Ear Pressure etc... Cochlear Hydrops?

Hi,

I'd be grateful for any advice/input...I'm not sure where else to go! I think I may have Cochlear Hydrops brought on by an acoustic trauma.

Ok, so I had an acoustic trauma just over a year ago, and since then have had very high pitched tinnitus (plus some low pitched humming), painful hyperacusis and moderate hearing loss above 10khz. I also have a blocked feeling in my ears almost constantly. It's really debilitating as the blocked feeling feels like constant pressure in my ears. I also feels as though my hearing fluctuates, when the pressure is worse the tinnitus and hearing is worse. All this came on after the noise trauma, and has not left me since. I am trying to stay on a low salt diet (and have lost weight as almost EVERYTHING has salt in it so I mainly eat vegetable/fruit...I'm constantly reading labels and saying "can't eat that, too much salt")... I'm also trying to stay off caffeine. I drink lots of water and although all of this is making my symptoms very slightly better, I just can't stand the feeling of pressure in my ears.

I have had several treatments for blocked eustation tubes (it's definately not that as nothing helped and I don't suffer from allergies, sinus problems etc). I am at the point where I don't know what to do anymore, no one believes me, and I feel that things are not really improving (although cutting out salt seems to have helped a little). I am going for another hearing test etc next month and hope to get some answers. I really feel this could be secondary endolyphatic hydrops, brought on by the trauma a year ago.

Does anyone have any advice? Has anyone with CH seen an improvement in their symptoms? Will it ever get better? I'm struggling to come to terms with it all as I haven't felt 'normal' in over a year now! Thanks

 

Anyone...please

 

Is there ANYONE out there that can give me some advice/input?

 

Hi Blue28-

First, I just want to acknowledge your situation by letting you know I SEE you. I haven't had an acoustic trauma, but I have very similar experiences. Pressure, I have a dentist drill in my head 24/7, high pitched and major Hyperacusis. I came up with a rating system; my H is 9 out 10 right now, my T is 7. So it's not a walk in the park.

I looked up the Hydrops myself. I normally eat a ketogenic diet, which aids in not retaining sodium (I can explain that more later). I normally have a protocol of intermittent fasting and keto. However I am still on steroids, and my doctor advised to eat a "normal" diet; carbs, sugar, shit. So I did and felt way worse.

A good LCHF diet I think helps deal with mood better; carb based diets require maintenance before mood is affected, and since mood is crucial with the coping process, that's a good enough reason to reduce a dependency on glucose for energy.

My T and H start the day at 2 or 3. On carbs I would wake at 6 or 7. Do I feel for me it offers something, and it's largely irrelevant if it's placebo.

I haven't had this nearly as long as you, so I am humble in my advice knowing you have gone through many more days. I will offer this though - try to choose how you represent your experience to yourself in a way that protects you heart. I know it feels like a "struggle", but that word is so emotice and your limbic system will react accordingly. I was originally TORMENTED, in AGONY, DIEING even. Now? It's annoying, it bothers me yes, and even when I get to the point when my H is causing me to shake, I just refer to being a little frazzled. Mind hacks. They work.

All the best,

Mf

 

What kind of acoustic trauma did you have to your ear that you think may have caused your CH?

 

Microsuction on both ears, very loud microsuction. Read my intro for more info.

 

Thank you for your reply @Mettafort, I am sorry I didn't see it sooner. Thank you so much for your advice and support.

How are you doing?

 

I've never read that acoustic trauma can lead to CH... I don't see the causality, physiologically speaking. How does that work?

 

My first ent doctor diagnosed me with cochlear hydrops...then he gave me blood pressure/diuretic and it made me feel like I was going to pass out and vomit...I called him and told him how the meds made me feel and he said to not take it anymore and I then asked why did u diagnose me with hydrops in person but on my paper work was only tinnitus and what am I suppose to do now? He said well technically I can't diagnose you with cochlear hydrops....


2nd opinion new ent
Said sudden hearing loss and that cochlear hydrosphere is basically BS that's why the first ENT couldn't properly diagnose me with that...
Just my experience

 

Interestingly, my very first diagnosis was also hydrops, and when I asked my ENT doc how she came to that conclusion, she said "by process of elimination: when we can't figure out what it is, we just say it's hydrops".
It was obviously the wrong diagnosis too.

 

Did she freak you out? When he told me I could no longer eat sodium, drink caffeine have alcohol..I spiraled down...I think it's unfair to say that to patients!

 

She told me that too. I didn't freak out because I thought it was a treatment modality, and that it was just temporary.
Of course, that wasn't it, so it was quite useless for me to go on that type of diet, which wasn't that different from my natural diet anyways.

Oddly enough, it's the day right after I started on the diuretic (for hydrops!) that my T started. I don't see the causality, but the timing is suspicious.

 

Hi @GregCA And @Blue28

I am in a similar situation like you. I was diagnosed with hydrops and probably Menieres... but few other doctors don't believe that... but then what is it I have that causes constant ear fullnes, vertigo, and T? Then doctors don't have a answer.. I am on beta histine... it helps with vertigo and nausea and not with T... I have pulsating T in the ear with MD and high pitched tone in the other one.. even I am trying to cope everyday but my advise is to get support From family and friends... try and manage to cope with it... background sounds, avoiding quite rooms etc... there are lot of people here with good suggestions and tips on how to manage your T, maybe give them a read? At the end of the day one has to mange it! That's what I am trying to do... take care!

 

Why don't the other doctors believe you have hydrops/meniere's? (your symptoms seem pretty consistent with H/M)
Do they have another lead?

 

I have read in a medical report about trauma (including acoustic) can cause hydrops/MD due to the changes that occur within the inner ear after damage. If I find the report I'll post a link.

 

Exactly another doctor thought if was an infection, and one jus said give it time it will go away. Also I was never exposed to any acoustic trauma or accidents to my head and neck, it started out of the blue after a party where I had too much to drink and there was no music there.

 

My 2nd ent (who is the chief of surgery at my hospital) suspected cochlear hydrops causedby standing next to a loud speaker at a concert back in April. He put me on a diuretic which helped me the first few days but my full feeling in my ears has gone back to how it was before. I saw him the other day and he said to stop the diuretic and to see if it makes a difference. So far, I don't notice my T nor my fullness being worse, indicating that I probably don't have cochlear hydrops. Although, I've read that a lot of people with Ménière's take diuretics and it doesn't help their fullness at all so I'm not sure. He told me to report back to him in a few weeks and if nothing has changed, he is going to schedule me for genetic testing. He said "they'll probably think I am crazy, but I have a feeling it might be something to do with your genes so I don't care what they think." (Great doctor by the way). Hopefully something comes up to explain my feeling of fullness in my ears and why I got tinnitus from the concert when none of my family members or friends did. I had no previous acoustic trauma, but my grandma lost her hearing completely at the age of 50 and the doctors still don't know what caused it. She wasn't ill , she just woke up and her sensory hair cells were dead. She got a cochlear implant and is fine now, but I want to make sure that I don't have her "mystery disease" as well. If nothing comes up in my genetic testing, then he's going to put me on the highest dose of the diuretic and see if I find any improvement. If not, I'm probably going to be stuck with the full feeling for a while.

 

I was diagnosed with hydrops because of the sharp decline in low frequency hearing plus the vertigo attacks. They are mostly gone now but lasted between 20 mins and 5 hours. Depending on the amount of prednisone taken that day.

I am put on 72mg Betaserc (A-brand betahistine, normal betahistine is forbidden by my ENT) for 10 days and 48mg afterwards. I have to report back after 14 days.

And yes, it definately seems to do something as I have more vertigo but less tinnitus. And it's like someone is putting a needle very deep into my ear, it's like a small oil can that very slowly releases pressure.

This was after the 3rd ENT I saw. First one gave me 2 weeks of prednisone in high dose taper and second one gave me a 3rd dosis of prednisone taper and 10 sessions HBOT. They missed the fact that it could be hydrops. The 3rd doc said it's 100% sure a hydrops and take your prednisone taper slower. He put me on Betaserc.

Overall results on pubmed seem to be quite vague that Betaserc is helping but I don't want to develop Menière.

Prednisone should NEVER be taken in the evening, only in mornings because of your body has the highest levels of corticosteroids in the morning.

 

I have read that too. How are you doing with cochlear hydrops now? Did it get better?

 

Hi @Juan,
Sadly no, the hydrops (if it is that) hasn't gotten better. I still have constant fullness, and my hearing has continued to worsen. I'm not sure what to do. How are you?

 

I am quite worried because my hearing is getting worse and I am having trouble understanding TV and speech in noise.

For some reason I also have trouble understanding speech when I am not paying attention to the person talking. This never happened to me in my life. It is like the sound is not travelling properly to my brain or something...

I did have CT scans and they came all clear, nothing showed up there, so I don't know why this happens.

Also, when I go out for a walk, with earplugs on, I can feel how the odd sound (motorbikes mostly) make my hearing dampen suddenly, and this persists for days afterwards. It is really strange since I don't perceive the sounds actually loud, due to a mild hearing loss, but they for sure have an impact on my hearing.

According to my doctors this is a cochlear problem, although they cannot precise more. However, I had a cochlear test (distortion products is called) and this came out well, nothing showed up. I told my doctor that my hearing fluctuates a bit, that I can hear worse for days after hearing some noise; apparently this is quite uncommon too.

Sometimes I get this liquid feeling deep down my ears, and there is no visible liquid, so I thought maybe this sensation is cochlear hydrops, and that's why I feel the liquid and the warmth feeling of pressure on and off.

 

I understand what you explain here but I've never found answers either. For me it's noise damage from the microsuction and then as doctors and audiologists are in total denial about the damage this can cause, they subjected me to loud tests as they claimed that the microsuction couldn't have caused the damage. Absolute imbeciles!!!!

 

I am wondering if this is not cochlear hydrops, but at any rate it seems the use this category (cochlear hydrops) as a general diagnosis for many cases doctors cannot really explain.

I think I do have fluctuating hearing. And there is some "enhancement of sound" our hearing does that for me is no longer there. The middle ear muscles enhance sound conduction, but also the outer hair cells. I notice this because I go to walk with some friends, with earplugs on, and I could hear them before (very very low) maybe due to bone conduction, and I no longer hear them. I have to place my earplugs halfway out to be able to hear, and doing this tinnitus spikes up, so it is like at least I understand them more or less, over tinnitus and a hissing sound.

So my theory is that somehow my hearing does steadily get worse, whatever it is that does not work... maybe the hair cells..

 

Dumb question, are you guys able to pop your ear/ears that may or may not have hydrops? I definitely have it and cannot do anything to make my right ear pop. Aggravating and infuriating condition.

 

I find it difficult to pop my ears. It's been like this since the microsuction damaged my ears over 4 years ago. It's extremely frustrating. I think I have hydrops too.

 

You have had ECoG testing done to confirm it? I have really bad tinnitus in right ear and told the audiologist this before I agreed to take the test. She set the machine to lower volume levels but it showed elevated pressure. The test is noisy but not as horrible as some make it out to be. The test did not make my tinnitus louder but I was careful when she moved to my right ear.

 

I have never been able to pop my ear since this happened. It feels like it needs to pop and is full of pressure all the time but it won't pop. Even if I try to force it to pop, it won't. Left ear closes and pops with no issues. I never had any issues with my ears before this so I'm guessing either I have too much pressure or my eustachian tube is stuck or not working right.

 

I have not had the ECoG test done, I had other tests done which made matters worse (loudness tests etc). Both my ears are affected. My ears feel constantly as if they need to pop, but even if I'm able to pop them it changes nothing.

 

Sorry to hear that you're still suffering. If the medical community would take hearing and otologic issues seriously we would already have a cure.