Hello all, I have been reading your posts and have finally decided to make an account myself and join the family. Here is my story. In April of 2016 I suddenly felt pressure in my right ear when I was cleaning my ears. It did not alarm me at all because I have always had problems with wax build up so I assumed that was causing the pressure. I put off going to the doctor because Im a college student and I cant just up and leave so that a doctor can clean my ears. In May of 2016, I finally went to the doctor and she told me I had fluid behind my eardrum and she prescribed prednisone. The prednisone did not relieve the pressure. I went back to her and she told me the fluid was gone but since I still had pressure, she told me to do flonaze and zyrtec for a month. A month later, still no relief! I went back to her and she told me there was nothing else she could do and sent me to an ENT. It was now July, and I was going to see my ENT. He upped my dose on the flonaze and told me to come back in a month. (At this point im frustrated) Of course, the flonaze didnt work. I went back in August, had a hearing test and a CT scan. They both came back great. So he put a tiny hole in my ear (he told me it would heal in a week) and that if the hole works then that was the solution. The hole did not work. At this point im back in school and the next time I was able to see my ENT was in November 2016. When I went back he gave me Triamterene (a Diuretic) and told me to do a low sodium diet and to come back in December. A month with the most bland food and a medicine that makes me so weak (Ive come so close to passing out on this medicine. I told my ENT and he doesn't listen) :-[ . I went back in December and of course NO RELIEF! I got an ENG/VNG test done. The put headphone like plugs in my ears and heard alot of clicks. (he told me this would determine if I had fluid in my middle ear) After testing, I got to see my ENT with the results. He told me that I indeed had fluid in my inner ear but not just in my right, its starting in my left as well. He told me that the Diuretics and low sodium is what helps. I had to ask him was there a name for this condition. He didn't want to tell me that it was Cochlear Hydrops but he eventually said it. I began to ask him questions and he immediately placed his hand on my back and led me to the DOOR and walked me out! He told me that he would call me in 2 months and that was the last I heard of him! I sat in the car after being diagnosed and went to google! he had no answers so I went searching on my own. After reading some stories Ive found myself in deep depression because I feel as though I will never get better. I have nightmares that Ill wake up deaf and usually cry every chance I get. I dont know what to do. I need someone to talk to! My symptoms: Fullness and Tinnitus. The tinnitus isnt so bad but the fullness is aggravating and has never went away!
Danielle, I had hydrops for a couple of years without knowing what it was before it progressed to Meniere's disease. You should read about John of Ohio's regimen in his excellent paper on the subject, and also look at all the posts on antivirals like valacyclovir and Dr. Gacek's papers. With that information you will be prepared to act quickly in case your hydrops progresses, which hopefully it will not (it doesn't always).
Thank you for the response Bill, I've been reading over John's regimen today and I will surely look into those antivirals! I'll do anything at this point just to get relief.
Hi Danielle, I am a relatively new member and have bilateral Cochlear Hydrops. I am so sorry that you do, too. You appear not to have hearing loss yet. That is good news! It may not feel that way with the fullness and tinnitus. But, knowing what you have so early on may prove very helpful. This forum is terrific as are the members! I have learned a lot from them. If you can find a dedicated ear doctor (s)he may be able to better answer questions and recommend treatment plans. Perhaps there is a neurotologist nearby. Universities often have excellent doctors. Some of us have also traveled to the House Ear Clinic in LA to see Dr. Derebery. I am currently on a Famvir (brand name) regimen as recommended by Dr. Gacek. He was kind enough to answer an email though I have never seen him. I also take Serc (Betahistine) and Dyazide. I am on a low salt (about 2g day) diet, just one cup of coffee and an alcoholic drink once in a while. My ear fullness in my worse ear has been there since early June as is the tinnitus in both ears-one worse than the other. My doctor and I believe that this has been progressing since around my SSHL (sudden hearing loss) in 2012. I recently had balance tests that turned out well and an ECochG that showed too much inner ear fluid pressure in both ears-confirming the Cochlear Hydrops diagnosis. Just a few things for your consideration. Good luck! I hope that you feel better soon!
I'm so sorry to hear about the SSHL , as if Cochlear Hydrops isn't enough to deal with already! Right now, hearing loss is one of my biggest fears. I've scheduled an appointment with a neurotologist at a university hospital about an hour away from me. (I'm located in Georgia) The only downside is that my appointment is February 22 . I am way too anxious to wait this long. I've done a lot of research on the doctor and he seems to know a lot about Meneirs (I hope he knows just as much about CH). I pray he keeps an open mind to the antivirals and that he isn't against it.. they very well may be the answer to my prayers. Until then I'll be doing more research on other regimens that may help me in the meantime.
Hi Danielle! So sorry to hear about your experience with SEH. My ENT is sending me to a specialist in Augusta since I live right across the river in North Augusta. I am curious as to whom you went to, and if you have been able to get any help. I had a cold the first of March that went into a middle ear infection that has supposedly cleared. After two rounds of antibiotics and one round of steroids and daily use of a steroid nasal spray, I find myself 10 weeks out and still with a clogged up ear sensation. (He also, at one point, made an incision in my eardrum and did suck out a small amount of fluid and said it was very swollen.) My ENT now suspects hydrops. The fullness is my only symptom, but the feeling of being underwater is driving me crazy!!!! I can do the Valsalva maneuver, and for a few seconds, I can hear normally. He did scope my nose this week and said my Eustachian tube looked fine. I have been thinking that it was the problem. I wonder if he can see the whole tube??? Did you have that done? Hoping you are on your way to recovery!
I have cochlear hydrops too, started in 2007. I have been symptom free for a number of years. Two things fixed it. First antivirals (acyclovir, valtrex or famvir) and second allergy testing and shots. Try them, they may work for you. There is no test to tell if antivirals will work, you just try them and see if you get ANY progress in the first month, not complete cure, ANY progress. If so continue with them. For allergy shots, do not self diagnose, allergies are not always sneezing, sometimes the ear is the main victim. My doctor was Dr Derebery at House Ear in Los Angelos. I traved from Pittsburgh to see her. I have good hearing, no tinnitus or other symptoms now. Good luck.
Thank you! This is encouraging when I sorely need it!! Because I have cold sores ever now and then, I do have antivirals on hand. I started taking 2 to 3 grams for the last four or five days. No change yet, but I realize I must give it more time. My ENT has started me on .5 mg of Bumex which I think has caused a subtle tinnitus, and he is sending me to a Neurotologist. I am also scheduled for allergy testing in June. Years ago, I used to be on allergy shots and they helped immensely with hay fever symptoms. My only symptom now is a stuffy ear that I have had continually since early March which started with a cold and progressed into a middle ear infection. It has been very anxiety producing. On Mother’s Day, I had a complete meltdown... crying to the point of hyperventilating!! ( Couldn’t and didn’t want to go over to my son’s and daughter-in- laws who were having me over for lunch.. just wanted to stay home in a quiet environment in my recliner!) I don’t know if the crying helped or if it was the Xanax I took to help.... or prayer!!! Something helped! I didn’t feel quite so stuffy in that ear the rest of the day. Monday I was back to being stuffy. . One thing I have noticed is that in the morning when I wake up and lie in bed, I don’t seem to have the fullness, but when I get up, it sets in. Also, not as stuffy in my recliner. Can anyone relate to that? It makes me think there is fluid somewhere and positions affect it somewhat. Thanks to all who reply!!