Hi! I am pretty new here just having been diagnosed in the past 2 weeks. I have complete hearing loss in my right ear and 60% loss in my right. I had been complaining of the fullness, ringing, pressure for over a year and not until the dizziness started did someone put it together. They kept treating me for sinus infections. I was given Klonopin and told to start on diuretics (which my cardiologist does NOT want me to take) and was pretty much told nothing could be done to help my hearing. I left the office devastated. I must really stink at expressing myself to the doctor because I came home totally confused. Your forum has been a godsend to me but still leaves me with a lot of questions. So....I have made an appointment with another doctor for a second opinion I would love some guidance as to what type of questions to ask. I think I was shell shocked at the last appointment and heard nothing but I'm sorry to have to tell you this...blah...blah...blah. I really need to know if there is any chance of saving any of my hearing and I am scared someone is going to say "well, if we would have caught it sooner" or some other phrase to just blow me off. Any suggestions how to ask the "right" questions.
I had sudden hearing loss and I am on doses of predinsone to try and bring some hearing back. It took the doctors years to dx me when I was 12 because kids don't get meniere's Good luck with everything!
Actually, your hearing may fluctuate on and off for a bit. It's a characteristic of Meniere's and I went for over a year being able to hear for a couple of weeks and not for the next three and so on. However, the doctor did tell me that with meniere's, you can pretty well assume that you will lose your hearing (as he put it) sometime in the next 10-12 years. Like you, I was treated for "allergies" for months before the vertigo attacks finally convinced me to seek a specalist because I knew it had to be something more than that. OK, with that depressing stuff out of the way, there are some things you should try to help preserve your hearing. If your doctor is willing to try anti-viral meds, you should do that ASAP. Some people here have been helped and others have not, but it's sure worth a try. If he won't prescribe anti-virals and you don't want to change doctors, you should, as a minimum, try the JOH regimen with healthy doses of L-lysine to help surpress the possibility of herpes involvement in your ear(s). There are those here that have been helped with hearing aids. If you try that route, hopefully you have insurance to help cover the cost. Some insurance will cover it and some won't. The thing that's surprising to me about hearing aids is that Medicare apparently won't cover them. I was shocked when my uncles told me that they could not get hearing aid coverage from Medicare. However, both were veterans (Navy and Coast Guard) and they were eligible for complete cost coverage through their GI insurance. Their hearing loss has nothing to do with Menieres, but just good old fashioned old age. Good luck with your efforts to save your hearing. I'm not sure what sort of doctor you are going to, but you should seek an otoneuroligist who is truly a specialist in nerve related issues for the ear. I'm not sure that "catching it sooner" would have prevented the long term effect of meniere's, but it may have been helpful in prolonging the inevitable. For some, the key to posponing or slowing the rate of hearing loss is anti-virals or lysine. Unfortunately it's no guarantee.
what kind of doctor did you see, and what tests have they done? what kind of doctor is your 2nd opinion one? I was misdiagnosed and told "nothing could be done" for YEARS, and it wasn't true...but something could have been done. When they tell you "nothing can be done" they are talking about themselves. THEY are stumped. Some other doctor may not be. Nobody tried prednisone? did they test you for auto-immune ear disease? Read up on the lifestyle changes you can try...and John of Ohio.
Prednisone (a steroid) is usually helpful if it's AIED (autoimmune inner ear disease). Mine is not AIED so Prednisone did not help me. You already have significant hearing loss. Have you considered hearing aids?
Poppaharley is right, there ain't no "catch it sooner" with this Beast. I would be distrustful of any doc that said that. Now that we have covered that point, see if you can find a neurotologist (inner ear specialist). Else, go for the anti-virals and also consider dietary changes such as avoiding glutens. Me, I'm on the JOH and have had success although it took months for major relief. Don't give up - give it the good fight!
Thanks for all the input. Monday I am going to see an ENT at the Cleveland Clinic. I want to bring up the issue of autoimmune involvement since I already have Rheumetoid Arthritis. Does anyone know what kind of tests they can do to determine the difference? The dizziness is getting worse, I am worthless at work and anxiety is taking control. I really need to hold it together. Those of you that asked about my diet should know that I already have been eating totally gluten free for 2 years now and already watch my sodium intake, so that's not an option for me. The first doctor gave me diuretics but my cardiologist put a stop to that unless there are no other options (He's worked with me for 25 years to keep my heart going and doesn't want me to mess up now.) I want so bad to fight this and right now I feel so helpless. I provide the financial support for my family and the health care and I am running out of sick days already. I HAVE to find a way to deal. I hope this new doctor is supportive and open minded. Wish me luck.
the first ent I saw said my hearing in my right ear was too far gone to have any benefit from a hearing aid. all she said about my other ear (55% loss) was that she was surprised how fast the loss occurred. All my hearing loss has occurred in a year and a half. she said that was unusual for MM. I was so confused I didn't know what to think. Any experience with how rapid hearing loss occurrs?
