- Updates made in 2/2015.
First, a word about how I am today in early 2015. 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.
I am considering having another gent injection in 2015 to take things down even further (I wish I had not taken so long to get them). In some ways I can be considered to be in what is called the "burnout" phase of my affected ear. However, I did decided to have a gent injection to help things along, I wish I had done them much earlier. MORE on gent injections here:
http://menieresandme.blogspot.com/2014/11/about-gentamicin-injections-and-why.html
I have daily tinnitus and 90% loss of usable hearing in my affected ear.
The rest of the story of how I got here:
Sooooo, I've had Meneire's Disease for 14 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 I started having them more often, about every 6 weeks, and my balance really began to go wiggy. 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...
After i hit that I place, 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: 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, nor have i tried antivirals. I wish I had tried antivirals, but that time is in the past now.
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. I am considering having another gent injection in 2015 to take things down even further.
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.
