Anyone with Meniere's Disease been prescribed Betahistine?
Has anyone with Meniere's Disease been prescribed the compound drug Betahistine?
Interested in more discussions like this? Go to the Ear, Nose & Throat (ENT) Support Group.
Has anyone with Meniere's Disease been prescribed the compound drug Betahistine?
Interested in more discussions like this? Go to the Ear, Nose & Throat (ENT) Support Group.
thank you!!!!!!!!!!!!!!!!!!
Yes I take three times a day, it does nothing for me...............
Diagnosed with Menieres almost 50 years ago. My ENT put me into the Menieres group only recently. My original diagnosis was that my vertigo was caused by an allergy to wheat, corn or oats. Rather than do extensive testing, I was told to go to a low salt diet, and truly, that has worked. My problem now is hearing. I've developed tinnitus and have mild to moderate hearing loss in both ears. The hearing problem in my Menieres ear, however, has the added problem of occlusion - the noise from brushing my teeth, for example, makes it impossible to hear anything. I can find nothing on occlusion, and when my audiologist placed a $6,000 hearing aid in my ear, I knew that wasn't the right choice for me. It's been suggested that my problem is indeed caused by Menieres, but I can find no information anywhere on the subject. Just wonder if anyone has any information that would be of help. I do need a hearing aid of some sort - don't have a clue what it should be.
I'm just llke you lost...
With Meniere's, you can sometimes HEAR, but the sound is totally distorted...I think that's what you mean by "occlusion." In addition, you probably have some recruitment, where certain sounds, like a dog barking, are downright painfully loud even though you can't hear useful things. Recruitment generally means that you cannot wear an aid. I was told that my right ear (original Meniere's ear) could never be aided due to the level of recruitment; now my left ear has the same problem. I can be sitting next to someone unable to understand what they're saying, but brought to my knees by the sound of them rustling paper. Most of the time, I can hear that there's speech, but it's to distorted that I cannot understand more than a few words, if that. People who have more timbre (range of sounds) in their voice are less difficult. In addition, Meniere's means you lose your ability to hear high sounds--i.e., most women.
Now, my mind plays tricks on me by playing back sounds I used to hear, apparently to fill the void of silence. For example, sitting in my office the other day, I could swear I could hear the dishwasher running--even though I knew (a) it was not, and (b) I never could hear it from inside the office. I imagined that I was hearing the water swish around and plates rattle. How stupid is that????? Perhaps its like tinnitus, where our bodies attempt to give us something to listen to!
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@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!!
@karinzeigler . Googled Sebo Tek - interesting in that their product greatly increased the frequency range. Shall check further! I'm of the opinion that "stuffy ear syndrome" is in some way allergy-related. Checking on that, too!
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.
How wonderful for you that you've been able to contribute to such an important subject. In my opinion, water is the most critical problem facing our world today. Our power plant needs to replace two of its coal-driven turbines. I've just received information about a water-powered system which provides energy to run things such as turbines and it sounds more promising than either wind turbines or solar. I mention it because the project is being done in Portland. Sounds like Oregon is leading the country with regard to this environmental problem.
Please let us know what your new specialist has to say. I find there's a great deal of ignorance about Menieres. My two cents worth: I'm intrigued by the role frequencies play in hearing. If one manages to listen to the same radio program, say, on two different frequencies, wonder what the result would be. Anyhow, that's what I'm pursuing now and will report back if I learn anything useful. I'm extremely grateful to an organization, now gone, which did so much good for so many - the American Hearing Institute in Chicago. If this organization has morphed into another entity with a different name, I'd appreciate the information. They brought my vertigo under control so that I could lead a normal life - I'm 80 now, but I remember how awful those attacks were.
That app sounds awesome if it works! If it's any comfort, when my new cell phone wouldn't work, the carrier suggested I travel more than a mile west of my home, where service was excellent. Appears that I live in a "donut hole" located in small city in the Midwest. Appears the IT guys have some work to do!