Possible Cochlear Hydrops — Weird Symptoms

Hi,

I’m new to the forums but thought I would reach out to see if anyone has gone through any of my symptoms and what they did to get through theirs. My situation is somewhat complex and I have found almost no information on some of my symptoms online and hope some people could shed some light on what I might be going through. My situation can be broken up into two separate events with event 1 being a 50 minuet episode in the right ear until symptoms leveled off to moderate constant symptoms until event 2 a week later where things changed. As a note my right ear was perfectly fine with no symptoms until the situation that unfolded with event 1.

EVENT 1

August 21st 2021 at 1:00am in the morning I was sitting up in bed and suddenly had ringing in my right ear. I would consider this a normal tinnitus ring where the tone gets louder to a point then stays that way for about 15 to 20 seconds and then dies off. I have experienced this in both of my ears before but maybe only once every couple months. This time when it came it would repeat itself once it died off so once it went away after 20 seconds it would just start right back up again. After about 20 minutes I noticed ear fullness in the right ear as well as a sound associated ring where sounds would cause a simultaneous ring on parts of words or vowels within the words, it’s almost like the ring is piggybacking on the words which the words themselves are not distorted. After about 50 minutes the up and down rings turned to a constant moderate tone but the other symptoms stayed the same. I went to sleep and the next day had the same symptoms I went to sleep with although the ear fullness felt like it had gone but I noticed certain sounds didn’t feel right or normal on the ear and sometimes felt uncomfortable. Between August 22nd and August 29th not much had changed and had the same symptoms except sometimes the 20 second ring from earlier might come and go at random times during the day, on top of the other symptoms.

EVENT 2

August 29nd at 6:50am I woke up with ear fullness in the right ear, along with the now normal moderate constant tone and sound associated rings from the past week, but was also getting short and frequent 5 second tones going off every 10 seconds or so that sounded similar to silverware tapping a glass. Along with this the sound associated ring seemed to have changed in an odd way that I will discuss later. After about an hour the frequent 5 seconds tones were no longer as frequent and would come on only every couple minutes. As the day went on the fullness in the ear started to go away but I noticed I couldn’t hear as well out of my right ear, maybe a 30% to 35% decrease in hearing, I noticed this mostly when using ear buds and noticing how sound was no longer nearly as loud in the right ear as it normally is or compared to the left ear. I went into the ER and they gave me an MRI, which showed that there were no issues. A couple days later I got in with the ENT that after reviewing the MRI and the hearing tests said I most likely have Cochlear Hydrops. The hearing tests showed a decrease in low frequency sounds in the right ear. He started me on a 2 week Prednisone taper and for me to come back halfway through, September 7th, to see if any hearing was restored and then we will decide what to do next.

I should note that from August 29th to present, which is a little over a weeks time after event 2, the symptoms consist of a constant hearing loss that has not fluctuated at least from what I have noticed, but with fluctuating ear fullness that seems to come and go throughout the day. Also the moderate constant tone I have since event 1. What has mostly changed within this second week after event 2 is the 5 second tones have turned into two different things. The first is a faint grandfather clock bell sound that comes and goes throughout the day that sounds like it’s lost somewhere in my head and difficult to pin point it to a particular ear. This can also come in the form of soft wind chime sounds in the background. The second is another faint sound but of something similar to a light piano key or water dripping in a cave in the distance, this also happens throughout the day ever since event 2. Lastly the most confusing symptom is how my sound associated ring has changed. During week 1 sounds that went into my right ear would cause a moderate sounding simultaneous ring with certain vowels of words where the ring would piggyback on the particular words or sounds, if I plugged my right ear the sound would not trigger as it required an external sound to go into the right ear to trigger the ring. During week 2 after event 2 that sound associated ring has turned into two different things. First of all certain sounds going into the right ear will now causes a higher pitched ring but it seems to be triggered by different sounds than what triggered it during week 1, now instead of words triggering it seems to be things like fans and faucets. Secondly now when sounds go into my left ear I will get a metal banging sound in my right ear that increases in sound based on the level of sound going into the left ear. It sounds as if the sound is bouncing off a metal sheet, almost like a metal vibration. What’s odd as this does not happen when the sounds go into my right ear but only the left ear and I will hear the metallic noise in my right ear still. I should note that the words that I hear are not altered, but this metallic sound simultaneously accompanies the words or sounds itself usually sounding like it’s attached to the ends of words or sounds.

So far after event 2 I have had these same symptoms, with small variations and changes within some of the tinnitus sounds but without much changing otherwise. I am hoping to get on a diuretic to remove what I believe to be fluid in the inner ear and hope that makes a difference in my symptoms. Some things like my sound associated rings are very odd and I have found almost no data or similar cases online so I am curious if other people have gone through similar things.

 

For three weeks I have had this tea kettle sounding ring that seems to attach itself to sounds going into my right ear. The first week it sounded more metallic but now sounds more like a tea kettle ring. It's most noticeable with words such as when people speak, as well as my own words, where parts of those words will have a simultaneous ring associated with it. So if someone says "Hello" then the "o" part of hello will trigger the ring for example. The ring is only triggered by sounds going into the ear so for example if I plug my ear and people talk I will not have the issue. This makes me think a certain frequency going into the ear is agitating a nerve or something and thus causing a reaction. Other things that cause it besides words are things like fans and faucets or simply loud noises. I have only had this issue one time a few months ago that lasted about 6 hours or so, and then I've had it for the last three weeks when my right ear randomly started having issues.

To make things even more confusing I also have an anomaly where sounds going into my left ear cause a metal munching sound in the my right ear, this is caused by almost all sounds going into the left ear. The louder the sound that goes into the left ear the louder the metallic sound is in the right ear to the point that it can sound like the words are bouncing off a metal pan.

These both are recent symptoms from within the last three weeks and I have never experienced them before, except the one symptom I mentioned I had a few months ago.

Would anyone have any idea what this is that I could be experiencing or if anyone has ever had anything similar?

 

Hi @Zach777, sorry to hear what you are going through.

I have Cochlear Hydrops.

Indeed low frequency hearing loss, tinnitus and ear fullness are symptoms of this condition.

My experience with the hearing loss was horrific.

I had diplacusis, so I had a robotic echo in my right ear usually after a higher pitch voice spoke.

Low frequency sounds would be amplified, my kettle boiling sounded like thunder. My ear did very strange and frightening things when I had the hearing loss. I had a lot if pressure in the ear, it felt like it would explode.

Treatment for Cochlear Hydrops would be diuretics (Moduretic), to drain the fluid from the inner ear. I began improving within 24 hours of my first dose.

So try this if you’ve had no luck with Prednisolone.

 

@Samantha R, yeah I'm wondering if my issue is still a form of Cochlear Hydrops, after a week of the Prednisone with no changes I was put on Dyazide and to cut the pill in half. I have been on that for about a week and haven't really noticed any changes oddly.

 

Hi! I read through your experiences with cochlear hydrops. I've had a very similar case for the past 2 years. I still have episodes, struggling with one right now as we speak that started few hours ago.

Mine has always been bilateral too. How's it going for you, any flare ups? Definitely urging my doctor to prescribe me some diuretics and LDN after reading your story. Have you given Montelukast (Singulair) a try? Seems like there's promising studies on it helping allergy/autoimmune induced hydrops.

Cheers!

 

Hi meemil,

Well since August 21st 2021 when this all started a lot has happened since my last post and I have learned a lot.

I have also seen a number of ENTs and nobody so far really knows what's going on.

Essentially most of my issues is in the right ear, I have experienced some odd tinnitus in the left ear since this all started but my episodes and hearing loss have all been in the right ear so I'm still not sure if what's going on in my left ear is even related to the issues in the right ear.

My recent ECoG test shows my left ear is fine but the right ear is "inconclusive" and it said "Wave 5 did not show up but wave 3 is intact", so not sure what all that means but will be talking to the ENT about it soon.

Either way what happened is on August 21st I had an episode which started all of this, it was about an hour of intense tinnitus that died down to a constant tone in the right ear after the episode that I have been stuck with ever since.

About a week later I had another episode which was similar but resulted in a lot of hearing loss in the 1000 Hz frequency. Then I was put on Prednisone for two weeks and eventually started up Dyazide, a diuretic. An audiogram showed some of the hearing was coming back, but then about a week after stopping my two weeks of Prednisone I got another episode (episode 3), and was put on Prednisone for another two weeks and again after stopping for a week I had another episode (episode 4). Was then put on another two weeks of Prednisone which after a week after stopping had episode 5, except episode 5 I noticed was not as intense and previous episodes although each episode has reduced hearing according to the audiograms. The audiograms though also show that between the episodes I do slowly start to regain hearing in the affected frequencies but the problem is the episodes bring the hearing back down and it seems the episodes have also started affecting hearing in higher frequencies as well such as those between 1 kHz and 3 kHz.

After the 5th episode I decided to take a break from Prednisone especially since the 5th episode was not as intense so I wanted to see how much hearing I would get back this time around but with no Prednisone. I am currently at the end of the three weeks after episode 5 as of typing this. I have noticed these last three weeks that hearing has not come back hardly compared to the weeks that I used Prednisone but the tinnitus seems to be getting better slowly still and I have yet to see an episode 6 so far. I should also note that halfway through the last three months I was also put on Betahistine along with the Dyazide. It seems that both medications don’t seem to affect this that much but I have noticed the Prednisone helping with the hearing retuning.

The ENTs as I have said don’t really know exactly what is going on but believe it’s probably some sort of inflammation caused by something but don’t know if it’s autoimmune, Meniere's, or possibly some kind of blood clot from my high triglycerides. The only consistent thing I have noticed is the audiograms show hearing coming back between episodes but then going back down right after an episode. I should also note I have no dizziness so it’s only tinnitus and hearing loss. Also a lot of tinnitus has changed in different ways throughout the last three months so nothing is ever really consistent with that. A lot of tinnitus that is reactive to outside noises that I had in the begging such as when I turn on faucets no longer happens. I do also get some weird clicks in the right ear that randomly happen as well kind of clicks tapping two marbles together.

Lastly I should state that I have lots of random tinnitus between episodes unlike some people who only have issues during the episode. This tinnitus can be different every day and can be a range of short and long tones of different frequencies, sometimes it sounds like I’m in the middle of a forest or swamp with frogs croaking and cicadas in the background, other times I have heard drips in a cave as well as wind chimes and other weird sounds. I’ve also had an MRI in the very beginning that does not show any issues.

Either way it will be interesting to see what happens in the next few weeks.

 

Hey! Was initially responding to Samatha's post as that seems closest to what I'm experiencing but interesting to read your story nonetheless.

Do you have constant fullness going on? Mine is slightly different in a way that I get these episodes quite often. Sometimes very small (slight distortion for an hour) and sometimes, like now, strong where I go almost deaf in the ear affected. Now, after 8 hours since this episode started, my hearing has got a ton better, still some distortion going on though.

It almost feels that for me, the excess fluid gets drained in the end of an episode as the hearing gets to normal baseline. My speculation is that maybe it could explain why the hearing loss in cochlear hydrops is often temporary, once the fluid balance gets back to normal and residual inflammation goes down, hearing goes to baseline. (Even in cases where the episode lasts weeks or months). Too bad there are not a lot of studies on this, only Meniere's.

 

I yeah I see that now, well either way at least I was able to update my thread which I wanted to do anyway. But yeah my symptoms do seem a bit different than yours mostly because my hearing takes weeks just to get 10 dB back and that's with the help or Prednisone. Although my symptoms are much worse during an episode but I have many lasting symptoms between episodes which I seem to get one a week without Prednisone and once every three weeks with two weeks of Prednisone.

That's good that your hearing comes back!

Yeah my ENT thinks I could have Cochlear Hydrops but he is not sure yet.

And I agree I wish there was more research out there on a lot of these ear issues.

 

Hi! Sorry for the late reply.

No real flare ups of note.

My Hydrops seems to be hormonal. I have birth in June and stayed on the diuretics and LDN during pregnancy. Towards the end, I had some MEM (Middle Ear Myoclonus), but that has settled and stopped for about 2 months.

I haven’t tried anything else as I’ve been stable.

I will read about Singulair though. Always interested to learn more.

Hope things have settled for you.

 

I believe I might have cochlear hydrops too. Do any of you guys get an intense itch in the affected ear/ears?

 

Hey, I was just diagnosed with cochlear hydrops with tinnitus and hyperacusis that began last August, just like you.

I'm not sure if I really have cochlear hydrops, though, or if I have something else. I've been watching my salt intake and am taking a prescription diuretic with no luck whatsoever.

Keep us posted on what works for you. I'd give anything to have my normal hearing back.

 

My ears itch really bad. What does that mean?

 

I'm no doctor but I think it means there's inflammation in your ear. Either outer, middle or inner ear. Mine seems to be inner ear related and I also feel a sensation of liquid moving around at times, so that can cause a tickly sensation as well.

I would recommend getting your ears checked so you can be sure that inflammation can't be treated easily such as with creams or antibiotics.

 

What about like coconut oil in my ear canals? It’s red and dry.