Question about bilateral

Hi Nyyth,

This article may help explain what happens when you lose vestibular function on both sides: https://vestibular.org/BVH

I don't think surgeons would recommend bilateral nerve sections in most cases.

 

I don't know. The smartest member left.

 

I have been bilateral for over twenty years and still have nerve function in both ears. I’m going on the 13th to have them test and see how much function is left.

 

I fought this illness for quite a while before realizing my life wouldn't get better unless I accepted it and decided to live my life with it rather than against it. I don't think immature or weak applies for anyone with this condition. I have found seeing a psychologist helpful in figuring out how to keep some mental health going and cutting out unnecessary stresses. This disease loves to feed on stress.

 

A fun bit of research for tinnitus is being done at the University of Minnesota under Dr. Lin in collaboration with the Apparel Design program. They are experimenting with making t-shirts that are "wired" to reduce tinnitus. I wanted to be a test subject for them, but they weren't taking folks with Meniere's because our symptoms are too random to evaluate direct cause and effect.

Something to dream about -- a future of getting up in the morning and putting on an anti-Meniere's superhero outfit to conquer the world!

 

Great questions Nynnth and I like the idea of a challenge. It is amazing to me that 2% of population have this disease, I believe, yet not much happening with research. Although funding for any kind of scientific research has been on a steady decline for years it seems.

I really appreciate what Clare told you and would like to reiterate about trying to destress as much as possible, hard as it may be, it ONLY makes it worse. Acceptance that this is a chronic disease is the beginning. Many many people do seem to be able to manage it though and get a life back. Trying to gain some sense of control over what you can control helped me a lot. Reducing salt load (decreased tinnitus), staying well hydrated, reducing alcohol and caffeine. ( I eliminated because didn't have much caffeine or alcohol prior), exercise (even if you have to modify greatly because your symptoms are flaring) It may seem pretty basic but trying to boost your body to help it do whatever it naturally can to fight it. It seems amazing to me what we can handle once we mentally wrap around this issue of it being chronic. I remember going to the Doctor ( ENT) early on and seeing posters on the wall for sign language and freaking out that this is my future, worrying that I would forget the sounds of my familys' voices. Now I realize that even if hearing gets worse there are methods to deal with it (cochlear implant which are getting smaller and smaller) BUT it may never to come to that, many go into remission.

Please quickly see if your Doctor will prescribe antivirals. Even a GP can do it...take a copy of Gaceks research ( see archives on this site) with you to justify. They do not work for everyone but many do seem to be helped me included. Antivirals have a long history treating herpes virus so Doctors are not worried about adverse side effects. I have been on them 3+ yrs now and had no vertigo after 1.5weeks.

One thing I have learned from reading this forum is that everyone here has their own unique path with Meniere's, no 2 seem to be exactly alike. It seems that there are several different ways our inner ear can be damaged and results in the symptoms we know as Meniere's so learn to know your body and advocate for what seems best for you.

 

Nyyth,

You asked about dual Labyrinthectomies. I am bilateral as well and have asked my ENT surgeon and he said it is possible to do the Laby on both sides with cochlear implants, but that would be a worst case scenario as you would then have Oscillopsia, problems walking, or maintaining balance in the dark...

I'm afraid there are no silver bullets to solve Meniere's. You'll have to try and see what works for you: low sodium diet, no caffeine, alcohol, staying hydrated, reducing stress, exercise, antivirals, herbal supplements etc. I was prescribed Humira and later Simponi as my ENT thought my bilateral meniere's was actually inner ear autoimmune disease, neither of the drugs seemed to work, but two month later I'm having a bad flare up. The unpredictability is challenging and stressful, and it does become difficult to know what works, since the problems fluctuate so much.

I have refused the destructive measures in hopes that I could manage the symptoms until it runs it's course and with hopes that there may be a better treatment with stem cells perhaps. In the mean time, supposedly the balance and hearing on both sides will likely deteriorate to where the violent vertigo lessens and then I'll try hearing aids. The long episodes of spinning and acute nausea have diminished greatly, though I've had a few short sudden episodes that have nearly thrown me to the floor. I'm not sure what to expect in the future, but I just keep trying to be as healthy as possible eating well and avoiding stress.

One idea I haven't seen discussed on this board is the idea of fasting. I saw a netflix video on fasting where it is used in Russia and in Germany for a variety of ailments, under medical supervision. There is also a place in California called True North that offers medically supervised fasts that promote your bodies stem cells to heal autoimmune and other disease. And there is this longevity researcher out of southern California, by the name of Valter Longo who promotes periodic fasting and has a book called the Longevity Diet. Unfortunately I don't think my insurance would cover the True North or the fasting mimicking diet that Dr. Longo sells. But he does have good dietary advice and intermittent fasting can be tried free of charge.