Minor updates November 2019
What is my situation now?
I have 95% balance function loss and 88% hearing function (and tinnitus) loss in my Meniere's ear. I am unilateral. My right ear is normal. This loss of balance function is due to the progression of the disease in that ear and the fact I had one gentamicin injection.
Due to have so little balance function in that ear, in general, vertigo and dizziness are not a part of my daily life anymore (this is assuming I get enough sleep!)
My "bad ear" has had the balance function reduced to the point that even if I do have an attack it is very mild. Yes, I do still occasionally still have attacks and I can still feel them a little bit, and they can still sometimes make me sick. But no rotational vertigo anymore.
I rarely have to leave work, and when I do a long nap at home usually helps enough to keep me going. I miss maybe 2-4 days a year for Meniere's reasons, and usually I only miss a part of a day. And it is usually because I feel "off" due to being overtired.
Thanks to aggressive vestibular rehabilitation therapy both with a physical therapist and on my own I compensate very well for the loss of balance function in my affected ear.
I can do almost anything I wish (except maybe run an obstacle course in a very dark room! LOL). This took time and effort. My brain had to retrain itself. But i DON'T have to avoid shopping or crowds or concerts, or really anything, etc..
I recently rode all the rides at Disneyland for example. A few like Space Mountain I could only ride once due to feeling off for a bit after riding it, but in general I did great. I did take one meclizine during the day.
I am considering having another gent injection or even a labyrnthectomy to take things down even further. To get away from those few times things do bother me, but it is not an urgent matter.
I have daily tinnitus and 90% loss of usable hearing in my affected ear. I do NOT think the gent did much damage to my hearing, it was the disease itself.
Sure, if i were to go bilateral and get things cooking in my good ear that would really really suck, but so far so good for me on that front.
So... how did i get to this place of stability? Here is my history!
I've had Meneire's Disease for 18 years. In that time it has been unilateral (only affecting my left ear). The first 4-5 years I had 4-6 hour long VIOLENT rotational vertigo attacks every 3-4 months with almost no symptoms in between.
Then in 2004ish I started having them more often, about every 6 weeks, and my balance really began to go wiggy. Up to that point I had tried diuretics, lifestyle changes, allergy shots, and the Meniett in an effort to reduce symptoms. Some of them seemed to work some of the time... but I was still having attacks.
I had an ENG in 2005 and it showed 96% measurable loss (kind of what is known as "burnout" ) Now an ENG only measures a portion of your balance function, there is no test for all of your balance function... I was told by Dr's that the disorder had really gone after my balance organ more aggressively than in some patients.
After I hit that I place of balance loss, I stopped having the big knock down attacks. Sure I'd have attacks, but it was more like really bad carsickness instead of the rotational vertigo. I couldn't go to work, but the vomiting stopped. I felt like that should kind of be considered "burnout." Where the disease itself has destroyed your balance function to the point the disease becomes more manageable. Then in the last 6-7 months of 2008 things changed again.
In 2008 and 2009, I almost never had long bursts of rotational vertigo or MM symptoms. Instead I had "quick hits" of various types.
All of these seem to be most common when I have eye strain - like when I'm using a computer to much (which is all I do in my job, so good times for me!)
The types are:
Nystagmus burst: this terrific little # is a quick hit of nystagmus (uncontrolled eye jerks) for anywhere from 10-40 seconds. During these I can't see clearly or walk, but am not having rotational vertigo. Afterward my eyes are sore and I am nauseous.
Rotational Vertigo Burst: Rotational vertigo AND nystagmus for 30 sec to 3 minutes. That causes me extreme nausea and I usually have to go close my eyes someplace for 30 minutes. This has actually happened when I was driving a few times and that is scary.
A Rotational Vertigo "Jerk": Rotational vertigo that seems somehow involved with the saccule that causes me to almost fall or stumble. There are rotational vertigo symptoms but they only last a few seconds, but I have like half a drop attack, I am jerked toward the ground.
A True Drop Attack (turmarkin otolithic crisis): This has happened once. I was walking along... and then I wasn't. I fell backwards hard. There was no rotational vertigo. I just fell. Hit my head too.
At this point this super fun stew of symptoms has finally pushed me to the edge where I am willing to address it through destructive means. At first I tried all the other standard treatments I am aware of : diuretics, allergy shots, lifestyle changes, trigger avoidance, Meniett Device. I have not tried sac shunt or decompression
My right ear continues to be fully functional. At first I panicked and wanted to do a VNS RIGHT NOW... but my Dr talked me down and
I decided to do a course of low dose GENT injections over the a few months. I had an injection on 2/5/09. It HELPED.
All of the symptoms I mention above were greatly reduced. I still have attacks and I can still feel them and they can still make me sick, but I rarely have to leave work and when I do a long nap usually helps enough to keep me going.
Remember, for ME I waited long enough to have the injection that the disease itself had destroyed much of my balance function already. I wish I had not waited so long to get the injections.
Much more about gent injections here:
http://menieresandme.blogspot.com/2014/11/about-gentamicin-injections-and-why.html
An introduction to Meniere's and the steps of treatment:
http://menieresandme.blogspot.com/2014/11/updated-introduction-to-menieres.html
