Tinnitus Getting Worse and New Hearing Loss: Could I Have Cochlear Hydrops?

[S12345]

Hi all.

I have suffered from tinnitus and 90% hearing loss in one ear since 2014. ENT doctor did an XRay but never found the cause.

Over the past 3 months I have developed mild hearing loss (15%) in the other ear and the tinnitus which was in the background is now overwhelming. It's the main thing I hear all the time and is really loud.

Any ideas? I don't think it's Meniere's as my tinnitus is there all the time, plus I have no vertigo.

Could it be Cochlear Hydrops?

Happy to hear suggestions however obscure to go to ENT doctor with. At present I just feel like jumping off the nearest bridge!

 

[Jrblovsky]

I'm sorry to hear of your struggle. I have cochlear hydrops and it progressively destroys your inner ear. Mine has progressed from a 10% loss in January of this year to 50% now. I have severe tinnitus and the pressure in the ear is really bad. I hope you find relief. I'm a total disaster.

 

[DebInAustralia]

Hi all.

I have suffered from tinnitus and 90% hearing loss in one ear since 2014. ENT doctor did an XRay but never found the cause.

Over the past 3 months I have developed mild hearing loss (15%) in the other ear and the tinnitus which was in the background is now overwhelming. It's the main thing I hear all the time and is really loud.

Any ideas? I don't think it's Meniere's as my tinnitus is there all the time, plus I have no vertigo.

Could it be Cochlear Hydrops?

Happy to hear suggestions however obscure to go to ENT doctor with. At present I just feel like jumping off the nearest bridge!

@Samantha R

 

[Samantha R]

I'm sorry to hear of your struggle. I have cochlear hydrops and it progressively destroys your inner ear. Mine has progressed from a 10% loss in January of this year to 50% now. I have severe tinnitus and the pressure in the ear is really bad. I hope you find relief. I'm a total disaster.

sorry to hear about your cochlear hydrops.
Ear pressure can be relieved and hearing May recover with the help of a diuretic.
This will drain the ear of fluid and proactively prevent fluid build up.
If you can keep the fluid at bay, you will slow the progression of the hydrops.
You might also want to read about the John of Ohio regimen which is a supplement regimen based on the theory that the herpes virus gets into the inner ear and causes Meniere's / Cochlear Hydrops.
One last recommendation would be to explore autoimmune causes.
my specialist believes that a large proportion of a Meniere's and cochlear hydrops is auto immune in nature.
she typically puts patients on high doses of steroids to see if this helps.
If so, then the cause might be autoimmune and steroid drops can be administered to the inner ear via a grommet.
I lost low frequency hearing this year in June, had horrible tinnitus, hyperacusis and diplacusis. I was suicidal.
Moduretic was my saviour and though I didn't appear to respond to prednisolone, I took an immune modulating drug called low dose naltrexone. I've been symptom free for nearly three months now.

@S12345
sorry to hear about your struggles.
Do you have other symptoms - ear pressure, ear fullness? In your 'good' ear, is the hearing loss low or high frequency?
Typically, hydrops hearing loss begins in the low frequencies.
Cochlear hydrops is basically Meniere's without the vertigo / vestibular symptoms and treatment is the same.

 

[Jrblovsky]

Dear Samantha,

Which doc do you see? The doctors I have seen in the metro Detroit area have been useless. I've seen five in total and still have no firm diagnosis. It's a guess. I will travel out of state at this point.

 

[S12345]

@Samantha R It's at 50 dB -60 dB mainly, although high frequencies have dropped to 35 dB. I've had prednisolone but did not do anything. I will ask about Naltrexone.

 

[S12345]

To update:

I have had 2 intra-tympanic injections. After the first the audiogram showed an improvement with some of the hearing returning to normal in the mid range frequencies.

I had another on Thursday and all went well... untill 7pm yesterday. I had heard fine on my Teams calls for work and on a 1hr call to my mum. Then just after 7pm nothing. I couldn't hear anything - I was lip reading the TV at volume 40 (so basically watching a quiz show where I couldn't hear a single thing) . This morning my other half is literally having to stand right next to me for me to hear him and even with aids in all sounds seem really quiet.

Is this just an effect - will it go or is it more that the treatment hasn't worked? I was hopeful as it made a difference. I have another Friday and I am dreading the audiogram and them saying it is not worth doing.

 

[Kendra]

I would ask to keep doing it even if they say it's not worth it. Also maybe ask to go in oral prednisone at the same time?

 

[Samantha R]

Dear Samantha,

Which doc do you see? The doctors I have seen in the metro Detroit area have been useless. I've seen five in total and still have no firm diagnosis. It's a guess. I will travel out of state at this point.

Sorry I didn't see your post until now.
I'm in Australia, so can't help with doctors.
A good start is to find an otoneurologist as opposed to an ENT.
Also, there may be a support group on FaceBook for Meniere's - an Australian one I joined referred me on to my current doctor.

 

[S12345]

I had formal diagnosis of cochlear hydrops yesterday. Has anyone tried any treatment that has restored some of their hearing?

 

[Kendra]

I had formal diagnosis of cochlear hydrops yesterday. Has anyone tried any treatment that has restored some of their hearing?

The only treatments I'm aware of are steroids and a diuretic + lowering salt and sugar intake. If that takes down the fluid build up in the inner ear some hearing may come back.

 

[Juan]

I had formal diagnosis of cochlear hydrops yesterday. Has anyone tried any treatment that has restored some of their hearing?

How are you doing? did you get some of your hearing back?

The last ENT I visited suspects I might have some form of hydrops too. To me this is really surprising after years of hyperacusis which was obviously due to noise.

However, along the road there was also a virus that attacked one of my eyes, and skin problems for which I cannot really find a cause... my guess is this may be autoimmune, but I still have not discovered the cause, maybe it is due to different contributing factors.

 

[Juan]

I had formal diagnosis of cochlear hydrops yesterday. Has anyone tried any treatment that has restored some of their hearing?

By the way, I think there may be surgery for this, endolymphatic sac decompression... maybe you can explore this with your doctor, see if it is an option for you.

 

[S12345]

Hi @Juan,

In terms of an update. I did recover some hearing for about 2 months. Three of the points on my audiogram went from 40 dB to 20 dB. Since then they fluctuate for weeks at a time. On a good day I don't need hearing aids, on a bad day I can't hear with the hearing aids in. I am currently doing a second round of steroid injections as the last dip seems to have lasted longer than normal. I am also on Betahistine which is frankly why I am still here as it made my tinnitus recede to be background and also makes it so that I know when the tinnitus is full on the hearing is dipping. I have also found avoiding caffeine and low salt helps.

 

[Jrblovsky]

Do you guys notice your low pitched tinnitus gets louder if you push on your ear or move your neck?

My right ear has been stopped up for 14 months and my hearing has not fluctuated at all to a positive note. I seriously think my eustachian tube is blocked or stuck partially open. Being it seems my roaring cannot be pitched matched and it randomly goes down in volume and then back to insane levels. Also if I do the valsalva maneuver my left ear closes correctly and the right sorta does but then when I swallow the left will pop but the right just feels like it's trying but won't. This is so frustrating.

 

[S12345]

An update.

I have my 5th course of intratympanic injections starting next week as hearing loss seems to decrease every 2 months. Getting fed up.

However, bloods show raised anti cardiolipid antibodies which are being explored for autoimmune causes. Anyone else had this?

 

[S12345]

Just an update:

I am very lucky to have a new Consultant (old one was useless) who has left no stone unturned. They put me on Serc which massively reduced the tinnitus, plus did a proper MRI and referred to a rheumatology specialist.

I've been on immune suppressants for 4 months and, whilst not improved, it has kept the stability and meant not stuck in a cycle of worsening hearing loss which ATM is the goal.

Plus, I now got decent hearing aids.