Anyone with Meniere's Disease been prescribed Betahistine?

I been suffering of the same exact symptoms for over 30 years. When they injected the gentimicin in my left ear the vertigo and attacks stopped for almost 20 years. Now they are back....Menieres it's an autoimmune disease. Neurologists don't do anything for it.
If you are near Long Island NY, the best at this is Dr. Vambutas at LIJMC in Long Island, she is the only one in the country that can prescribe injections you give your self everyday to suppress the immune system.

Good luck!

Hi @kimhal. I've have hearing issues since my early thirties, was diagnosed with Meniere's at 40 and wear bi-cross hearing aids. I am deaf in my right ear and the hearing aid acts as a transmitter to a receiver/hearing aid in my left ear , which has a moderate to severe hearing lass. I have had several major episodes of vertigo along with crawling to the bathroom to regurgitate for an hour and then to bed for nearly 24 hours in order to recalibrate and rebalance my body. I have had to feel along walls to make it to a bathroom and I had to have a neighbor walk me into my house so I wouldn't fall over. I had to pull off of Lake Shore Drive, crossing over several lanes, nearly running into other cars. The fire department had to take me to the hospital. It got to the point that I could sense when an episode was nearing and I would count the minutes until I could arrive home. Anti-nausea meds and valium did nothing to help the episodes and I didn't enjoy taking any drugs. I gave up caffeine, went on a low-sodium diet - sodium is everywhere -and reduced my sugar. As the years went by, this occurred less and less and I haven't had an episode in over 10 years. At the same time, I was working full time - inconvenienced but not incapacitated. When I first began to lose my hearing, doctors thought I might have systemic lupus, the only disease they think can cause hearing loss. I did not. It ends up that I was later diagnosed with sarcoidosis, another auto-immune disease which eventually led to my heart transplant at Mayo. The sarcoid went to my lungs, my eyes, and I believe my ears as well, and my heart. My heart transplant doctor at Mayo still has me on prednisone to protect my heart and the rest of my body from any recurrence of the sarcoid. I do have the tinnitus and tried LipoFlavonoid, didn't perceive a difference until I stopped taking it. My ENT says it can help in perhaps 1/3 of patients with ringing in the ears. Wearing my hearing aid definitely distracts. I hope this helps on some way. We are all so unique, have other issues and medicine is still evolving. Wishing you and your husband positive steps in resolving this for him.

Thanks for this.... it sounds all to familiar. He does take the lipoflavanoid pills as well. He can feel an attack comming on but sometimes it comes on so fast he is out of commission for yes 12 to 24 hrs in fetal position. Noises do bother him as well at times. He was told he would benefit from a cochlear implant but they want to know why his symptoms have not subsided and have been constant. Is what we were told. Nobody seems to know so they just send us to other specialists. He has been on the prednisone and it did nothing he was told also they could go ahead and inject prednisone into his good ear but he could lose his hearing completely and that is not something we want to go through. Especially since he is deaf in the other ear. It is so frustrating. He last neurologist he seen 3 yrs ago pretty much made him jump on one leg and walk forward touch his nose and sent him on our way. So this is why I'm thinking about the mayo clinic where we could maybe get some concrete answers and info since it has been a run around here we have gotten nowhere since dec. Pretty sad and a let down!

Had not heard of Betahistine, but will be interested in any comments. From what I am able to learn on the internet, it does not seem to be very effective even though widely used.

Thanks for this.... it sounds all to familiar. He does take the lipoflavanoid pills as well. He can feel an attack comming on but sometimes it comes on so fast he is out of commission for yes 12 to 24 hrs in fetal position. Noises do bother him as well at times. He was told he would benefit from a cochlear implant but they want to know why his symptoms have not subsided and have been constant. Is what we were told. Nobody seems to know so they just send us to other specialists. He has been on the prednisone and it did nothing he was told also they could go ahead and inject prednisone into his good ear but he could lose his hearing completely and that is not something we want to go through. Especially since he is deaf in the other ear. It is so frustrating. He last neurologist he seen 3 yrs ago pretty much made him jump on one leg and walk forward touch his nose and sent him on our way. So this is why I'm thinking about the mayo clinic where we could maybe get some concrete answers and info since it has been a run around here we have gotten nowhere since dec. Pretty sad and a let down!

Before I get to my ultimate 2 questions, I wanted to provide a little background on my current state. I have for 7 years been trying to discover what has been happening to me, I feel light headed, nausea, dizziness, vertigo, motion causing me problems, confusion, and ultimately, I feel as if I have a permanent concussion. Most days I spend the first half of my day laying in a dark room hoping my medicine will work today and I can just be calm. With ingesting lorazepam during the day and Seroquel at night, I can’t even begin to function. I cannot drive a car and cannot work since my condition worsened in early 2018, even simple tasks are almost unbearable to perform.

I have been on over 24 different medications, seen 6 flavors of specialists (14 total doctors/specialists), and spent years trying to pin down what is wrong with me and recently (3 months ago) I finally had someone who thought they might know what is happening with me. So, I have recently been given, by two separate ENTs a definitive diagnosis and definitive denial of the diagnosis of Menieres Disease. Basically, I had one local ENT Doctor review my records and within about 15 min of asking me a variety of health-related questions, was absolutely certain that I had Menieres Disease. He conducted a variety of balance, coordination, and reflex tests (all of which I did very well at) and then scheduled for me to have an ECOG ran the subsequent Saturday to “definitively identify” whether or not I had Menieres. Even my father arrived to check in with me (around halfway through my appointment) having the ENT Doctor repeat his certainty of having discovered what has been ailing me for all these years (Menieres). The ENT Doctor discussed with me that Menieres was very curable and that treatment would consist of first cleansing the body of sodium (low/no sodium diet) and potassium (and adding back the potassium, see medications below) for a period of 3-6 months, if no improvement is had then I would receive a series of steroid injections over the course of a month, if this did not help then I would receive a specialized surgery (Endolymphatic Shunt Surgery).

He then prescribed me the following being certain of my condition (I will not take either until I have reconvened with Dr. Boston):
a. Acetazolamide ER 500 MG
b. Potassium Chloride ER 10MEQ

After having this uplifting appointment I began to review his provided documentation and look harder into the disease to learn more about it. To my growing dismay it seemed somewhat evident, based on information from multiple sources (and the Mayo Clinic’s website more specifically), that I did not fit the profile for Menieres Disease. More specifically the Mayo clinic defines 2 sets of information that made me feel uncertain of my new, seemingly premature, diagnosis:
1. The Mayo clinic defines a set of criteria in order to be diagnosed with the disorder as follows (my responses underneath):

a. Two episodes of vertigo, each lasting 20 minutes or longer but not longer than 24 hours: I have had more that 2 episodes of vertigo (an at least weekly occurrence) but my condition does not ever “come-and-go” it is ever present.

b. Hearing loss verified by a hearing test: I have had a recent hearing test and my hearing registered as good.

c. Tinnitus or a feeling of fullness in your ear: I have much more frequent tinnitus than I ever used to in my life (3 times a day or so in both ears) but I absolutely do have a feeling of fullness in my ears at all times (can pop my ears repeatedly without end).

d. Exclusion of other known causes of these problems: I am not certain what this would entail so I cannot speak to this.

2. The Mayo clinic discusses the use of the ECOG in regard to identifying Menieres Disease as follows:
"Electrocochleography (ECoG): This test looks at the inner ear in response to sounds. It might help to determine if there is an abnormal buildup of fluid in the inner ear, but isn't specific for Meniere's disease."

I now, at this point, even have another specialist who is certain I am suffering long term issues related to a series of traumatic brain injuries and certainly not Menieres. So, my 2 questions are:

1. Is there anyone else who seems to have the symptoms of Menieres Disease, but the symptoms never come and go, they are around at all time (never better never worse)?

2. I am currently already scheduled to come to see a Mayo Clinic in AZ this coming January (ENT Department), but if the Doctors in that department clear me of the diagnosis of Menieres, will they work with me as a team to ensure I get the help I need from the right (different) department(s)? Basically, it terrifies me of the mere prospect of me going all the way to AZ, have ENT issues ruled out, and then not be able to have a group of medical professionals continue to work with me until we figure this issue out (no matter what specialties are needed).

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.