I haven't had a serious episode of vertigo, inability to stand or walk for a number of years. The last episode I had was after a breakfast in a restaurant that included salty bacon and had to have someone take me home. I watch my salt intake continuously and sometimes if I feel like a lightheadedness or nausea coming on, I will take a HCTZ and meclizine. When I first had episodes it would take a week or more to get completely over it. I very religiously minimize my salt intake.
@raym . Meclizine(antivert) really helped me initially. I understand there are some negative side effects with this medication, but if it works, it should be considered. A low-salt diet ultimately reduced my episodes of dizziness/nausea, but the salt reduction is not a cure. It's simply an expedient way to reduce symptoms. I limited or eliminated three suspected causes: oats, corn and wheat and I believe that helped. Tracking one's diet, like-style, etc., is an excellent way to find your triggers. Hope some day, an answer will be found, for I am left with hearing loss, tinnitus, ear discomfort, etc., some of which most assuredly are the result of Menieres.
.
Ray M's post highlights how differently Meniere's affects those of us "chosen" to have it! While low-salt diets have many benefits, only a small percentage of Menierians are sensitive to salt and see improvement by limiting salt intake. It depends upon individual triggers, and salt is only one of several. For me, since my trigger is abnormally low hormone levels, limiting my salt intake did zero for combatting Meniere's--you need to have adequate hormone levels in order for salt to affect your "ability" to retain water, which is why pregnant women with naturally high hormone levels retain water so easily. Again, the first thing all of us need to do is keep a diary showing the kind of day we experienced contrasted with anything (and I do mean anything) out of the ordinary. Over time, you'll find a pattern of activities, food, environmental effects, etc. that points to the thing or things that are triggers for your bad days. Some can be eliminated, while others, like weather or stress for example, require coping skills so that you can deal with them.
I think you are correct in that salt is not the only thing that can cause water retention.In my case I never did consume much salt, but I did consume a lot of caffiene and diet soda. And in the case of diet soda, I had through the years noted that it caused me to retain fluid; My breasts would feel very full - as they did when I nursed my four children. Strange. Now that I have eliminated caffeine and all soda, I have not had another episode of Meniere's and I do not get that full feeliing in my breasts. I agree that we each have to find our own trigger(s) and it is not necessarily always salt.
I have Meniere's Disease. No doctor has ever mentioned Betahistine to me. In my case a very low sodium diet has been the most effective. I also take a diuretic. It takes several weeks of following lo so to have it make a difference.
Again, although every Menierian is told to adopt a lo so diet, only some benefit from it. This is not to say that all of us would benefit from reducing our salt intake, as our food is formulated to provide far more sodium than we require, which can lead to high blood pressure and its deadly silent partner, kidney disease. Still, only some with Meniere's will see improvement with a lo so diet. Better to learn what your individual triggers are! As for excess fluid in our bodies, several years ago many of us tried exercise--i.e., working up a sweat, as a way to lose fluid. Whether we had an improved self image due to having done normal things in spite of Meniere's or whether sweating works wasn't determined, but all of us felt better afterwards.
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!
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.
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
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
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?
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?
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!
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!
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
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 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.
Connect
Connect
Like
Helpful
Hug
@raym . Meclizine(antivert) really helped me initially. I understand there are some negative side effects with this medication, but if it works, it should be considered. A low-salt diet ultimately reduced my episodes of dizziness/nausea, but the salt reduction is not a cure. It's simply an expedient way to reduce symptoms. I limited or eliminated three suspected causes: oats, corn and wheat and I believe that helped. Tracking one's diet, like-style, etc., is an excellent way to find your triggers. Hope some day, an answer will be found, for I am left with hearing loss, tinnitus, ear discomfort, etc., some of which most assuredly are the result of Menieres.
.
I think you are correct in that salt is not the only thing that can cause water retention.In my case I never did consume much salt, but I did consume a lot of caffiene and diet soda. And in the case of diet soda, I had through the years noted that it caused me to retain fluid; My breasts would feel very full - as they did when I nursed my four children. Strange. Now that I have eliminated caffeine and all soda, I have not had another episode of Meniere's and I do not get that full feeliing in my breasts. I agree that we each have to find our own trigger(s) and it is not necessarily always salt.
I have Meniere's Disease. No doctor has ever mentioned Betahistine to me. In my case a very low sodium diet has been the most effective. I also take a diuretic. It takes several weeks of following lo so to have it make a difference.
Again, although every Menierian is told to adopt a lo so diet, only some benefit from it. This is not to say that all of us would benefit from reducing our salt intake, as our food is formulated to provide far more sodium than we require, which can lead to high blood pressure and its deadly silent partner, kidney disease. Still, only some with Meniere's will see improvement with a lo so diet. Better to learn what your individual triggers are! As for excess fluid in our bodies, several years ago many of us tried exercise--i.e., working up a sweat, as a way to lose fluid. Whether we had an improved self image due to having done normal things in spite of Meniere's or whether sweating works wasn't determined, but all of us felt better afterwards.
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.
-
Like -
Helpful -
Hug
2 ReactionsHello 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
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?
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
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
-
Like -
Helpful -
Hug
1 ReactionReply 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!