Hi Everyone! I'm new here. I technically don't have a Ménière's/hydrops diagnosis, but I seem to have many of the symptoms (except severe vertigo). I hope it's okay if I jump in with a few questions. Around Christmas time, I had an upper respitory infection with fluid in my ears. I started taking Flonase. The virus cleared up, and the full feeling went away for the most part, but I was left with a low pitch humming sound in my right ear. The humming continued, and I finally made an appointment to see an ENT and audiologist. The audiogram revealed some small low frequency hearing loss in my right ear. (low frequencies around 25dB, everything 500hz and higher was 0 or better.) The ENT said the hearing loss was causing the tinnnitus, and said we could try a round of prednisone to see if it would help. Tomorrow is the last day of a 12 day course. Over the past 12 days, my symptoms have been all over the place. Some days, I'll have the humming and my hearing will be fine. Other days, like today, my right ear will feel full and I'll have noticeable hearing loss in that ear (I use an app to test...this evening, lower frequencies were near 50dB. Even 500hz was below 25dB. I can also tell because it's harder to hear things around me...very disorienting.) A weird thing is that when my ear feels full, I have a high pitched tinnitus, but when the fullness goes away, that's when the humming comes back. My follow up appointment with the ENT isn't for another 10 days. Do I need to be concerned about losing more hearing between now and then? Any other advice/things to watch for/ask about as I prepare for this next appointment?
A fluctuating hearing loss particularly in the lower frequencies along with a 'roaring' tinnitus are hallmarks of cochlear hydrops, aka atypical menieres (without vertigo). A sudden hearing loss is considered a medical emergency, often treated with steroids. I would call the ent and tell him what has transpired and that you fear the loss is getting worse. Meanwhile, you may want to do more reading here. Menieres is a tricky and frustrating disorder that baffles doctors as well as patients. Before diagnosing your problem as menieres, the doctor will need to do tests to rule out other conditions that can cause similar symptons. This is important because the other, more rare conditions may be more serious even than menieres. If it does turn out to be menieres, check back here. I have cochlear hydrops, a similar hearing loss and tinnitus to yours and was helped greatly by antivirals. Others have had success with other treatments. Meanwhile, it wouldnt hurt to cut down or eliminate caffeine and take it easy on salt. Good luck. Let us know what you find out.
Thanks, June! I've been pouring over this forum for the past few days, and I've learned a lot already! I feel like I'll be prepared to ask good questions at my next appointment. Just curious...how long have you had cochlear hydrops? Do you think the antivirals play a role in keeping it from developing into full blown Menieres? Was it hard to find a dr who would rx antivirals without a "solid" Meniere's diagnosis with vertigo?
Since 2007. I have a solid coclear hydrops diagnosis which is the same as menieres minus vertigo. The absence of vertigo doesnt matter in diagnosis. The sudiogram, the fullness, the roaring tinnitus, the fluctuating hearing are keys. They also must do an mri to rule out other causes. They may also do other tests. Menieres with or without vertigo is a diagnosis by exclusion. I was the last one to accept My diagnosis. The doctors jumped right on it. Yes i fell certain it stopped the progression to full blown menieres as i was developing tulios symptoms where certain sounds caused nausea. It can be hard to get a doctor to prescribe anti virals whether or not you have vertigo though they are beginning to be more accepted. My family doctor was the first one. She did it after the specialist gave up. The dr derebery at house ear in los angeles did. They do jot help everyone, they helped me enormously. I would be deaf without them because my other ear was already deaf from a surgery. I would also be miserable because of the tinnitis and distortion. You may want to see am inner ear specislist called a neurotologist who typically treat menieres to have proper testing done to rule out brain tumors etc.if hydrops is diagnosed, you may want to ask the dr to try antivirals, accepting they may or may not work for you but you want to leave no stone unturned before accepting permanent damage to you hearing and possible progession to vertigo or choosing destructive procedures. Good luck. Do not despair, there are many paths to success with this.
Hi June, I read your posts from different subjects, thanks for sharing your experience, which really encouraged people. I was wondering if you remember how soon your situations first got improvement after you took Famvir. My husband just started the antiviral in the past 12 days (10 days acyclovir, two days Famvir), he looked like response to the medicine the first week(up and down), but the second week looked like unchanged, is this normal? We feel very frustrated. Thanks
Moon, I'm sure June will give you her experience. For me, it took about 6 weeks on 3G per day of Northstar brand valacyclovir to feel "recovered." After a couple of weeks of feeling good, I dropped to 2G per day and I will eventually drop to 1G per day. I mention the brand name as it really seems to make a difference which generic you get. All the best to you and your husband.