A Test (Maybe Tympanogram?) at the ENT Department Made My Tinnitus Much Worse

[Chinmoku]

@Chinmoku, did you do the tests after all?

I was scheduled today for ECochG, but when I asked how loud it would be, they told me that it's 100 dB!

This is way too much for me.

I have tinnitus and hyperacusis.

I refused, but I don't know if this was the right thing to do. I assume this test was very important for the diagnosis. Now I'm back in the bginning, struggling with tinnitus and not knowing what is causing it.

Any opinion on this? What do you think I should do?

In the beginning I was terrified and trusted this private ENT. Didn't even know this forum. The electrocochleography revealed possible hydrops, borderline, but my tinnitus was high frequency and my hearing was stable at low-mid frequency, which is inconsistent with hydrops .Tried a hydrops diet for weeks but it did nothing. Other ENTs never wanted to repeat that exam or told me it was useless because all the other data were inconsistent with hydrops. It was loud.

Be careful, at least one forum member had tinnitus greatly worsened and was ruined by that exam.

 

[aura]

In the beginning I was terrified and trusted this private ENT. Didn't even know this forum. The electrocochleography revealed possible hydrops, borderline, but my tinnitus was high frequency and my hearing was stable at low-mid frequency, which is inconsistent with hydrops .Tried a hydrops diet for weeks but it did nothing. Other ENTs never wanted to repeat that exam or told me it was useless because all the other data were inconsistent with hydrops. It was loud.

Be careful, at least one forum member had tinnitus greatly worsened and was ruined by that exam.

Thank you for your answer.

I have a Type A tympanogram, mild hearing loss only in high frequencies, normal conversational hearing.

I do have some problems with the hair cells.

The doctor also told me that I have an asymmetric pneumatisation of the temporal bone, sinusitis and a deviated nasal septum. This only makes things worse, but I don't think they caused my problems.

On my last visit, after seeing the CT scan, the doctor also told me that I have an enlarged vestibular aqueduct but from what I've read this seem like a very rare condition and I'm not sure that I have that.

The doctor wanted to perform electrocochleography, but I was too scared.
They told me that I could be sedated, but it seems logical to me that the acoustic trauma occurs anyway, sedated or not!

So at this point I'm very disappointed, it seems to me that I'm not having any progress in discovering the cause.

In your case, from what I've read, the problem seems to be the drug you tapered.

What's your opinion on my case?

 

[Chinmoku]

Thank you for your answer.

I have a Type A tympanogram, mild hearing loss only in high frequencies, normal conversational hearing.

I do have some problems with the hair cells.

The doctor also told me that I have an asymmetric pneumatisation of the temporal bone, sinusitis and a deviated nasal septum. This only makes things worse, but I don't think they caused my problems.

On my last visit, after seeing the CT scan, the doctor also told me that I have an enlarged vestibular aqueduct but from what I've read this seem like a very rare condition and I'm not sure that I have that.

The doctor wanted to perform electrocochleography, but I was too scared.
They told me that I could be sedated, but it seems logical to me that the acoustic trauma occurs anyway, sedated or not!

So at this point I'm very disappointed, it seems to me that I'm not having any progress in discovering the cause.

In your case, from what I've read, the problem seems to be the drug you tapered.

What's your opinion on my case?

I'm not sure it was the drug for me, although that's definitely a possibility. I'm not sure of anything, except that it started with a heavy cold. This condition is the most puzzling and tormenting thing I ever got in my life and I went through a lot. The mystery in my case is the continued worsening. By exclusion, it could only be autoimmune (unlikely), a dormant virus (?) or the medication tolerance. I see no other possibility but who knows?

I'm not a medical doctor so I can't give you advice, I can only give you some impressions. The main thing the electrocochleography can detect is hydrops. You could try to treat hydrops anyway as you have nothing to lose, even without ECOG. They advise a low-salt diet and drinking 3 liters of water per day for 3 weeks/one month to see if you have any progress.

Did you have an otoacustic emissions test? That can detect possible problems with part of the hair cells. Mine came out clear despite the maddening tinnitus. ECOG showed borderline hydrops but diet and medications for that did nothing. MRI was clear. Scan was clear. Steroids both oral and injected did nothing. Antivirals: nothing. Vasodilators: Nothing. Lenire: Nothing. And on and on. I had balance problems for nine months but then they resolved. This is all to say that very often it's impossible to get a diagnosis. You can go by exclusion but then you are left with a bunch of options or potentially with something unknown.

One of the theories I heard often is that, whatever the initial trauma, the persistence of tinnitus becomes a neurological problem after a while. So it might be worth talking to a neurologist specialised in tinnitus. Prof De Ridder at Brai3n offers online consultations from what other forum members said and he is among the top players. You might consult him. Other than that I don't know.

Here is a useful flow chart with the diagnostic path, perhaps that can give you some ideas:

https://www.tinnitusresearch.net/index.php/for-clinicians/diagnostic-flowchart

 

[aura]

@Chinmoku, thank you for the diagnosis path, it's very useful.

My case is a mystery, too.

At first, they told me that it was otosclerosis and a few years later that I'm perfectly fine.

I did the otoacustic emissions test in 2014 + 2018 and it came out clear, but now - not so good.

I don't know how to translate the results, but the doctor told me that there are some problems with my hair cells...

To be honest with you, I don't know if I can put my trust in the tests. I remember the doctors telling me that I have 100% otosclerosis only to later say that nothing is wrong with my ears.

I do have chronic sinusitis, mild high frequency hearing loss, and a deviated nasal septum.

I really can't tell why this problem came back after all these years. And why is it getting worse day by day...

Maybe it's the stress, maybe noise exposure, like Michael Leigh said... or maybe it's a hidden disease, autoimmune, viral... I don't know and it's driving me insane. I just want to know in order to prevent further damage to the ears.

For the moment I'm just protecting my ears from loud sounds and take supplements, but I don't think that is enough.

 

[TBH]

I don't understand this occasional tinnitus that I've just read about on here. It consumes me every day and night of my life, I can't sleep through a night. It's hell on earth.

And if you just have one sound to contend with and can be masked, then count yourself lucky. I have 4 sounds, and usually 3 of them at any one time.

Two and a half years in of this constant is life ending for me. I've only aggravated it when I have to go anywhere, a car horn, cash register, a shopping trolley, loud music, even the censorship beeps on the telly drive me mad, and now have to make all the excuses in the world to not have to see anyone or go and do anything. The Hyperacusis is insane from this too

People just don't get how horrendous this is, so when I see 'celebs' filming themselves crying about their ever so hard life, under lockdown and THEIR depression, I just want to scream. They haven't got a clue.

There is NO escape from this for me now. And it was caused by the NHS.

But my question is, why has this got worse and not easier after 2 and a half years of this torment?