Why Hasn’t Anybody Heard Of Meniere’s Disease?
The world is full of pink ribbons, yellow wristbands, and walks for a cure. Chronic disease and tragic illness are an unfortunate part of life that surrounds us always.
Raising awareness has always been an important strategy for winning the war against disease. It directs research dollars towards new treatments and cures. It empowers the suffering, making them feel heard and understood. It also encourages good people to contribute donations to the cause, slowly but surely ticking the needle of progress forward, one dollar at a time.
The problem, however, is that there are many rare diseases that lack the “cultural sex appeal” of the more mainstream and well-known conditions in the minds of the general public. It doesn’t help that many chronic illnesses are invisible from the outside. It’s hard for the average person to wrap their mind around something they can’t see.
Few conditions fit this description better than Meniere’s disease.
What is Meniere’s disease?
Meniere’s disease is a highly complex illness with no cure and no known causes. It is not fatal but ruins lives all the same. It affects the inner ear and causes a severe disruption in balance, hearing, and quality of life.
Symptomatically, most people experience “attacks” of violent rotational vertigo (feeling like the room is spinning), a feeling of fullness and pressure in the affected ear, loud ringing known as tinnitus, and progressive hearing loss. Many sufferers also report nausea, cognitive impairment (brain fog), fatigue, anxiety, and depression.
Meniere’s disease affects .2% of the population, roughly the same rate of incidence as Multiple Sclerosis. Yet virtually no one has ever heard of Meniere’s disease.
To make matters worse, in the last several decades’ very little progress has been made towards research and development of treatments for this terrible illness.
And terrible it is. Back in 2000, researchers at the University of California-San Diego published a study titled “Impact of Meniere’s Disease on Quality of Life.” It highlighted the severity of the disease’s impact on physical and mental health in patients who did not respond well to treatment.
They found that the quality of life of a Meniere’s patient, while not actively experiencing vertigo, was comparable to adults with life-threatening illnesses such as cancer and AIDS. Even more shockingly, they discovered, that during periods of acute vertigo, quality of life dropped considerably further. Putting it on par with non-institutionalized Alzheimer’s patients as well as with Cancer and AIDS patients, six days from death.
Even the researchers were stunned by the results. According to the study, “Meniere’s disease patients are among the most severely impaired non-hospitalized patients studied thus far … Patients describe impairment in travel, ambulation, work and other major social roles as well as trouble learning, remembering and thinking clearly.”
It’s hard to imagine how such a devastating illness can exist and remain virtually unknown at the same time.
There is Hope:
I paint a grim picture, but, of course, there is so much hope. Many people respond amazingly well to specific lifestyle changes and pharmaceutical treatment. There are surgical approaches as well, when all else fails.
A great many people learn to manage their symptoms, or at the very least, find a way to live with their disease. (This blog was started for a reason, right?)
What most patients so desperately seek is simply to be heard. To be understood. To be validated. To be accepted. Raising awareness of Meniere’s disease is the catalyst.
The good news is that research efforts are finally increasing, and new treatments are being developed right now. One shining example of this is the biotech company Otonomy:
In 2008, Jay Lichter, Ph.D., a partner at Avalon Ventures and biotechnology industry veteran, experienced his first severe attack of vertigo. While driving, he became severely disoriented and had to pull to the side of the road. After multiple doctor visits, he was diagnosed with Ménière’s disease and quickly experienced the limitations of available treatments. With his physician, Jeffrey Harris, M.D., Ph.D., chief of the division of otolaryngology-head and neck surgery at the University of California, San Diego, and several other experts in the field of otology, Dr. Lichter founded Otonomy to bring new treatment options to patients with otic (ear) disorders.
Our mission today remains the same – to develop and commercialize novel and best-in-class therapeutics to address the significant unmet medical needs in the emerging otology market.
With companies like Otonomy conducting clinical trials on new drugs and drug delivery systems, there are plenty of reasons to remain hopeful.
Raise Awareness Today:
So the question remains, what can we do, right now, to raise awareness?
Recently, Judy McNamara Tripp launched a change.org petition to raise awareness of Meniere’s disease, and if successful, could raise it in a big way. Judy is collecting signatures to ask BONO and U2 to help us raise awareness by either filming a short public service announcement for YouTube or by reading the following statement before they perform their hit song “Vertigo”:
“We need to find a cure for the millions who suffer lives filled with vertigo and deafness caused by Meniere’s Disease.”
It only takes a minute to sign and if successful will raise awareness of Meniere’s disease in a big way.
CLICK HERE TO SIGN THE PETITION
The petition is supported by Dr. Antonio Lopez Escamez, whose ground-breaking research recently identified the first gene directly linked to Meniere’s disease. It is also supported by the Vestibular Disorders Association.
Judy’s efforts exemplify the kind of creativity needed to give Meniere’s disease the big PR push it has long deserved. If anyone else has a creative idea to raise awareness, be sure to leave a comment and share it with the community!
Help us raise awareness by spreading this post far and wide. Be sure to share it with your family and friends!
Together our voices will be heard.
56 thoughts on “Why Hasn’t Anybody Heard Of Meniere’s Disease?”
My wife posted this article it was very interesting. Thank you since I’ve got this famous disease , I’ve learn to cope with a lot of what was talked about in the article. Believe me life is no fun with meniere, s.
I’ve had Ménière’s for Aprox 10 years – I got a cold when l was 27 weeks pregnant with my first child – I have never been the same , I used to go to the gym at 6am every day , I am now 35 kg over weight , i cannot even put my head up side down to dry my hair anymore, l will spin for at least 5 min if I flick my head back up , my eyes jump to noise , my own voice is now deafening I side my head when l talk – I cannot remember words – life sucks with Ménière’s and what’s worse is no one understands – people think I’m faking it , even family – please help find a cure – I cannot live like this !!!!
I believe you sis and I hope they find a cure.. I hate went my ears are just ringing for a short time… Love you xx
Jenny I’m so sorry its been so difficult for you , but you are not alone. We all know its real, and by raising awareness we can make sure the rest of the world knows too! More and more research is being done all the time. Never give up hope!
I do know how you feel I’ve had Menieres since 1999 until 2009 I had surgery to remove the left side.which left permanently deaf. I was free from Menieres for 6 years now I have it in my right ear now I will not go another 10 years with the ugly disease.
You can contact me if you you like to I can tell many thing about all the treatment I’ve had for 10
Hope you have a good day as well as can be expected.
What has helped you? I am miserable!
My mom has this. I’m doing research for he . It ruined her life when I was 7 she got her first attack. I’m 13 now and its getting worst…she is doing everything she can for it to get better..no salt.no caffeine …nada is their anything u would say to her …idk..I’m trying.
Hi Joanna, I’m sorry you’re mother is having such a hard time. I would encourage her to take some time to read through some of the posts on my blog. I’ve written extensively on all kinds of ways to better manage Meniere’s. A good place to start is here: Erase Meniere’s Symptoms with a Temporary Lifestyle Cleanse. Also my book has everything I know about managing Meniere’s disease. Best of luck Joanna, I’m always around if you or your mom have any questions. Just email me at email@example.com.
I know this is an old post but I’ve just stumbled upon this site. I was diagnosed with menieres about 25 years ago. It had gotten progressively worse and affected EVERY part of my life! I started looking for “triggers” by keeping a food journal. I noticed a trend of “attacks” after eating muffins, bread, fried foods. This August I will have been gluten free for two years, haven’t had an attack since Dec 2015 (took a while for me to get the hang of being totally gluten free). It’s not an easy diet to follow but definitely worth it if the payoff means no more menieres attacks (the hearing loss I had did not improve but it hasn’t gotten worse and I rarely notice that I have tinnitus, it is much improved). Good luck, it’s a terrible disease.
Do some research on Lemon bioflavonoids. They have ended my Meniere’s episodes in only 2 months.
I take 5000mg vitamin D3 plus 400 mg chelated magnesium everyday and my Menieres symptoms went away. Took me 18 years to figure that out. Works for me and maybe could for your Mom.
What and how did you take it! What brands
There is no cure; however, there are medications you can take that will help curb some of the symptoms, mainly vertigo. Meclizine helps me tremendously and you can buy it over the counter. It won’t stop it completely, but it does lessen its ferocity.
Good call! There are actually quite a few over the counter vitamins, supplements, nutrients, and products that are available that help to manage the symptoms. Meclizine works well but over the long term can lead to problems, like dementia.
Jenny, I am just stumbling upon your post, I truly hope you’ve found some relief since you first commented. I have lived with Meniers disease since I was 28 (am 53 now). It’s gotten progressively, and aggressively, worse the past few years (drop attacks, one or two “episodes” DAILY – leaving me unable to function). I’ll make a long story short here but I did a ton of research and decided to keep a food journal to try to at least identify some of my “triggers”. I’d read an article before that really stuck with me, the writer kept stressing that our Ménière’s symptoms were a result of our bodies fighting something that it didn’t like or felt threatened by. My journal revealed that I consistently had “dizzy-nausea-vomitting-crawling on the floor” episodes when I ate gluten products. August of 2015 I eliminated gluten from my diet. It took about two months to get the hang of reading labels and cleaning out my system but I am SO elated to say that I haven’t had any Ménière’s spells since Oct 2015!! I must say that I have a couple of autoimmune issues (nothing major) and those problems too have greatly improved since I’ve gone gluten free. It isn’t the easiest diet to follow but it is so worth it when I consider what life was like before! I’ve never had any typical gluten sensitivity problems (stomach issues) so I don’t know why this has proven to be a trigger for me but obviously it is. I’ve discussed it with my ENT and he just dismisses it as a fluke, said that a gluten free diet shouldn’t have any effect on my Meniers problems. I beg to differ! I haven’t seen an ENT for almost a year now, my tinnitus is 90% improved (most days I’m not even aware of it at all), I don’t get that “full” feeling in my ear and my hearing loss, while not improved, hasn’t gotten any worse. I’d gotten to the point where I was afraid to drive (especially with my kids in the car) and terrified of having a spell while at work. I can’t tell you the number of times I had to call for a ride home because I was unable to drive. I don’t know why this works for me, I have no scientific studies to back it up. All I know is that it’s given me my like back! I’ve often thought about “hanging out” at my ENT’s office and sharing my story with anyone who’ll listen – I’d probably be hauled off pretty quickly though. And while its been a miracle for me, I don’t know that others will have the same benefit. I thought it was worth sharing my story though since all we hear from the experts is “Ménière’s disease isn’t curable and it will most likely get worse as you age” – I refuse to accept that without fighting it however I can! Again, I hope you’ve found considerable relief since you initially posted. If you haven’t, you may give a gluten free diet a try. God bless you, Janet
I am signing for my beautiful daughter. Her life has been altered in ways many don’t understand. Some refuse to acknowledge the severity in which it effects one’s life. I pray this gets recognition.
ive had menieres for 13 years now. It’s a horrible disease and hard to diagnose. It’s actually been in remission the last 2 years with just the deafness and noises in ear remaining!
Cindy, I’m glad to hear its been in remission for a long time. Hopefully thats a sign that it will stay that way for a while.
Thank you. I’ve been a MD sufferer for more than 15 years now, and I tell everyone I can about the disease, just to educate them. Awareness is the first step. The more we know, the better we can fight.
Thelma Dee Wilson
I am signing this to help awareness of Meniere’s . When I was diagnosed with it I had never heard of it. I had no idea what the doctor was talking about. In two weeks I discovered that 18 people I know in my home town had it. People do not talk about this disease. They just try and cope with it by themselves. I want people to know they are not living alone with Meniere’s.
Thelma I completely agree. Until I was diagnosed, I had never heard of it either, and until I started this blog, I had only ever met one other person who had it. People should never have to just suffer and try to cope alone.
For the last 2 1/2 years I have suffered with vertigo, not able to focus with work, forgetting words, constant tinnitus that is so loud I have difficulty hearing, vomiting for hours, having to crawl on the floor because you can not stand up to walk. I have seen about 6 or more Drs, one has mentioned meniere’s, I have two sister’s with meniere’s, does it run in the family? When you are out in public and can not walk straight due to balance issues, people whisper, ‘she must be drunk’, feeling so humiliated, this is no way to live, a cure must be found.
Hi Sharon, I’m so sorry to hear how difficult the last several years have been for you. It definitely can run in the family and Dr. Antonio Lopez Escamez’s research team in Genyo, Granada, Spain has identified the ‘first genes’ causing familial Meniere’s disease. Have you seen a Neurotologist? A Neurotologist is an ENT who has sub specialized in treating balance disorders. Most regular ENTs will see very few cases of Meniere’s and other rare vestibular disorders but a Neurotologist will have a lot of experience treating these conditions. I wrote an article to help people find the perfect doctor: https://www.mindovermenieres.com/find-the-right-doctor-to-conquer-menieres-disease/
my mother dealt w this every day of
Her life. I e had only 2 episodes and hope I never have it again.
I first got Meniere’s 30 years ago. I was young and otherwise healthy, and the symptoms went away except for the ringing in one ear. Doctors told me that it would come back someday,and it did, 20 years later! It just came out of the blue one day while at work. I was a truck driver in and around Los Angeles for 30 years ( lots of stress ) . I missed alot of work due to doctor appointments and severe ” episodes “. There were some days I couldn’t even stand up let alone drive a truck. My doctor put me on a very strict low salt diet and a fairly strong diuretic pill. This greatly improoved my symptoms. I have now been retired for 5 years and live a low stress life. I still take the diuretic pill and stick to a low salt diet as much as possible. I still have the ringing in one ear but have not had an attack or other symptoms in a few years. So what is working for me is (a) low stress (b) a low sodium diet (c) taking a doctor prescribed diuretic pill daily. GOOD LUCK TO EVERYONE.
Thanks for sharing that Roger! Keeping my stress levels down and eating a low sodium diet help me considerably as well.
In December of 1975 I went to a doctor with a severe cold and infection and went deaf in his office. Hearing returned within an hour. A hearing test by ENT a month later revealed a minimal hearing loss in the “frequencies of low sound”. The ENT said it nothing to worry about. The vertigo started a month later and a year later I went for an overnight hospital stay and tests that diagnosed me as a hypochondriac. 10 months later over Labor Day weekend the vertigo went on a spree. An episode at work where, my prepped workmates put me on a bus that managed to get me to the office of the doctor who had diagnosed me as a hypochondriac where I threw up in his office. He immediately noted the nystagmus and vertigo. From there to UT where I was diagnosed after 3 months of testing with menieres and told to live with it. They suggested allergy shots. Eventually I tried the shots and after 2 years it all went away for 10 year then vertigo returned. A friend read up about Serc on a site for menieres research on Altavista search engine. This drug eventually controlled the vertigo giving the other symptoms an opportunity to strut their stuff. Tinnitus took control over the next few years and slowly I lost hearing cumulating in a profound hearing loss in January 2015. A four week course of cortisone shots to my inner ear by my doctor, Susan King, Ear Group, San Antonio, TX helped restore my hearing and understanding a little . She displayed compassion and knowledge for the disease. So much so that I also agreed to try a salt free diet and a diuretic ( I do not think this lifestyle change helped me); hearing aides have enabled me to hear. This is a synopsis of the story of Menieres Disease. As a 2 time breast cancer survivor I have NO reluctance to talk about my Menieres to any and everyone. By the way Glenn you omitted balance problems from the list of symptoms. Maybe this is a later in life symptom.
Wow Monica, I’m so sorry you had to go through all of that. My first ENT was the worst doctor I’ve ever seen in my entire life, but ended up seeing another doctor after a couple weeks rather than a whole year. I can’t imagine what that must have been like. I’m glad to see that you seem to be doing much better than you were before. Thank you for sharing your story.
Is there a test to definitively diagnose one with Menieres disease? I suspect I have it. I have a lot of the symptoms plus some. I tell people that I have a vestibular disorder. I stay off-balance and one ear always feels clogged. I have had vertigo attacks in the past and if I drive or ride for more than 12 miles, I’m a mess!
Hi Jacki, unfortunately as of now, there is no definitive test to diagnose Meniere’s disease. Meniere’s is an idiopathic illness, meaning the cause is unknown, so the only way to diagnose it is by eliminating all other known possible causes of your symptoms. I recommend seeing a Neurotologist, which is an ENT that is sub-specialized in treating balance and hearing disorders. You can find one near you by searching for Neurotologists and your zip code on http://www.healthgrades.com
Thanks Glen! I had another terrible incident while working in a children’s gym and almost fell on a child! Now I see the need to quit this job and try something else. I can’t be this dizzy anywhere though. I am thinking of claiming disability. By the way, does anyone else have problems with riding in a car and driving?
All of these descriptions sound familiar. I was diagnosed with Menieres in 2005, by my ENT. I had cortisone treatments and when the were unsuccessful, I had ear (Endolymphatic Shunt) surgery. It took a year for my system to adjust to the shunt (a tiny sac to drain excess fluid) and I have been ‘episode free’ for the last 4 years.
The term deafness has been used in many comments. I have a moderate hearing loss, that will eventually become profound if (read ‘when’) the episodes/attacks start again. My shunt is estimated to last 7-10 years, maybe less or even more.
Menieres never just goes away. I still have many symptoms as mentioned in others’ comments. I am very fortunate that the vertigo episodes are in ‘remission’ for lack of a better term. Every day without vertigo is a great day. (Despite the hearing loss, hyperacusis, nystagmus, tinnitus, disequilibrium, vigilant diet, etc…) Thank goodness for my hearing aids and medications. Life is never easy, but it is always good!! And Thanks Glen for the Mind Over Menieres blog.
Hi Linda! I’m happy to hear that you haven’t had vertigo for 4 years now. I never had to undergo surgery but I also haven’t had an episode for several years. And like you I still have the other symptoms from time to time. I appreciate the kind words!
I am Jennifer, I had vertigo since I was about 7 years old. I took a hard fall when I was about 3 years old. Landed on my head. My parents thought I was a “quite child” because I hardly ever spoken. It was a bad snow storm back in early 80’s, I would go outside and I would cry and scream my head off. My parents scooped my up and took me in the house and said I couldn’t come back out til I quit screaming. So, the rest of the snow days I stayed inside. Then when I was out of school, I would be dragged to the grocery store and when I got to the cold section I would cry and scream bloody murder. My father again scooped me and took me outside. Once I was outside, I quit screaming. Then he took me back into the store and went to the cold section and I started to cry and scream again. Then my parents finally realized there was something wrong. After several years of me cry and screaming, my parents took me to the doctor and come to find out I have a triple ear infection in both ears, both eardrums were blown, and the extremely overfilled with fluid. They put me in the hospital right away. I was hospital for several days. After the hospital I was tested for hearing. 32 % in my right ear, 35% in my left ear. Can not hear low or high pitches. I couldn’t even hear myself talk. I don’t know what I sound like. Vertigo hit me for the first time when I was 7. I was taken to the doctor and he says “blood virus” . No other test were perform. As the years passed I have probably 2 major attacks a year. I tried to “be normal”. I was pregnant with my son, I keep passing out and my blood pressure would drop very dangerously. I was 32. Now I am 41. I spend almost everyday not able to leave the bed with out having all the systems problems and very few days able to do anything worth while. I was finally tested by a ENT that Menieres not only in one ear but both. I understand that it is a very rare case to have it in both ears. So how can you explain to the world one is alittle easier to deal with. But me the attacks are twice as many, the noises in both of my ears are louder and painful, the brain fog is so thick that u have to take a chainsaw to get through it, the fullness of both ears of fluids (3 sets of tubes and perms in both). The major hearing loss in both, The nausea is like every other hour. The sensory overload is like a million Intensity. This has not been fun.. It has ruin several good paying jobs, my first marriage, the foreclosure on my first home, loss of my first child, 7 car wrecks, Numerous fallings, scrapes, bruises, broken bones, and whatever imaginable and unimaginable. So where do I go from here???
Hi Jennifer. I can’t even imagine what that must have been like to suffer for decades without a real diagnosis. I have a few questions for you. First, is the ENT you are seeing a Neurotologist? If not, I would highly recommend finding one who is. If you don’t know, Neurotologists are ENTs who are specialized in treating balance and hearing disorders and will have have WAY more experience treating Meniere’s disease (as well as other vestibular disorders). They will be able to work with you on a much deeper level and try different medications until you find something that works. My second question is are you on any medication to try to help with the symptoms? There are many different medications most doctors will try, a lot of which can help quite a bit. And my last question is, what have you tried so far to try to treat your symptoms? Has your ENT made any suggestions as to lifestyle changes?
There are a lot of things that could help you reduce your symptoms, its important to not give up hope and keep trying new things. Eventually you will find changes that will help. It might be helpful to read this post: Erase Meniere’s Symptoms with a Temporary Lifestyle Cleanse. It covers a lot of the basics for lifestyle changes.
I have been out to the Medical University of South Carolina for almost a year. I have seen the top ENT doc and now I am seeing a ENT Neurologist. But it seems like I ran into a wall with both of them. I had the 4 test done from the ENT. I have gone through about 15 different meds and half of them I am allergic to them. And they only thing they have asked me to do is restricted salt diet and a migraine diet. I know what foods triggers the migraines. I have been told to try to move every so often. But as me not getting the vertigo and all the other stuff is to stay in bed. But even that is starting to take a toll on me also. I just wish I knew these things long time ago and probably could help prevent some of this also. I can’t help my parents liking a “quit child” compare to the ones that are loud and such. I tried several excises programs that suppose to help and it suppose to help relieve the problems. But for me it makes it worse….It isn’t like someone that has it in one ear the problems are not so dramatic and for someone that just starting with the disease is just the icing on the cake. I try to explain to multi people that I have this in both ears and they are never equal to when they want to cause problems. One ear might be ok for several weeks when the other wants to destroy everything u try to do and then when that ear say ok I had enough. the other one takes over and messes you up for weeks. then when that is said then I get hit with both of them together, there is no ground and not meditation, exercise, food, drink, or meds to stop the dramatizations of this illness… well this is my story, sorry to be a bother……
I appreciate you writing back and you are definitely not a bother! I’m sorry your struggle has been so difficult. Though my own personal experience is different, know that you are not alone. You said you know the foods that trigger your migraine, do you have a good idea of what triggers your vertigo and other Meniere’s symptoms? Also have you been tested for allergies? Allergies seem to really trigger my Meniere’s symptoms. When I stopped eating dairy (I’m mildly allergic to milk) I saw a pretty marked improvement in my symptoms. I know how frustrated you are but I’m glad to hear you keep trying new things and keep fighting to find out what might help.
Thanks for your help.. As far as allergies is mostly blue grass and some other grasses. The worse of my Meniere’s bothersome is the ‘quiet before the storm’. The thunderstorm does a number on me. So how do u avoid them? Run away from them is harder than possible. Other than that is so impossible to figure it out.. It can be a simple thing as pitch of a sound.. High frequencies makes me almost pass out. Heat creates a few cases. I can be outside in the heat very long no more, The previous story about being in the freezer section of the store is a the case still. Except I don’t cry and scream. I cant be out in the snow and ice days. Sometimes changes in evaluation when driving just simple dips in the road can cause the vertigo to flair up. Those have my most tragic epic.. I tried to do research on these but it doesn’t give me anything I link them together or I just run out of seam looking… I know these are crazy points and very hard to avoid them.
My father had Meniere Disease for awhile can’t tell the exact number of years. But when he was diagnosed we had no idea what this disease was. He went to many doctors and found a really great one at UPenn (if think that’s the hospital name) than about almost 4 years ago I was diagnosed with Vertigo and it sucks. After that I was having problem with my ears and headaches more and more as the years progress. Last month I was diagnosed with Meniere Disease and I’m 24 it sucks cause I’m young and all. It sucks that not many people know about this. I’ve learn to live with vertigo and deal with my episodes. My family has never veered off the low salt diet, so it be easier to keep it up. Im lucky my family has already know about this disease and can help me through it. I’m very lucky how supportive my boyfriend is when I not feeling well. He has been studying on the disease to be able help more. It is a little tough with work having this disease but I’m learning to deal with it and all.
Hi Megan, I’m sorry you have been diagnosed too, but I’m glad your family and boyfriend is so supportive. It really makes a big difference to have that. I was diagnosed at 24 also. I know how hard it is but I’m also glad to see how proactive you are being and you seem to have a really positive attitude. I wish you the best of luck!
Thanks, it’s was hard to hear that I had the disease but I know a can let the disease put me down. Everyone has good days and bad days even worst days as I see it but I don’t let them get to me. It helps knowing my family and boyfriend is there for me.
I have suffered with Ménière’s disease for 8 years now. My first attack happened when I was 10 weeks pregnant with my first child. I manage it more by making head movements slow but find I am more prone to an episode when I am over tired.
Your not alone I’ve had Meniere since 1999 had surgery in 2009 6 yRd later it’s back doctor still have no cure and am sick of it. If you want to talk more about it I’ve have 16 yrs of this
I will be 54 next month. Over three weeks ago my left ear started high pitch screaming, which hasn’t stopped, I am having reverberation and tinny sounds. plus found myself veering to the left at times when walking. Ended up seeing an ENT and had a hearing test done and was told I have Meniere. I have been a CNA for 14 years in a nursing facility and had never heard of it or know of anyone that has it, I’ve been reading what I can find but still seem totally clueless as to how or why. I read about episodes or attacks but mine came on suddenly and have had no reprieve yet. The doc put me on prednisone and told me I need to have a sodium diet of 1000 mg a day. I am totally lost, confused, and feel like I’m in over my head to understand, Sorry, but there have been many times the last 3+ weeks I really do feel like I’m loosing my mind. I find the one relief to deal with it is smile and keep trying to laugh!
Harriet S Lefkowitz
I got Meniere’s syndrome and benign positional paroxysmal vertigo in 1997. I had the flu and afterwards I went from doctor to doctor. I first started with my primary care doctor who sent me to a neurologist at Maimonides Medical Center in Brooklyn. He said that if I wasn’t better in 6 weeks to come back. I wasn’t better so I came back. He did an MRI on my head. It showed nothing. He told me that I didn’t have anything serious. I said but I don’t feel right. He sent me to a specialist in Manhattan that put me on diaxepan. It didn’t help. I walked around in a fog and a friend told me to get off the medicine and I did. I moved to upstate New York and I went to see a new ENT doctor. They had vestibular therapy and I went but I still didn’t feel better. I went to the Lahey Clinic in Massachusetts. There I under went a number of tests and the doctor said that I had benign positional vertigo and that I needed to find someone who does the epley maneuver. I went back to my ENT doctor and my vestibular therapist. We started to do the maneuver and eventually I felt better. The maneuver is not fun because the therapist brings on the vertigo. There are times I feel okay and other times that I feel off balance. It is a chronic condition. I find that I have to watch my sodium and sugar intake. That makes a difference for me. When I go out to eat, I only go to places that make everything fresh and to order and I tell them no salt and no black pepper. At times, I get anxious and depressed. There have been times when I am so dizzy that I am housebound and disabled. All I can do is sit in a lazy boy chair. I feel better when I sit in a chair that supports my head.
I have been suffering from this disease for over 2 years now. It’s horrible. It’s hard to explain and half the time people think Im faking my symptoms. Why can’t we hold walks and rallys and hold gatherings that inform people of our condition! We deserve to have a voice!
I completely agree Hollie. There is not nearly enough awareness for this terrible condition. I wrote a post a while back to help explain what it’s really like to friends and family. You can check it out here: https://www.mindovermenieres.com/menieres-disease-take-a-dizzying-walk-in-my-shoes/
That was emotional for me to read. It’s everything that I went through and still suffering through. It’s so hard to explain to people because the “simple” explanation sounds like it isn’t such a big deal. People think, “Just go lay down. Thats what I do when I’m feeling dizzy.” It’s so much more than that. It’s the aftermath; the fear of when it will happen next. I feel so tired all the time and I feel like my dreams aren’t achievable. I’m scared to fly, go on a boat, be in an elevator, go on amusement rides or anywhere with bright lighting or stimulating lighting. There is enough of us that we should be able to bring awareness and make people say, “Oh! I’ve heard of that!” instead of, “What’s that?” I just don’t know where to start!
The following I write in hopes that it will help somebody else with Menieres Disease. I have been on a journey for 18 years trying to figure out how to deal with this debilitating disease. I totally relate to the issues that everybody posts as I’ve been there a long time. I’ve tried drugs, natural products, acupuncture, meditation, with none of those helping me at all. So long story short, here is what I have found works for me, to be symptom free and eating tasty foods and even cheat sometimes on saltier foods. Let it be noted that I waited to write this post until I had gone over one year with no Menieres attacks or symptoms. If I do eat saltier food, I will drink more water to help flush it through my system. What I finally decided to do was attack the disease nutritionally, which I had not totally dedicated my efforts towards during that 18 year period. Following is the list of supplements I take everyday (and if I miss a day, I’ve still been ok). Note the first two supplements are the most important and had the biggest effect on me not having anymore Menieres attacks or symptoms: 5000mg of Vit D3, 400mg of Chelated Magnesium, 1200mg of fish oil-twice a day, Vit C-500mg with Citrus Bioflavonoids-400mg+55mg Calcium—2 times per day, and Vit B12-1000mcg. I am currently 60 yrs old and also workout and do stretches, which I’ve done all along even when I was having attacks. Let me know if you have any questions and I’ll be happy to answer. Hope this information can help somebody improve their situation. Jeff
I was diagnosed 9 years ago with minears disease, this is the most dibilating scary thing I have ever endured. In the beginning I had 1 major attack just thought it was the food I are vomited and spun for hours. Then a year later I have fullness in one ear severe vertigo, ringing in the ear, hearing loss off and on for 3 months. It went away for 2 years then I got 1 major attack the week my dad died. I went into remission for 5 years with no symptoms, last year on Labor Day 2016 it all
Came back off and on until Feb 2017, stopped for 3 months, now I have had everyday vertigo,dizziness, off balance for 30 days now! I have been on diuretics, diazepam, nausea mess for the several vertigo. I had the dexamethazone injection last week, it helped the tinnitus but not the. Vertigo, my ENT is referring me to a neurosurgeon at UCSD for possible surgery options if this continues and does not let up. I am praying to God everyday for a cure for the horrible life changing disease. I’m only 52 and to think that I might need to stop working is unthinkable and to see that this may be challenging to be approved for SSDI IS INSANE! This disease is no joke! And family support is ne important. I feel for anyone who has this. God bless you all and may we all be symptom free soon. Has anyone had the shunt surgery? If so how has it worked
No surgery ever and after an 18 year tough journey, finally went after my Menieres with supplements targeting my immune system, and am now symptom free. I take a quality vitamin D3-5000 mg per day along with 400 mg of cheated magnesium. This worked for me but everybody is different. Hope this helps. I am 61 years old. Jeff
Why are more MD sufferers still not aware of upper cervical chiropractic treatment? It is highly specialized and not many regular chiropractors are even familiar with it, but it has done wonders for me and many others. I urge people like the author here to research this. Look up upper cervical chiropractic treatment and NUCCA.
Hi Sam, I actually discuss this at length in this post: The Ultimate List of Meniere’s Disease Treatments