I've had labyrinthitis about all my life. So bad that I had to have therapy at 7th grade to learn to adapt. At this point in my life I stay off ladders and roofs etc I also now wear corrective insoles thanks to what it's done to my feet and ankles. The shaking is Myoclonic Seizures. Here is a description Myoclonus Fact Sheet scroll down to Stimulus-sensitive myoclonus. It's like getting popped by a cattle prod or like you say a bucket of ice poured on you. Painelss but a royal pain. I'm lucky mine stays above my elbows or I would not be able to drive. The seizures can be several a minute and last maybe 1-2 seconds each.
Cure? There isn't one. Treatment? I highly recommend Xanax. But you must understand how to take it or it won't work right. It taks about .5mg for say a man weighing 175-250 or so taken 4 times a day or once every six hours. This is a very low dosage. Xanax is a coousin to Valium. It tones down the sensory system and reduces seizure activity. Really any Benzo helps. But the trick is a low but consistent dosage in the blood stream. Also try to limit exposures to triggers. You won't build a tolorance and Cognitive Behavioral Therapy will not work with this because it is permenant Neurological damage. It will no more help you than hitting your fingers hard with a hammer will build a tolorence to pain.
I'm also amazed you don't have hearing loss. My tinnitus is also my in my worse hearing range. I want to caution you about a few things. Axniety goes hand and hand with this disorder. Many doctors use a SSRI protocol to treat anxiety. Don't let them do it to you. For some reason folks like us are prone to a severe adverse reaction called Serotonin Syndrome. It's like taking LSD. Benzo's like Xanax also help prevent some OTC cold medications from setting it off. I've seen it first hand this isn't Tin Foil. It happened to my wife who is a quad and has Neurological damage. It darn near killed her and the doctors didn't catch on. I did. BTW this might help you too COGNITIVE ASPECTS OF VESTIBULAR DISORDERS
They know more now than they did 15 years ago. The way I got started getting the right answers was a book called Phobia Free by Harold Levinson MD. In the 1970's he accidently discovered the Vestibular and anxiety link.
I’m amazed you’re able to drive at all with Laby. No way in hell I could. I have enough trouble even remaining stationary in front of a screen without having a spell. If that disorientation occurred when I was out in traffic, I’d end up killing someone, probably myself.
As for the SSRI, that’s too late. I was on Lexapro for nearly 2 years. I had to go on it or I was in grave danger because I could no longer get out, and I was well over a decade past needing serious medical care for other symptoms. Yes, I do have anxiety (since I was 11, so that’s about 24 years), quite severe (probably the most severe any of my doctors have ever seen) and routinely have epic bad panic attacks. They are absolutely crippling. Combine that with a smorgasbord of side issues and you get the idea. On the Lexapro and with behavioral therapy, I was able to get out (and some months after, train myself so that I could at least ride in a car), and I was literally unable to get out for the better part of a decade. It was just that bad.
For part of ‘04-’06 I was able to get out and travel for the first time in a decade. I decided after having enough of some of the worst side effects (violent nightmares, zombieish feelings, desire to sleep upwards of 15 hours a day, and all the nasty stomach stuff/digestive problems and muscle tension, nevermind the weight gain, and I wasn’t heavy to begin with). Coasted for 6 months with no problem and finally crashed and became extremely ill. And so I’m back in the same boat as I was prior to ‘04. More than likely will have to go on the Lexapro again just to be able to get out to doctors again. An awful nightmare.
The problem with the Labyrinthitis is that, as I’m sure you’ve noticed, that depending upon your level of anxiety, it can either be relatively mild or absolutely crippling (to the point you’re on a bed or on the floor so nauseous and disoriented, you’re just trying to keep the contents of your stomach in). When people ask what a moderate case of Laby is, I offer this suggestion to them. Spin yourself around several times. Stop yourself suddenly and orient yourself to the room looking all around, and you get an idea. Just to have that sensation of falling when you’re sitting firmly upright in a chair... ugh. I hold my head and neck so rigidly I frequently get neckache and back cramps as a result, too. Fun stuff.
As for the low frequency stuff, I live in Nashville, which is, as you know, a bit larger than Knoxville and Oak Ridge. Given this part of town, you can’t escape the idiots driving down the street with their tricked-out radios at full tilt. I’m to the point now that I believe those types of stereos should be completely outlawed in cars. They’re not only disruptive to the driver, they’re also extremely distracting to others. For that matter, they should probably even be outlawed in apartments, if not homes that are less than 100 feet from another. Nobody, and I mean nobody has any business being out on the road with that. It’s a threat to the public safety, and for people like us with this condition, it’s a physical assault.