Meniere's Disease

Posted by morninglory @morninglory, May 13, 2018

Has anyone with Meniere’s Disease been prescribed the compound drug Betahistine?

Hi @morninglory, thanks for starting this discussion specific to Meniere's Disease. I'm tagging @pedie @trishanna and @huoda to join the conversation.

MorningGlory, are you currently taking Betahistine? Is dizziness or vertigo the symptom you experience the most with Meniere's?

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.

Liked by lioness

@morninglory

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.

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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.

@morninglory

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.

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Very interesting that you saw negative info about it as Dr. Kaylie experienced much success with Betahistine. I am most interested to hear from those that have used it.

@ginomayo

Does anyone have a success story to tell? I tried an injection of Genta Miacin into the ear. My 3rd injection is due in 2 weeks. No Meniere's attacks for 3 years. However, the medication causes loss of balance… Rehab to regain not working to well. Perhaps it is my age as others have succeed. (88)

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@ginomayo Since possible side effects of this antibiotic include vertigo and dizziness, have you discussed this with your doctor? For Meniere's disease, it's terribly important to be on a low-salt diet. Stay with the rehab – sometimes it just takes time.

Does anyone have a success story to tell? I tried an injection of Genta Miacin into the ear. My 3rd injection is due in 2 weeks. No Meniere's attacks for 3 years. However, the medication causes loss of balance… Rehab to regain not working to well. Perhaps it is my age as others have succeed. (88)

Hi @ginomayo and welcome to Connect. You may have noticed I moved your post to this existing thread on Meniere's Disease so that you can hopefully learn from others who have this disease.

I wanted to thank @trishanna for posting a response and @morningglory may have some thoughts on this as well, or advice to offer.

Back to you @ginomayo I also wanted to ask if you have spoken to your doctor about your continued loss of balance?

@ethanmcconkey

Hi @ginomayo and welcome to Connect. You may have noticed I moved your post to this existing thread on Meniere's Disease so that you can hopefully learn from others who have this disease.

I wanted to thank @trishanna for posting a response and @morningglory may have some thoughts on this as well, or advice to offer.

Back to you @ginomayo I also wanted to ask if you have spoken to your doctor about your continued loss of balance?

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Ive had meinieres since I was in my 30,s Dr at that time said there,s nothing can be done Im no76 and the ringing,humming hasnt gone away now Im haven't ng more vertigo ,have to hold o to things when I get up .Is there anything out there ?
Id appreciate any comments

@lioness

Ive had meinieres since I was in my 30,s Dr at that time said there,s nothing can be done Im no76 and the ringing,humming hasnt gone away now Im haven't ng more vertigo ,have to hold o to things when I get up .Is there anything out there ?
Id appreciate any comments

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@lioness. Dizziness upon arising may not be Meniere's, but rather a blood pressure problem. Do check with doctor. Otherwise, I have the same symptoms and to the best of my knowledge, there is still no cure.

@trishanna

@lioness. Dizziness upon arising may not be Meniere's, but rather a blood pressure problem. Do check with doctor. Otherwise, I have the same symptoms and to the best of my knowledge, there is still no cure.

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@trishann Thanks for replying. I,ve had my blood pressure checked its always 130/72 .When I,m busy I don't notice it its when I,m still my ears aren't. There are so many diseases Dr,s just don't know about.

@ginomayo

Does anyone have a success story to tell? I tried an injection of Genta Miacin into the ear. My 3rd injection is due in 2 weeks. No Meniere's attacks for 3 years. However, the medication causes loss of balance… Rehab to regain not working to well. Perhaps it is my age as others have succeed. (88)

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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.

@estrada53

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.

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@estrada53 Thanks for this information I'm glad you are safe Haven't tried Lipo -flavonaid Will get some payday My problem now is the vertigo I have done the ear exercises but they haven't helped this so I don't know what to that think.

Just a quick question. Have you stopped all caffeine – coffee, tea and chocolate? It made a huge difference for me. And my worst culprit was tortilla chips and salsa. For some reason, I always wanted to eat them. Salt and all. So that was a big trigger. I can eat them now, but for a long time, it provoked my vertigo.

Liked by lioness

@estrada53

Just a quick question. Have you stopped all caffeine – coffee, tea and chocolate? It made a huge difference for me. And my worst culprit was tortilla chips and salsa. For some reason, I always wanted to eat them. Salt and all. So that was a big trigger. I can eat them now, but for a long time, it provoked my vertigo.

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@estrada53 I,ve cut my coffee to 2in morning I do herbal tea but recently I,ve started doing coco chocolate also have to cut them out don't do much salt

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).

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