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My life with Meniere's Disease

Updated on July 8, 2014

Why Meniere's Disease?


I have had Meniere's Disease for several years. As anyone who has MM knows it changes your life. The attacks come with very little warning. And they might last for several hours or days. When the attack subsides you will feel worn out as though you haven't sleep for days.

I started a blog in 2009 to provide insight on my own condition and any other information that I can provide.

I would love to hear from others who experience this terrible condition.

The beginning of my story of Meniere's Disease

5 years ago I was in a car accident. I was hit from behind. My neck snapped a little and I began to feel woozy. The ambulance came and took me to the hospital. As I was being driven there I became very nauseous and began throwing up. The EMTs were baffled because that type of accident usually doesn't result in someone throwing up. This continued while I was at the hospital. I was released and sent home.

Two weeks later I was driving home in the evening as I turned into the driveway I became very dizzy and sick to my stomach. My wife worried that I was having a heart attack. I wasn't, I was having my first Meniere's attack.

I went to an ENT the following week and he tested my hearing and suggested what my problem might be. It was either vertigo or a rare disease called Meniere's. Which he described as a category that doctors put patients who have problems with their balance but don't have vertigo.

Well, I was tested for vertigo and I didn't have it.

So, my journey with Meniere's began.

Tried the low sodium diet, the diuretics and the balance exercises....

After the initial diagnosis of Meniere's disease I went on the low sodium diet which at first seemed to help but then stopped. I was also put on a diuretic, which makes you go to the bathroom many times a day. Didn't help. I was given exercises to help with my balance, like the sodium diet it seemed to help but in the end I was still getting sick.

Difficult times became worse

It seemed like every day I was having an attack. On the good days I would take my antivert and within an hour the spinning would go away. But on the bad days, the spinning would be intense, I would become nauseous and I would start to throw up.

The sweat would be pouring off me and i would usually end up on the floor. Unfortunately, most of the severe attacks happened at work. On 5 different occasions the EMTs would have to wheel me out of the place I work to an ambulance then to the emergency room. It was very embarrassing.

Finally I went to my ENT and told him that I had to do something because this was making life unbearable especially for my six year old son who had to see his daddy this way.

He recommended a specialist who only dealt with inner ear problems.

Hoping the new treatment will work...

My new doctor was a well known inner ear specialist in Atlanta. From what I read about him he was on the leading edge of all things dealing with the inner ear, such as tinnitus and Meniere's disease.

At first he suggested the Meniett device, a relatively new device that blows pressure in your ear and supposedly lessens the chances of having an attack. Unfortunately the device is so new that the insurance companies don't cover it.

The next step was the gentamicin injections, a procedure that I describe later in this lens. I would get 4 injections total with the injections being spaced out every 2 weeks.

At this point I was ready for anything but the attacks were still coming.

The gentamicin injections

Gentamicin injections are given to Meniere's patients to kill the balance hairs in the inner ear; these hairs send signals to the brain about your balance. The injections are given in the ear that has the Meniere's disease. (Ask your doctor about how he determines which ear is bad. In my case the ear that I had the most hearing loss was treated)

I was given 4 injections over the course of eight weeks. Although my doctor told me there would be little pain, the procedure seemed very painful to me and I felt dizzy after each session.

When all the injections were given, I felt like I had made great progress. The dizzy spells were almost gone and I felt pretty good. But that didn't last long.

Back to the drawing board...

I guess it was a month after the last gentamicin injection when I had another attack. I wasn't 2 miles from my home driving to work when out of nowhere an attack came on and it was a bad one. Luckily I was able to get the car off the road. I had pulled into a fire station and as my luck would have it everyone was on a call. I sat in my car, my head spinning as I called my wife. She was on her way. I debated whether to call the ambulance, but then I started to throw up. I some how managed to call 911. It was hot that day I was sweating profusely. So I tried to make it out of the car I took 2 steps and fell face first on the lawn in front of the fire station. It wasn't long before my wife got there and so did the ambulance. I knew the drill; they started an IV and gave me phenagan as they took me to the emergency room.

It took hours before the spinning stopped that day and to make matters worse I had cataract surgery the next day.

For the next 2 months I had one attack after the other. Finally another trip to the emergency room made me realize I had to take drastic measures.

I had to go on disability.

Unable to work

Getting on short term disability was no easy task because Meniere's disease is not widely known. Usually someone goes on short term disability under the assumption that after a few months you would feel better and come back to work. Well that wasn't the case with me since there isn't a cure for Meniere's Disease. I had no idea how long it would take to feel better. I was off work for two months. I did feel a little better so I went back to work. The very first day back I got sick, not a real bad attack, it lasted about 30 minutes without any vomiting.

I was very down at this point. I wondered if things were ever going to get better.

And they did.

Relief and hope

After that attack on my first day back at work, I was determined to fight this thing. I made sure that I took all my medication every day and I scheduled an appointment with a vestibular rehabilitation therapist.

I had 5 sessions with the therapist. I was a little skeptical because I had heard that MM patients rarely got anything out of VRT. But I did. The exercises that were given to me gave me confidence in my balance and I learned two things. One, don't rely on your eyes for all your balance needs; your vestibular system in your inner ear needs to work in conjunction with your vision. Two, remember that MM patients don't have attacks merely by turning their heads like a vertigo patient.

Well, I haven't had a major attack for quite a while. Maybe the gentamicin injections finally started to work or maybe the medication is working, I'm not sure. I'm just glad that the attacks have ended for now.

What is Meniere's Disease?

Meniere's Disease is an illness of the inner ear that causes many symptoms such as dizziness, vomiting, pressure in the ear and tinnitus which is a constant roaring sound in the ear. Although it is called a disease it is more properly classified as idiopathic, meaning that the cause is unknown and so is the cure.

Meniere's Disease is relatively unknown because it only occurs in a small number of people.

What triggers a Meniere's Attack

When you have Meniere's Disease you are always thinking that an attack is around the corner. And with good reason, it just might be. But is there something that brings it on?  What triggers an attack of Meniere's Disease?

There are some people who believe that MM just happens out of the blue. It's due to the enlargement of endolymphatic sac (also called hydrops). When this happens the brain is receiving false information from the balance area of the ear. And according to most literature that endolymphatic sac is enlarged in part by the overuse of salt.

I have been told that visual stimuli and quick movements, especially turning your head, will not bring on attacks. I understand their reasoning but I'm not quite sure if I believe that. I know on numerous occasions that I have turned my head quickly and had an attack. But I have been told that folks with vertigo (BPPV) are the ones who have attacks due to quick movements of the head and visual stimuli.

Meniere's Disease and Salt

One of the first ENTS that I saw told me that a reduction in salt was vital to minimizing the attacks of Meniere's Disease. I thought that wouldn't be so hard. I would stop using the salt shaker and cut out a lot of my sodium. Of course that's all wrong. Salt or sodium is in most every food except raw vegetables and fruit. The recommended range for sodium for an md sufferer is between 1000 and 1500. A piece of pizza with no topping can have as much as 1200 mg of sodium. And if you have toppings that could go over 2000. That's just one slice!

And forget about soup, especially soup in a can. That's about 1000 mg right there. Any processed food has a lot of sodium in it.

The food served at restaurants are usually filled with sodium. Unless you know the chef and ask him to prepare something low in sodium then you will blow your sodium quota in one meal.

I tried to maintain a low sodium diet but it was very difficult. And frankly I don't think it helped my Meniere's Disease either.

Have you ever heard of Meniere's Disease

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Tinnitus

Many Meniere's disease patients also have tinnitus. Tinnitus patients hear a constant sound such as a hissing or roaring or ringing sound in their ears. Imagine hearing an unpleasant sound all day. That's enough to drive anyone crazy.

Tinnitus is a symptom of hearing loss. It is also associated with Meniere's patients because both deal with the inner ear.

Tinnitus can be caused by several factors.

Loud noise not only causes deafness but can also cause tinnitus. You have to wonder how many musicians of the last thirty years have tinnitus.

Medications often have side effects and tinnitus can also be one. High dosage of aspirin is one culprit. So are diuretics which are commonly used by Meniere's disease patients.

Excess fluid in the ears can contribute to tinnitus.

B12 deficiency is also a factor in tinnitus

Growing old can cause many problems and it also can cause tinnitus.

Head and neck injuries affect nerves that may cause inner ear damage and tinnitus.

Acoustic neuroma is a rare growth on the cranial nerve which goes from the brain to the inner ear. It usually causes tinnitus in one ear.

The stages of meniere's disease

The first stage consists of dizziness or vertigo lasting anywhere from minutes to hours. I certainly can attest to this stage because when I became my meniere's journey the attacks were often and without warning but most of them lasted for hours.

The second stage is when the hearing loss and tinnitus intensifies causing hearing problems. I definitely had hearing problems and as a matter of fact my hearing in my left ear is still getting worse. But the tinnitus usually only occurs when an attack is imminent.

The third stage is the burnt out stage of Meniere's disease where the hearing loss is severe and the vertigo is mild or have ended completely. I wish that I was in that stage and I thought that I was about a month ago but the attacks that I have had in the past week shows me that my bout with meniere's isn't over. I have had some people tell me that their meniere's was dormant for many years only to come back, not as bad as before but it still comes back. I would like to see my meniere's go away for about 40 years!

Of course with meniere's disease nothing is certain so these stages might not apply to everyone.

Things that should be avoided if you have Meniere's Disease - CATS (not the musical)

  • Caffeine: Because it is a stimulant and it makes Tinnitus worse.
  • Alcohol: Doesn't mix well with your medication.
  • Tobacco: Restricts the blood vessels.
  • Salt: See above.

Valium for meniere's disease

One medication that I have had luck with is valium. Usually valium is taken for anxiety and nervousness. With meniere's disease valium can be very helpful because it helps relax the vestibular system. The amount of valium that is usually prescribed for meniere's patients is a lot smaller (in my case 2 mg) that when prescribed for anxiety.

Menieres disease and diuretics

One medication that has seemed to help over the years is a diuretic called Triamterene Hctz or Dyazide. Diuretics are helpful because they reduce the amount of fluid in the inner ear which is a cause for the meniere's attacks. What makes this diuretic different than others is you don't have to go to bathroom constantly during the day.

Famous Meniere's disease patients

  • Alan Shepard, the first man in space.
  • Vincent Van Gogh, because of his dizziness he was thought to have had Meniere's Disease.
  • The poet Emily Dickinson.
  • The great author Jonathan Swift

Artificial Inner Ear

New Development that may help Meniere's patients!

An encouraging development is taking place at Johns Hopkins. Dr. Charles Santina is working on an inner ear device that will help maintain balance. To read more about this go to my blog My life and Meniere's Disease

Another new inner ear device is being tried out in the state of Washington

gentamicin injection

Hearing loss and Menieres disease

Hearing loss as you can imagine is a common problem among Meniere's disease sufferers. In my own case I have lost most of the hearing in my left ear which is the one with the meniere's. The gent injections that I have had over the years have seemed to make the hearing worse. Unfortunately a lot of the treatments, especially surgery, have an adverse effect your hearing.

Bilateral Meniere's

Meniere's in both ears

Meniere’s disease is a difficult thing to deal with for a few reasons. One there is no cure which means you have to somehow have to lessen the symptoms of it, like vertigo and nausea. Another thing is that it seems difficult at first to distinguish whether you indeed have Meniere’s disease or maybe some other inner ear and balance problems. Then if you are diagnosed and you think that things can’t get any worse, unfortunately they can. Having Meniere’s disease in both ears (bilateral) is really challenging.

Headaches and Menieres disease

There seems to be a connection between headaches, migraines and Meniere's disease. On my blog I have written several posts about the subject and there are lots of people seem to think the same way, especially with regards to migraines, which are way more than just a headache.

Update on my condition

August Update...

After a relatively quiet winter and spring, I started to have meniere's attacks again this summer. They weren't as bad as before but they still gave me cause for worry. I am hoping that it is only a slight setback to my general recovery.

October Update

Things are a little better now. I stll have the occasional attack, but nothing severe. Hopefully it will stay that way.

February 2010

The past two months have been rough but I am sure things will get better.

August 2010

I have been on disability all summer because of all the meniere's attacks that I have had. I also had 2 more gent injections.

July 2011

I am in the process of applying for long term disability, social security

End of 2011

started to have bad attacks again...

End of 2012

While the number of attacks have subsided dramatically, my hearing has gotten a lot worse and my balance doesn't seem very good at times.

Memory issues with Meniere's disease

Something that I encountered with meniere’s and apparently others have too, is having problems with memory. I’m not exactly sure why but I think it has to do with the stress that meniere’s disease produces. Stress seems to make me forgetful along with being agitated. If you feel that way as well leave a comment and let me know.

Let me know what you think... - and give it a rating if you like :)

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    • profile image

      April Luna 

      13 months ago

      I was recently diagnosed with Meneires and in the short2 months I feel as though I have no life or support from any doctors I've seen which make sure it more frustrating it seems to that these ENT doctors would have More compassion and understanding with this disease. My doctors wouldn't even fill out my short term disability after the 2nd month although physically I didn't feel well enough to go back to work or drive but I've. Wen forced to and pray I don't have a bad episode while driving and crash or while climbing the 15-17 steep steps I have to climb in order to get into my office! I feel so angered!

    • profile image

      Patti Voichoskie 

      20 months ago

      I was diagnosis 6 years ago I have had frequent attacks lately and get depressed easily and irritated more often I worry constantly about going to work or calling in sick . The vertigo and vomiting is horrible and I cry frequently about my situation. People are not understanding of this disease i'm a nurse you would think they would have compassion. I'm allergic to penicillin and z pack would I still be able to have the injections.

    • Shyron E Shenko profile image

      Shyron E Shenko 

      2 years ago from Texas

      I feel your pain and I feel mine. I have to go to the ER with migraines and one of the worst they discovered the meningioma but was diagnosed as a schwannoma and directed to a Neurosurgeon, who told me, I have also have Meniere's and I needed an operation, to remove the meningioma which I declined. I also have tinnitus and vertigo.

      I hope your episodes become less and less with time.

    • profile image

      Cathy 

      2 years ago

      I was diagnosed with mineres 7 years ago. I'm 44 and got put on long term disability a year ago. I've tried many things to help with this nasty condition. Eg. Acupuncture, naturopathic care, chiropractic care, in -home councillor (because I can't drive) herbal supplements and I use the typical med's given for mineres and I've tried medical marijuhauna (oils/edibles) I suffer cluster attacks sometimes up to 15 attacks in a few weeks. The attacks last from 1-12hours. I also have the 'special' drop attacks. Lucky me "NOT". I do try my best to see the humour in this dumb condition. My hubby nick names me "wobbles". What seems to have helped settle my attacks are Steroid injections into my affected ear from my ENT. I still get attacks but they're not as severe or as often. Unfortunately the mineres has developed into my other ear.

      The worst part of my story is all the things I've had to give up. Eg my succesful buisiness, my loved 22 year career as a Early childhood educator, my love for skiing, biking, hiking and much of my independence. Because this condition is invisible many people think if you look fine you must feel fine. I struggle daily with anxiety and have become fearful of being in public alone. This makes you look deep within your self and find things to be grateful for. I live day to day and keep hoping for a cure one day. My advice is to never give up on yourself, find things to make you happy, be honest with the people around you, eat healthy and excercise a little everyday. Good luck to my fellow wobblers.

    • profile image

      Rebecca 

      2 years ago

      I am considering having a Gentamicin injection after 7 years of trying everything else. I think I will be receiving the low dose variant. Does anyone out there have experience with this that they could impart? I have heard the results for success are very good but I would love to hear from someone who has gone through this. Thank you fellow Menieres sufferers.

    • profile image

      Marc 

      2 years ago

      Hello to all, I stumbled on this site by mistake. I am a researcher working on Ménière's disease with an ear specialist in Quebec. I haven't had the chance to read all the posts, but from the last few i can already tell you betaserc is more for vertigo control than tinnitus (ringing), and also that BPPV can occur a lot with Ménière because of the increased fluid pressure in the ear which can displace small crystals called otoliths (this is the cause of BPPV, they usually go back in place after a few Epley maneuvers). A new surgical technique that is different from shunts or regular decompression is being implemented, success rate seems to be spectacular and more research is being done on it. We recently published an article about it, and are working on a few more. It will take a while before it becomes standard practice and sadly there is still no way to recover hearing that is already lost, but for cases that do not respond to medical therapy and haven't progressed yet, there is potential for a much better life with this disease. Don't lose hope, experts are working hard on it!

    • profile image

      Anita 

      2 years ago

      Thanks for all your information .. I just found out today that I have MD ..

      it started with just the ringing and loss of hearing .. But than it got worse with the dizziness and throwing up which started form 30 min to 5 hr long ... I'm afraid to go out sometimes cas I want be sure what I'm feeling ... I'm due for and MRI this Saturday to be 100% but from what I read about it it's all happing to me ... The doc told me I'm too young to have this but I don't think there is an age ... I'm going to try the low salt diet and no caffeine see how it helps ... My work is driving around so this makes my life very difficult ... Today the cost or gave me some tablets called betaserc it's suppose to help with the ringing and vertigo ... I hope it works ... Thanks again

    • profile image

      Joez123 

      3 years ago

      Hi I just read your article - this is really a very helpful article about MD.

      I am having similar situations but the doc said that it is BPPV not MD because I do not have any hearing loss or ringing. I have dizziness now and then and sometime when I lie down, I felt a spell of dizziness (spinning). It seems to be related to position change. But I tried the Epley maneuver at ENT doc office; it got things worse - actually made my dizziness worse. I live in Atlanta as well and wonder if there is any good inner ear specialist (Doctor) or vestibular rehabilitation therapist that you have seen before? Thanks.

    • profile image

      Helen 

      3 years ago

      A little hope for all of you fellow sufferers...get tested for sleep apnea...i was found to have low oxygen levels during sleep...am now on oxygen at night and its been 2 months since an attack. My doc said 1/3 of people who have meniere's have sleep apnea also....good luck...it is a miserable condition to have.

    • profile image

      Lori 

      3 years ago

      I have had menieres for 18 years. I was diagnosed after my first child was born. I went for a few years without many symptoms but my hearing in my left ear was steadily getting worse. In the last 2 years it has come back with a vengeance! I'm almost completely deaf in my left ear and the Loud ringing,buzzing noise is almost more than I can bear. Not to mention I am also completely blind in my right eye so my balance is terrible. I fall and run into things all the time. My whole world is like it's on the spin cycle. I miss a lot of work which I can't afford to do not to mention the looks and comments I get because it's not a disease that you can see or that is going to kill you even though lots of times it gets so bad I wish it would. I'm not sure what my next step will be but even though I wouldn't wish this on my worst enemy, it's still nice to know that there are at least other people who understand. It makes me feel very lonely and isolated.

    • profile image

      clare r 

      3 years ago

      hi david ive been reading your page I had surgery on my ear six years ago and the couple of years ive been really porelygetting vertigo really bad dizziness and nausea and bad headaches and my balance has been rubbish been back a lot of times to see my gp which he has always said I have an ear infection,my hearing is poor and have been suffering from ringing and different noises in my ears,which all of this is making me very saddepressed an anxiety,its really affecting my life at the moment ive even started saying I don't kno why I even wake up to be like this almost every day its horrible ive cried so much I don't drink or smoke have no social life as I feel ill,my gp has now reffered me back to ent so im just waiting for my letter i just want some answers to what is wrong with me,the symptoms i have explained do you think it could b possible that i could have menieres disease,or just suffering from bad vertigo,

    • profile image

      Jane S. 

      3 years ago

      Thank you for sharing your experiences with Meniere's disease. For about 6 years I have experiences severe dizziness in the head. When I am walking, moving about normally or even lying down. I have had many, many symptoms which my neurologist thought was possibly MS. So I have been on the MS road for many years but not diagnosed with it. Just recently I have a sever attack of vertigo. Woke up in the morning and every time I moved ( my whole body ) I experiences a terrible, terrible dizziness and vomited every time I moved. In the past couple of years I have been to emergency twice with severe ear pain only for the physician on duty to say (after examining both ears) they look perfectly normal. I have a terrible sensation in my ears like wind blowing and from time to time I can't hear for 30 seconds or so. It comes and goes. I get cold sores all the time, especially up my nose. I also suffer from fibromyalgia and ulcerative colitis. It's been a long frustrating road to this point however I am hopeful of a diagnosis in a few weeks after testing with a neurologist who specialises in hear and balance problems. If any of my symptoms sound like symptoms you or some of your reads have experiences I would like to know. I am a professional singer but have had to stop performing because of this particular issue. I am blessed to have a fantastic husband who is very, very supportive and loving. Also, I am a follower of Jesus and trust in his love and goodness. His plan for my life is an interesting one and He does promise not to give us more than we are able to handle. I take great comfort in that. Thanks once again for your honesty and for sharing. Jane S. (from down under)

    • profile image

      Panamabeach 

      3 years ago

      Hi David,

      I love your site...it is so great what you are doing here...I just wanted to add my " tuppenceworth" on Living with Meniere's.

      The biggest thing was my mental state...the stress menieres causes. So I was such a wreck my doctor offered me some free sessions on a mental health program ( Australia) and the psychologist was a German guy who helped me tremedously to take the anxiety and fear out of my life. I also read Meniere Man's The Self Help Book For Meniere's Vertigo Atttacks, started yoga in a community centre and swim in an outdoor pool. So more exercise seems to help as well. I am keeping a diary...but this past 6 months noticibly less attacks...and they feel less or I am coping with them better. Either way, I get over them them quicker because I have a technique to talk my way through....Before I was just totally freaked out and scared. And i am sure freaking out makes it all so much worse.

    • Sandy Russell profile image

      Sandy Russell 

      3 years ago from Pierson, Florida

      I'm living with menieres as well.... I'm almost 50 now my 1st attack was after my 3rd son I was 24 yrs old, I did have a head injury I was hit in the back of my head with a reinforced metal pipe at 16 and at 21 right above my right ear a sledge hammer grazed my head causing a conclusion so my Dr said my 1 or 2 attacks were from those accidents. I went for 5-6 yrs with no attacks then out of nowhere violent attacks (all either at work or in a public place) when taken to ER I was checked for drugs and alcohol as I couldn't talk due to vomiting and spinning only to find out hours later it was vertigo. They lasted a day or so each and after 2 yrs no more episodes. Then in 2004 it hit me hard I spent 13 days in the hospital the 1st time it came back, and most of my attacks lasted for 7-10 days sometimes longer for almost 6yrs..... I was so sick and depressed cuz nothing was working and I was told this is what I have to learn to live with.....no cure, I considered ending it all til I met this one Dr..... Dr April she said she noticed my B12 was always really really low so she wanted to see why....she gave vitamins for a week then checked blood still low, gave me the B12 strip for a week then checked blood still low so then she said she thought my body wasn't absorbing B12 and started giving me injections. ..... she was following a Mayo research study on it and I am proud to say that I have not taken any medications ( no more valium,antivert,water pills, topomax,reglin, I eat salt moderatly) I take the injections and so far so good.... hopefully it stays like this and it's just not yet another calm before a storm but at least I do feel alot better and it does help with the ringing in my ear

    • profile image

      jemichae 

      4 years ago

      Hi David,

      Thank you for sharing you story - lots of interesting and useful information.

      Just wondering whether you used the Meniett device after your gent injections.. and if so.. how it went?

      Many thanks,

      James

    • profile image

      Venus85 

      4 years ago

      Amazing story Mr. Meniere and hoping for your complete health recovery.

      I am an ENT doctor and i think people are suffering from this disease just because of lack of knowledge and here i really appreciate you for sharing this informative piece of writing. tinnitusreliefinformation contains many other informative points which should be practiced by every human.

    • NickHerc profile image

      NickHerc 

      4 years ago

      Thank you for sharing! Hope you're well.

    • profile image

      Samspeaks 

      4 years ago

      Sam

      I have had Meniere's Disease for 45 years. Each year I would have a roar appear in my left ear, which caused me to not hear at all in this ear during this period (maddening). The roar would last between 7 and 8 month's then go away for 4 or 5 month's then re-appear again.

      I have tried all different medications and diets, reduced my salt intake,never smoked, and don't drink. to make a long story short. At age 70, I had no breaks from my latest Meniere's Disease attack for 13 month's from this maddening roar in my left ear. After speaking and treatments with my newest ear,nose and throat specialist (Doctor). He suggested that I try Bikram hot Yoga, (3days a week) which I did do. I also have had many episode's of vomiting and vertigo, along with the roar.

      After 10 weeks of Yoga my roar did go away. However I developed a hernia from this exercise and had to have surgery and was off of Yoga classes for 6 weeks for healing. During this period my Meniere's Disease showed it's ugly head (roar).

      After going back to my Yoga class, my roar disappeared once again, after 10 weeks. The following year I caught the flu and it lasted for 4 weeks, no Yoga,and the roar re-appeared. After my flu bout ended I went back to my Yoga class and in 10 weeks later the roar was gone.

      Today at age 73, I continue on with my Hot Yoga class with no Meniere's disease attacks for well over a year. For me that's a God send. I hope my input helps someone who has Meniere's Disease.

    • profile image

      heatherfalls84 

      4 years ago

      I am new to this md thing. Being 29 and was just diagnosed 2 months ago. I have no insurance and i can deal with a lot but not the head buzz feeling. I cant stand feeling like im on medication when im not. They tried hctz but it didnt help. I was on ativan. It did help but im now out. I notice that traveling makes me flare up. And i dont have these hour flare ups and go back to normal. Mine last weeks. I have children and its so depressing. I feel like im never going to have a normal life with my husband and family.

    • profile image

      tonyleather 

      4 years ago

      My poor wife is a sufferer, and even the thought of going anywhere aboard a vessel that travels on the sea can make her go green, and too much salt makes her dizzy! We have to be really careful!

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      anonymous 

      5 years ago

      More people suffer than talk about it. Thank you for sharing.

    • mel-kav profile image

      mel-kav 

      5 years ago

      Wonderful lens. I do hope that you are doing well at the present time.

    • profile image

      Namsak 

      5 years ago

      My wife has recently been diagnosed with Meniere's Disease and we are looking at various treatment. Your lens has been very helpful.

    • suepogson profile image

      suepogson 

      5 years ago

      I do feel for you - my father had ear problems but nothing as bad as this - and I know he really suffered. Hang on in there and keep updating us please.

    • Socialpro54 LM profile image

      Socialpro54 LM 

      5 years ago

      nice lens!!

    • marktplaatsshop profile image

      marktplaatsshop 

      5 years ago

      This is a great lens, thank you for sharing it with us, people will now quickly understand there is something wrong with them, and even ask if it could be MM at the doctor I thin you helped a lot of people by telling your story, tough you had a rough time, I wish you all the best

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      anonymous 

      5 years ago

      Hi, thank you for visiting one of my lenses, your lenses are too personal and it is touching through others, nice lens overall. have a nice day always

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      jennabeezer 

      5 years ago

      Hang in there! While I don't have personal experience, I have a friend who has Meniere's, and my mother suffered for many years with BPPV before she was finally diagnosed. I know how much these symptoms make it difficult to function. Best wishes to you in the future.

    • Virginia Allain profile image

      Virginia Allain 

      5 years ago from Central Florida

      Last summer I had vertigo but it responded well to that half-somersault maneuver and seemed to be related to the crystals in my ears. This summer I'm having sudden severe headaches, that again they think might be inner ear related, but no dizziness.

      So I'd looked up Meniere's disease but it doesn't seem to fit my symptoms. Best of luck to you, you have had a rough time of it.

    • sponias lm profile image

      sponias lm 

      5 years ago

      Alternative medicine is replacing traditional medicine in many ways. Diseases that cannot be cured based on the limited knowledge of our historical time may be cured thanks to the comprehension of the spiritual dimension behind the material reality. You should look for new alternatives that may help you deal with this strange disease instead of passively accepting your destiny.

    • profile image

      anonymous 

      5 years ago

      I have been suffering with Meniere's for 12 yrs now. I'm only 42 and considering disability as my boss has hinted she may not be able to keep me. This Disease is ruining my life.

    • Cari Kay 11 profile image

      Kay 

      5 years ago

      I know you are going to help so many people with your own experience. Thank you for that. I do hope and pray and this gets better for you.

    • kavalonthatsme profile image

      kavalonthatsme 

      5 years ago

      Hi thank you for this lens, I have severe vertigo and mine is incurable, there is something going on with my brain, I have attacks in the grocery store, and etc, some things I know will give me an attack, other things I do not, so for me it is safer to stay home, ALOT! I may leave home on days that I am feeling good. I have had this since 2010 - due to hypoparathyroidism. This is the very short version, hope things get better for you!

    • BobZau profile image

      Bob Zau 

      5 years ago

      Well written and quite interesting... though I regret I had to receive this education at your expense.

    • Judy Filarecki profile image

      Judy Filarecki 

      5 years ago from SW Arizona and Northern New York

      Very well written article. I've had tinnitus for years along with hearing loss and recently spent a few hours in the ER with what was later diagnosed as vertigo. (Thank goodness it wasn't a stroke or heart attack.) Your article was helpful in distinguishing between t he different inner war problems.

    • PinkstonePictures profile image

      PinkstonePictures 

      5 years ago from Miami Beach, FL

      Thanks for sharing your journey, it helps others to share your experiences and hopefully they can return the favor.

    • Davidfstillwagon profile imageAUTHOR

      Davidfstillwagon 

      5 years ago

      @anonymous: Hi Deb,

      I had what was called the caloric water test, where water is irrigated into the ear canal. I think that it is considered part of the ENG tests. I also had a test to rule vertigo as well. But those were the only ones.

      Thanks for the comment, this week on my blog I will include part of your comment on the post.

      David

    • profile image

      anonymous 

      5 years ago

      I was diagnosed with Meniere's about 4 years ago after several attacks of vertigo. I was treated for several months for an inner ear infection before I got the diagnosis. I have had great success with Dyazide, 1500mg sodium diet and valium when I felt symptoms coming on. But I have had constant vertigo, balance issues, headache, fatigue for the last 3 weeks. I have never had a spell last this long and it has me concerned. I recently had a MRI and it ruled out other issues, but I am wondering what kind of testing you have had. I have been doing some research and found the following test should be performed. Electroencephalogram (EEG)

      Electronystagmography "ENG". There also another test called the Caloric

      Transtympanic electrocochleography (ECOG Test)

      Syphilis Mumps or other serious infections in the past Inflammations of the eye Auto-immune disorders or allergy or any ear surgery. I believe I had the ENG already done, but wondering if it is beneficial to have the other testing done. I am at my wits end at this point. It just scares me that I have done so well for so long and then have this go on for so long.

    • profile image

      anonymous 

      5 years ago

      My heart goes out to you ... I don't know how you manage to keep it altogether. But, for what it's worth, I think it's wonderful that you are now sharing your journey with others. I'm sure those who are in a similar situation or who haven't quite put a name to the symptoms they have will be very appreciative of the information you've shared within this article. Blessings for you!!!!!

    • iwrite100 profile image

      Maribel Forayo 

      5 years ago from Philippines

      It's my first time to read about this disease. You took pretty much time writing all these information. It will really help one who is in the same situation.

    • lisln profile image

      LorLinda 

      5 years ago from Denver Colorado

      I have never heard of Meniere's disease this is the first time hearing it. How awful for you I just can imagine the helplessness you must of felt during your episode. I am glad that you got to the nitty gritty of the cause thank God for that. Telling your story just may help others who don't even know that is what they are dealing with. Kuddos!

    • profile image

      anonymous 

      5 years ago

      @anonymous: I was tested for allergies and I was told to stay away from gluten and dairy until I detox from metals. Thanks for your information.

    • profile image

      anonymous 

      5 years ago

      All Menierians need to find the most knowledgeable specialist they can afford.Unfortunately, there are not that many properly trained and informed specialists. If you can consult an ENT, don't settle for your PC. The best doctor to treat meniere is a Neurotologist, specialized and with ample experience in balance disorders. I read all of your stories and I never heard anybody being tested for allergies, tested and/ or treated for AIED, never heard any one mention "the Microwick system" to deliver gentamicin shots (less painful and can be applied/ utilized and monitored by patient at home by patient himself). My book is full-chock of medical and practical advice for meniere based on twenty-plus years of dealing with devilish illness. You are all in my prayers. I know first-hand what you are experiencing it. My book is a book about resources, hope and...action

    • profile image

      anonymous 

      5 years ago

      My heart goes out to all of you after reading each one of your stories. I have been through it all, yet, your comments, fears, desperation and frustration touched my heart deeply. I encourage you to read my book. You will find advice and resources that you never have heard of before, Each patient reactions differently to diverse treatment. Meniere is totally unpredictable, there is not one single treatment tailored for everyone., yet there are general rules to be followed by all sufferers

    • profile image

      anonymous 

      5 years ago

      @anonymous: Lori I understand your position. I haven't taken too many days off, since I can work from home but that may end. I think you need to have your sickness documented by going to a doctor and ask them for guidance. Would love to know what you find out. Good luck.

    • profile image

      anonymous 

      5 years ago

      I was diagnosed in 2009 and at first I though it was stress related. It went away for 16 months an last string it came back. I work as a Software Engineer, so it has been difficult. I feel my job is in jeopardy. The water pills don't work and the low sodium diet don't wort either. I was told mine are triggered by migraines. I recently had Nutritional Response Testing by a holistic doctor and was told I had metal poisoning, so I am detoxing and hoping that may be the cause of my vertigo. I am concerned since there are mornings I can't function and need to go to work. How did you go on short term disability, did you go to an ENT to get a recommendation? I live in Long Island NY. I would love to find a doctor who specialize with Meniere's disease. Hope you are feeling better. Thanks for creating this page.

    • profile image

      anonymous 

      5 years ago

      My book Back in the Swirl: Coping with Meniere's Disease, Migraine, chronic Depression and Baffled Doctors has been reviewed and recommended by Dr. Herbert Silverstein in the current issue of the Silverstein Institute News Letter,

      Dr. Silverstein is a world - renowned ENT physician, founder and president of the Silverstein Institute Ear Research foundation in Sarasota.. You may check his website and/or the new launched Facebook page.

      I wholeheartedly recommend this facility, and the expertise of Dr. Silverstein

      Mercy Kim- Cabrera

    • profile image

      anonymous 

      5 years ago

      Hello fellow Menierians. My name is Mercy Kim-Cabrera. I am a veteran of MD for over 20 years! I am a bilateral Menierian now. (both ears affected by the illness). I just published a book,

      Back in the Swirl: Coping with Meniere's Disease, Migraine, Chronic depression and Baffled Doctors.

      It is a book about hope. ..and action!

      I t is published at Amazon Kindle store. also on Kindle FREE APPS for I-phones, Android, PC's Mac, and Tablets

      Also published by Smashwords. Price is just $4.99 to make it available to everyone!

      Read it and contact me for further questions

      I am glad to help you.

    • profile image

      anonymous 

      5 years ago

      I had the labyrinthectomy Dec 3 2012 and feel like a new improved person. My eyesight is still a tiny bit off but getting better every day as is my balance.The tradeoff is no more vertigo! I am an RN at a busy hospital and I went back to full time work after 6 weeks. I worked hard on my VRT during my recuperation and that paid off. I went thru the different treatments first before deciding on the surgery so hang in there you will find something that works for you.The surgery and recovery was not unbearable but recovery depends on how active you are prior to surgery and I forced myself to stay active even during the worse of the vertigo spells and then one week post op I was taking 1/2 hour walks 3 times a day plus vrt exercises. I am now back to my old exercise routine of weights and swimming. You get out of it what you put into it.

    • weakbond profile image

      Nnadi bonaventure Chima 

      5 years ago from Johanesburg

      This is my first time of hearing about this sickness , all thanks to you

    • profile image

      anonymous 

      5 years ago

      Wow. Informative. I have met so many people diagnosed with Menieres disease it is surprising that it considered rare or even unusual. So happy you found good doctors.

    • profile image

      anonymous 

      5 years ago

      I started to have a roar in my left year 2 months ago. I am a doctorate student who has always made straight A's but the roar, vertigo, nausea, has been so horrible I had to leave school. In the past month I have had heart issues too. Like it pounds very hard, misses a beat, or even races for no reason at all. I can just be laying in bed. Last night I thought I was going to die in my sleep. I stay home with my 4 year old daughter & get worried about the issues, feeling faint, or the heart issues, or roar with dizziness with her around. I feel disabled. :C

    • profile image

      anonymous 

      5 years ago

      Hi David, your story is identical to mine! I have had nine for almost 25 years! For the longest time I thought I was cursed! How could I have this horrible disease! The reason I got to this page is because very early this morning I had the worst dizzy spell! I hadn't had one this bad for a long time! I lost my hearing on my right ear and now I am thinking if it will affect my other ear now! I really pray to god that it won't! I had a shunt put in in back in the late 80's but even though it seem to help some my menieres never went away! Need to think about what I need to do now! Thank you for sharing your story! I am sorry for all you had to go trough but remember you are not alone! Best regards! Dizzylucy

    • profile image

      anonymous 

      5 years ago

      david, im at the point to start disability any pointers? im still working but its getting really difficult and don't know how long they will put up with me.

    • Davidfstillwagon profile imageAUTHOR

      Davidfstillwagon 

      5 years ago

      HI Amy,

      I know that meniere's can be a real life changer. I had to go on short term dis. twice and now I am on long term social security disability so I know how difficult it can be. You might want to find a ENT who specializes in meniere's or vertigo who can suggest possible treatment options and you might also want to check with your HR department at work and also see options you have there as well.

      You might also want to look at the government program FLMA to see if it would be something that might help you.

      I hope that helps and stay in touch

      David

    • profile image

      anonymous 

      5 years ago

      Hello all...

      I am so frustraqted. I have been recently diagnosed with Meniere's and have struggled with some of the symptoms for some time. I have had migraines since I was a child and bad ears, multiple surgeries (tubes) x4. Over the past year I have experienced several episodes lasting roughly 1-2 weeks of vertigo. I have not thrown up, however have periods of time that I experience nausea for days on end. I work 40 hrs wkly in a highly stressful profession that appears to trigger the vertigo. I have been in my chosen field for 27 years and am tryiing to figure out what else I could do that will pay the bills that is less stressful.I am so frustrated I have seen an ent, and my pcp, been placed on a diruetic and will start pt to learn how to hold my head differently. I am currently in the midst of another attack and this time colud see that it was directly related to stress. I am now getting depressed b/c of feeling physically ill and drained all of the time that it is worsening the vertigo. the doc wrote me out of work for the next two weeks, but I am afraid to turn it into my company fearing that if my short term disablity that I pay for does not cover me than I will not have income for 2 weeks. I am self supportive and cannot afford to be out for another 2 weeks without pay, since I have already been out for one without pay. I have been told that std does not cover meinieres.

      does anyone have any experience with short term d through aflac? any advise would be helpful. I feel bad for complaining b/c I have not suffered like some of you on this site, just that I have always been strong and fun and always remained positive through tough stuff, I feel like this disease is sucking the life out of me and because I am not falling on the floor and can put on a happy face when I have too I am supposed to "buck up" as one doc told me. sorry to drone on, just need a little understanding..Good luck to everyone!

    • profile image

      anonymous 

      5 years ago

      I forgot to mention that by hours upon hours of research, I found aspartame and Splenda worsened my condition. I still do not consume either. Saccharine is ok.

    • profile image

      anonymous 

      5 years ago

      I am currently 52 years old. Female. I started my battle with Meniere's about 7 years ago. It began as slight dizzy spells and roaring in my ears. I went to an ENT and after presenting all my symptoms, I was sent for a hearing test. I had only 43% heating in my right ear. That's where the roaring was coming from. After a few months if Valium, Dyazide, Meclizine and even Prednisone, the vertigo just got worse. At about year 4, I actually called 911 thinking I was having a heart attack because of the extreme vomiting and sweating. That had never happened, just nausea. I stayed 11 hours in the ER examining room mostly passed out from the IV Valium and antivert. To make a really long story shorter, I endured the attacks while they got progressively worse. Many attacks happened at work. I had to be let go. When I started having "drop attacks", I knew drastic measures needed to be taken! I could be anywhere at anytime and get "the feeling" and just fall to the floor. I can't count the number of injuries I sustained. The most severe was a broken collat bone and split open forehead. I finally, by luck or divine intervention, had an attack in the office of my mothet's neurologist. He was baffled and concerned. He instantly called U of I at Chicago and got me in to see Dr. Miriam Redleaf. After much testing and consultations, we decided to go with a full labrynthectomy of my right ear. At that point I only had 2% hearing anyway, so removal of my inner ear would make no difference. Along with the surgery, I was an ideal candidate for a BaHa by Cochlear device for hearing. During the labby, a few incisions were made in my skull and outer tissue so that a titanium post could be implanted. This post is actually going to absorb into my skull and fuse with it permanently. Then I will get a snap-on device that will receive sound, conduct through my skull bone and make my brain think it hears from my right side. It's been three months since my surgery. I can get my device on Feb 18. So far, I've had not a single vertigo episode since the surgery, but I do have balance issues. I walk with a cane in open areas and look like an enebriated person when I walk. I am a constant living bobble head, but it's not necessarily permanent. I am still in healing stages, as the surgical sight is still healing and shrinking. I don't mind the inconvenience of imbalance, because I am cured of the attacks and soon I will be able to hear again. It is truly a dream come true and I feel so blessed having been sent to the right doctors. That's my story. So far...!

    • profile image

      anonymous 

      5 years ago

      @anonymous: I feel very, very bad for you. I wish there was something I could do!!

      I got lucky, I thought I had MM but only had Benign Paroxysmal Positional Vertigo. It can be fixed easily with Canalith Repositioning Maneuver.

      But I guess you've been acturally diagnonised and couldn't be as lucky as I.

      I truly feel for you and hope things get better.

    • CanInsure profile image

      CanInsure 

      5 years ago

      Interesting lens

    • profile image

      anonymous 

      5 years ago

      @anonymous: BE SURE YOU USE A HIGHLY REPUTABLE ENT and do a lot of research, some very shady MD's out there looking to make a buck off your pain and don't care if they destroy your hearing in the process. Get more than 1 opinion. If I had it to do over again I would run like Hades from the shady doctor who did my inner ear perfusion which was NOT necessary. I did not meet the criteria as needing it.

    • profile image

      anonymous 

      5 years ago

      The day after my 3 day inner ear perfusion I developed a severe head/ear pain, that has been chronic and does not seem to respond to suggested diet changes. And it is so very hard to do both low Cholesterol and Low Sodium, food taste like cardboard. Has any one else experienced the chronic head/ear pain? It leaves me noise and light sensitive, I do not have migraines. I'm 64 and it is getting to the point it is affecting my ability to drive, taking away my independence, and I an of Celt decent and don't take well to being dependent on others. After this last bout brought on by the FLU shot, which progressed into Vertigo, then Menieres attack I am totally miserable.and not sleeping well despite med changes. And the meds blurring my vision don't help either.

    • profile image

      anonymous 

      5 years ago

      I had dexamethasone implant in my left ear in 1989. It worked wonders for me.

      Was diagosed that year and was bedfast for over a week with Meniere's before doctor would do the surgery. I was sent to Memphis, TN to Shea Clinic. Dr. Shea is a renowned authority on Meniere's Disease. My chronic sinus problems seem to bring on MM dizzies, as I call them. Valium is the only thing that helps me, but doesn't always take the dizziness completely away. I was told you couldn't be qualified for disablity, because MM is so sporadic with it's symptoms. Lost a job recently because of it, and now wondering what kind of job I can do with MM!!??!

    • adenoidcysticca profile image

      adenoidcysticca 

      5 years ago

      Interesting article. The inner ear device to help maintain balance seems it would be of great help for menieres disease patients. This disease is something I am curious to know more about.

    • profile image

      anonymous 

      5 years ago

      I just got diagnosed with this disease and I am only 30 years old and can't afford to lose hearing in my affected ear due to my job. I am very scared and confused. And the ringing will not go away. I feel like my life is over. Please someone give me some advice!!

    • profile image

      anonymous 

      5 years ago

      @anonymous: I am SO SORRY for you! Having an MD who is insensitive to their patient's pain is ridiculous! EVERY patient has a right to adequate pain control - tell your MD this; they already know, but it helps when you can spout it right back to them. I am very drug sensistive in the way that what one dosage would work for you would mean I would need double or triple the dosage for it to be effective. Luckily, I have an MD who understands this and doesn't think I am an "addict".

    • profile image

      anonymous 

      5 years ago

      I just had my second endolymphatic shunt surgically implanted for Meniere's tx. Two days after the surgery I had a major episode while at home, alone. It lasted for about three hours. Saw my surgeon today. Going to see if a month of tx with prednisone (what a wonderful drug!!), valium and diuretic. Now I am thinking that this is stupid! I think I need to go to the next level and get this thing out of head - ha ha. I am 50 and have had this disease for three years. I'm on social security disability now - driving prvileges are restricted; I could go on! I saw my surgeon today for my post-op visit and I am going to call him on Monday and tell him I've decided to take the plunge and not put this off any longer. Your blog gave me the final push I needed. Thanks!

    • profile image

      anonymous 

      6 years ago

      I have gotten to the point I can't tell the Vertigo from the MM, as I have both. No luck with traditional meds, or the inner/middle ear perfusion which was a 3 day torture deal, which left me with less hearing in my left ear which had 2 laser holes with out enough knock out drug, and then the Gent which left 2 twin trails of fire across my skull. And the facility offered no pain meds, not even a Tylenol. And chronic pain in my right ear, which I will have to "live' with for the rest of my life.

      Now for a question are a lot of MM suffers drug sensitive? My PCP swears I'm the most drug sensitive patient he's ever seen.

    • profile image

      anonymous 

      6 years ago

      What they do is torture you, I've had 1 treatment and thought I was in some concentration camp in an unclean hospital setting. Nothing works but Valium and going to 'real' natural sea salt not the bleached kind, and Phanagan for the puking. Lemon in water to make it drinkable, soup because it is all that taste ok, rest makes you sick at your stomach. I've had it a year, and that is a year to long. My Vertigo is caused by a pinched nerve in my neck. Old people do not get sudden onset Vertigo, it is either a pinched nerve or mini stroke.

    • profile image

      anonymous 

      6 years ago

      I am so relieved to read this and find a story so close to my own. I think I am reaching stage 2 and finding it really hard to live with and on top of that I feel like doctors don't insert what it's like.the migrane info is interesting I also suffer badly from them but go doesn't think they r conneted..but I do I also would get neck pain sometimes... I feel so down and frustrated they make me feel like it's all in my head... I live in n.ireland maybe we r behind with info....just glad to hear your story is like me

      .so there's hope for me yet

    • abarth76 lm profile image

      abarth76 lm 

      6 years ago

      This is a very informative lens about your condition. I have a neurological condition, I build a lens about my experiences like you, come and have a look at my lens.

      I think sharing information about conditions like yours is important in order to educate others who may also suffer.

      Well done.

    • Davidfstillwagon profile imageAUTHOR

      Davidfstillwagon 

      6 years ago

      thanks Sara, It sounds like you really have been through a lot with Meniere's disease and it hasn't gotten you down.

      thanks for the comment

    • profile image

      anonymous 

      6 years ago

      I am 54 years old and had my first episode at 20 years old which was severe and lasted for 3 days. After that it was about every 2 years. The attacks would always be when I first woke up in the morning and would last a day. This went on until I was 42 years old. While at work one day I developed very loud tinnutis that sound like a train whistle. This lsted for 3 months and went away as suddenly as it started. I really thought I was going crazy. At this point the vertigo started toincrease to every 6 months to a year and still only lasted a day. 3years ago I was getting my hair washed at the beauty shop. The vertigo started and didn't stop for 6 months. During this time I developed horrible tinnutis that sounded like a jack hammer. At times it was so loud that I felt like my whole body was vibrating. I had fullness in both ears and periods of complete deafness in my left ear. This was very different than what I had experienced before. I learned about bppv from my ENT and learned the different head manuevers that help this. It eventually got better but I was left with constant ringing or hissing and frquent fullness. I went 3 years without a major episode, but have had 2 in the last 4 weeks. Both of these took me 2 days to get over. The one thing about all of my episodes is that they have always been in the spring or fall. Never in the summer or winter. I've lead a good life, have a wonderful husband, 2 children and 2 grandchildren. I am hear to tell you that the last thing anyone with this condition should do is panic or let it get you down. It only makes it worse. When I had the worst episode 3 years ago and it didn't pass quickly I got very depressed. Fortunately, I recognized this and fought my way out of it. Exercise, eat healthy, keep your weight in a healthy range and do not stress about the small things. All of these things help.

    • profile image

      RuralFloridaLiving 

      6 years ago

      I have a good friend who was just diagnosed with this disease in the last two weeks. I was surprised to see your lens because I had never heard of this before. Very good information here. Thanks for sharing. P.S. Besides a low sodium diet, my friend has been taken off any food with nitrates. Over the weekend my friend tried a taste of an appetizer with a bit of sausage in it and immediately had an attack of dizziness. The doctor smiled and said "no nitrates, no cheating".

    • profile image

      anonymous 

      6 years ago

      @Davidfstillwagon: Hey, no more diziness since I've been doing the repositioning maneuver! It's been over a month now. I know it could still come back, but I really don't think it wil. I hope some other people have success with this. I was having attacks many times a week and didn't know what I was going to do. Thank you David.

    • Davidfstillwagon profile imageAUTHOR

      Davidfstillwagon 

      6 years ago

      @anonymous: I hope that it is just the vertigo and not meniere's disease. Vertigo can be treated successfully with the canalith repositioning maneuver ( for most folks)

      Good Luck

    • profile image

      anonymous 

      6 years ago

      I am from Asia. I had severe Meniere's Disease and it was real hell for me. I had vertigo attacks almost every other day. On days when I did not have attacks, I would have a strange feelings of disorientation. I consulted several ENT specialists and they were no help. I was desperate. I finally resorted to Traditional Chinese Medicine (TCM). I feel very much better now. It has been several months since my last attack and I don't have that strange feeling of disorientation anymore. I attribute my wellness to 5 treatments:

      1. A Chinese herbal medicine that helps to improve my blood circulation.

      2. Acupuncture which my Chinese physician does on my ears, neck and head.

      3. Regular exercise - 30 minutes brisk walking daily - helps my blood circulation

      4. A drug known as Betaserc ( http://en.wikipedia.org/wiki/Betaserc ) that works on my inner ear.

      5. Vitamin B12 for my nerves

      I believe the 3 factors that have helped me are good blood circulation (Chinese herbal medicine and exercise), nerve treatments (acupuncture and B12) and ear medication (Betaserc).

    • profile image

      anonymous 

      6 years ago

      My experiences with this continue to go through changes. I finally went to my GP about this. He thinks it might just be "benign paroxysmal positioning vertigo" and has me doing the "canalith repositioning maneuver". I think it might be helping!! Try looking into this I think.

    • profile image

      anonymous 

      6 years ago

      Thank you for your story. I just had my first gentamycin treatment today. I see my doctor at the House Ear Clinic again in four weeks and I am hopeful this works for me. I have had vertigo for eight years with subsequent severe hearing loss in my right ear. I was misdiagnosed back then. My vertigo changed five months ago from the perception of the room spinning to an abrupt up and down sensation that had me grasping anything to hold on to not fall. Needless to say when it happened while I was driving on the freeway I went straight to the doctor for testing. It took five months for my HMO to authorize all the different specialists and tests but they did approve the treatment. I feel wiped out now but optimistic that a labyrinthectomy will not be in my future.

    • TheFalconPress profile image

      The Falcon Press 

      6 years ago from Los Angeles, California

      I have a cousin who suffers from MM. He's an attorney (but also a musician for the past 40 years, which is eye-opening considering your article). I wonder how rare MM actually is. From the number of comments below, this MM obviously affects a lot of people. My heart goes out to you all. Thanks for sharing this lens.

    • profile image

      anonymous 

      6 years ago

      Oh my gosh, I hope they find a cure for this "disease" soon! I think I've heard of it before, but I never knew what it was. Thank you for sharing your story! *Blessed*

    • profile image

      anonymous 

      6 years ago

      Isn't this just terrible. I ride a motorcycle, but I'm afraid I'd better get rid of it. I was self-employed, so I couold lay down at work whenever I needed to. But I went out of business and now need a job. On top of being old for being hired (61), I've got this problem with MM. Do I tell the new employer about it before I'm hired, or wait to be let go because I can't work. I'd sure like Social Security disability, but it sounds hard to get. First of all, you need to see plenty of Drs. and I don't have the right insurance to pay for all those visits.

      I'm in an odd phase now.....I don't have really bad attacks often, but I do get mildly dizzy a lot. Good luck everybody. This is awful!!

      Oh, you might look into John's Regimen. I did it and got better. But I thought it was probably a waste of time and money, so I quit. Then my attacks started coming back, so I'm back on that plan and just hope it works. You might search, "John of Ohio".

    • profile image

      anonymous 

      6 years ago

      I have suffered severe menieres symptoms for 3 yrs. That is until I found a cocktail of supplements that leave me functioning again. I take 2 pb8 probiotics, 2 100mg Now brand Beta Glucans and 1/4 of a 1000mg tablet of Lysine.I take them all in the evening. I am abke to do things I never could before. I want to share that I just reunited with my spouse after a few years of separation. We have been back together for a few months. 2 days ago he started having the same exact symptoms I had when my nightmare started. Fullness in right ear and dizzyness to the point of having to stay seated at work and sleeping the day away when he came home. Is it possible this thing could be contagious? I surely hope not

    • profile image

      anonymous 

      6 years ago

      hello my name is theresa and a menieres sufferer. i get severe attacks that last omonthly. i get 3 may be 4 ok days out of a month. very depressing and has distroyed my life full stop. if only there was a cure. bottom line i think it cums and goes of its own accord no medication helped me whatsoever $6.

    • profile image

      anonymous 

      6 years ago

      IV'E HAD MENIERS FOR 20 YRS WITH LAPSES OF AS MUCH AS 2 YRS. IT ALWAYS RETURNED. I ALSO HAVE THE CONSTANT RINGING. I HAVE LEARNED TO LIVE WITH IT AND I DON'T PANIC ANYMORE BUT WISH THERE WAS A CURE

    • profile image

      anonymous 

      6 years ago

      I,ve had mine since 1992, when myself and my partner tried to arrest 5 in an apartment. I got clocked(with a wall clock) from behind and my meniers started within the month. After 18 years I got workers comp to accept. They are still fighting mad'. I have both ears. Strangely I have found relief from airline flying or being driven through mountains with a lot of altitude changes. All I use are diaretics and during my bad weeks, never leave the house and keep my pail handy so wife doesn,t get mad about not making a sink or toilet.

    • profile image

      anonymous 

      6 years ago

      Thank you for writing this blog. I hope you are better now. I've found it very helpful for my balance and inner ear problems.

    • profile image

      anonymous 

      6 years ago

      @anonymous: I have suffered from Meniere's ever since I was 18(33 now) and the only true relief I ever had was when I was taking USANA. There is a system for this condition they recommend and I will tell it to you if interested but it costs about $150 a mo for the supplements and at this time I cannot afford it soooo sure enough, my symptoms are back.

    • profile image

      anonymous 

      6 years ago

      Wow, I'm not advocate for self diagnosis but I finally got fed up with not knowing what's going on. When I was 19, almost 30 years ago I had my first attack. The doctor sent me to an EN&T specialist who ran a battery of test including inserting a warm water balloon into my ears. The test were inconclusive and I had a general diagnosis of vertigo and was given antivert.

      My spells are intermittent, causes or predictors unknown. I can go days, months and even years without 1, then out of the blue I'm"dizzy"... No I can say I have MM.

    • profile image

      anonymous 

      6 years ago

      Great article. I was looking for anything that relieves the constant fullness/ringing in the ears. I have had Meniere's for over 20 years now and give up that it will ever go away. But seems after a cold or changes in the weather....this makes my head feel so "groggy" with the fullness and ringing and headaches. I'd like to know if anyone has found anything to alleviate this. It's a very debilitating feeling. I do take a daily diuretic and have the valium for when I need it but these do not seem to help get rid of this horrible feeling in my head. I would just like to feel "normal" for a few days.

    • profile image

      anonymous 

      6 years ago

      Great article. I was looking for anything that relieves the constant fullness/ringing in the ears. I have had Meniere's for over 20 years now and give up that it will ever go away. But seems after a cold or changes in the weather....this makes my head feel so "groggy" with the fullness and ringing and headaches. I'd like to know if anyone has found anything to alleviate this. It's a very debilitating feeling. I do take a daily diuretic and have the valium for when I need it but these do not seem to help get rid of this horrible feeling in my head. I would just like to feel "normal" for a few days.

    • profile image

      anonymous 

      6 years ago

      This is a great article. I am 26 and have had meneres since I was 22 only being diagnosed last year. It really is a life changing disorder and since it is little known people are even more ignorant. No one can understand why a girl so young with no visible disability is home bound most of the time. I had to quit my budding

      career and live day by day as if my life is Russian roulette. I am desperate for a cure and if not that some relief so I can live my life again. The menieres had also given me awful anxiety and agoraphobia. I feel like our pain is always forgotten by the medical field!

    • profile image

      anonymous 

      6 years ago

      @anonymous: I have not had one episode since the surgery in 2010. The first few days were tough for me because everything was tilted [in my vision] but my brain corrected that rather quickly. My Mom didn't have the virtical tilt after her surgery [which was just in January 2012]. The reason I am Meniere's Free now is because when the faulty balance nerve was cut there is not a bad signal going to my brain to cause confusion. The surgeon was fantastic at explaining WHY and HOW this all works. Fascinating actually, how intricately we are made. If you can afford it, do it. You'll get your life back:) I don't know why I waited so long. I wish I had done it sooner!

    • profile image

      anonymous 

      6 years ago

      I appreciate all of your information. I would like to add that I have found that taking Barley grass pill supplements have helped my Meniere's.

    • profile image

      anonymous 

      6 years ago

      @anonymous: Gail, Did you have any of the symptoms for a short period of time after the surgery? I am just wondering what the time period was before you knew that you were vertigo free.

    • profile image

      anonymous 

      6 years ago

      @anonymous: Hi Andrea, let me encourage you today. I got Meniere's at age 31 [I'm 48 now] and I no longer have the disease because I elected to have Laby surgery [cutting the equal librium nerve in the affected ear]. I freedom I feel is GREAT knowing that I will never have an attack again. I live in California and Dr McKennan at Sacramento Ear Nose & Throat [sacent.com] does these surgeries everyday. My mother also had Meniere's until Dr McKennan performed her surgery [yes, it is hereditary].

      Regarding your spine & shoulder question: I doubt that there is a connection from the disease BUT it may be caused by the way you carry yourself because of balance issues. I do not hold the phone with my shoulder [hands free] to avoid neck & shoulder muscle ache.

    • profile image

      anonymous 

      6 years ago

      Reading these stories reinforce the fact that something needs to be available to help people live a normal life. Meriere's is very debilitating and scary at the same time. I went from November to April without any serious episodes and then two weeks ago it hit again. I have two bad episodes and many smaller ones. I take meclizine, but that makes me very drowsy and I am not sure that it does anything at all. I also take a diuretic and sometimes I think that is just psychological also. A friend of mine had the surgery and had the shunt put into place to relieve the pressure and fluid buildup; but he has had several attacks since then. The doctor told him that this would happen for a few months until his body acclimates to the shunt. Good luck to everyone that has this and let's just hope that someone comes up with something soon to help us.

    • profile image

      anonymous 

      6 years ago

      Hi,

      It gives me hope to know that I am not alone in this. I am 35, was diagnosed with Menieres about a year ago, a year after I had my son and it seemed to stem from a really bad chest cold which I didn't get treated for.I have been coming to terms with this illness now for awhile and it really is something you have to learn to manage and cope with.Its terrifying and like being on an emotional rollercoaster. My attacks usually happen at home and then the next few days are full of aches and pains, and a foggy brain. I have had a heavy feeling in my eye sometimes and now have read today that others feel that too. I get this aching pain in my right upper shoulder and into my arm, which I now think is related to the Menieres as this is my weak affected side. As I said most of my attacks have been at home but yesterday whilst out shopping in a busy shopping centre I felt one coming on, it was very scary. I didn't have a full blown attack. I somehow managed to keep it together , and I got home safely. I believe stress, tiredness, chest complaints all lead to my attacks and have done a reiki course and adminster some self healing reiki to help calm the beast! I am also thinking now about breathing and how to explore this to help manage the illness. I feel very emotional writing this as it is frightening not knowing if it will get worse for me but I really want to educate myself on this illness and find a way to help manage it. I feel positive and optimistic that one day I will be free of this. I have a constant whooshing sound in my ear but I have to come to accept that as part of me. I don't wear the hearing aid they gave me, maybe I will need it one day.Recently I went to a chiropractor for my back pain and she says the curvature in my spine causes the muscular skeletal pain but I wonder if this has any connection to Menieres? It is reassuring to know that I can relate to others and hopefully help those close to me understand this illness. I think we must all remember there is a quiet and silent place within us all where our physical weaknesses are not master of us and we must learn to tap into that place regularly to overcome this dreadful disease. Don't give up hope!!

    • profile image

      anonymous 

      6 years ago

      I am now 36 and have suffered from menieres disease since i was 21! I have had every medecine known to my ent consultant, nothing would work for me. In the beginning i was having 3-4 attacks per week, i would have no warning suddenly i would fall down and vomit everywhere i could not focus on anything and had to crawl around on my hands and knees, these attacks would last up to 12 hrs with constant vomiting and diahorea.

      Shortly before i got married i had surgery to insert a grommit into my right ear, this ear has only 40% hearing left and my hearing in the other ear is affected too.

      This grommit was like a miracle for me, since then i have had 8 rounds of surgery to have new ones replaced every time they fall out. Unfortunately i have started to have attacks again now and am currently on day 10 of my attack, i have never ever had an attack for this long thankfully i am not being sick, i am managing to work but not drive!! not funny with young children.

    • profile image

      anonymous 

      6 years ago

      Update. I entered a long post in December. I have been taking bio-identical hormones since January and remain episode-free. I have even had a BLT, pork Bar-b-Q and a piece of pizza (not all in one day!).

      I am sure it is not a trigger for everyone, but I know hormones are one trigger for my episodes.

      Very best wishes to all sufferers.

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