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Anyone with Meniere's Disease been prescribed Betahistine?
Ear, Nose & Throat (ENT) | Last Active: Jun 29 8:37am | Replies (217)Comment receiving replies
@joyces You are amazing! Have done a bit of research and recruitment appears to be the answer. What's even more amazing is I did not mention my problem with "loud!" My husband, who has a normal hearing problem, turns the sound up fill blast! It hurts! Now, this appears to be a recognized problem, so where are all my ENT people, who seem to be unable to understand my problems? I'm betting recruitment is just one part of the puzzle. My "occlusion" problem actually is more like I've a bucket over my head, not quite what I read about, nor is hyperacusis You've solved one of my big problems, though, and that is listening to any device that transmits or broadcasts sound. For example, the sound of crowds cheering at a sporting event is painful; the same noise live is no problem. I can hear cellphone to cellphone, but not cellphone to landline. I can see it has to do with frequencies. Wonder if people who have a wider range of sound are actually changing frequencies?
Wish I had some suggestions for the other hearing problems you mentioned. I do hear a "whooshing" sound just like my back door opening, but so far, that's my only imaginary sound. I have physical problems with my ear, including discomfort, itching, and a feeling of water in my ear. Seems to me that although Menieres is an old syndrome, we are still a long way from solutions. It's worrisome about not having a hearing aid that will work- thought it was just a matter of finding one.
Again, thanks so much for all the information - very helpful!!
Replies to "@joyces You are amazing! Have done a bit of research and recruitment appears to be the..."
I have the similar symptoms , dealing with Menieres for 35 years, had seen more than 8 to 10 professionals ENT, 4 in NYC , 3 in NJ, 2 in Argentina etc....there is no magic bullet ......
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I am working on getting an appt. with a doc who specializes in Meniere's AND CIs. The hearing test I had over a week ago was in order to get referred to this "higher up" guy. I don't expect miracles to happen, though. I've always been frustrated by hearing tests because I DO hear, just cannot understand much of the time. If I could take larger doses of HRT, I'd be hearing much better, but docs are afraid of having "mature" folks take hormones at all, let alone enough "just" to maintain hearing. "Learn to get used to it," the doc at the testing place said. Wonder how he'd like to live this way?????
The one thing I am sure of at this point is that VRT (vestibular rehab) prevents crises. I believe that crises are a response to attempting to use our eyes for balance, which is all bad. Every time we move or move our head, our focal point changes, meaning we don't know where we are until we "recalibrate." Once you've really learned VRT, using your third balance system instead of the your eyes (second balance system), balance is far, far better.
I like your analogy of feeling like there's a bucket over your head--good description! I'm working on a huge report about the various types of water withdrawal here on the central Oregon coast. The outcome of this pilot project will determine how water is allocated throughout the entire state, so it's really, really important. Some of the things I've worked toward for decades are falling into place, but not being able to hear during meetings or over the phone is making work very difficult. This will probably be the last really big thing I accomplish (I'm 77 now), kind of a capstone to decades of working for the environment and fish. With that in mind, I WILL find ways to participate, get the damned bucket off my head!
I'm looking at a new app just for Android devices called Live Transcribe. It sounds as though it will make it possible for me to see what's being said in a group situation on a phone or tablet. There's also an IPhone app that works for phones, but won't work for my office because we live in the woods with zero cell reception. I'm stunned that neither the various hearing clinics nor techs are aware of how to deal with having no reception. Surely we aren't the only people who live in the shadow of a high hill! We are, after all, only a little over a mile from a huge tribal casino, like it or not.