Meniere's Disease

Posted by morninglory @morninglory, May 13, 2018

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

Hi, @phillipflippo – welcome to Mayo Clinic Connect. You'll notice I moved your message to this existing discussion, "Meniere's Disease." I did this so that you can connect with other members talking about this disease. It sounds like it's been a long road trying to determine definitively if Meniere's is your diagnosis and confusing with some of the information you've read where you don't seem to fit the profile.

Click VIEW & REPLY in the email notification and you will be able to read through the past messages by members like @trishanna @ginomayo @lioness @morninglory @estrada53. Hoping they will return and add their insights about the unclear aspects of trying to determine whether you may have Meniere's. @jamienolson may have some information to share about what may happen at Mayo Clinic's AZ campus if this disease is ruled out when you visit in January.

You might also check out the Connect Visiting Mayo Clinic group prior to your visit next month https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/.

What symptoms are bothering you most at present, @phillipflippo?

@phillipflippo

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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Dear @phillipflippo, I certainly empathize with your situation. It took years to diagnose my Meniere's. Regarding your hearing test, my hearing would come and go for many years. I could have a hearing test and it would be fine and then my hearing would disappear. I currently wear hearing aides in both ears. I also was taken off of potassium and weaned back on. I went off salt completely and maintain a low-sodium diet but it was also caffeine that was a big culprit for me. And I didn't drink alcohol. Meds did not help me — I was on an anti-nauseam med and diazepam, neither of which did anything. Changing my diet was the key. I hope the meds help you. Also, Meniere's can have a range of severity, Your appointment at Mayo will provide some insight into your situation. I've seen the ENT team in AZ and they are wonderful. Wishing you the best. Take good care of yourself.

@estrada53

Dear @phillipflippo, I certainly empathize with your situation. It took years to diagnose my Meniere's. Regarding your hearing test, my hearing would come and go for many years. I could have a hearing test and it would be fine and then my hearing would disappear. I currently wear hearing aides in both ears. I also was taken off of potassium and weaned back on. I went off salt completely and maintain a low-sodium diet but it was also caffeine that was a big culprit for me. And I didn't drink alcohol. Meds did not help me — I was on an anti-nauseam med and diazepam, neither of which did anything. Changing my diet was the key. I hope the meds help you. Also, Meniere's can have a range of severity, Your appointment at Mayo will provide some insight into your situation. I've seen the ENT team in AZ and they are wonderful. Wishing you the best. Take good care of yourself.

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Thank you @estrada53 ! This is some good information to chew on.

@lisalucier

Hi, @phillipflippo – welcome to Mayo Clinic Connect. You'll notice I moved your message to this existing discussion, "Meniere's Disease." I did this so that you can connect with other members talking about this disease. It sounds like it's been a long road trying to determine definitively if Meniere's is your diagnosis and confusing with some of the information you've read where you don't seem to fit the profile.

Click VIEW & REPLY in the email notification and you will be able to read through the past messages by members like @trishanna @ginomayo @lioness @morninglory @estrada53. Hoping they will return and add their insights about the unclear aspects of trying to determine whether you may have Meniere's. @jamienolson may have some information to share about what may happen at Mayo Clinic's AZ campus if this disease is ruled out when you visit in January.

You might also check out the Connect Visiting Mayo Clinic group prior to your visit next month https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/.

What symptoms are bothering you most at present, @phillipflippo?

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I have an ever present profound sense of confusion and dizziness that, without sedatives (lorazepam) makes my life impossible to navigate.

I am not sure that I have Menieres or not. One doctor told me I had it – another doctor said no. I have not had the dizziness that I had a number of years back, but I have stuffed ears most of the time. . I got hearing aids which help the hearing somewhat, but when my ears are stuffed up i can barely hear even with the hearing aids. . None of the doctors I have seen have helped with the stuffed up ears. I have taken steroids for a month – that did not help. I watch my diet – very little salt but I do eat chocolate ones in a while. I wish I find a help for the stuffed up ears

@karinzeigler

I am not sure that I have Menieres or not. One doctor told me I had it – another doctor said no. I have not had the dizziness that I had a number of years back, but I have stuffed ears most of the time. . I got hearing aids which help the hearing somewhat, but when my ears are stuffed up i can barely hear even with the hearing aids. . None of the doctors I have seen have helped with the stuffed up ears. I have taken steroids for a month – that did not help. I watch my diet – very little salt but I do eat chocolate ones in a while. I wish I find a help for the stuffed up ears

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@karinzeigler Hi I also have tinnitus or menieres Dr can't tell what I only have the ringing in ears I use to have the stuffiness but took mucinex for it That cleared that up Going of dairy products has helped .Dr,s seem to not know really like so many things

@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.

@trishanna

@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.

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I can relate to the stuffy feeling. I never heard of occlusion but I do have echo-like sounds of my own own voice. Thank you for the information. The echo in my ears drives me crazy. I purchased the $6000 hearing aids – they help me when my ears are not stuffy but still have problems when my ears are stuffed up which is most of the time. I just read about some hearing aids by SeboTek that is supposed to help occlusion. I don't know anything about this company or their hearing aids but wondered if anyone has heard about hearing aids for occlusion . I do not drink milk or eat any milk products, & very little salt. I will definitely stop the chocolate and see if that helps. II have tried some decongestant but it did not help me.

@karinzeigler

I can relate to the stuffy feeling. I never heard of occlusion but I do have echo-like sounds of my own own voice. Thank you for the information. The echo in my ears drives me crazy. I purchased the $6000 hearing aids – they help me when my ears are not stuffy but still have problems when my ears are stuffed up which is most of the time. I just read about some hearing aids by SeboTek that is supposed to help occlusion. I don't know anything about this company or their hearing aids but wondered if anyone has heard about hearing aids for occlusion . I do not drink milk or eat any milk products, & very little salt. I will definitely stop the chocolate and see if that helps. II have tried some decongestant but it did not help me.

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@karinzeigler I also never heard of occlusion and have hearing aids Phonic is the brand it has helped me with tinnitus instead of loud ringing it is a quiet humming but yes still there . Going of dairy has helped but hasn't stopped it so I don't know the answer . When my head felt like it was all stuffy the decongestant helped me . Then I became dizzy and started losing my balance Dt. sent me to a Ear Dr. for testing it was a 2 hr test haven't gotten the results yet If anyone finds an answer I would really like to know

Hello All:
Regarding the problem with tinnitus and the stuffy-ear feeling, I have found that taking NSAID (meds like ibuprofen, Advil, aspirin, Motrin, etc.) tend to make the symptoms much worse (however, I don't think that they necessarily cause them). Because of a lot of arthritis pain I just use one Advil in the evening to help reduce the pain/inflammation while I sleep but if I take more than one a day, my hearing gets worse (feels like my ear canal is filled with cotton) and the ringing in my ears increases in volume.
Anyone else found this to be true?

Liked by Parus, lioness

@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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I have had Meniere's since my early 40's (now 58). The severe dizziness and nausea has subsided but I have lot almost all of the hearing in that ear. Trying a one sided hearing aid but still not able to discern sound location and speech clarity. Are you having luck with your bi-cross hearing aids? Meniere's has a lot of challenges to work through. I had lost a lot of hearing in my affected ear and then had a sudden onset of almost all hearing about a year and half ago. This has really been a challenge. Feel disoriented and slightly uncoordinated. Hard to explain. Open for suggestions.

Liked by Parus

@hopeful33250

Hello All:
Regarding the problem with tinnitus and the stuffy-ear feeling, I have found that taking NSAID (meds like ibuprofen, Advil, aspirin, Motrin, etc.) tend to make the symptoms much worse (however, I don't think that they necessarily cause them). Because of a lot of arthritis pain I just use one Advil in the evening to help reduce the pain/inflammation while I sleep but if I take more than one a day, my hearing gets worse (feels like my ear canal is filled with cotton) and the ringing in my ears increases in volume.
Anyone else found this to be true?

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Interesting. Some of the NSAIDS can cause mild to moderate fluid retention. I wonder if that is why it makes your symptoms worse. I cannot tolerate NSAIDS for different reasons. Started taking turmeric 500 mg daily for joint pain. It is working pretty good. Not as good as ibuprofen but pretty good. You might try that.

I have been reading and following this thread. I have a friend with Meniere's. I am learning from the comments. I have no hearing issues but know many that do.

@grannyjack

Interesting. Some of the NSAIDS can cause mild to moderate fluid retention. I wonder if that is why it makes your symptoms worse. I cannot tolerate NSAIDS for different reasons. Started taking turmeric 500 mg daily for joint pain. It is working pretty good. Not as good as ibuprofen but pretty good. You might try that.

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Interesting thought, @grannyjack

Occlusion is a word used to describe the effect a hearing aid has for some people when it is an in-ear type device. It seems to cause a "bucket over the head" type sensation – stuffed up ears, if you will. However, I have the same symptoms without a hearing aid and I have researched all over the internet and can find no information. Even tried hearing associations, etc. It's interesting that others seem to have a similar problem. I'm convinced there is a connection between my occlusion symptoms and Meniere's disease.

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