Menieres disease: Anyone had surgery or gentamicin injection?

Posted by rgbaker @rgbaker, Aug 11, 2021

I have menieres and laryngeal sensory neuropathy. My immunologist says they are related. I’ve just recovered from an episode of the latter and now my menieres has flared
Up. I’m on max dose of betahistine and the vertigo is currently debilitating. The tinnitus and hearing loss are getting worse too. Has anyone had surgery or gentamicin injection and if so was it successful?

Interested in more discussions like this? Go to the Ear, Nose & Throat (ENT) Support Group.

@rgbaker, I think you'll also be interested in this related discussion:
– Meniere's Disease https://connect.mayoclinic.org/discussion/menieres-disease-2/

I modified the title of the discussion you started here to get experiences specific to treatment for Meniere's and the accompanying vertigo, tinnitus and hearing loss. I'm tagging @joyces @th1 @lacy2 @artist01 @trishanna @december1011 @cinnamonkat and others to see if they have treatment options to share with you.

So sorry to hear about the flare. How are you managing it at the moment?

REPLY

Hi RGB, many years ago my wife developed Meniere's. For unrelated reasons she adopted an exclusively plant-based diet and Voila! No more Meniere’s. Could be coincidence, but little to no risk with trying it.

REPLY
@colleenyoung

@rgbaker, I think you'll also be interested in this related discussion:
– Meniere's Disease https://connect.mayoclinic.org/discussion/menieres-disease-2/

I modified the title of the discussion you started here to get experiences specific to treatment for Meniere's and the accompanying vertigo, tinnitus and hearing loss. I'm tagging @joyces @th1 @lacy2 @artist01 @trishanna @december1011 @cinnamonkat and others to see if they have treatment options to share with you.

So sorry to hear about the flare. How are you managing it at the moment?

Jump to this post

Hi. The best I can do is prochlorperazine and dimenhydrinate (used for travel sickness) and try to sleep
It away. Mostly I just have to wait it out which takes several days. I’ve been advised re low salt diet but must admit I find it very hard to do given my family’s tastes but that will have to change. From what I’ve read I will have to make more of an effort.

REPLY
@thumperguy

Hi RGB, many years ago my wife developed Meniere's. For unrelated reasons she adopted an exclusively plant-based diet and Voila! No more Meniere’s. Could be coincidence, but little to no risk with trying it.

Jump to this post

@thumperguy-thank you for this great contribution /advice. I often try to encourage people to look more from within when it comes to anything inflammatory related. Every bite we take can either fuel dis-ease or fight it.
Happy to hear your wife had resolution.

REPLY
@colleenyoung

@rgbaker, I think you'll also be interested in this related discussion:
– Meniere's Disease https://connect.mayoclinic.org/discussion/menieres-disease-2/

I modified the title of the discussion you started here to get experiences specific to treatment for Meniere's and the accompanying vertigo, tinnitus and hearing loss. I'm tagging @joyces @th1 @lacy2 @artist01 @trishanna @december1011 @cinnamonkat and others to see if they have treatment options to share with you.

So sorry to hear about the flare. How are you managing it at the moment?

Jump to this post

Thank you ! My tinnitus is awful. Very depressing ..

Sent from my iPhone

REPLY

I've had Meniere's most of my life (now 79). Most Menierians find that their worst days are triggered by something. Instead of trying various diet approaches or eliminating other things people suggest, the sure-fire way to determine just what your trigger or triggers are is to keep a calendar, using a color to shade each day to indicate the kind of day it has been: good, bad, godawful. Then note even the slightest changes from what's normal for you. It can be lots of things: something you ate, less rest, a crisis in your life, less exercise…a looooong list! I know one person who found that dairy products were his trigger; once he eliminated them, he had no really bad days. I've heard of other dietary links to certain foods. While excess salt isn't good for anyone, that's the first thing that docs suggest…even though very few people find relief that way. Further, living with a severely restricted salt diet means that just one meal away from home can upset things. Better to avoid excess salt/salty foods than to try to live with a severe low-salt diet.

Some things simply cannot be avoided, and most Menierians react to stress, which isn't always possible to avoid. All we can do is try to avoid it when possible. After a good friend died, her husband asked me to speak at the memorial service about her request for him to plant a tree in her memory, to which he responded that he'd plant two trees side by side so that their limbs and roots could intertwine. They had always enjoyed a wonderful marriage, so it choked me up to give the speech…and I could hardly stumble down the two easy steps afterwards, nor was I able to climb up the front steps of their house for the gathering afterwards. (Ordinarily, I have learned to overcome my lack of natural balance and do lots of things that younger "norms" can't do.)

Another thing to consider is hormone levels. I noticed nearly 35 years ago that a large percentage of those who had real problems with the disease were post-menopausal women. Low hormone levels are my own personal trigger. Although my primary doc and I had figured out that low hormone levels were my trigger when I first became really ill in my 40s (after quitting birth control pills due to my age). It took us four years to find a doc who knew lots about hormones and was able to give us the formula for safe hormones: 2½ parts progesterone balanced against 1 part estrogen. After four years of having multi-hour vomit fests two or three times every week, I totally quit having them after less than a month on heavy doses of hormones. Later, I tapered down, probably too drastically, and went bilateral two years ago. For a year I wasn't able to find a local doc willing to prescribe hormones to someone in her late 70s, so I spent a year virtually deaf with increasing bouts of vertigo/vomiting. Once I got a prescription for temporarily large doses of hormones, the vomiting/vertigo ceased and, better yet, my hearing returned to the level where it had been prior to the year of isolation due to deafness. After a couple of months, I gradually cut the hormone dosage in half, and am now ready to try cutting it back again. Only one study about hormone levels and Meniere's has been done, that in China, but it is quite convincing.

Yet another thing is vestibular rehab. In order to live a normal, active life you need to learn to use your third balance system, proprioception. Then you need to due some exercises or work on it every day for the rest of your life: the rewards are great!

REPLY

Thank you @joyces I am also79 . Having attacks constantly dizzy terrible balance issues. I’ve tried almost everything and many doctors who don’t know how to treat it.I keep trying to find a solution. I’ve gone through all the balance therapy. One doctor who said to me I can’t help you anymore. That was very depressing! Nevertheless I still feel I have more life to live.

REPLY
@roselyn

Thank you @joyces I am also79 . Having attacks constantly dizzy terrible balance issues. I’ve tried almost everything and many doctors who don’t know how to treat it.I keep trying to find a solution. I’ve gone through all the balance therapy. One doctor who said to me I can’t help you anymore. That was very depressing! Nevertheless I still feel I have more life to live.

Jump to this post

Roselyn,

Even if you don't have Meniere's (80% of those so diagnosed do not actually have Meniere's), you can benefit from learning to use proprioception. When your primary inner ear balance system doesn't work or work well, you automatically use vision, your second balance system. That's very bad, because every time you move your head or your position in space, your focal point changes. Proprioception, simply put, is the information you receive from your feet, ankles, knees, hips, etc. If you stand on a windy point, you'll automatically lean into the wind just enough to avoid being blown away: that's proprioception.

I'm very lucky because one of the first/best vestibular clinics is in Portland, OR, only two hours from where I live. There are now vestibular or balance clinics in several places around the country. If there's one at all near you, get an appt. there and do the exercises they assign you. You will feel less dizzy and have decent balance within a couple of months of starting VRT (vestibular rehab) exercises EVERY DAY. Even if you aren't assigned/don't do specific eye/hand exercises, you'll find that your coordination improves there as well.

I've done daily VRT for nearly 40 years, went from being dizzy and disoriented most of the time with horrid back pain whenever I had to stand for a long time (I did trade shows back then) to being able to move normally in about a month after starting exercises. There were almost no VRT clinics or people who understood the process then, so I learned via e-mail. When I went bilateral three years ago, I went to the clinic for a refresher course as soon as I got on a good hormone replacement program (low hormone levels are what trigger Meniere's for me). I also learned that, with age, I have less feeling in my lower legs, so I was assigned new exercises to help me pay attention to what my stupid feet have to say. <g> Since I have to walk a quarter mile each way on our gravel road to pick up the mail, I walk to the mailbox with my eyes closed, peeking occasionally when I feel the texture of the gravel change to see which direction I've meandered off toward! While doing that, I concentrate on what my feet are feeling: I can tell when I'm no longer in the well-traveled single lane as the gravel is loose instead of being embedded. As I've done for nearly 40 years, I walk around in my house late at night with all the lights off (no ambient or street light here in the spruce woods).

I'll soon have my 80th birthday, but I'm still collecting fisheries data in a wild stream on our north coast, a place where we have installed ropes and use wading/hiking staffs to get around on the extremely steep slopes. I still hike in three miles (no cell reception or other people) to install temperature monitors, one of which requires crossing the lower mainstem of a sizeable river with big boulders and lots of current and then scrambling up above a waterfall. I fish for fun, fly fishing, which requires lots of wading, even in the surf at times. Once I got on a good hormone program, I've had no dizziness and feel confident moving around. This is my 30th year of data collection on the same river–all of those years due to daily VRT exercises.

If there's no VRT facility near you, ask, and I'll write up some starter exercises: walking with your eyes closed is done only AFTER you've done some basic work standing in place.

REPLY

Thank you your comments. I haven’t heard of the low hormone making my condition worse but I will try to look into that. I went through the exercises . At the time I thought it helped. I can barely walk in a straight line. It’s been about seven years since I first went through the therapy.

REPLY

I’m also wondering if anyone has had the gentamicin surgery in the ear. I’ve heard of a procedure where the doctor puts a wick for the gentamicin to slowly go in your ear .

REPLY
Please sign in or register to post a reply.