Anyone out there with cochlear hydrops?

I go to the same clinic. I'm sorry for what you're going through. There's not a lot of people on this forum right now because supposedly there's an online virus. I don't pay much attention to it. Just sit tight. I remember being in your shoes a few years ago. Scary, for sure. It will all work out though, trust me. Will respond further soon. People here are caring. You're not alone. Be strong.

 

Yes. The same thing happened to me 10 years ago in my only hearing ear. Prednisone, low sodium, diuretics made no difference.The distortion was terrible. I started to have sound induced nausea. I needed captions on the tv especially for men’s voices. I had terrible constant roaring tinnitus. I was going crazy. My local neurotologisy said there was nothing more he could do. Eliminating caffeine helped a tiny bit but not much.

After 8 months, my family dr tried acyclovir and after a month the dreaded distortion was 60% improved. I then went to dr derebery at house who continued antivirals with famvir and added allergy testing and shots. ( no i didnt have hay fever). Now the distortion and tinnitus is gone and mt hearing is in the normal range and has been for many years. All the eustachian tube funny stuff is gone. The progression toward vertigo reversed.

Go see dr derebery in person. Dont let somebody else or some other dr speak for what she would do. Good luck!

 

Please follow-up on what June said. I can also attest to powerful results from the antivirals. Improved hearing, no dizzy/vertigo, no fullness. The dreaded tinnitus is still with me, but even that seems less intrusive.

Hang in there and best of luck.

 

I also started out with cochlear hydrops. I initially noticed difficulty hearing men’s voices. My first audiogram showed a 30 db loss in the low frequencies only. After a couple of stressful events, along came distortion, which later resolved. At that time I was diagnosed with hydrops since there was no vertigo. Then after flying with a bad head cold and traveling on a bus tour on mountainous roads with elevation changes and windy roads (still with the congestions), I had my first two vertigo attacks, lasting a couple hours each. After that, I noticed I had no hearing in my right ear. Upon returning to the US, I stayed in Los Angeles and went straight to the House Clinic – at this point diagnosed with menieres. I got steroid injections on three separate occasions, but it didn’t do much good. I switched doctors to see Dr. Derebery, and she started me on antivirals. All of that happened one year ago. I didn’t particularly care for the diuretic, so she was ok with me stopping that (after about 6 months with no vertigo). I currently take betahistine, famvir, and JOH. Since then, I have very slowly regained some hearing in the bad ear, but still have a moderate/severe loss with distortion. What hearing I have regained I feel is due to the antivirals. I still have tinnitus, and hyperaccousis, but generally no vertigo (unless I do something to provoke it). I would definitely see Dr. Derebery (I travel 3-4 hours to go there). I was seeing a different doctor prior to the vertigo attacks – he didn’t think I needed to be on antivirals at that time.

Do everything you could to take care of yourself and possibly prevent full blown menieres – betahistine, antivirals, low-sodium and/or diuretics – all those on doctor’s recommendation; JOH, healthy diet (but watch the lysine/arginine ratio), overall healthy living choices including minimizing stress. If you’ve read the posts, you will see that different things have helped different people. Good luck! Perhaps if you hit this hard you could prevent or minimize further damage.

 

Yes, i think you should go to LA and see Dr Derebery in person. As for the malaise, i dont know. Wheni took acyclovir, the first two days i saw no change, the third day the distortion got worse but in a new strange way, the fourth and fifth day the distortion began to cut in and out for the first time in almost a year. From then on it was two steps foreard and one back. It takes a while, it is not an on off switch. The allergy treatment helped me a lot though in truth when i went to dr d i just wanted to talk about antivirals. I just did the allergy to humor her. But she was right, it helped me regain my hearing. It takes a while but do you want to be deaf a year from now just because you didnt get relief immediately? Ask her about the malaise.