Weird Tinnitus Has Spread to My Good Ear

[ozzienam]

Hello, I have been told by my neuro-otologist that I likely have Cochlear Hydrops (unilateral), although we haven't completely ruled out possibly Auto Immune Ear Disease.
My affected ear suffers frequent fluctuations of prolonged hearing loss and short bouts of recovery, bad tinnitus and bouts of hyperacusis as well. I also suffer from diplacusis when my hearing is bad and voices sound robotic due to low frequency loss. I have been suffering ever since my sudden sensorineural hearing loss (SSHL) occurred 5 months ago.

Over the last two weeks I have disturbingly also noticed a strange tinnitus begin in my other ear, which up until now has not had any problems. Now I hear 24/7 a tinnitus I can only describe as sounding like the sound I used to hear when I used to pick up a phone handset on a landline when someone was connected to the internet. It is a strangely variable tinnitus with beeps. Layered on top of that was a strange 'bass' sounding beating noise - making me think someone was playing music downstairs. The 'internet' tinnitus has remained but thankfully is not excessively loud - unlike my bad ear.

I have reduced my Prednisolone to 15mg per day and ever since tapering off from the higher doses, my hearing has drastically fallen (reverse slope hearing loss) and tinnitus is massive in my bad ear, but I am scared the tinnitus in my good ear is a warning sign that my Hydrops/AIED causes are going to attack my good ear.
My new neuro-otologist has put me onto Moduretic diuretic 5mg per day for a month trial - after he ran an ECOG test on me yesterday to determine Cochlear Hydrops.
Also on 2 x 24mg Betahistine per day (was taking up to 8 x per day) but not sure if they do anything after 5 months.

Anyone else in the same situation or have any idea? This condition is driving me into insanity. Truly debilitating beyond belief.

 

[Gman]

Hello, I have been told by my neuro-otologist that I likely have Cochlear Hydrops (unilateral), although we haven't completely ruled out possibly Auto Immune Ear Disease.
My affected ear suffers frequent fluctuations of prolonged hearing loss and short bouts of recovery, bad tinnitus and bouts of hyperacusis as well. I also suffer from diplacusis when my hearing is bad and voices sound robotic due to low frequency loss. I have been suffering ever since my sudden sensorineural hearing loss (SSHL) occurred 5 months ago.

Over the last two weeks I have disturbingly also noticed a strange tinnitus begin in my other ear, which up until now has not had any problems. Now I hear 24/7 a tinnitus I can only describe as sounding like the sound I used to hear when I used to pick up a phone handset on a landline when someone was connected to the internet. It is a strangely variable tinnitus with beeps. Layered on top of that was a strange 'bass' sounding beating noise - making me think someone was playing music downstairs. The 'internet' tinnitus has remained but thankfully is not excessively loud - unlike my bad ear.

I have reduced my Prednisolone to 15mg per day and ever since tapering off from the higher doses, my hearing has drastically fallen (reverse slope hearing loss) and tinnitus is massive in my bad ear, but I am scared the tinnitus in my good ear is a warning sign that my Hydrops/AIED causes are going to attack my good ear.
My new neuro-otologist has put me onto Moduretic diuretic 5mg per day for a month trial - after he ran an ECOG test on me yesterday to determine Cochlear Hydrops.
Also on 2 x 24mg Betahistine per day (was taking up to 8 x per day) but not sure if they do anything after 5 months.

Anyone else in the same situation or have any idea? This condition is driving me into insanity. Truly debilitating beyond belief.

I'm very sorry to hear that. The not knowing what is happening or going to happen next is horrible.
I can relate to the strange bass sound you mentioned. Mine is like hearing a dance party from a distance but it is synced to my pulse. I always thought maybe it was the middle ear muscles humming because of a nearby blood vessel.
You are lucky to have a neuro otologist who can at least try to help. Ive never had any luck with specialists.

 

[ozzienam]

I'm very sorry to hear that. The not knowing what is happening or going to happen next is horrible.
I can relate to the strange bass sound you mentioned. Mine is like hearing a dance party from a distance but it is synced to my pulse. I always thought maybe it was the middle ear muscles humming because of a nearby blood vessel.
You are lucky to have a neuro otologist who can at least try to help. Ive never had any luck with specialists.

Thanks Gman. It's my 4th neuro-otologist and one ENT. But I always had to push for things to get done initially. And these forums help a lot. Found my latest neuro-otologist this way and I think he may be the one to help me the most, but still many unanswered concerns, hence this post. I wonder if you have pulsative tinnitus?

 

[Gman]

Thanks Gman. It's my 4th neuro-otologist and one ENT. But I always had to push for things to get done initially. And these forums help a lot. Found my latest neuro-otologist this way and I think he may be the one to help me the most, but still many unanswered concerns, hence this post. I wonder if you have pulsative tinnitus?

It's just bizarre they are often so unhelpful or reluctant. I hope your current one can help and make things easier for you. Are you on a low sodium diet? I've heard that is often advised for hydrops.

Well, yes I suppose the bass I get is pulsatile. It is definitely middle ear muscle related and has gone away before. So yours is a constant tone then I'm guessing? There are just so many different things that can happen to our ears yet result in similar experiences.

 

[ozzienam]

Yeah on low salt. I have been pretty good with diet discipline for the last 5 months. Also have stayed off any alcohol and rarely have a coffee.
My bad ear is a constant tone - like pressing down on a piano key that doesn't stop. But other times it sounds like a car horn. I also have a rumbling feeling with tinnitus and the rumbling gets worse when my ear is exposed to noise. it is very uncomfortable - like having an insect fluttering its wing at high velocity inside. So I often plug my ear.