Meniere's Disease

Posted by morninglory @morninglory, May 13, 2018

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

Interested in more discussions like this? Go to the Ear, Nose & Throat (ENT) group.

@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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Although initially after having gone bilateral with Meniere's the problem was all hearing, Christmas Day I had the "gift" of the first true vomiting crisis. Oh joy! It was intermittent until mid-March, when crises really began to move in.

First, I was diagnosed initially by an ENT, which doesn't mean much because there's a diagnosis code for Meniere's that allows the ENT to get paid, whether or not it's actually what's wrong. Again, 80% of those diagnosed with Meniere's don't actually have it–and, further, it may not even be a single disease but a collection of similar diseases. I was formally diagnosed by a neurotologist, Dr. F. Owen Black, back during my mid 40s over 30 years ago. At the time, Dr. Black was the foremost diagnostician for inner ear disease, had all the "fun" rides in the vestibular lab in Portland, OR to diagnose as closely as possible. He also worked with NASA, testing all astronauts before and after they flew, looking for any changes in balance function following extended weightlessness.

Although the first thing you're told is to avoid salt, that may or may not help. Worse, if you live on a strict low-salt diet at some point you'll be exposed to "regular" food. If you are sensitive to salt, that will ensure that you'll have a crisis. It's better to live on a diet where salt is somewhat restricted but not nearly eliminated.

Most Meniere's sufferers have triggers. Keep a diary and note even tiny changes from whatever is normal for you, coloring each day to indicate the amount of Meniere's symptoms you had. This should help you learn what your trigger(s) is/are and figure out a way to deal with it. For me, it's definitely one single trigger: abnormally low hormones levels caused by bad genes and a ruptured appendix at age 8. Although I had had isolated crises earlier in my life (20s and 30s) when I wasn't taking birth control pills for a brief time, my problems became acute when I was told to stop taking the pill in my mid 40s. I went through four years of absolute hell, crises as often as three times a week, while my primary doc and I sought a form of HRT that would be both sufficient and safe for someone my age at the time. Once we found that, I had no more crises and began daily VRT to learn to move about comfortably, normally. The remission lasted until a year ago, and I was able to lead an unusually active life, even though I'm now 77.

Now, I'm finding it far more difficult to live with both the hearing loss on both sides as well as balance loss on both sides. I also went through some weeks of crises while trying to find a doc willing to prescribe adequate HRT. I'm now on the second of two "temporary" prescriptions, and will have to do some training of my new OB/Gyn, who not only knows nothing about Meniere's but zip about HRT! I'm not afraid of HRT because I researched the correct balance of estrogen vs. progesterone, which does not necessarily cause cancer. I definitely do not want to spend the last years of my life with a barf bag at my side at all times! I may be old, but I don't act like it! Two weeks ago, following some really bad crises, I determined that I can't drive a distance any where until I get this damned disease under control. Now that I'm on at least a temporary program of HRT, my immediate goal is to be well enough and confident enough to do my usual late May/early June placement of temperature monitors in a wild little river on the north coast two hours away. To reach the top two locations means hiking over three miles along a ruined RR track, wading across the river, and climbing up above a waterfall. So, this is a firm goal, something that I do every year: place monitors, check them during late summer, and remove them in early September.

I'm also interested in learning about anyone certified to teach VRT in the Portland, OR area.

REPLY

Hello group! I am new and looking for a Meniere's Disease Dr/Specialist in the Boston area. My husband has been experiencing symptoms for a couple of months now, and we would like a second opinion. Any recommendations/experience in the Boston area? Thank you so much! camino

REPLY
@camino

Hello group! I am new and looking for a Meniere's Disease Dr/Specialist in the Boston area. My husband has been experiencing symptoms for a couple of months now, and we would like a second opinion. Any recommendations/experience in the Boston area? Thank you so much! camino

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Hi @camino and welcome to Mayo Clinic Connect. You'll notice that I moved your question to this existing discussion about Meniere's Disease https://connect.mayoclinic.org/discussion/menieres-disease-2/ I did this so that you can connect with fellow members like @morninglory @trishanna @lioness @estrada53 @phillipflippo @grannyjack @joyces @susyq213 @kimhal @jana15. Click VIEW & REPLY to scroll through past posts.

Members here may be able to offer recommendations of a good doctor who specializes in Meniere's disease in the Boston area and answer any questions you may have as you search for answers and a second opinion.

Camino, what symptoms is your husband experiencing?

REPLY
@colleenyoung

Hi @camino and welcome to Mayo Clinic Connect. You'll notice that I moved your question to this existing discussion about Meniere's Disease https://connect.mayoclinic.org/discussion/menieres-disease-2/ I did this so that you can connect with fellow members like @morninglory @trishanna @lioness @estrada53 @phillipflippo @grannyjack @joyces @susyq213 @kimhal @jana15. Click VIEW & REPLY to scroll through past posts.

Members here may be able to offer recommendations of a good doctor who specializes in Meniere's disease in the Boston area and answer any questions you may have as you search for answers and a second opinion.

Camino, what symptoms is your husband experiencing?

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Thanks so much Colleen for moving my question here!

My husband’s’ symptoms:
-sudden and significant loss of hearing in one ear, in low frequency range
-experiencing “fullness,” feels blocked
These are his 2 symptoms which started two months ago on July 13.

For treatment he has had:
-a 2 wk regime of oral prednisone
-2 steroid shots injected in his ear, 2 wks apart
There has been no noticeable improvement with above treatment.

This is a lot to experience over a short period of time and would very much like a second opinion. If you could suggest a doctor or specialist in the Boston area we would greatly appreciated it…and any feedback you have!

Thank you @camino

REPLY
@camino

Thanks so much Colleen for moving my question here!

My husband’s’ symptoms:
-sudden and significant loss of hearing in one ear, in low frequency range
-experiencing “fullness,” feels blocked
These are his 2 symptoms which started two months ago on July 13.

For treatment he has had:
-a 2 wk regime of oral prednisone
-2 steroid shots injected in his ear, 2 wks apart
There has been no noticeable improvement with above treatment.

This is a lot to experience over a short period of time and would very much like a second opinion. If you could suggest a doctor or specialist in the Boston area we would greatly appreciated it…and any feedback you have!

Thank you @camino

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Hi Camino….. Your husbands has exactly the same symptoms that I had starting 4 years ago. I also had the oral steroids and then injections into my eardrum (boy that is so not fun!). The treatment helped but only temporarily. My hearing eventually got worse. I have had this same course of treatment three times now with only minor improvement followed by more deterioration. I have had second opinions and each doctor has said this is the protocol for treatment of sudden hearing loss.

In my case three of my doctors thought that the loss was caused by antibiotics I was taking at the time. Since it keeps happening now they tend to think that my autoimmune disease is the cause. Each time the disease causes an increase in inflammation my hearing gets worse. So now it's all about keeping the inflammation in my body at a low rate. I take medicine for this and also have done some research online about other things to do to keep inflammation down.

I realize that there might be many different possible causes for your husband's hearing loss but maybe you will find some of this helpful. A second opinion is a great idea. Hang in there and keep working at getting help. Judy

REPLY
@judyca7

Hi Camino….. Your husbands has exactly the same symptoms that I had starting 4 years ago. I also had the oral steroids and then injections into my eardrum (boy that is so not fun!). The treatment helped but only temporarily. My hearing eventually got worse. I have had this same course of treatment three times now with only minor improvement followed by more deterioration. I have had second opinions and each doctor has said this is the protocol for treatment of sudden hearing loss.

In my case three of my doctors thought that the loss was caused by antibiotics I was taking at the time. Since it keeps happening now they tend to think that my autoimmune disease is the cause. Each time the disease causes an increase in inflammation my hearing gets worse. So now it's all about keeping the inflammation in my body at a low rate. I take medicine for this and also have done some research online about other things to do to keep inflammation down.

I realize that there might be many different possible causes for your husband's hearing loss but maybe you will find some of this helpful. A second opinion is a great idea. Hang in there and keep working at getting help. Judy

Jump to this post

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!

REPLY
@joyces

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!

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Wow ! That’s a lot of good info… i have all the symptoms of Meniers; Hearing loss, tinnitus , feeling of pressure and hearing loss .. I have seen an
ENT since my first vertigo attack 7 years ago. We started with diet and a diuretic but my symptoms progressed and then my ENT inserted a tube in my ear and injected a steroid. It was the steroid that was not known to cause hearing loss. After about two years of that, I started having severe vertigo attacks every day so my ENT sent me to an Otolaryngologist and he gave me an injection of gentamicin which, is know to cause hearing loss but, by this point my hearing was already basically gone in my right ear. The Gentamicin knocked me on my butt and I was in bed for about a month and couldn’t move my head without dizziness for about two months. Every side effect one could have, I had 10 fold.. it was debilitating. Now, 3 months later I finally feel “normal” but, I am staring to experience vertigo again and I am afraid to drive or go anywhere by myself .. it is taking control of my life. I am not able to work either. What is the name of the Meniers Support group ? I need it! Thank you for your response and I will order the book you mentioned .

REPLY
@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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Hi there, what exercises are you referring to? And , did you give up driving completely ? I am
Scared to drive.

REPLY
@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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My symptoms are pretty much always present but severity does fluctuate . I have vertigo, tinnitus, feeling of pressure and hearing loss..

REPLY
@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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I too have the the feeling my ears are stuffed up or full all the time. It’s maddening!!! Ive tried everything from sinus meds to constantly popping my ears and blowing my nose. From what I understand there is really no end all be all cure .. unfortunately …

REPLY
@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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I had the gentamicin injection and couldn’t get out of bed for a month .. what were side effects??

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@december1011

Wow ! That’s a lot of good info… i have all the symptoms of Meniers; Hearing loss, tinnitus , feeling of pressure and hearing loss .. I have seen an
ENT since my first vertigo attack 7 years ago. We started with diet and a diuretic but my symptoms progressed and then my ENT inserted a tube in my ear and injected a steroid. It was the steroid that was not known to cause hearing loss. After about two years of that, I started having severe vertigo attacks every day so my ENT sent me to an Otolaryngologist and he gave me an injection of gentamicin which, is know to cause hearing loss but, by this point my hearing was already basically gone in my right ear. The Gentamicin knocked me on my butt and I was in bed for about a month and couldn’t move my head without dizziness for about two months. Every side effect one could have, I had 10 fold.. it was debilitating. Now, 3 months later I finally feel “normal” but, I am staring to experience vertigo again and I am afraid to drive or go anywhere by myself .. it is taking control of my life. I am not able to work either. What is the name of the Meniers Support group ? I need it! Thank you for your response and I will order the book you mentioned .

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I failed to mention that docs almost always start people out on a low-salt diet, sometimes forbidding caffeine as well. That does work for a few people–and it's certainly good to avoid the typical US diet that has about twice the amount of salt you actually need–but I've only heard of one person who really, really benefitted from the low-salt diet. Worse, if you then go out into the "normal" world and have a meal, you're screwed. It's better to try to avoid too much salt, stick to a moderate diet. I also forgot to mention Gentamcin, which is a newer things lots of docs have tried. Works for some, doesn't at all for others. We usually try some of everything, as we're truly desperate.
I was fortunate in that I needed to work as my youngest was in college, which even at that time cost more than a moderate house. I had a job that I could do anytime, much of it either at home or at the office, and that made it possible for me to work whenever I was able to be upright. I had been working an average of about 60 hours a week, often more, managing a small publishing company and selling most of the advertising for two national magazines we published. However, the job also included travel to wonderful wilderness fishing destinations in Alaska and northern BC, which meant air travel, small planes, lodges, boating on wilderness rivers–places where it's just not convenient to suddenly have V&V. I've had it in many interesting places; the one thing I tried to remember was to always warn those around me so that they wouldn't be alarmed if I suddenly fell ill. However, once during a trip to a wilderness river in Alaska, a friend who had asked to go with us insisted that we all return to the lodge when I started into a crisis. I tried to say no, both because the jolting and bouncing over rapids would make me be sick even longer and because I didn't want to cut the day's fishing short for everyone else–but he insisted. When we arrived back at the lodge, he insisted that I must be dragged up a very long flight of rickety stairs to reach the actual lodge. It would have been better if they had continued to fish the rest of the day, leaving me alone in my misery to get through the worst two or three hours. After that, I was more careful about warning people. I also led groups of volunteers doing fish surveys in the wild little river on Oregon's north coast, and I was always very careful to warn everyone. Actually, I only started to have a crisis once, and I was able to overcome it by sitting on a boulder, eyes clamped shut, concentrating on listening to all the bird song around me. I'm sure that stress often plays a role in having a crisis, and that's why I never had a full-blown V&V attack out on the river. I once spent a miserable night in a lodge in northern BC because I hadn't been able to avoid staring at all the scenery as we jetted back downstream after fishing all day. The next morning, our last day, I was far too sick to eat, but I got suited up in waders and rain gear and stumbled down to the jet boat. I spent much of that day lying on the widest seat in the boat, puking daintily into a trashbag, but, to my credit, when my guide caught a fish, I got to my feet and managed to net the steelhead. My husband was fishing across the river and hooked one of the biggest steelhead I've ever seen landed; we were all very cocky as we head back upriver…only to learn that the lodge owner and the FF (famous fisherman) he was guiding had video of the FF landing a 34# steelie, a real feat.
There were a few years where I wasn't able to drive the winding dirt tracks in the watershed of the river where I still volunteer: all those tight corners were just too much for me, but I eventually got over that. I spent four years knowing what I needed but unable to get an Rx for adequate amount of hormones; once I did, the crises stopped within a couple of weeks and I had far less recruitment and lack of discrimination. The same thing happened last May: after a year of near total deafness and daily V&V, my hearing went back to the level where it had been over a year earlier, and no more crisis. As soon as I was stabilized, I went to a good VRT specialist for a refresher course on VRT. I've done well since, but slacked off when we had a forest fire that came within a mile of our house in the old-growth forest. It immediately became apparent that I had to get back to doing exercises, as a week of being evacuated, worried that we'd not have a home to go back to, meant that I was really wobbly. Here, just taking care of our acreage is a constant job, as well as not only the usual household things but doing all the repairs necessary helps keep me from spending too much time sitting on my butt. <g>

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