouts of very brief vertigo over the past few years since the vertigo, however they have never been extreme enough to cause me concern and only ever happened after super strenuous weight lifting.

I have had mild hearing loss since the microsuction incident that has slowly increased, however, it is across pretty much all frequencies, not just low ones which is the norm with Meniere's. If anything, my low frequencies and ultra high frequencies seem relatively untouched, with my mid frequencies dropping around 10-15 dB.

I know asking for advice online is not normally advised but I just wanted to see what your guys take on this is. My doctor has offered to put me on 25 mg a week of Methotrexate (starting at 10 mg) to see if that will help abate my symptoms and since I respond so well to steroids.

Are there other treatments that I should try and give a go first?

 

[Vicki14]

Hey @Liam_Cairns, so sorry that you've experienced this after microsuction and I'd definitely say that this was the cause. Exact same thing happened to me, @Blue28 and many others after getting this unsafe procedure. My ears went from very mild tinnitus to very loud and unstable with hyperacusis.

I definitely wouldn't recommend microsuction to anyone! x

 

[Blue28]

Hi @Liam_Cairns, sadly as @Vicki14 pointed out, many people are being permanently harmed by microsuction. I also believe I suffer from cochlear hydrops following an acoustic trauma brought on by microsuction. This was over 5 years ago. After three months of researching my symptoms I came to the conclusion I had cochlear hydrops but as I don't have classic Meniere's symptoms, the doctors I saw dismissed my theory. My hearing fluctuates all the time but on the whole is on a steady decline. I suffer constant fullness, ear pain, extreme tinnitus, mild vertigo at times and like you, my hearing has dropped around 15 dB in all frequencies. I take a diuretic and Betahistine but my ent won't prescribe corticosteroids. I'm absolutely at my wits' end with it all.

I'm with @Vicki14 on this, microsuction is an extremely dangerous procedure that is needlessly damaging people's hearing (and much more as a result), and should be banned!

 

[Liam_Cairns]

Hi @Liam_Cairns, sadly as @Vicki14 pointed out, many people are being permanently harmed by microsuction. I also believe I suffer from cochlear hydrops following an acoustic trauma brought on by microsuction. This was over 5 years ago. After three months of researching my symptoms I came to the conclusion I had cochlear hydrops but as I don't have classic Meniere's symptoms, the doctors I saw dismissed my theory. My hearing fluctuates all the time but on the whole is on a steady decline. I suffer constant fullness, ear pain, extreme tinnitus, mild vertigo at times and like you, my hearing has dropped around 15 dB in all frequencies. I take a diuretic and Betahistine but my ent won't prescribe corticosteroids. I'm absolutely at my wits' end with it all.

I'm with @Vicki14 on this, microsuction is an extremely dangerous procedure that is needlessly damaging people's hearing (and much more as a result), and should be banned!

Yeah, I remember reading your story when I first joined Tinnitus Talk, Blue, I don't know if you really remember me but both you and Vicki were kind and supportive which I am forever thankful for.

If I may ask, have you ever tried LDN (Low-Dose Naltrexone), and also I wanted to ask if you find the diuretics helpful?

I was going to try giving those a go before stepping up and starting on Methotrexate.

As I personally believe (and this is total speculation), our group who suffers with this very specific form of cochlear hydrops that seems to be greatly aggravated by sound is almost an immune response to noise. In the way that some people with Meniere's can't touch salt our allergy is literally noise.

It is the only reasoning I can come up with why

a.) prednisone helps with most of my symptoms, and

b.) why noises that don't affect normal people have such a profound effect on our ears.

I think there is also a neurological component as I have found that mega dosing Clonazepam (2 mg or greater) seems to stop all the physiological symptoms as well, it's almost like the brain tells the body to attack the ears.

I hope this makes some kind of sense I have read a tonne of research papers and plan on starting a Master's in Audiology at some point in the future to help people like us who have been left behind.

 

[Lukee]

Yeah, I remember reading your story when I first joined Tinnitus Talk, Blue, I don't know if you really remember me but both you and Vicki were kind and supportive which I am forever thankful for.

If I may ask, have you ever tried LDN (Low-Dose Naltrexone), and also I wanted to ask if you find the diuretics helpful?

I was going to try giving those a go before stepping up and starting on Methotrexate.

As I personally believe (and this is total speculation), our group who suffers with this very specific form of cochlear hydrops that seems to be greatly aggravated by sound is almost an immune response to noise. In the way that some people with Meniere's can't touch salt our allergy is literally noise.

It is the only reasoning I can come up with why

a.) prednisone helps with most of my symptoms, and

b.) why noises that don't affect normal people have such a profound effect on our ears.

I think there is also a neurological component as I have found that mega dosing Clonazepam (2 mg or greater) seems to stop all the physiological symptoms as well, it's almost like the brain tells the body to attack the ears.

I hope this makes some kind of sense I have read a tonne of research papers and plan on starting a Master's in Audiology at some point in the future to help people like us who have been left behind.

I think you would be wise to try LDN before harsh steroids. Have you tried a mild diuretic (like dandelion tea) to see if it helps your symptoms? I believe LDN will help people with hydrops, inflammation or issues of an autoimmune origin. The problem is that there is still such an overlap and no one has done the research to figure out the correlation between hydrops and autoimmune conditions.

It's becoming generally accepted that autoimmune diseases can stem from stress to our system (physical, emotional, prolonged mental stress, etc.). I believe that many people, through some event actually develop a form of hydrops/AEID and that's where LDN might help the most. "Regular" tinnitus from noise exposure probably doesn't respond at all to LDN unless that stressor causes hydrops/AEID at which point LDN should help. You also mention that prednisone helps your symptoms which points to inflammation or issue in the CNS, both of which LDN has impact on.

BTW, if it turns out to be hydrops, there is an Italian doctor currently living in Vietnam, Dr. La Torre, who claims to treat hydrops. I have seen success stories and a few posts against him but generally I think his claims are legit.

I hope you get a positive result with whatever route you decide to take. Keep us updated.

 

[Ava Lugo]

Hi @Liam_Cairns, sadly as @Vicki14 pointed out, many people are being permanently harmed by microsuction. I also believe I suffer from cochlear hydrops following an acoustic trauma brought on by microsuction. This was over 5 years ago. After three months of researching my symptoms I came to the conclusion I had cochlear hydrops but as I don't have classic Meniere's symptoms, the doctors I saw dismissed my theory. My hearing fluctuates all the time but on the whole is on a steady decline. I suffer constant fullness, ear pain, extreme tinnitus, mild vertigo at times and like you, my hearing has dropped around 15 dB in all frequencies. I take a diuretic and Betahistine but my ent won't prescribe corticosteroids. I'm absolutely at my wits' end with it all.

I'm with @Vicki14 on this, microsuction is an extremely dangerous procedure that is needlessly damaging people's hearing (and much more as a result), and should be banned!

I'm curious, because I think in one of your posts you said that your tinnitus is reactive, do you still listen to music and watch TV or does it sound distorted because your tinnitus intrudes during those times?

I am sorry to hear about your microsuction experience.

 

[Blue28]

Hi @Liam_Cairns, I just saw your message, I'm not on here as often as I used to be. Thanks for the kind words. How are you? Have you tried anything new?

For me things are pretty much the same. I still take betahistine and the diuretic, I find that it mildly helps my condition. My tinnitus is crazy loud though and I have a constant fullness in my ears, which gets worse with noise. I had my hearing tested a few months back and my mid to high frequencies have decreased. I don't know if this is a kind of AIED, but that's the only reason I can think why my hearing/tinnitus is worsening. My ent says he thinks it's a natural decrease... I don't agree one bit. Presbycusis in your 60s OK, but not in your 40s... All my issues started immediately after the microsuction!

 

[Juan]

induced cochlear hydrops.

That's a bit of a tailor's drawer for some ENTs. What induced your doctor to think you have either "cochlear hydrops or AIED", which are different things?

I have had mild hearing loss since the microsuction incident that has slowly increased, however, it is across pretty much all frequencies, not just low ones which is the norm with Meniere's. If anything, my low frequencies and ultra high frequencies seem relatively untouched, with my mid frequencies dropping around 10-15 dB.

Hearing loss, as clinically defined nowadays, is loss higher than 20 dB, and for some, higher than 25-30 dB. A drop of 15 dB can be attributed to a ton of things... and it is not defined as "hearing loss" by normal standards.

 

[Liam_Cairns]

That's a bit of a tailor's drawer for some ENTs. What induced your doctor to think you have either "cochlear hydrops or AIED", which are different things?

Hearing loss, as clinically defined nowadays, is loss higher than 20 dB, and for some, higher than 25-30 dB. A drop of 15 dB can be attributed to a ton of things... and it is not defined as "hearing loss" by normal standards.

Hey, what I meant was my frequencies dropping by 10-15 dB on top of my original audiogram, e.g. going from 10 dB to 20 dB on certain frequencies.

AIED and hydrops can have very similar symptomology. I'm not really sure what you want me to say, there was a tonne of cross-over symptom wise so they thought I could have one or the other? I started taking dieuretics and have experienced significant relief but not total, which leads me to believe that it is hydrops.

 

[Juan]

Hey, what I meant was my frequencies dropping by 10-15 dB on top of my original audiogram, e.g. going from 10 dB to 20 dB on certain frequencies.

Ok, I did not understand that from your original post.

I started taking dieuretics and have experienced significant relief but not total, which leads me to believe that it is hydrops.

Yes, if diuretics work then it is probably hydrops.

 

[jack8092]

Hey, what I meant was my frequencies dropping by 10-15 dB on top of my original audiogram, e.g. going from 10 dB to 20 dB on certain frequencies.

AIED and hydrops can have very similar symptomology. I'm not really sure what you want me to say, there was a tonne of cross-over symptom wise so they thought I could have one or the other? I started taking dieuretics and have experienced significant relief but not total, which leads me to believe that it is hydrops.

@Liam_Cairns, thank you for your post.

It seems that we have very similar symptoms and identify causes for the problems (negative pressure shock). Since the trauma (9 months ago), I have had permanent aural fullness that gets stronger after physical exercise. I used to run 10km. Now, after running 0,5km, the fullness gets to unbearable levels. I also have reactive tinnitus and soft fluttering when putting a finger into my ear. My hearing is lower (15-20 dB) in the low frequencies, and I hear crackling in my left ear when I swallow and click in my right ear when I run.

Improvements: The fullness improved by about 50% in the last nine months. I no longer have a tingling and wet feeling in my ear.

I did not try much medication so far as I thought it was TTTS, which does not have a clear medical recommendation. I was at Brai3n clinic in Belgium, where I was prescribed antipsychotic Deanxit. However, due to the side effects, I could not take it. Currently, I am on a low dose of Baclofen (5 mg x 3), but it does not seem to have a significant impact.

Thanks for your post and prof. Bance's recommendation, I started investigating the possibility of hydrops. I plan to try intratympanic steroids injection or Prednisone (not sure yet) and diuretics. Dr. De Ridder (Brai3n) also recommended a low dose of Aripiprazole which affects Serotonin receptors.

Please, do you have any recommendations? What was your progress since the trauma? Thanks!

 

[Ant315]

@Liam_Cairns, how are you doing now? I'm almost 4 weeks in after microsuction with no reprieve.