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.
We live in Saskatchewan in Canada and have been sent to specialist after specialist and the ent 's put their hands up and sent us to a kidney specialist and now neuro it has been awful as the driving 4 hrs for a 5 min appt does not help.
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.
Thanks for this.... it sounds all to familiar. He does take the lipoflavanoid pills as well. He can feel an attack comming on but sometimes it comes on so fast he is out of commission for yes 12 to 24 hrs in fetal position. Noises do bother him as well at times. He was told he would benefit from a cochlear implant but they want to know why his symptoms have not subsided and have been constant. Is what we were told. Nobody seems to know so they just send us to other specialists. He has been on the prednisone and it did nothing he was told also they could go ahead and inject prednisone into his good ear but he could lose his hearing completely and that is not something we want to go through. Especially since he is deaf in the other ear. It is so frustrating. He last neurologist he seen 3 yrs ago pretty much made him jump on one leg and walk forward touch his nose and sent him on our way. So this is why I'm thinking about the mayo clinic where we could maybe get some concrete answers and info since it has been a run around here we have gotten nowhere since dec. Pretty sad and a let down!
Thanks for this.... it sounds all to familiar. He does take the lipoflavanoid pills as well. He can feel an attack comming on but sometimes it comes on so fast he is out of commission for yes 12 to 24 hrs in fetal position. Noises do bother him as well at times. He was told he would benefit from a cochlear implant but they want to know why his symptoms have not subsided and have been constant. Is what we were told. Nobody seems to know so they just send us to other specialists. He has been on the prednisone and it did nothing he was told also they could go ahead and inject prednisone into his good ear but he could lose his hearing completely and that is not something we want to go through. Especially since he is deaf in the other ear. It is so frustrating. He last neurologist he seen 3 yrs ago pretty much made him jump on one leg and walk forward touch his nose and sent him on our way. So this is why I'm thinking about the mayo clinic where we could maybe get some concrete answers and info since it has been a run around here we have gotten nowhere since dec. Pretty sad and a let down!
Had not heard of Betahistine, but will be interested in any comments. From what I am able to learn on the internet, it does not seem to be very effective even though widely used.
Reading back through older posts about Meniere's, I see several where people have seen multiple docs, usually ENTs. They hope, even believe, that getting a diagnosis will solve their problems. After moderating a group, doing research for a book about the disease, and living with it for decades, I've come to some conclusions:
Meniere's may not be a single disease, but several very similar diseases. What benefits one person doesn't necessarily help another.
Some people benefit from Valium and like meds; others do not.
We all consume too much salt, so a low-salt diet won't hurt you...but it only helps some people battle Meniere's.
You need to learn the thing(s) that trigger bad days/crises and avoid them if possible--keep a calendar or diary.
Hearing loss and tinnitus are both difficult...but not nearly so much as vertigo and crises.
Sipping water or citrus-flavored soda while having a 12-hour (or longer) crisis is tolerable and will prevent dry heaves and a very sore gut afterwards.
Keep a supply of trash bags, a can of soda and straws, tissues, and paper towels handy, at home and in your car. Add adult diapers if you lose control.
When you feel a crisis coming, go to the bathroom. Then, find a comfortable place to lie on your side, using the trash bag to collect vomit.
Going to the ER only makes things worse (bright lights, questions, being asked to move or look at something for starters).
Explain to people around you that you could have a crisis with very little warning so that they won't panic and call the EMTs.
Don't shrink away from doing things; that will only make you feel worthless and isolated.
Plan trips to bothersome places like supermarkets or big box stores so that you're there when fewer people are shopping.
Big stores are troublesome because at least one bank of fluorescent lights always flickers, people move in unexpected directions, bright colors jazz your eyes.
Accept that there is no actual cure for Meniere's, just some things that help some people.
Procedures like gent injections and shunts all have possible downsides, some very serious...learn before you leap!
Don't drive if you feel dizzy. You don't want to lose your license.
MOST IMPORTANT: Learn VRT and do it. EVERY DAY! This is the one thing that really works. You'll see improvement within the first month.
Part of VRT is learning to walk normally: upright, looking at the world around you rather than shuffling along, feet apart, staring at the floor.
Thanks for this.... it sounds all to familiar. He does take the lipoflavanoid pills as well. He can feel an attack comming on but sometimes it comes on so fast he is out of commission for yes 12 to 24 hrs in fetal position. Noises do bother him as well at times. He was told he would benefit from a cochlear implant but they want to know why his symptoms have not subsided and have been constant. Is what we were told. Nobody seems to know so they just send us to other specialists. He has been on the prednisone and it did nothing he was told also they could go ahead and inject prednisone into his good ear but he could lose his hearing completely and that is not something we want to go through. Especially since he is deaf in the other ear. It is so frustrating. He last neurologist he seen 3 yrs ago pretty much made him jump on one leg and walk forward touch his nose and sent him on our way. So this is why I'm thinking about the mayo clinic where we could maybe get some concrete answers and info since it has been a run around here we have gotten nowhere since dec. Pretty sad and a let down!
@kimhal, you mentioned that you are considering calling Mayo Clinic. Should you wish to, here is the contact information for all 3 campuses in Minnesota, Florida and Arizona http://mayocl.in/1mtmR63
Thankyou so much I contacted them last week to know what to expect and how to do this since we are from Canada. Just gonna wait to see what this neurologist says on wed and then I'll be sending info down to the clinic 🙂
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).
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.
So, caffiene is your personal trigger. I drink decaf coffee, no tea, no soda due to high blood pressure, but that made zero difference as far as Meniere's is concerned. This business of different things being triggers for upswings or crises in Meniere's is one reason many of us believe that it's not a single disease but a cluster of somewhat similar diseases. There really is no definitive test for Meniere's, just testing to confirm that it's not an acoustic neuroma, for example. The hearing loss is somewhat indicitive, but could be totally unrelated to Meniere's. I envy my husband, an insulin-dependent diabetic, because he can test his blood sugar at any time and know precisely what's going on.
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We live in Saskatchewan in Canada and have been sent to specialist after specialist and the ent 's put their hands up and sent us to a kidney specialist and now neuro it has been awful as the driving 4 hrs for a 5 min appt does not help.
Thanks for this.... it sounds all to familiar. He does take the lipoflavanoid pills as well. He can feel an attack comming on but sometimes it comes on so fast he is out of commission for yes 12 to 24 hrs in fetal position. Noises do bother him as well at times. He was told he would benefit from a cochlear implant but they want to know why his symptoms have not subsided and have been constant. Is what we were told. Nobody seems to know so they just send us to other specialists. He has been on the prednisone and it did nothing he was told also they could go ahead and inject prednisone into his good ear but he could lose his hearing completely and that is not something we want to go through. Especially since he is deaf in the other ear. It is so frustrating. He last neurologist he seen 3 yrs ago pretty much made him jump on one leg and walk forward touch his nose and sent him on our way. So this is why I'm thinking about the mayo clinic where we could maybe get some concrete answers and info since it has been a run around here we have gotten nowhere since dec. Pretty sad and a let down!
sounds like a good idea!! good luck!!!
My husband was on it and it never had a difference.
Reading back through older posts about Meniere's, I see several where people have seen multiple docs, usually ENTs. They hope, even believe, that getting a diagnosis will solve their problems. After moderating a group, doing research for a book about the disease, and living with it for decades, I've come to some conclusions:
Meniere's may not be a single disease, but several very similar diseases. What benefits one person doesn't necessarily help another.
Some people benefit from Valium and like meds; others do not.
We all consume too much salt, so a low-salt diet won't hurt you...but it only helps some people battle Meniere's.
You need to learn the thing(s) that trigger bad days/crises and avoid them if possible--keep a calendar or diary.
Hearing loss and tinnitus are both difficult...but not nearly so much as vertigo and crises.
Sipping water or citrus-flavored soda while having a 12-hour (or longer) crisis is tolerable and will prevent dry heaves and a very sore gut afterwards.
Keep a supply of trash bags, a can of soda and straws, tissues, and paper towels handy, at home and in your car. Add adult diapers if you lose control.
When you feel a crisis coming, go to the bathroom. Then, find a comfortable place to lie on your side, using the trash bag to collect vomit.
Going to the ER only makes things worse (bright lights, questions, being asked to move or look at something for starters).
Explain to people around you that you could have a crisis with very little warning so that they won't panic and call the EMTs.
Don't shrink away from doing things; that will only make you feel worthless and isolated.
Plan trips to bothersome places like supermarkets or big box stores so that you're there when fewer people are shopping.
Big stores are troublesome because at least one bank of fluorescent lights always flickers, people move in unexpected directions, bright colors jazz your eyes.
Accept that there is no actual cure for Meniere's, just some things that help some people.
Procedures like gent injections and shunts all have possible downsides, some very serious...learn before you leap!
Don't drive if you feel dizzy. You don't want to lose your license.
MOST IMPORTANT: Learn VRT and do it. EVERY DAY! This is the one thing that really works. You'll see improvement within the first month.
Part of VRT is learning to walk normally: upright, looking at the world around you rather than shuffling along, feet apart, staring at the floor.
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4 Reactions@kimhal, you mentioned that you are considering calling Mayo Clinic. Should you wish to, here is the contact information for all 3 campuses in Minnesota, Florida and Arizona http://mayocl.in/1mtmR63
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1 ReactionThankyou so much I contacted them last week to know what to expect and how to do this since we are from Canada. Just gonna wait to see what this neurologist says on wed and then I'll be sending info down to the clinic 🙂
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1 ReactionWhat did you figure out what the problem was? Very curious
I have had no episodes since totally stopping caffiene. No sodas, no coffee, no tea.... no caffeine period.
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1 ReactionSo, caffiene is your personal trigger. I drink decaf coffee, no tea, no soda due to high blood pressure, but that made zero difference as far as Meniere's is concerned. This business of different things being triggers for upswings or crises in Meniere's is one reason many of us believe that it's not a single disease but a cluster of somewhat similar diseases. There really is no definitive test for Meniere's, just testing to confirm that it's not an acoustic neuroma, for example. The hearing loss is somewhat indicitive, but could be totally unrelated to Meniere's. I envy my husband, an insulin-dependent diabetic, because he can test his blood sugar at any time and know precisely what's going on.