Anyone with Meniere's Disease been prescribed Betahistine?

@karinzeigler Although I was diagnosed with Menieres, I've not had episode for many years. Now I have tinnitus, hearing loss, and a "feels like there's a bucket on my head" stuffy feeling. Finally got a name for it - occlusion - but can't find anything on it. I can't find anyone who seems to know how to solve the problem - I refuse to spend $6,000 for a hearing aid that, since it fits inside my ear, makes the problem worse. There was a link for Menieres to a blog, I think, but I've lost it.

Vertigo, nausea, unable to see correctly and severe ringing in the ears. When an episode occurs I must lay down as it's too difficult to walk. The reason I asked about the Betahistine is I had heard on NPR an interview with a Dr. David Kaylie MD FAC an associate Professor of surgery head and neck and Communication Sciences at Duke University speak of Betahistine as a med that they had had success with for patients with Meniere's. Also that it has been used for Meniere's in Europe for decades. My ENT dr. was not familiar with it nor was my family dr.. Am hoping someone that has taken it can pass on an opinion and also how to find a doctor that is aware of this medication.

Hi everyone. I've had Meniere's since 1992 when I was 39 years old. It caused years of episodes, vertigo and hours of regurgitation. I would literally crawl to the bathroom, because I couldn't walk. I was given diazepam to calm the vertigo, along with nausea medication and all to no avail. I had an episode while driving 60 miles an hour on Lake Shore Drive in Chicago. Nearly killed myself and other folks. Then I stopped using caffeine, lowered my sugar intake and went all low-sodium. I have not had an episode in over 12 years. I do have tinnitus - the ringing in my right ear, where I am now deaf. I wear bi-cross hearing aids. I have tried Lipo-Flavonoid - available at most pharmacies and at Target, etc and online. I did notice a decrease in the ringing. Rehab absolutely worked and I kept the pictures of the exercises on my inside cupboard doors for many years. Whenever I would begin to "feel" the onset of an episode I would begin the exercises. Retraining the brain. Hope this helps someone.

I've had MD for about 4 years now, only had vertigo episodes for the first year. Just dizzy every now and then. I did finally lose about all my hearing out of my right ear that was attacked. It was becoming harder to hear and function. So I did break down and get a hearing aid. It has helped so much. They put a rubber filter on it and I don't hear any ringing when it's on. It has also helped my balance and being able to stay in a room with lots of noise. The ear tech also told me that they are seeing a high number of people who don't fix their ear with a hearing aid have dementia later in life. It's due to you making your brain have one ear do all the work, it's too much for the brain to process over a long period of time. Don't let the cost get you. I got one and it was around $3,500. Cheap ones won't work. I find that a single Sudafed or Advil help on days of stuffiness. Most days I just let it run its course and it goes away. Much worse when I have a cold or allergies. Stay strong! MD sucks....lol

I hope you are able to hang in there with the hearing aids. I was told the first week of use you will hear yourself speaking and it will sound odd; the next week your voice will sound more normal but other voices will sound odd and finally everything will sound more normal. The goal was to wear them for 2 weeks, 12 hours -14 hours a day. The audiologist was correct, after two weeks, I adjusted and liked them.

It's not approved in the US

Reply to a post by december 1011 on the hearing discussion list:
First, Meniere's Disease (and most inner ear diseases) are extremely difficult to diagnose, beyond the training that ENTs get. As a result, 80% of those diagnosed with Meniere's actually have something else; and new diseases continue to be identified. I've had Meniere's most of my life, although it wasn't formally diagnosed until I was in my 40s (and stopped taking birth control pills, i.e., hormones). I was sent to an ENT who patted my hand and said, " Now, now, Dearie, just quit your silly job, take Valium, and stay in bed." Although at that time (36 years ago) allergies had been recognized as often contributing to the hell of Meniere's, he simply shrugged off my question about allergies with, "I don't believe in them." I often wished I could go back and punch him out. <g> Fortunately, my own primary doc, who often fished with my husband and me back then, said we had to find a decent answer. At that time, because the crises I was having had come on with increasing intensity within a day of the onset of a period, we had a very good clue about what triggered the worst days: low hormone levels. We spent four years floudering around before we found a safe combination of estrogen and progesterone; in less than a month after starting taking both daily, I quit having V&V (vertigo and vomiting) crises--I had been having them as often as 3X/week.

Because my primary doc assigned me the task of learning everything I could and bringing articles to him to review, I learned a great deal about Meniere's. I also found an online discussion group and was one of the moderators for decades, until FB pretty much replaced it. Since I'm a book designer/publisher by profession, I nagged VEDA into doing three books about inner ear disease back in the mid 90s;
"Meniere's Disease, What You Need to Know" was the first book published in the US about the disease. So, I ain't a doc, but I've learned a great deal, both from my own experiences and from moderating a group of so-called Menierians. Here are some basic facts:
1. If possible, see a neurotologist, esp. if you believe a diagnosis will fix things. (It won't, so it may not be worth that effort.)
2. Before taking that step, start a diary or calendar. Note the kind of day you've had AND even the slightest deviation from what's normal for you, especially in terms of diet, stress, rest, weather, exercise, travel, etc. Regardless of what actual disease you may have, you will learn that something or things trigger the really bad days. Once you find your personal trigger, you need to eliminate it or figure out a way to make it a less important part of your life.
3. If you do see a specialist, ask about these diseases that are commonly misdiagnosed as Meniere's: MAV (migraine associated vertigo), sticky platelets, and BPPV (benign paroxysmal positional vertigo). Note that many true Menierians also have BPPV, by the way.
4. Understand that your lifestyle/profession will lay a role in what you are most concerned about--hearing or balance (vertigo). I was an active amateur musician 40 years ago, so the hearing problems really bothered me--I had to quit playing entirely, as it was simply too painful and I didn't feel that I was able to hear well enough to be a part of an ensemble or orchestra. If I had been a tightrope walker, I would have been more concerned about balance issues. (Duh!)
5. True Meniere's involves both hearing and balance. It usually is unilateral (one-sided) when it begins and may well never affect the other ear by going bilateral. The percentage of true Menierians who eventually go bilateral is fairly small, so that's encouraging. (I note that, after 35 years of learning to live with an active unilateral case, I went bilateral, losing most hearing in my "good" ear in an instant. The balance issues came later.) Hearing is less not being able to hear than having both recruitment and distortion. Recruitment means that many sounds, especially sharp, loud ones or constant background noise (like the fans on our wall heaters or the dishwasher) are magnified to unbelievable degrees; a sudden sharp sound like my dog's bark, simply slices through my head like a knife. Distortion makes it impossible to understand what is being said even though you can hear that someone is speaking. Not only do hearing aids not help either of these problems, but it may be impossible to wear an aid if you have a great deal of both recruitment and distortion. The balance issue means that at some point you will have V&V episodes, often lasting for several hours each. Some docs rely on the ranges where you've lost the most hearing to diagnose Meniere's, but that is far from infallible. There is no test to prove conclusively that you do have Meniere's. You will probably have an MRI to rule out an acoustic neuroma, a tumor on the acoustic (hearing) nerve.
6. Years ago, the usual recommendation was a nerve section: cutting the vestibular nerve. This had a 20% chance that you'd never be able to walk again, so I rejected it. It also doesn't deal with balance issues. I also has an excellent chance of leaving that ear totally deaf. Nerve sections are almost never done today. There were also shunts, which drained away the excess fluid believed to be the culprit. One of the early astronauts saved his career by having a shunt. They were very popular 30 years ago, but often failed after a few years. Today, perhaps the best solution is a cochlear implant because it bypasses the part of your ear that makes it impossible to hear--but you still would need to deal with balance issues.
7. MOST IMPORTANTLY, find an expert VRT specialist (vestibular rehab) and DO THE EXERCISES EVERY DAY. Lots of people say that they have done VRT but it didn't help. In my experience, anyone who truly does the work will see will improvement. When your primary inner ear balance system fails, you automatically begin to rely on vision for balance: doing that leads to severe vertigo, because every time your move your head or drive around a corner, you lose your focal point. Your faulty inner ear is saying one thing, while your vision says something else, and you become the battlefield with V&V crises. You will need to do VRT EVERY DAY FOR THE REST OF YOUR LIFE--no cheating, no days off. Even though I'm now bilateral and am 79, I still do difficult instream fisheries data collection in a wild little river that lots of college students have found to be a real challenge. Due to my age, I move more slowly; due to Meniere's, I move more carefully, especially while wading; I no longer routinely do the most difficult instream surveys, leaving those for the younger, fitter folks, but I'm the only one who does all the work in the five miles of the lower river, which means a minimum of hiking/wading 3.5 miles each day that I spend on the river. I wouldn't be able to do this if I didn't do VRT every stinking day, spend some time walking in the dark, etc.
8. If you are having V&V crises, do NOT ever go to the ER. There's really nothing they can do, and all the bright lights, questions, requests to do this or that, only make matters far worse. Just the business of being moved to the ER will prolong the crisis. Let everyone around you know this, so that some helpful person doesn't try to pack you up and transport you to the ER.

Good luck!