Anyone Have Cochlear Hydrops?

Hi everyone, I'm new to the forum. My name is Kathleen and I live in California. In August last year, I abruptly lost the low frequencies in my right ear.

Thinking I was congested, I did not seek treatment for 2 months. After many ENT and neurotologist visits, I was diagnosed with cochlear hydrops. My symptoms are low frequency hearing loss, fullness (sometimes aches), and tinnitus. I have had no vertigo (hence the diagnosis of cochlear hydrops vs Meniere's).

I am on a low-sodium diet (<2000mg per day), drink 3 liters of water per day (the treatment for hydrops in Japan), and take betahistine (not sure that it is doing anything).

Does anyone else there have or had cochlear hydrops? Would love to connect and swap ideas. Thanks all!

 

Welcome to the forum. The Introduction may not have enough readership for people with cochlear hydrops to answer you. You can post this in the main support forum or search the forum for that. Just click the Forum tag at the top left, then type the search wordings of cochlear hydrops and you should see many prior discussions like this search does:

https://www.tinnitustalk.com/search/2279611/?q=cochlear+hydrops&o=relevance

 

Yes, I developed this over a year ago. I lost a bit of low frequency in one ear. It did improve to the point I really don't notice the loss unless I put on head phones and play a low frequency sounds and compare them to my good ear.

 

Would love to hear your tips! I am about 80% recovered now, hope it doesn't come back.

 

80% recovered is very good, what did it for you? Was it just time to heal?

 

No, I don't believe it was a matter of time. I sought out PT for that side of my face and neck, as I suspected that inflammation around the TMJ was irritating the trigeminal nerve in my face and ear. I also started taking betahistine every day. After I started the PT, my hearing slowly started to come back. It was 80% back after 4 weeks of PT! I was incredulous! I also was diagnosed with cochlear migraine and started taking gabapentin at night, started that about 6 weeks ago, the premise is that it will keep the trigeminal nerve less irritated. I still have some mild headaches and achy face when I wake up, so trying to pin down the right TMJ treatment. All in all, I think muscle tension in my face and inflammation from the TMJ irritated my trigeminal nerve (which innervates the ear). I also think I may have tensor tympani syndrome (muscular tension) as I still have ear fullness and clicking. Hope this help!

 

What is pt? And who prescribed you with the gabapentin?

 

PT=Physical therapy. Neurotologist wrote the gabapentin prescription

 

Very good news, my hearing came back slowly also without any medications. I believe that the initial hit of cochlear hydrops that knocks out the low frequency hearing does get better.

It may be because of other hearing cells in the ear taking over for the loss of the low frequency cells that died.

My cochlear hydrops improved greatly during the first couple of months without any medications, this is why it is easy to attribute that medications had an effect when they may or may not have had any.

It took maybe 6 months to over a year to get to the point where my low frequency was about 90-95% better. Time does heal cochlear hydrops.

The issue I have is my bad ear will sometimes get bad for a week, it was cycling from good to bad ever couple of weeks, but not nearly as bad as the first couple of weeks which was horrible.

Lipo Flavonid Plus really had the best improvement to stop my ear from cycling from good to bad. Now it mostly stays good, and it may get very slight bad sometimes but it is rare now that I'm on the supplement. The supplement seems to work best with people with cochlear hydrops, and that is why I guess it works so well. I take half a pill a day and that keeps my ear from getting bad. I tried to stop taking it for a week and my ear got really bad so I really believe it works. When I also first started taking it, my ear stopped getting bad. I don't believe it is a coincidence.

When my ear is good, It is so good that I would not be able to know I had an issue with my hearing unless I put on headphones and compared my good and bad ear to extremely low frequencies.

Again I am not saying that the medications didn't help, they surely could have. I am just saying that it is easy to attribute medications helping you when your body just healed it self.

When you describe your hearing coming back as incredulous, I understand this completely. When my hearing started to come back it was the best thing ever. It is almost like you can cry having it come back, very emotional.

 

Amazing story! Yes, glad yours came back too! What a relief, I thought I was on the road to Meniere's disease. Thanks for sharing your story! I took lipoflavanoids for a while as well but didn't notice any difference. Probably multiple causes for hydrops

 

Hey Kathleen,

May I ask what type of foods your diet consists of?

 

How did they test for hydrops? Last year I asked my ENT about it and he had me get an MRI?

 

My ECOG was normal but my VEMP was abnormal. That combined with my symptoms of low-frequency hearing loss, tinnitus, and fullness led to the cochlear hydrops diagnosis.

Now that my hearing is about 90% back to normal, I have added sodium back to my diet. If I have a lot of sodium, the tinnitus seems to flare up a little bit. I still don't add salt to anything and I'll probably stay that way. I also try to drink about 2 liters of water per day (the treatment for hydrops in Japan)

 

Yes Kathleen same here, with my hearing about 95% improved If I pig out on foods my hearing will get a little worse, a little fullness, more loss of low frequency, little tinnitus.

I found that if I eat a tomato a day it causes issues. I find lots of candy will cause issues. I can't really say sodium causes me issues. I am pretty sure alcohol causes issues. It is really random what can cause issues and not and you need to experiment. I believe chicken can cause issues but not salmon.

I don't really keep such a strict diet, but I try to keep junk food in moderation, not eat too much of it.

If I go on a calorie restricted diet where I limit all food intake my hearing is the best, stays good for a real long time and doesn't get bad at all.

With that all being said I can't be sure if diet has any affect as sometimes if I am on a very strict diet my hearing may just start getting a little bad for no good reason. But the bad hearing lasts very short time like 2 days and its back to good again. The thing is I normally don't eat too much junk food so I was always on a healthy diet more or less even before I got cochlear hydrops. I can imagine the average persons diet may really cause me lots of issues but I eat healthy normally.

There is definitely a delay if food causes issues, if I pig out it will take a day or two to cause issues so its really hard to know for sure or if its just my ear cycling from good to bad.

The Lipo Flavonoid plus I believe really helps, this has mostly stopped my hearing from cycling from good to bad, and back to good again. Before lipo flavonoid my hearing would be good for a 5 days, bad for 2 weeks, repeat cycle, it was mostly bad.

With Lipo Flavonoid my hearing is good for 4 weeks, bad for 2 days, repeat cycle. It is mostly good all the time.

 

Kathleen, why do you say you are only 90% back to normal, what are you basing this on? Can you tell that your hearing is not as good as it was before the cochlear hydrops?

 

My audiograms. I used to be at 70-80 dB sensitivity in the low frequencies (severe hearing loss) to now normal (10 dB) in all except the lowest frequency (and I am 25 dB for that one). Tinnitus is also mostly gone, as is the fullness.

 

Interesting, it seems we had very similar outcomes. While I never really took an audiogram, I used the computer to do frequency tests and my low frequency loss in the beginning was very bad. Most of it did come back to where only below 80HZ is slightly impacted.

I do wonder if this is because other hearing cells take over for the low frequency, I heard something like this could happen.

Because this only impacted one ear, our other good ear easily picks up all the low frequency and you can't even notice any loss in normal day to day hearing.

Hopefully it never gets worse or the other good ear has the same issue. I doubt it though.

Even though it sucks to have gotten this, I consider myself lucky that it improved and wasn't meniere's disease.

 

ughh, those tests are dangerous and can permanently spike tinnitus... I'll try a low sodium diet though.

 

I have Cochlear Hydrops I take Serc. I couldn’t tolerate the diuretic he put me made me so weak. I actively avoid salt although some is hidden in foods. Can someone please tell me how much water a day I should drink as this washes the salt out of kidneys I believe
My tinnitus is ringing louder today but the last two days I couldn’t notice it much. It is puzzling why this happens

 

@Blue28 Any help? xx

 

I also have endolymphatic hydrops for a few years now and I noticed that (for me) a stressfull event gives me the next day(s) a low freq hearing loss (clearly happend 2 times). Stress produces allot of hormones and also vasopressin what has effect on your osmose process (fluit regulation, so also with your endolymphatic sac).
I also reduced salt and start drinking allot of water (as I am 2 meter it is >3 lieter per day). I noticed that actually I didn’t drank enough at all before. Now I especially drink allot after the mail to give my body the change to flush salt etc.
My ENT did not know what it was, but i figured that for me it seem to be stress (acute stress attacks where you feel your hole body boil) and not enough drinking. (also after reading allot of research)
At the moment i have it under control and my hearing is back.
One thing i also noticed that the hearing loss was strong ~2 days after flying and also during my skiing holidays. It is possible that barometric pressure also has an influence.

This is my experience and please check everything with your ENT, hydrops can can be a result of may different things, but drinking enough water and avoid stress can not harm.

ps. I use a IOS app, with always the same good wired headset, to regularly (sometimes 3x per day) check my hearing and copy it by hand in excel: https://apps.apple.com/nl/app/hearing-test-ear-age-test/id1067630100?l=en

 

My audiograms. I used to be at 70-80 dB sensitivity in the low frequencies (severe hearing loss) to now normal (10 dB) in all except the lowest frequency (and I am 25 dB for that one). Tinnitus is also mostly gone, as is the fullness.
That's awesome! How long did it take for your audiogram to get back to normal?

 

My hearing (via audiogram) showed full recovery 1 year after I experienced the loss. Has stayed stable ever since and I am now getting yearly audiograms. I am back to consuming sodium as well. I massage my face and TMJ area every night.

 

That's amazing. Did you ever get pain deep in your ear like a bad ear infection kind of pain but obviously no infection. Doctors say I have hydrops but my hearing was at a mild loss, dropped to severe and has stayed there for almost a year. Unbearable roaring at 500 Hz. God help me.

 

Hi there, I did have deep ear pain, which eventually led me to explore that my problem may be in part related to TMJD. I found a physical therapist who showed me how to release and massage my jaw and neck muscles, and that's when I started getting better. I should also note that I take Betahistine 16 mg per day, hard to say if that has helped or not.

Keep going, I know this is such a frustrating disorder. Once my hearing improved, so did the tinnitus.

 

I have been to neuromusclar dentist to check for TMJ which I don't have. This whole scenario has been hell. I had a noise exposure and three weeks later I showed mild hearing loss in my low frequencies. Very mild. After treatment with Dexamethasone through the eardrum and oral Prednisone I saw a massive hearing loss in all low frequencies by 20 dB to 40 dB but recovery by 10 dB or 15 dB in the highs.

I didn't develop the roaring unbearable tinnitus until roughly 7 months later. That is when I quit working as I simply cannot concentrate or sit still without getting angry. Life was so much easier without this shit. I can get Betahistine here but it's expensive as hell. It has to be compounded. If the border was open I would drive across the bridge to Canada and buy it in Windsor. I had a thirty day supply made a while back but felt lightheaded taking it. Maybe I should try it again.

 

Has anyone tried intratympanic steroid injections years after hydrops was diagnosed? Did the injections help?

My doctor is suggesting to try them, even if I told him that my hearing problem dates back many years... He said that there are no side effects, that the eardrum will close after the injection without it being scarred and that there will be no pain at all, as they use local anesthesia...

 

Your doctor is full of shit regarding the pain. I can't say much for the length of time being I've had this just over a year. They hit your eardrum with Lidocaine but it still hurts. I have them done every 90 days to try and help with the inflammation. They may help you and it only hurts for four or five seconds while they pump the Dexamethasone in there.

 

So sorry that's it's been so rough! I wonder why the tinnitus got so bad so much later than the hearing loss.

 

My hearing loss got considerably worse for unknown reasons. But I'm not sure. I wish I could be so lucky and have the hearing come back and the roaring stop completely. It has before for a week straight but it went back to bad again.