Wednesday, March 25, 2009

The Meniett Device for Meniere's disease


A meniett device is a device that fits in the ear that sends pressure pulses to the inner ear. A small tube has to be surgically implanted in the ear before the meniett device will work. The pressure that the device provides will force excess endolymph from the endolymphic sac. Excess endolymph is considered to be a cause of Meniere’s disease.

The device is made by Medtronic. It is small and can easily be handled. The pulses that the device generated are computer timed. The patient will typically use the meniett 3 times a day for 3 to 5 minutes.

The FDA cleared the Meniett for use in 1999. Tests have shown the effectiveness in providing relief for some Meniere’s patients and those who suffer with tinnitus.

The Meniett has to be prescribed by a doctor. Insurance coverage is up to the provider. My insurance company wouldn’t pay for the device. Maybe with more studies it will be included.

66 comments:

  1. Do you know of anyone who has tried this Meniett device? If so how did it work for them & was it able to aliviate a full blown attack once it started?

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    1. I know someone who used the Meniett device to help with veritigo related to Menieres -- she found this device really helped with the vertigo.

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  2. I can't remember if anyone posted a comment about it but I will ask in an upcoming blog post.
    David

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  3. I have been using a Meniett device prescribed by my ENT in January of 2010 with very good success. Prior to the Meniett I was almost confined to the house due to severe vertigo attacks that lasted up to 6 hours at a time. I understand that the device does not work for everyone, but it has been a blessing for me.

    For the last 6 months I have led a mostly normal life, except for when the temporary ear tube has come out, or become clogged. I just had a permanent (T-tube) implanted this week.

    It took about 3 weeks for the Meniett to reduce about 95 percent of my symptoms, this is documented by Medtronic. Medtronic will allow a 2 month trial of the device with a full refund if it does not work.

    I could tell immediately that it was helping me, in fact I did arrest attacks that had started.

    I hope this helps.

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    1. Hi Ken - my name is Grahame and I started with the Meniett device last week, but had a major attack today. It was reassuring to read that it took 3 weeks for the device to help you, how are things today?
      I am also on cinarizine and a moduretic
      Can you email me at marksy12@hotmail.com

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  4. Thanks Ken,
    I appreciate the information about the meniett device. I will put this comment in an upcoming post.
    stay in touch
    David

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  5. I was one of the first patients to try the Meniett in the US; back in 2001 (I don't think it was FDA approved until later). In Seattle, I met the inventor (a Swedish doctor), and folks from Medtronics that were in the process of buying the technology. I used it for about 6 months. But like everything with Meniere's, it's anyone's guess if you are feeling better because of treatment or because the disease is taking a break (short or long). That was my experience.

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  6. Have you thought about using it again?
    Thanks for the comment and stay in touch
    David

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    1. I have had the device for 3 weeks. Unfortunately, I have not been helped with the dizziness and have lost a bit more hearing. I have not given up hope and may ask to return and try later.

      I'm not sure how to contact you directly. Have a question. I am facing Rotator cuff surgery. I've been a personal trainer for 15 years and a gym rat for many more so there was certainly overuse. I am not currently working and had worked at a higher paying sales position until I became too sick about 6 months ago. I did not keep up my normal exercise routine(yoga) and really regret that because I know better. But, the tear probably was as a result of stopping a fall(several times) due to the balance loss. My question is "has anyone undergone this or another surgery and has it exacerbated the Meniere's?

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  7. Meniett device doesn't work for everyone. Some people swear by them, others reap no benefit at all. Unfortunately, it did nothing for me, even after three months. Fortunately, my doctor loaned me the device so I could check it out before making the hefty investment to buy one.
    Bottom line is it's worth a try, but see if your doctor can lend you one before you buy. It's expensive.

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  8. Hi, My question concerns the efficacy of the Meniett to improve hearing loss caused by Meniere's. I have lost all hearing in one ear, and the other is decreasing. I have been told I just need to accept that, so I am searching for answers. Thank you. Sue

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  9. Hi Sue,
    I don't think that I have ever heard of anyone's hearing being improved using the meniett device.
    I also keep searching for answers about meniere's because you have to keep trying and not give up.
    good luck and stay in touch
    David

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  10. Has anyone ever heard of a link between hypothyroidism and meniere's. I have hypothyroid and meniere's,meniere's for 3 years, first two years were fine with a controlled low sodium diet, but now I have swimming head almost daily. My Doc. up'd my diuretic and put me on Valium "as needed". Now am thinking aboout the low-dose genatmicin injections though I don't get full blown vertigo attacks, but just everyday I get the feeling of them coming on. If I do get dizzy it's like for a couple of minues then it goes away. Sometimes, I'm driving and have ti pull over until it passes, most of the time I have to leave work, cannot concentrate and the part I hate the most, my 3 year old has to see me and now it's routine for him to ask, "Mommy are you feeling dizzy?" I was even pushing my Doctor for the surgery...any words from anyone would help, as I feel alone because I don't personally know anyone else with this horrible disease. Thanks....Patty

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  11. Hi Patty,
    I had the gent injections in 2008 and this summer they seemed to work at first but not now. But some people have told me that it works for them so you might want to talk it over with your doctor.
    I have a eight year old son and he is constantly asking me about if I am dizzy. I feel bad that this disorder is making him worry about me.
    Don't feel alone there are many of us out there with meniere's disease, and I would say that most if not all of them are very supportive and very helpful. Please stay in touch and let us know how you are doing.
    David

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    1. Hi David, can you confirm that the Meniett device worked for you, post Gent injections?
      Cheers,James.

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  12. Hi Sue, I have extreme hearing loss in my left ear and my I hear strange noises and have some pain in my right ear. I am so afraid of losing my hearing altogether. I have a 5 yr old daughter and I am trying to find out all I can- about help. If you find anything =Please post. I will do the same.

    Thanks and take care
    Terri

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  13. Hello , I am 27 yeras old and I am a musician so this menier`s is really bothering me. I have lost just a little of high frequence hearing in my right ear since my last attack 1 months ago. I would like to know if still is posible to get back my hearing or I shoud get use to the idea of it getting worst.
    Thanks.

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  14. Hi,
    I can't really say what is going to happen to your hearing because I'm not a doctor. but in my case the hearing got worse.
    thanks for the comment
    David

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  15. Dear Anonymous, Nov10th
    I too have the hearing loss, I am 45, my doctor says the hearing loss is permanent. It is caused when the hairs inside the labyrinth of the ear lay down if they are down for too long they die...this one area where the the body does not replenish. The hairs are attached to the nerves that send messages to the brain for what you are hearing and if they die you brain no longer gets that message. so then the all the sounds that come in to your ear can not be received by the brain. That is why it can be hard to understand somethings because your brain is not getting the whole message.

    I also sing and understand the dilemma of not being able to hear all the notes or even the direction in which sound is coming.
    -Audrey, Sacramento, CA

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  16. Did anyone find that exercising brought on attacks of vertigo?

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  17. I guess it would depend on what type of exercise you were doing. I don't think that walking would be to bad to start out with.
    David

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  18. Hi, I am in the process of ordering a Meniett and am so hoping it will work. I have appreciated reading all the comments in this Blog. I have the daily dis-equillibrium, tinnitus, hearing loss and periodic bouts of vertigo. I have found bike riding to be one of the best helps for me, has anyone else found biking helpful, I have no idea why it works, but a physio suggested it as a way of retraining the balance centre.
    Margart

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  19. HI, I have bilateral Meniere's for 16 years now. I think I'm finally loosing the battle with my L ear. Anyway, I've had the Endolymphatic shunt R ear 12 years ago (I don't recommend because it makes the tinnitus worse) and then 6 years later 2 gentamycin injections. They worked GREAT for the vertigo but the hearing is gone in that ear. It went immediately and never came back. I rarely have vertigo. But I can feel my ears swelling more so in the spring but I fear I did it to myself. I hope the hearing comes back on the left. On high dose steroids right now. One day I can hear, the next I can't. I could ski and hear in December and now I'm reduced to this. I've had terrible head noise and tinnitus for the past 6 years. It is relentless. When I get home from work, my head is about to explode from the noise. I've found high impact sweaty exercise VERY helpful until last week. It just made my situation worse. I've thought about the Meniett but since vertigo isn't really bothering me, I don't want to upset it.

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  20. I have been using the Meniett device for about 2 months. I can honestly say that I have not had an attack since then, but the pressure in my right ear and hearing loss has not gone away. Also, I get temporary relief with pressure by using the Meniett device, but it comes back almost immediately. So, at this point, I would say that device does not cure MD.

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  21. Anonymous, there isn't any cure, and for those people who are helped by the Meniett device, it's necessary to continue using it. I'm glad it provides you with relief. It didn't help me. But any reprieve from the symptoms would be worth it, so if it works for you, I say keep on using it.

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  22. Hello Everyone, I am 29 years old and a mom of two. I have delt with this disease for 11 years and am at my wits end. Think I am going to try this device to see if it works...I have had 4 operations already and several injections of gent and streptymicn. Also considering going to the House of Ear in LA....anyone ever been to a clinic of this sort...that specializes in this disease...I need a fix as this is taking over my life.

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  23. See if your doctor has a Meniett device they will let you use until you find out whether it works for you or not. They are very expensive, and insurance won't cover it for the most part. Good luck... hope it works!

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  24. Hi, I am 24 years old and have suffered with menieres since I was 18. I get frequent attacks in the right ear, probably 5 times a month. I have had three drop attacks in the last year. I had a grommet inserted and have had the steroid injections, but unfortunately like the rest of you hasn't done much. I'm on a relatively low-salt diet, unable to drive, run or play football anymore. The main thing that I suffer with is the physiological effect it has upon me. I used to work in medical insurance so I got to speak to a lot of people with the condition, when I asked about medication a lot said betahistine with cinnerazine works well. With regards to the meniett, I am currently awaiting mine to arrive. Whether or not it works or cost £2000 for me it is worth a shot as I need stability. One thing I have noticed is intense mental stress can bring on symptoms quickly. I went on holiday to a log cabin for a week, real peace and tranquility! For the first week in a year I didn't think about anything and before I new it the symptoms vanished. The next week I returned to a stressful sales job in the city of London and within 2 days it all came back. Eating salty foods for me is just controlling how bad the symptoms get not a direct cause. I have been in remission before and eat lots of salty foods without any effect, but when I'm not well it seems this is just like adding fuel to a fire. At the age of 18-24 it has hit me hard, and I'm sure the rest of you exactly the same. One thing I know is if or when it goes back into remission again, I will blooming enjoy everyday! Pete

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  25. Pete,
    thanks for the comment. Stress does occur quite often with Meniere's disease. Good luck and stay in touch and let us know about your experience with the Meniett
    thanks
    David

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  26. to all who can not afford the meniett ... my insurance would not pay the 4,000 dollars so my Dr. told me to check with the Lions club. I did and they got me the device at no cost to me. call your local lions club, my Dr. had to send a note to them but they did it and i had ventilation tubes put in both ears and use the device 3 times a day. that was a year ago and i have not had a bad dizzy since. The Lions Club is there to help persons like us...

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  27. How helpful this blog is.

    I am just starting the process of dealing with Menieres. Just two drop attacks, bilateral tinnitus, some hearing loss.

    I hope you all know how much you do help. A busy doctor sometimes knows very little about Menieres. I was met with total disbelief when I metnioned my drop attacks as connected with Menieres. After tests which showed no other conditions could have caused the dropping, my doctor did accept that I had this 'very rare' condition with my Menieres.

    He suggested that I come back in a year. The very next day I had a (for me) a very bad attack. Lots of loud bilateral tinnitus, lots of hearing loss. No vertigo - yet. I understand that this journey is a progressive one.

    I need to talk to this doctor about whether to get a hearing aid at this stage of my Menieres, but, as I mentioned, the information on this blog has been beyond helpful.

    Thank you all and than you Mr. Stillwagon.

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  28. You are very welcome and I appreciate your kind words
    please stay in touch and let us know how you are doing
    David

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  29. I stumbled onto this site by accident and quite glad (and sad) that I did. I've suffered both physiologically and mentally and battle the depression and hopelessness of this affliction every day...I'm 52 yrs old.

    Reading the posts have brought up a lot of emotion connected with my affliction of MD over the last 12 yrs. I was misdiagnosed in the earlier stages and was told later that I could have improved my odds (to save my hearing) by getting steroid treatments earlier on. Early symptoms included intermittent hearing loss and tinnitus in my right ear...then the vertigo entered the picture about 8 yrs ago and changed my life forever. I was told by Doctor that it sounded a lot like Menier's disease, he was right. An ENT Dr. who actually knew what he was talking about recommended the Menietts device. At this time, I was having severe vertigo attacks lasting up to 12 hrs sometimes accompanied by vomiting and slurring of speech. A shunt was placed in my ear drum and $3,800 later I had a Menietts device delivering low pass frequency waves to my inner ear. It helped tremendously! The vertigo all but disappeared but did not help with the hearing loss or the deafening tinnitus. Ear infections were a bit of a problem but well worth the trade off. It seemed to help in the severity and duration of the vertigo attacks from that point on. However, the ear infections kept returning and would displace the shunts and I would have them replaced (4 times)...NO FUN! So...I opted to let the shunt hole in my eardrum grow over the last time it popped out.

    The long and short of it?...The Menietts device gave me my life back to the point that I was able to deal with and GREATLY reduce the frequency and severity of the vertigo attacks. With the Menietts device on the shelf I still suffer from the attacks although not as bad as before. I guess you could say I'm a Menietts success story. I haven't used the device for a couple of years and may be interested in selling it. Can I post my e-mail address on this site for this purpose?

    Thanks for listening everyone...hang in there and don't lose hope for an eventual cure!...............Jack

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  30. Jack, it's a great idea to sell the Meniett device to someone else who can use it. I'm sorry you had to give it up. I also had a boatload of trouble with the grommet in my eardrum, which caused an infection. We removed it and gave up on that idea, because unfortunately the device didn't seem to help me much.

    Maybe if you post in some other areas on this blog it would help find someone who could use it? Considering how expensive the device is, it would be great if people could pass it along to someone else when it stops being helpful to them. I felt the same way when my hearing aid stopped helping me as my bad ear got worse and worse.

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  31. I'm 44 years old and have been having hearing loss in my left ear (and diagnosed with Menieres) and then vertigo over the last 2 years. My life was very very stressful when it started to occur and now it is not so much but the Vertigo attacks come and go but are really starting to interrupt life. I feel like sleeping all the time because sitting up is no fun. My hearing seems to be fairly stable with ringing off and on. I'm worried about the future though and it doesn't sound pretty from what I'm reading. I do a pretty high intensity workout which seems to really help manage it and make me feel better. Sounds like we're all in this together and hopefully there will be a cure soon. I found this recent case study that sounded hopeful: http://www.ncbi.nlm.nih.gov/pubmed.

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  32. Hi,
    I have been dealing with Meniere's Disease for 14 years now with periods of remission. This winter it has come back with a vengeance. I have been mostly shut in for February and March, depending on others for bringing groceries on the worst days or driving me to get my own on the best days. This time around, the vertigo seems "slower" but more persistent. In earlier years I would have sickness that lasted around 10 days with periods of a few months...not symptom free...but vertigo free. Now I just can't seem to shake it. Every time I feel like I am getting better I am knocked down again.
    My children were small when this started ( 4 and 7) and it has changed their lives as well as my husbands and myself.
    I had asked an ENT about hyperbaric treatment way back in 1998 or 1999 and he basically told me not to believe everythng I read on the internet. I have not seen an ENT since his diagnosis. It sounds like this Meniett is very much like hyperbaric treatment and worth looking into.
    For me, even doing the simplest physical jobs around the house causes dizziness. Does this apply to anyone else? Should I try and push through it with heavier physical excersize in hopes that I will sort of "break through" the constant symptoms?
    Thank you for this web site. Sometimes I feel like I am so alone and can't take it anymore.

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    1. Hi,
      This is the 1st time I have posted on this site. I have been reading all the posts for days. I am so glad to read about all the other people who are experiencing the same things I am. It is therapeutic but also scary. I am 50 years old and a Registered Nurse in Hospice. I had my 1st symptom of aural fullness when I was 39. I was misdiagnosed for years. Finally, 3 years ago I was correctly diagnoses with bilateral MD with symptoms only in my left hear (for now). My job was stressful, I was up all night frequently for work. I began having lengthy aural fullness with crazy loud tinnitus. The vertigo was not bad yet. I had an Endolymphatic shunt placed with terrible results. I was off work for 3 months, feeling like I was falling out of bed or my chair. I could not go back to work as a case manager for home hospice patients since I was no longer reliable, attacks were more frequent. I hated this, as I loved this work. I am still working in Hospice, but in a desk job(it's getting harder to work since the slightest stress usually leads to an attack). My journey includes low salt diet, valium, allergy testing, chiropractic work, accupuncture, decadron injections, Meniett device (with tube placement) and now migraine meds. I've been referred to a migraine MD with the suspicion of vestibular migraines.
      As someone has mentioned, MD seems to take different forms throughout it's course. Currently, I am in a cycle of weekly attacks which have basically been going on since last June. It starts with the aural fullness that builds over days. The ringing gets louder/different. Then comes the vertigo, then usually relief until it starts over. I am frequently dizzy, worse when I am shopping or looking around alot. I often get strangly fluish without fever before or with it. Noone can explain that one. At present, the vertigo is light. I wanted to respond to the Miniett device. Unfortunately, it did not work for me. I think it is worth a try though if you can afford it. My doctor in Cincinnati, OH states that it is helpful in 65% of his patients. The tube placement was not uncomfortable but I did notice a little less hearing in that ear. Also, I can't tolerate loud bass in music in my good right ear, noted immediately after tube in left ear was placed (love loud music sometimes). I did find that a round of oral steriods, a Medrol pack helped me to get out of the weekly pattern. I hate the side effects though. I am curious if this could be autoimmune as someone had mentioned in their post. How can I find this out?? No doctor here seems to know. Also, has anyone stayed on an oral steroid and had success?
      All of us has had such individual rides with this but it is wonderful to know that we are not alone!!! Thank you for this blog!!

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    2. This is very interesting, about the hyperbaric chamber... I would guess that what works about it is the pressure, which is essentially how the Meniett Device works, too. I haven't heard about it before, though.

      Regarding oral steroids, I was on them for awhile, and the side effects of weaning off them were so bad that I will never voluntarily go on them again. In fact, I have dumped all the prednisone I had in the house because I hate it so much. And to tell you the truth, it didn't do much for me even when I was on it for a few months.

      Good luck with the journey... it IS nice to know we are not alone, right? :)

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    3. Thanks Peggy for your information on steroids. I hated taking them too but I couldn't believe how it took me out of long lasting aural fullness and the sick feeling I get. I went into a slight vertigo attack after 2 days on them and then I felt great again. I've been off the steroids about a week and the aural fullness and sick feeling are back. Ugg!!! That means probably vertigo this Easter weekend:( Were you on a low dose? What side effects did you have? Right now I am going to a migraine specialist who wants me to take Neurontin 3 times a day. I am finding the side effects unpleasant and it is not working. I will keep trying....

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    4. Wow its so nice to know i am not alone, i have been suffering now for 13 years and it has turned my life upside down to say the least. I have constabt dizziness and cannot remember the last time i had a dizziness free day! i have had bouts where im stuck literally in bed for months at a time. I have tried many thongs and spent a fortune in the process. i have such opptomisum that one day i will get relief and i sure hope so and some days i dont know how i carry on... its so hard for people to understand. My husband was very understanding and suppotive to begin with however that has worn off now and he finally left last year and Im now alone with a 4 and 7 year old and am going through a terrible divorce now as my husband could no longer cope. I have paid privatley in hope to find a solution but nothing yet - ive tried all the usual medication and masses of physio. he thinks i have a collection of disorders but thankfully my hearing is good. I think i have menieres, migrine disorder and pressure related conditions if not more... im really interested in the divise that you put in your ear and would love to hear from anyone else that has tried it in my situation and really hope i can give some sort of life to me and my children and be able to do the simple things like walk them to and from school!! if it wasnt for my wonderful parents i dont know what i would do and everyday is soo hard! the joy to be able to just stand up....

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    5. hello clare
      sorry to hear about your situatiion. but for someone who has suffered that long i would think you really should be looking into operations.
      ali

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    6. Claire, I'm so sorry to hear what you've been going through.

      I have a thought... if your hearing is still good after 13 years of this, you might not have Meniere's Disease and should try a different kind of specialist. Have you seen a neurologist or a migraine specialist?

      In your position, I would go to see some different doctors to see what they think. Your case sounds atypical to me.

      Best of luck... I hope you find relief soon.

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  33. I think I have bilateral MD, left starting 5 years ago and right ear about an ear ago. I had vertigo attack in the first three years but last two years were peaceful. My left ear hearing is almost gone but there are days when it comes back almost to normal. I feel my ears open when I'm up in the sky in an aeroplane. My tinnitus (oh! I have a terrible one) is also better when on a flight.

    I'm wondering if what I need is a reverse meniett's device, sucking up pressure from my inner ear.

    The placebo effect of multiple treatments makes me think if not all MD are the same. It might be caused for different reasons for different people but with the same symptoms. I have a feeling that mine is not a permanent hearing loss as my hearing comes back now and then. It could be a blood vessel pressing on my hearing nerve. Unfortunately I won't be able to find out. There is just not enough research on this.

    I also found if I have about 8 hours of good night's sleep, I'm better the next day. Hearing and balance both. I am diagnosed with Narcolepsy and may be that's a triggering factor for my MD. I recollect that I had vertigo every time my sleep cycle was screwed up. Now I don't stay awake at night and probably that's why I don't have vertigo any more. Again, I will never know.

    Some time back I bought a bottle of Melatonin to correct my sleep cycle. On the bottle I read this warning that its not for persons with auto-immune disease. I searched online why and found that Melatonin was found in the cochlear fluid of people with MD. Interesting, isn't it?

    I suggest everyone with MD to keep a tab on your sleep cycle and the occurance of Vertigo. It might be helpful if we can find a relationship. Whatya say?

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  34. I typed out a long comment but was lost while logging in. So I'll make it a short question.

    Has any body noticed a relationship between sleep cycle and MD? I find mine (I have bi MD) has a very close relation. I think I was able to control my vertigo by getting an extra hour of sleep and correcting my sleep cycle. Would like to know if any one else felt that way.

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    1. Hi, Jijo, I think many people have fewer or less intense MD symptoms if they get a good amount of sleep. And it looks to me as if your longer comment DID get posted. :)

      BTW, this could be a total coincidence, but in the course of having tests done for migraines, a neurologist mentioned to me that getting a lot of sleep is key, because "sleep heals the brain."

      I've often wondered how close the relationships are between migraines and Meniere's, and part of me wonders if there is a neurological component to Meniere's that isn't being well explored and documented. Just a random thought...

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  35. Thanks, Peggy. Menieres and Migraine are very well related if what I read on the internet is right.

    I tried a crazy stuff as part of my own treatment. Some where I read that a Japanese scientist did some research with Erythritol and found that it reduces cochlear pressure in rats. She fed the rats with Erythritol mixed with Pectin. (If you feed just Erythritol it would cause diahrrea so the Pectin). Well, I bought a packet myself and started having it a spoonful in my morning and afternoon tea. Don't ask me if that helped in the reduction/disappearance of vertigo, I don't know. With MD, it's all placebo. I've been having Erythritol for almost 1 year and when the symptoms went away (obviously not because of Erythritol) I stopped taking it. A year after my right ear started going south, I resumed taking it. Right ear is still going south but I haven't got any vertigo yet.

    Hmm... with MD, there's always a yet, isn't it? :)

    (Please don't take my experiment seriously. I was just crazy and ready to do any thing to stop the Vertigo. I do not recommend Erythritol except may be as not-so-good-tasting low calorie sugar substitute)

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    1. "With MD, it's all placebo." That's a pretty accurate description, really. My opinion is that with Meniere's, no one really has a clue.

      Meanwhile, I'm terrifying myself with thoughts that I might actually be developing (or identifying) a seizure disorder in myself. The more I read, the more worried I get. Next week I'll do a 48-hour EEG to see if we can find out more about the abnormally slow brain waves in my temporal lobes, but I have yet to find any comforting information on the Internet.

      More placebos coming my way. Plenty of uncertainty with a side order of drugs that might or might not help.

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  36. Guys, I started using this device since last year and it seemed to do very little. At least for me it seemed to be a complete waste of money but I have heard that it worked for some other patients.

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  37. I tried the Menniett Device a few years ago and got temporary relief for awhile. My menieres eventually progressed and I had to have a Labyrinthectomy which negated the use of the device. I still have the Menniett device and am willing to sell it to someone at a greatly reduced price. My insurance did not cover any of the cost and I would like to recoup some of my cost. My email is kwpowell1@hotmail.com Thanks

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    1. Can you tell me what was involved in your surgery?? Was it bad postoperative? I have read some bad stories about the labyrinthectomy and would like your story..in the event my husband ends up there.

      Thanks much!

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    2. There is a whole section in this blog about labyrinthectomy surgeries, if you want more information. Just do a search using the box at the upper left corner of the page, and it should take you there. But there have been recent posts to the most active labyrinthectomy thread, so you should be able to find it just by clicking on some of the most recent post activity at the top right corner of the page.

      You can also click through the threads that are arranged by year and month down the right hand side of the page, because labyrinthectomies are covered from time to time. Good luck!

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  38. Hi, I'm 29 and i've had MD since my son was born just over 2 years ago. In the beginning it was hearing loss which i was ok with... now it's daily vertigo sometimes only 20 mins sometimes going for 2 or 3 days. I want to end it all sometimes as it's so hard to have any quality of life. I'm still losing my hearing, most in the left ear and some in the right. I wear a hearing aid now and have gromets insterted every 3 months. I am about to try the meniett device but am unsure if it will do anything as i am also taking Serc, Cinnarizine and valium to help.. and diuretics/sudafed etc.
    It looks like there's not much hope by reading through the above comments. I am considering surgery what do you think ?? I would really value any suggestions so that i can live a normal life. I'm a single mum and worried that one day something bad will happen and my little boy will be unable to help.
    KC

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  39. hello kc
    remember sometimes the medicine you take can make your condition much worse. for example diuretics taken daily can really aggrevate menieres, also you take sudafed that is a kind of stimulant, too much of that is not good for menieres.
    doctors are only a guide, find out about your body.
    its a long journey but trust me there is some light at the end of the road, maybe not a cure but getting rid of the sever attcks is possible.
    regards
    ali
    just a quickie for you:
    diet and intolerences
    sinus control
    turn off radiators
    get alot of fresh oxygen
    migraine control
    massage cranial osteoptah
    tai chi
    Cawthorne Cooksey (VERTIGO REHAB EXERCISES R VITAL)

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  40. KC, I'm so sorry for what you're going through, and I understand your frustration and despair. Don't lose hope. Keep working with your doctor, and if you aren't getting any results, don't hesitate to seek a second opinion from another specialist.

    What kind of surgery are you referring to? You should not consider labyrinthectomy on both sides, or even gentamicin injections, because they are destructive treatments that would leave you with no sense of balance if you do it on both sides. Bilateral Meniere's is the most difficult kind to treat, because it limits your possibilities. But sac decompression might help, and I'm a little surprised that the grommets on both sides are not helping at least somewhat.

    It might be smart to review your medications, to look for interactions and check dosages. I don't see prednisone (steroid) on your list. Perhaps it could help, but I wouldn't pile it on top of everything else.

    I know how you feel to some degree... I went through a year of not knowing what on earth to do. I was taking all kinds of medications, having the gentamicin shots, getting the grommet, trying the Meniett device... you name it. But I was comparatively fortunate, because I only have it in one ear.

    Can you exercise at all? I know there are many stages of Meniere's when it's totally impossible, but many people on this blog say it helps them stay more stable and even make attacks less frequent.

    But my first suggestion would be to talk to your doctor, tell him or her of your frustrations, and don't hesitate to reach out for additional advice from other doctors. Sometimes a doctor doesn't have all the answers, and many doctors are not as well versed in Meniere's as others.

    Good luck, and hang in there.

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  41. Good morning,David. I have followed your site for several years because my son had severe bilateral Meniere's. He passed away early this month from complications with a perforated ulcer, sepsis, and renal failure. We purchased a Meniett's device for him several years ago which, unfortunately, did not work well for him. However, I would like to make it available, at a significantly reduced cost, to someone within the Meniere's community who could use it. It is intact, in its original case. If you know of anyone who might be interested, please let me have them contact me. Patrick's menieres was the single significant aspect of his life which was extraodinarily debilitating; so many people don't understand the ramifications of it. He was 38 when he passed away. Thank you, Kathy Ackerson

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  42. Kathy, I am SO sorry for your loss. And it's very kind of you to want to give back to other Meniere's sufferers. I hope you find comfort in your memories of Patrick's better times.

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  43. Kathy I am sorry to hear about the passing of your son. It is very nice that you are trying to help others with this terrible disorder.
    David

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  44. Hi my name is Grahame and I have had menieres for nearly 8 years.

    I have been on serc, and am now on cinarizine and a moduretic for 6 months, with moderate success. I was lucky to buy a menniett on ebay for $200, had the grommet inserted last week. I have since been using the menniett, still on cinarizine and moduretic.

    Been feeling light headed but today had a major attack. My Doctor wants me to have gem injuections, but the menniett is less invasive. Im hoping it will work. What do people know about low-dose gem injections? Any one had success with the menniett?

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  45. Grahame, how long ago did you buy that Meniett device (GREAT price, by the way)? I have tried it, without success, although many people do get good results. But it takes time to realize the full benefits, from what I have heard.

    If you have been using it for more than a couple of months, you might not be one of the fortunate people whom the device helps. But, if you have only been using it for a couple of weeks, it could be worth trying it a bit longer to see if it starts to give you relief. Good luck!

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    Replies
    1. Hi Peggy

      Thank you for your response, I do apologise for taking so long to respond. I commenced the Menniett late October 2012 and everything went fine for about 9 weeks. November and December were clear, two really brief strange attacks in January 2013 lasting about 2 minutes and then February and March I have had 31 attacks, sometimes 2-3 a day :-(

      One thing I have noticed is that the menniett is not giving me the boom boom boom in the affected ear that it was prior. I am told the grommett is still in place and no wax. The Menniett is working fine - I test it in the good ear. It more feels and sounds like a very slight puff in the affected ear. I will post about this below as well. Cheers Grahame

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  46. I have had Menieres for about 8 yrs also. The Menietts device that I had purchased worked wonders for me soon after I had bought it (about 3 or 4 yrs ago). I had a lot of problems with inner ear infections, mostly due to water from my hot tub and lakes. This caused me to finally stop with the treatments and had found that the relief from the bouts of serious vertigo, that I attribute to the use of the Menietts device, seemed to be permanent. I get an occasional attack but literally nothing for the last 6 months! Give it some more time...I used mine for about a year and a half religiously every nite. Good Luck!

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  47. Hi - my name is Grahame and I have been using the Menniett since late October 2012. It started well, November and December were clear, two very strange brief attacks in January 2013 lasting about 2 minutes and then it has all fallen apart in Feb and March with over 30 attacks. Sometimes 2-3 a day. One thing I have noticed is the Menniett doesn't give me that "boom boom boom" feeling in the affected ear, more like a puff puff puff. I am told the grommet is in place and there is no wax. When I put the menniett in the good ear I do get the boom boom boom. I would appreciate any ones comments or experiences

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  48. Hello! I am so grateful to have found this community! I have been symptomatic since 2008. Aural fullness, dizziness, vertigo and nausea. Nausea is the worst. Vigorous exercise brings on an attack for me. I have been out of work since 2011 due to the severity and frequency of nausea and dizziness.

    I started Meniett device treatment today. Will let you know how it goes.

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  49. It's been over two years since I commented. So here's an update on my case.

    I still have low hearing on my left ear. I have high pitched tinnitus in my left ear. The right is kind of okay except on a bad day that comes once in a while. I'm still able to keep my job and my family is well fed so far. I don't have vertigo 'attacks' any more. Well, there are episodes when I get wobbly but it's not the merry-go-round that I'm so very scared of. I manage those short spells by taking half a tablet of Stugeron 75 (cinnarizine). Stugeron is not available in the US, so I get it from India. I was prescribed alternate medications here but none of them worked for me. it's also way cheaper for me to get it from India. :)

    Sleep continues to play a vital role on my balance and hearing. I still use Melatonin occasionally to correct my sleep cycle. No sleeping pills so far even though I got a bottle of prescription pills with me. Never felt comfortable enough to try them.

    I've come to the conclusion that my MD is a result of my total disregard for sleep, right from my college days. I had ignored the warnings that my body was giving me and now paying a very high price. I consider lucky to have survived so far. Just keep it between us, I had even toyed with the idea of an unceremonious exit at one point. The MD was totally unbearable. Also lucky to have found some fellow Menieres like on this blog. Hope my lucky streak continues.

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