Meniere's Disease

Posted by morninglory @morninglory, May 13, 2018

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

Liked by annekat

@joyces

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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Thank you!

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@joyces

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!!

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@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 . 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!

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@trishanna

@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!!

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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.

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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!

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@joyces

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.

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I did VRT, but it did no help…..
Now I am dealing with my deaf left ear and the cochlear implant that does not work.
The right ear is very compromised , I have a hearing aid in that one. Horrible attack last week were the vertigo took me to the emergency room….
After 35 years living with this, I did everything!!!!!!! but….it is what it is….
I going for private yoga classes , meditation and all the possible things to try and control the stress that living like this brings.
Everyday I wake I say, "today its going to be better" and every night I go to bed and say to myself…."tomorrow is going to be better"….I am waiting for a miracle…

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@trishanna

@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!!

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I have the similar symptoms , dealing with Menieres for 35 years, had seen more than 8 to 10 professionals ENT, 4 in NYC , 3 in NJ, 2 in Argentina etc….there is no magic bullet ……

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@susyq213

I have the similar symptoms , dealing with Menieres for 35 years, had seen more than 8 to 10 professionals ENT, 4 in NYC , 3 in NJ, 2 in Argentina etc….there is no magic bullet ……

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@susyq213 Oh, I so agree! Went to eight different ENT specialists, ended up with a box of medicines and no solution to my problem.

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Hi there. First post written. My husband is suffering since dec with ringing in ears. He is deaf in left ear and was diagnosed with meniers in 2010 which when he has had attacks they would come and go. Where this one has stayed and he is not able to work , drive his hearing in his rt ear is affected and can barely hear. He has tons of pressure in head , ringing, weak in legs, dizzy at times nystagma, cant focus ,nausea . We have been to several 2 ents 1 kidney specialist and now see a neurologist this next week. Anyone else with these issues that has found any relief? It is horrible watching your loved one like this. He says it is like Charlie brown's mom on phone. He has been on serc , prednisone, lasix, and more and absolutely no relief.

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Hi @kimhal you may have noticed I moved your post to this existing discussion on Meniere's Disease so you can connect with others with similar experiences. SImply click VIEW & REPLY in your email notification to get to your post.

I also wanted to share links to the Hearing Loss group and the Caregivers group as I think you may be able to find support there as well.

Hearing Loss: https://connect.mayoclinic.org/group/hearing-loss/

Caregivers: https://connect.mayoclinic.org/group/caregivers/

Back to your husband @kimhal, is there anything that makes his symptoms worsen?

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@ethanmcconkey

Hi @kimhal you may have noticed I moved your post to this existing discussion on Meniere's Disease so you can connect with others with similar experiences. SImply click VIEW & REPLY in your email notification to get to your post.

I also wanted to share links to the Hearing Loss group and the Caregivers group as I think you may be able to find support there as well.

Hearing Loss: https://connect.mayoclinic.org/group/hearing-loss/

Caregivers: https://connect.mayoclinic.org/group/caregivers/

Back to your husband @kimhal, is there anything that makes his symptoms worsen?

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@kimhal So sorry to hear of your husband's problems. Could be, though, that there's more causes than just the Menieres disease. If you 've not done so already, I urge you to read the previous discussions. Some good information there. but also you will see you are not alone. Menieres is an ugly little disease, and takes not one but many forms. I've no concrete steps for you to take, but will cross fingers that your husband is better soon Please let us know what the neurologist has to say – hope he/she can help!

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@kimhal

Hi there. First post written. My husband is suffering since dec with ringing in ears. He is deaf in left ear and was diagnosed with meniers in 2010 which when he has had attacks they would come and go. Where this one has stayed and he is not able to work , drive his hearing in his rt ear is affected and can barely hear. He has tons of pressure in head , ringing, weak in legs, dizzy at times nystagma, cant focus ,nausea . We have been to several 2 ents 1 kidney specialist and now see a neurologist this next week. Anyone else with these issues that has found any relief? It is horrible watching your loved one like this. He says it is like Charlie brown's mom on phone. He has been on serc , prednisone, lasix, and more and absolutely no relief.

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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!

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@kimhal

Hi there. First post written. My husband is suffering since dec with ringing in ears. He is deaf in left ear and was diagnosed with meniers in 2010 which when he has had attacks they would come and go. Where this one has stayed and he is not able to work , drive his hearing in his rt ear is affected and can barely hear. He has tons of pressure in head , ringing, weak in legs, dizzy at times nystagma, cant focus ,nausea . We have been to several 2 ents 1 kidney specialist and now see a neurologist this next week. Anyone else with these issues that has found any relief? It is horrible watching your loved one like this. He says it is like Charlie brown's mom on phone. He has been on serc , prednisone, lasix, and more and absolutely no relief.

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Could well be Meniere's–although 80% of those so diagnosed have some other inner ear disease. ENTs do not have training to correctly diagnose, let alone deal with, Meniere's. Best bet is a neurotologist as they have additional training. That said, tinnitus is his own system attempting to provide something to replace missing hearing. It can be terribly annoying, but you can learn to live with it, be able to ignore it most of the time. The dizziness, nausea, etc. may well be caused because, since his primary inner ear balance system no longer works correctly, he is attempting to use his second balance system: vision. This is bad because every movement of his head or body changes his focal point, leading to disorientation, nausea, dizziness. In order to function, he needs to work hard at vestibular rehab (VRT) to learn to use his third balance system: proprioception, the information from his feet, knees, hips about where he is in space. Basically, it's learning to pay attention to what you feet can tell you about the surface you're standing or walking on. A mere 15 minutes a day will begin to make a real difference in just a couple of weeks, but you need to practice VRT every day. I've done so for over 30 years and didn't have any major balance/nausea/dizziness issues during my current Meniere's flare up. I don't have an answer to the hearing distortion…I'm hoping to set myself up with an Android tablet and a new (still in beta) app called Live Transcribe. I believe that I'll soon have an appt. with a Portland, OR doc that specializes in both Meniere's and CIs, although a CI might not be an option due to the recruitment and distortion caused by Meniere's.

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@kimhal

Hi there. First post written. My husband is suffering since dec with ringing in ears. He is deaf in left ear and was diagnosed with meniers in 2010 which when he has had attacks they would come and go. Where this one has stayed and he is not able to work , drive his hearing in his rt ear is affected and can barely hear. He has tons of pressure in head , ringing, weak in legs, dizzy at times nystagma, cant focus ,nausea . We have been to several 2 ents 1 kidney specialist and now see a neurologist this next week. Anyone else with these issues that has found any relief? It is horrible watching your loved one like this. He says it is like Charlie brown's mom on phone. He has been on serc , prednisone, lasix, and more and absolutely no relief.

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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.

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@estrada53

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.

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Hi @joyces …. I meant to send this to you as it pertains more to Meniere's than just tinnitus !!! Sorry, everyone!

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