I have had Meniere's since 1999. I used to be on this website regularly in the beginning, but after my Meniere's symptoms and attacks subsided, and I was only getting infrequent dizzy spells and tinnitus, I stopped going on this site, until now, when a new problem has come up. As background, I am a singer (for over 40 years) in a 90 member Sweet Adeline barbershop chorus, and I've been wearing hearing aids for over 10 years, so, if I cannot solve this new problem, I may have to give up my singing. It first occurred 2 years ago, when I suddenly had a dramatic hearing loss with distorted hearing. Luckily, I went to an ENT who told me it was a virus, gave me prednisone, which fixed the problem, and told me, if it happened again, to see an ENT quickly and get prednisone again, or my hearing loss could be permanent. Fast forward to this April, 2 weeks before my regional chorus competition, and a new insurance plan. I experienced the same distorted hearing loss, went to a new ENT, who said my hearing test didn't show any changes from the previous year, and didn't do anything. I went back to her a second time and requested the prednisone, which worked long enough(5 days) so I could hear properly for my competition(which we won!), but then I got so ill(severe stomach cramps, diarrhea, and vomiting), that I was told to stop taking it. To make a long story short,I was sent for an MRI(no abnormalities), went to my audiologist who gave me my new hearing aids last year(didn't make any changes), went to my PCP who said I had an ear infection(gave me ear drops for 5 days which cost $95!), and I still have the distorted hearing! Today, I am going to a neurologist, who is in my insurance plan, with hopes that she can make a referral to an otoneurologist who is outside my insurance plan but is a specialist in Meniere's. What worries me is that it is too late to fix this hearing problem and I will never be able to sing again. Does anyone have any advice or experience with this problem?
Hi Anitasmolik: I have Cochlear Hydrops and not full Meniere's. I was diagnosed in February. Since that time, I completely lost my hearing twice, and after each episode had significant loss in the low frequencies. But for what it is worth, my hearing has gotten better in the low frequencies in the past six weeks or so. (Now, I do get occasional distortion.) I cannot figure out the trigger. What this tells me is that when I was told, "the hearing you lose after the cortisone treatment will be gone for good," is simply not true. One OT told me, "those hair cells are dead and won't come back." At least in this one case, I have found that not to be the case. And from what I have read on this board is not true for others as well. One thing I have learned is that we all have slightly different triggers, slightly different reactions to low sodium diets, different actual symptoms, different results for various treatments, etc. I know that back in the Spring, I was quite anxious and depressed. That did not help my recovery. My best advice is to keep a good attitude. Good luck.
I suffered cochlear hydrops and my worst symptom was distortion in low frequencies. Antivirals helped me a great deal with this specific symptom. Allergy shots helped me too but more with other symptoms. I do not think it is too late to try them.
I also have cochlear hydrops and my hearing gets distorted. This is different than a sensorineural hearing loss. My hearing came back up to close to normal (from severe at its worst) after prednisone and dex shot to the ear. But i still had distortions. I started allergy pills (claritin) and JOH and after a few months the distortions improved dramatically. I stopped JOH and the claritin and feel great most of the time. But I still get awful distortions sometimes. I believe this is purely a fluid issue. Now that my hearing is so much better I started tracking it and found that it occurs when I get my monthly cycle and am more naturally bloated. But my actual hearing remains unchanged on hearing tests. I never imagined I could bloat in the ear monthly. But I really think that slight increase must be all over my body. During these times I reduce salt, take claritin and drink extra water to flush fluids and it helps a little. Have you tried diuretics? If your hearing is the same and it is just distorting it would be worth a try.
Whenever I have episodes, depending on the severity I sometimes have distorted hearing. Between my tinnitus and the distortion, it gets to the point where my ear sounds like a sci-fi movie. When the distortion subsides, I've never noticed any hearing loss than what I've already had. I've been on a low sodium diet and taking a diuretic since March and it appears to be helping with my symptoms in general. I know many people don't have much luck with this approach but it's worth a try. It took about four or five weeks before I noticed significant improvement, by which I mean I now only have an occasional bad day as opposed to only an occasional good day.
My ears have been full for the past three days. I woke up this morning and the fullness was gone but when I went to the grocery store I couldn't hear everything the lady behind the counter said I was concentrating on her too the woman she was talking to who stood right next to me heard her every word. So I am thinking I lost more hearing.... *Sigh*