Balanced Attack on Meniere’s Disease
Meniere's Disease

UW surgeons perform the first implant procedure on a Yakima man.

Photo by Clare McLean / UW Medicine

University of Washington surgeons in October performed the world’s first surgical procedure to implant a device that could give hope to millions of people suffering from Ménière’s disease—an insidious, mysterious disorder that causes vertigo, hearing loss, ringing in the ear and a feeling of pressure in the ear.

Named for Prosper Ménière, a French physician who in 1861 published his theory that symptoms of the disease could be traced to inner-ear problems, the affliction has no known cause, and no cure. It affects approximately one of out every 1,000 people, or less than 1 percent of the U.S. population.

vestibular implant

The UW’s new device is based on a cochlear implant.

Photo courtesy Cochlear Ltd.
Without a cure, treatments have been aimed at managing symptoms. Lifestyle and diet modifications —eliminating salt from the diet, avoiding alcohol and caffeine, stopping smoking, limiting stress—have provided some relief.

So have medications, middle-ear injections and hearing aids. Surgical procedures were a last resort because they could fix some problems with substantial cost to the patient. That’s why the surgery, performed by a UW team led by Dr. Jay Rubinstein, holds such promise.

The UW device, which was implanted into a Yakima man, is essentially a cochlear implant with new electrodes and software. It is being tested in a 10-person surgical trial.

The device represents more than four years of work by Rubinstein and Dr. James Phillips, both professors of Otolaryngology-Head and Neck Surgery in the UW School of Medicine. They worked with Drs. Steven Bierer, Albert Fuchs, Chris Kaneko, Leo Long and Kaibao Nie, UW specialists in signal processing, brainstem physiology and vestibular neural coding.

“What we’re proposing here is a potentially safer and more effective therapy than exists now,” says Rubinstein, who holds a Ph.D. in bioengineering and is director of the UW’s Virginia Merrill Bloedel Hearing Research Center.

Ménière’s occurs mostly in people between the ages of 30 and 50, but it can strike anyone at any time. Rubinstein has seen it develop in a child of 6 and a man of 86.

The disease is so maddening because it can affect balance and hearing with varying intensity and frequency. Its episodic vertigo—lasting up to 20 minutes per episode—is thought to stem from the rupture of an inner-ear membrane. That can cause endolymphatic fluid to leak out of the vestibular system, causing havoc to the brain’s perception of balance.

To stave off nausea, people must lie still for hours while the membrane repairs itself and equilibrium can be restored, says Phillips, director of the UW Dizziness and Balance Center.

Because the attacks come with little warning, a diagnosis of Ménière’s can force people to change careers and make other drastic adjustments, such as giving up driving.

Many patients do respond to first-line treatments—medications and changes in diet and activity. But when these therapies fail to reduce the rate of attacks, surgery is often an effective option but is often destructive in nature. In essence, a patient sacrifices function in the affected ear to halt the vertigo—akin to a pilot who shuts down an erratic engine during flight. Forever after, a person’s balance, and often, hearing rely on the function of just one ear.

With this new device, Rubinstein and Phillips are aiming to restore a patient’s balance during attacks while leaving natural hearing and residual balance function intact.

This is how it works: A patient wears a processor behind the affected ear, and activates it as an attack starts. The processor wirelessly signals the device under the skin, which transmits electrical impulses through three wires inserted into the canals of the inner ear’s bony labyrinth.

“It’s an override,” Phillips says. “It doesn’t change what is happening in the ear, but it may eliminate the symptoms while replacing the function of that ear until it recovers.”

A grant from the National Institutes of Health funded the development of the device and its testing. The U.S. Food and Drug Administration approved the device in June. A grant from the Coulter Foundation is helping cover the costs of the human trials, which could help UW researchers see if the device could help millions of people who are affected with common balance disorders.

By basing their invention on cochlear implants, whose design and surgical implantation were already FDA-approved, Phillips and Rubinstein were able to leapfrog scientists at other institutions who had begun devising prototypes years ago.

“If you started from scratch,” says Rubinstein, “in a circumstance like this, where no one has ever treated a vestibular disorder with a device, it would probably take 10 years to develop such a device.”

A successful human trial could lead the implant to becoming the first-choice surgical intervention for Ménière’s, Phillips says, and spark collaboration with other researchers studying more widespread balance disorders.

The first patient was Gene Pugnetti, 56, of Yakima. He has unilateral Ménière’s disease and has been a patient of Rubinstein’s for about two years.

Cochlear Ltd. of Lane Cove, Australia, is manufacturing the 10 devices for the surgical trial.

72 Responses to Balanced Attack on Meniere’s Disease

  1. Stephen Dorner says:

    My wife has suffered from bilatteral meniere’s disease for the last 15 years and is at the end of her rope. She has tried almost every treatement except gent and nerve sectoin because both ears are effected. Can she be evaluated to be in the study. I am an engineer and this is the first treatment plan that makes sense to me.

    • Kathleen Pearce says:

      Bilateral oh my Stephan, I hope she can have this implant. I just commented on my father as well. He just HATES it and I’m worried it could increase depression. He’s too active of a person to have such a set back.

      Sending my good Mojo for your wife.

      Kathy

      • Martha lee says:

        My husband just had a cobular implant which has left him with dizziness can he be helped.

      • Theresa Ong says:

        Hi,

        I’ve had bilateral Meniere’s disease for many years. I was misdiagnosed for a very long time. I belong to a wonderful support group on Face Book for this condition. I wasn’t able to drive for almost a year. I can now drive during the day. Night driving is out. The article didn’t mention the visual distortions that come with MD. It also didn’t mention the hypersensitivity to bright and flashing lights as well as hypercussis-hypersensitivity to loud noises. MD is horrible in that it is so unpredictable. I sure hope this implant can also help those of us who are bilateral.

        Theresa

        • Jane says:

          I have MD….for three years now & I have had vision problems….went & got my eyes checked & I have Fuch disease & the symptom you just said are the symptoms for fuch disease.

  2. Kathleen Pearce says:

    My father, 71, has this problem and he is a person who enjoys outdoor work.

    Meniere’s has affected the quality of his life and sometimes daily.

    I hate to think this may get worse. I hope it would be possible for him to have such a device planted.

    Like the engineer stated, it makes great sense to me as well.

    Kathy
    Portland, Oregon

  3. Connie Walsh says:

    My 39 year old husband has tried it all for his bilateral Meniers. (Sac decomp, gentamyacin injections and eventually labrynthectomy)sorry for selling

    Now with a BAHA to help him hear again, after the labrynthectomy, his symptoms are worse! He uses a cane, can not ride in a car without sickness, and to top it off the vertigo NEVER goes away? Is this device hopeful for someone who has nothing in that ear that functions?? Please help. he is too young to be in a wheelchair.

    Thank you in advance for any information!

    Connie Walsh
    Richmond, VA

    • Connie Walsh says:

      I meant spelling!

    • Mary Pletcher says:

      Thank you Connie, finally someone is suffering exactly like me
      I have total hearing lose from an ear infection on left side. A friend told my mom about the BAHA. I was a good canidate for it and had one put in. About 3 weeks later I got vertigo so bad. I was a truck driver. I got the same shots and had the labrynthectomy. After healing I tried to go back to work but it just stressed me so bad I had to quit. I to have to use a cane when days are real bad. It never goes away completely. I have been found totally disabled and my life as I knew it is gone. I’m just glad to see I’m not alone. I also now have headaches everyday, but can live with them. I hope they find away to help us. I am 58 and not ready to do nothing.

  4. Deena Calder says:

    My mom has suffered from dizziness, ringing in the ears, and all of the above. However doctors have told her she does not have vertigo or meniere’s, BUT she has been dizzy, nauseas and has had ringing in her ears for 2 1/2 yrs with NO RELIEFE. She has it 24/7.She is a prisioner in her own head, can not drive and some days can not even get off the couch for more than to use the bathroom. PLEASE if anyone has any information to help, let us know. tdcalder@yahoo.com

    • sarrah groves says:

      seriously! keep going to other ent doc’s one that specialize in the inner ear; not just a reg ent.

      take it from me! it took years to get diagnoised correctly. don’t give up!

  5. Syed Zafar says:

    Ms. Deena

    You should look into steroids if her condition is not Menieres.

  6. Kathleen says:

    The problem with bilateral Meniere’s is that unless both ears are treated, the symptoms can not be alleviated because one ear will continue to reek havoc on the individual. Treatment of both ears means the possibility of being completely deaf, along with the loss of balance. I have been diagnosed with bilateral Meniere’s and every specialist I have seen is attempting to alleviate my symptoms without surgery. If I had unilateral Meniere’s I would definitely consider the surgery.

    I also wanted to comment that the article states the attacks can last “up to 20 minutes”; however the attacks typically last a minimum of 20 minutes and can easily last 6 or more hours for the majority of people with unilateral or bilateral Meniere’s.

    Good luck everyone with whatever you and your Dr. decide!

    • Sharon Uren says:

      Hi Kathleen,

      I agree with your comment:

      “I also wanted to comment that the article states the attacks can last “up to 20 minutes”; however the attacks typically last a minimum of 20 minutes and can easily last 6 or more hours for the majority of people with unilateral or bilateral Meniere’s.”

      … and they can go on and on for days, weeks, months with hardly a break. I find it annoying when I read comments in articles about Meniere’s where it sounds like they just don’t know much about it and treat it so lightly. We could be so lucky to have a 20 minute attack. Only in our dreams!

      Take care Kathleen and stay well.
      Sharon.

      • sarrah groves says:

        sharron thanks for your comment. my initial attack last 11 days and i thought i would die! typically now they are less than 3 days. i’m bilateral so maybe that makes a difference. but i’ve had meniere’s since 2001 and i’ve never had a 20 min attack— i wish!

    • Gail says:

      Couple hours, bull, it can be days, had the inner ear profusion, made the right ear worse, constant head pain where my head and ear feel like they will explode, doc found blood in right ear after last attack triggered by the super whammy flu shot for seniors some idiot at the CDC thinks old people need over the regular one for the under 50, and I put no foreign objects in my ears. ringing, roaring over a decade now, so loud it drowns out normal level music, an keeps me awake half the night. meds don’t work except for puking.

    • Gail Olson says:

      I am glad the 20 minute episode was corrected. My vertigo spells last up to 10 hours, 15 min being minimum. Have menieres 26 years & Dr’s do not want to do invasive, but nothing else has helped. Shunt or gentomycin been suggested. I dont know if I am unilatteral, or bilatteral. We need something concrete. I have had months, a year or so, with minimal attacks, then it returns. already deaf in one ear, & very little left in left ear. I would do the trial & have this done. I had a relapse 5 months ago & its not letting up. Very horrible, scary disease. I want relief NOW & would have this done in a NY minute.I am 58 & cant wait for another ease up of symptoms. It has taken a huge toll on me.

      • Dan Johnson says:

        I am happy not to be alone in this world with Menieres. It is a very lonely place to be when you think the world is coming to an end. I’ve got to the point of taking one day at a time and being thankful for the good ones!! I believe MD gives each one of us so much self doubt that at times, we worry over nothing that we have control over anyway. Think “positive” and good luck!

        • Terri says:

          hello, it is nice to hear from others with MD. I have tried to find some support groups in my city but have had no luck. I was diagnosed with bilateral MD about 4 years ago. I can go weeks with no symptoms and then bam, it hits hard for a week or so. I am a mother of 4 in my 40′s (the youngest 3) and have been looking forward to possibly attending college. Lately my episodes have been many and I wonder if there is any use of returning to school. Im afraid this damn MD will get in the way, since I never know when It will show up and how long it will stay. Sometimes its so depressing!

          • Angie says:

            Terri I know how you feel I’m also bilateral I was originally diagnosed in 2003. I just lost my job of 15 years due to MD and its hard to plan anything about your future. I’m doing one day at a time right now and glad for the small things. Try not to get to down there’s always tomorrow. Wishing you well!!!

      • Gayle says:

        Hi Gail
        I’ve had 1 ear Meniers for 30 years,docs in Australia still know very little about it took years to diognose me they still question a lot of my knowledge that I have experienced.my Vertigo is now dizziness all the time,fullness and noise(tinnitus) stops me sleeping,deafness is not helped by hearing aid.i get people thinking I’m over exaggerating ,I’ve had 2 months of vertigo non stop,now going on anti depressionts.they will not care about finding a cure because its not life threatening just life destroying.my life is he’ll and no support groups any where in my state.sorry I am so down

  7. Kathleen says:

    ….ok I goofed, but I’m so glad I just re-read article and WOW this really is something!

    “With this new device, Rubinstein and Phillips are aiming to restore a patient’s balance during attacks while leaving natural hearing and residual balance function intact.”

    THERE IS HOPE FOR US! :-)

  8. David Shelborne says:

    My wife and I have moved from “bush’ Alaska to the city to care for our son who is 39 years old and has bilateral Meniere’s syndrome. We have been in Anchorage for over 6 months (since his attack which has never let up)and his world spins 24/7. He has vomited so much that he now has grade 1 distal esophagitis. He was so sick that the ENT doctor started the steroid injections and the diuretics and the same time….. to no avail. My wife and I have been doing a lot of research and we are deciding to discontinue the Potassium and Diamox since they do not seem to be working and try B-6 and lots of anti-inflammatory supplements, lots of water, and a diet restricted to avoid food allergies which he was tested for. We are thinking that this will help reduce inflammation and hopefully eliminate the dizziness. Most everything we have read on Meniere’s relates to “attacks”. Our son has had one attack that never goes away. His doctor has recommended “surgical correction” which will be shunts in both ears. From what we have read this procedure has about a 60% success rate i.e. the tubes can become loose and they can become plugged up. Also the fix is not long term. All the prescriptions and suppliments have failed to stop the dizziness and the vomiting.
    At this point we are hoping and praying that this new trial will prove to offer relief. We have not seen any follow-up on the implant devices which took place over a year ago. Maybe we are not looking in the right place. It is heart breaking for a mother and father to see their son in tears Christmas day after 6 months with no hope in sight and a daughter who sees her dad so sick she thinks he is dying. I sure hope the ten person trial proves to be effective. If anyone has any information on this my email is dshelborne@gmail.com
    Thank you and best wishes & success to all Meniere’s patients everywhere in 2012
    David Shelborne – Alaska

    • paula says:

      Hi
      Im really sorry to hear about your son,I have had menieres for 25yrs,but not as bad as being sick all the time.Have you tried an anti-depressant tablet to try to calm the symptoms down.Im on prozac to help me plus if i have bad vertigo i take a travel tablet cinnarizine (i think thats how you spell it)it seems that anti-hastimine (allergy tablets may help too).IS HE ALLERGIC TO SOMETHING UP THERE WHERE YOU LIVE?that can make your head spin 24/7.pollen,dust,pet hair etc.

      • David Shelborne says:

        Hi Paul and Karen
        Thank you for your kind words and suggestions.
        We have tried all the best meds… the ones for cancer patients who are on chemo for nausea and quite a few of the anti-depressants. Nothing really works. We are going to a Dr. today who treat depression without meds and is familiar with the many functions of the brain and the whole body. He is very experienced in Chinese medicines. We have read that the stomach is the “second” brain and a lot of it really makes sense. Right now depression is a major, major factor. Best wishes to you both for a better year in 2012.
        Dave

    • Tamme Crater says:

      Talk to someone regarding the endolymphatic shunt decompression surgery. Dr. Leonetti at Loyola Medical Center, Illinois.

    • Sharon Uren says:

      Dear Dave,

      I feel so much for your son as I know what he’s going through. I think you are wonderful for helping him too. Have you considered a gluten free diet? Here’s a link if you’d like to read more.
      http://www.glutenfreesociety.org/gluten-free-society-blog/gluten-sensitivity-and-vertigomenieres-disea

      It’s an awful “Beast” but change of diet can be helpful because it’s certainly helped me no end and there were days and weeks that I thought I was going to die, crawling around on all fours. Hang in there and please keep us updated about your son and tell him that all us Dizzy people “Down Under” are thinking about him.

      There are a number of Meniere’s Groups on Facebook and if anyone needs a link to them, please let me know and I will give you the links.

      Hugs to all of you.
      Sharon

      • Margery says:

        I have had Meniere’s for about 10 years, unilateral but very loud tinnitus and profound loss of hearing. I’ve done diuetics, diet and middle ear shots. Nothing has made a change but luckily the vertigo stopped after a couple of years. Balance still not as before but loss of hearing is very bad. Have put off getting hearing aid. Would love the link to the facebook group.

        Best of luck and health to all here and let’s hope and work toward a cure.

        Margery

      • H Hillis says:

        Would love to have link to Facebook. I have had Ménière’s disease for 26 years, I know the feeling of having to crawl around on the floor!

    • Diane says:

      David: I just read the post about your son from 2 years ago and was heartbroken when I finished it. Although I was formally diagnosed with MD in 2002 on the left side, I like your son also had a “never ending” initial attack in 2000 that lasted for 6 months. Following 3 months of debilitating testing I was recommended for the endolymphatic shunt decompression surgery. I was given all the pros and cons of the surgery and decided to have it, because I would have tried anything. I had the surgery and quite frankly found the recovery period gruesome as it resulted in another horrible never-ending 2 month long attack. However, things got a lot better after that and I actually regained a tolerable quality of life, that I thought was gone forever. I had the surgery at NY Eye & Ear Hospital, Dr. Chris Linstrom – and at times, the 80% relief rate that he estimated was often increased to 95% when combined with the meds he prescribed and careful dietary restrictions. The maximum 10-year period of relief did occur but my MD episodes have not returned to the level of daily severity they were pre-surgery. I Pray your son has in fact found a form of treatment that has provided him with some relief. Hope all is well. God Bless

  9. Karen r says:

    I teared up reading this. I have bilateral meniere’s and wear two hearing
    Aids. Is there a way I could follow this study? I wish I could volunteer! :-)

  10. rhonda says:

    So sorry to hear everyone’s stories. I am 30. Never had balance issues at all. I had a cochlear implant Dec 1, 2011. Have been suffering with balance problems since. Drs feel my vestibular system is just having to heal itself from surgery.
    I saw this was about CIs and meniere’s disease..and wanted to send you all a website I am a part of. Some people in this forum have had meniere’s disease and the CI helped them tremendously!! Just want you all to have some support…so here it is. :)
    http://WWW.hearingjourney.com

    Good luck to each of you and hour family members!
    Rhonda
    rhondafaye1@yahoo.com

  11. Jennifer H says:

    Hi, this is a very interesting article to read.
    I am 35 years old and have Bilateral Meniere’s, I was diagnosed at the age of five. I am currently Deaf in both ears and I have undergone every medication and surgical procedure possible (except for the Laby).The longest and most debilitating attack I had lasted an entire year. I truly pray there is success and hope in sight with this device for those of us that suffer so greatly with this debilitating disease. I’ve spent my entire life adjusting, adapting and learning to “live” despite it all.

    • David Shelborne says:

      Hi Jennifer,
      Your epic battle gives new meaning to my favorite saying by Plato: “Be kind for everyone is fighting a hard battle”. Yesterday we took our son to begin a new treatment as planned. We were very, very impressed as well as encouraged with the beginning of the treatment. The treatment included a very thorough explanation of the organs in the body and how important it is that they all function as they were designed to. The word “label” was used a lot. We all know what the “symptoms” of the meniere’s syndrome are. At this point I am starting to sway from labeling the illness a disease and am leaning more towards calling what has been diagnosed as Meniere’s Disease as a condition of events within the body that can be corrected by making a series of physical changes to reverse that which has occurred. This is by studying the blood work history, blood and fluid circulation, the health of the organs and body chemistry, viruses, allergies, the positioning of the organs, including the brain and a potential previous whiplash or head injury (no matter how long ago) and a ‘great deal’ of other things that a person with 35 years of medical experience and training at Harvard and Tufts has to offer. Our son’s concentrated treatments will begin in February and I will be happy to share the results with you or anyone that is interested. I am so thankful for the research which has led to the implant device. I would be so much more thankful for any additional research that would lead to a cure while considering all and more of the things I have mentioned earlier. We have done a great deal of research in the six months since the diagnosis and realize we are new at this but we are very hopeful on being able to relieve what has been six months of 24/7 spinning and nausea through a new treatment plan. This is a treatment plan that has healed or reversed conditions that were worse than my son. At this point we are going from dispair to very hopeful and hope to share some positive results.
      Dave

      • Ella says:

        Hi Dave, I’ve been following your words about your son. So sorry he is in such despair. I really hope the new treatment he’s starting in Feb. gives him some relief and really helps him. Please keep us informed and let us know how it goes. Please join Menier’s disease on facebook because I know there are many people on there with MD that would like to know about the treatments. I’ve had MD for 2 years and would love to hear anything positive. Good luck to you and your son-be well, Ella

        • Dave says:

          Hi Ella….I will keep you posted on the treatment. Most likely it will be towards the end of February as the treatments progress. I am not a member of facebook but will check into learning how to join and post. Thanks
          Dave

      • Jeff Pieczynski says:

        Hi Dave,
        I just came across this site while doing some Meniere’s research, so I’m a little late. I did not see anything posted after January, so I was wondering how the treatment was going for your son?

      • Toby says:

        HI Dave please share your outcome, good or bad. with us

  12. Tina says:

    Before deciding on a surgical procedure, please look at the Brainport site. I suffer from bilateral menieres and I’m hoping to get this device within the next year. Tina

  13. Tim Harrison says:

    This article looks promising. I am a menieres sufferer and have benefited greatly by using an antiviral medication. (No vertigo attacks for over a year) Please google Dr. R. Gacek. He has published some very convincing research into menieres and the herpes simplex virus. He belived that menieres is sometimes at least caused by the virus in the ear. (Hence the use of an antiviral- such as Aciclovir – to treat it). Please consider this before any surgical interventions.

  14. Carrol says:

    I have a son Matthew who is 7 1/2 years old and was diagnosed by Dr. Rubenstein with Meniere’s. I hope and pray that this is a success! We are still unsure if it will affect both of Matthew’s ears-prayers that it does not please. This is so scary to me especially after reading all of your postings! I need hope. Thank God Matthew has only had one bad episode of vertigo-every 10 minutes lasting 2 hours. I will keep all of you in my thoughts and prayers. David Shelborne please keep me posted on your findings.

    • Dave says:

      Will do Carol… I need to research my email and check on a finding that I made which our ENT doctor’s office copied and started handing out to patients. It concerned sugar intake and the negative aspect of this consumption for Meniere’s symptoms. When I find it I will post it for you.
      Dave

    • Sharon Uren says:

      Oh Carol. How awful! My heart goes out to your son and to you. It must be so terribly frightening for a young child. It’s bad enough for us adults and oldies to cope with but I couldn’t imagine what it must be like for a child. Hugs to you both.

      Regards
      Sharon

  15. Jeff Pieczynski says:

    Many of the comments are very interesting.

  16. Shelby Homon says:

    I’m 20 years old with bilateral Meniere’s Disease. I can’t undergo any of the surgeries available because of my age. But my symptoms are so bad that its difficult to live a normal life. It would be amazing if this became the top treatment for Meniere’s and I hope it becomes available soon because I’d love to not have to worry so much.

  17. Lee conway says:

    Hey My names lee conway from england uk i have had menieres disease for 4 years i know the suffering it brings if your not on Facebook set a profile up and serch for our page where all on there we can give you comfort give your advice your not alone.  So yeah go on Facebook if your from the uk search for  menieres disease uk.  Or if your from America search for  living with menieres disease or you could just add both :-) x

  18. Amanda says:

    I have had the disease in both ears since I was 7 and I am now 26. I have tried EVERYTHING. Diet, steroids, migraine treatments, antivirals (both oral and injections) Valium, diuretics, tubes, the meniette, you name it…I can’t drive, I can’t work, I am desperate for something like this to work! It is difficult going through life never having a job or driving a car outside of driver’s ed in high school. My dr. said the next step is shunt surgery…only problem is that I actually know people who have gotten worse after shunt surgery so it is not something I want to risk…I need this to work! It has to work!

    • donna watson says:

      I had endolymphatic shunt decompression surgery in 2002. Seemed to help for a while. Definitely did not make things worse. Of all the surgeries, this one is the least damaging. So I say go for it! What have ya got to lose??? & it could give u relief for a long period of time.

  19. Emma says:

    Hi Amanda, you have tried everything you said you have tried Valium this helps me alot it depends how much you are having for example i have 5 mg at night and 1/2 tablet in the morning it did wonders for me it is an addictive drug iam aware of this but i have no choice nothing else worked i have a normal active life i have been on this medication since 2009 try it everyday you will get better let me know when u do ok….
    good luck…

  20. Sue says:

    My husband was diagnosed with Meniere’s disease a s a young executive in a stressful and high powered job. He worked on aspects of his life like diet, stress etc. Now he is left with hearing loss in one ear and it did not go to the other ear. Today his life is completely changed. He has written his 6th book on Meniere’s disease and is now a bestselling author on Amazon with a relationship we wrote together. We went through Meniere’s together and it was a testing and hard time. Family support from your outside family is important. Talk to family, work, friends , your kids. Let people know about what is going on. Writing was part of his healing process. Meditation, cutting out salt of course. But always he carried the hope that he would get his life back to normal. It is the roughest thing to go through…but keep the faith and hope in recovering a life and you will.

    • Lisa says:

      Hello, Sue,

      I am 56 and my husband is 63. We have been together for 3 years now, and since I first met him his Meniere’s has taken a real turn for the worst. About 6 months ago he underwent testing again, and was told that now his Meniere’s has gone bilateral. He had the steroid shots in both ears, and that didn’t help. He is now miserably dizzy more days that not, and we are both trying to cope with his illness and worsening disability the best we can. He is on the Meniere’s Forum online support group and has been since first being diagnosed about 10 years ago. However, as the spouse of someone with Meniere’s, I am finding that I wish I had someone else in my situation to talk with…both to help my husband and me. Do you know of any such group for spouses of Meniere’s sufferers? Thank you, Lisa H.

  21. Joan says:

    hello everyone, I have recently been diagnosed with (L) menieres disease. I am also an Rn, Unable to work since June. My primary Dr referred me to a specialist in Minneapolis for endolymphatic shunt surgery and I was told i would be back to work in a week. Prior to surgery, I was having episode 3-4 times a week but it was determined to be to risky to continue working at the hospital (OB nurse)until things were more controlled. I had shunt surgery in August, it was awful. Its October now and i am still not back to work, as my episodes are 3-4 times a day now, much more frequent than before and now recently have become just at severe with vomiting etc. I dont know what to do at this point. I take meclizine 4x a day, oxazepam every 12 hours, a fluid pill daily, and phenerghan, and scope patches as needed. I am not getting any better, in fact i feel that the surgery made things much worse.. I am thinking of going on disability…QUESTION: if I get menieres in my other ear, is that a separate disease? this is regarding disability insurance…Any insight or advice would be appreciated…Thanks for listening…..

    • Tiffanie says:

      I just wanted to share that I have had Meniere’s for the past 20 years and am 40. I suffered through years of daily attacks lasting anywhere from seconds to several hours only to wake up from one attack and have another. I was tried on all the medications an ENT would prescribe including diuretics, valium, steroids…often leaving with no less than 5 prescriptions even after expressing that none of it was helping. After researching a bit on my own, I asked my PCP to prescribe an SSRI just to see if it would help. After about 6 weeks, the vertigo attacks ceased. I have been taking a low dose of Celexa for about 10 years and it has saved me. I returned to my ENT and she would not prescribe it as it was not considered an approved treatment for MD or vertigo. So, I stopped going to a specialist and ask my PCP each year to renew my Celexa. Just wanted to put that out there and if anyone wants more info, just let me know.

      • Lerias Faniel says:

        Hi Tiffanie,

        I’d like to know more about this and Ive got far to many questions to communcicate via email. Could you give me a call at 312.882.2278 when you get some time to chat about this.

        Sincerely,

        Lerias Faniel

      • KATHY WALKER says:

        I too have MD, long lasting vertigo w/ vomiting and am on valium from ENT, and specialists. Would love to hear about celexa. Pls call or write ASAP. 615-243-4300.

  22. Erin says:

    I have had many of the symptons of menieres disease since 2010, menieres disease was never talked about when I went to the ER. I just heard about . I could complain but I am blessed. However, being dignosed with menieres disease will be another life time hurdle to over come. I have seziures I take 10 pills per day,so I do not need anymore pills to take. I have an implanted device for seziures and it has worked and gave me my confidence back. Being sick and dizzy continully and have my staff take me to the ER takes away the confidence I had. Does anyone have current information on the implant. changing my diet is not going to happen I don’t eat salt or gluten and I have one maybe two cups of coffee and not on a daily basis, I do not drink soda. I eat organic red meat once a week. I need information, I may be strange to people that I would perfer an implant over the other treatments but, like anyone else I WANT MY LIFE BACK and I have been through the years and yeasr of hassle to get my sezuire (VNS) inplant so I am stronger now.if any one has information please let me know.

  23. dan from Australia says:

    I have suffered from menieres for the last 5 years, i am completely deaf in my affected ear but have been since birth. I personally call it the devil’s disease, i wish there was more research and development around the globe to help cure it. It has taking me to some real dark places in my life. Anyone out there who has a loved one with menieres, please be patient and understanding. This is soooo hard for someone to cope with and even harder for someone to help support and understand what a menieres suffer is going through.

  24. Paula E. says:

    Hi everyone of the Meniere’s Family and extended family, I hope the device will be a success…I had ESD ( Endoly…Sac Decomp…) last December so far it has been ok , I took a big fall 17 days after the surgery due to a severe lost of balance at work. I have hit my head many times and the driving…well I still do it, but just by miracle that I have not crashed the car with all the vertigo episodes while I am driving…How I am supposed to go to work?. For the people that have not done the Gentamycin injections yet, my suggestion will be to leave it for one of the last resources, the recovery process could be very difficult a patient could get vertigo almost daily for a month.
    Would the device help with the tinnitus too?

  25. Stephen says:

    MD is an infection with systemic mediation. Attacks are not ruptures but a stimulated utricle and cristea from endolymph and can be treated very successfully in Australia. The implants are not necessary.

  26. Jeff says:

    Any update on this surgery? The articles appears to be dated from about two years ago, referencing a surgery that took place about six months prior. Is there any information on its effectiveness, did it have any success? Anybody know anything?

  27. ozzy oz says:

    I am from the west indies and doctors seem lost I get severe bouts and drop attacks I will do anything to get away from md

  28. ozzy oz says:

    my md is destroying my life and drop attacks are scary I will be glad for any relief from this disturbing condition

  29. Evan says:

    You can read more about ongoing research related to this device here: http://depts.washington.edu/coursejo/ESVN/index.html

    And a recent abstract here: http://www.ncbi.nlm.nih.gov/pubmed/23771587

    This University of Washington implant is interesting, but works in a relatively simple manner (of course, I am not a doctor). I have no doubt these UW researchers would say, “Well, yes, but we had to start somewhere.” There’s a great video on this implant here: http://uwtv.org/series/17392251/watch/16218324/

    The folks who seem to have made the most progress on a true vestibular prosthesis are at Johns Hopkins: https://sites.google.com/site/vestibularneuroengineering/research/prosthesis

    I am a long-time sufferer of a bilateral vestibular disorder (going on 14 years now). I’ve managed to live a relatively normal life, but this disease is often debilitating, and if it gets much worse for me, will definitely be disabling. I hope we will see a better understanding of Meniere’s and other vestibular disorders in the near future. Not to mention better treatment options!

  30. Rudy Reyes says:

    Yes Hi every one i have this sickness i do lots of head excercises your doc shulld have a brochure on what type to do it helps also take zyrtec allergi medication it works dont get this vertigo anymore it like relaxes your head also sleep more take a nap that really helps if you strees or worry it gets worse take up a hobby at home stay busy i repair jewelry you sit there and do nothing it feels worse i feel like i cant do any thing but i do it anny way take care trust me it helps

  31. Bret Reing says:

    Oh yea my goodness! an incredible post dude. Appreciate it However We are going through problem with your REALLY SIMPLY SYNDICATION. How to start precisely why Unable to sign up for it. Will there be anyone getting similar RSS problem? Anyone that knows kindly respond. Thnkx

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  32. James says:

    As far as I know the patient’s name is Gene and after he had the surgery he stopped having vertigo.So they have never been able to test the device.
    He posted on menieres.org

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