5 years ago I had my first episode of totally incapacitating vertigo with blinding headaches, nausea and vomiting. I had to miss my parent's 50th wedding anniversary cruise because of it. At the time and yearly since, I have had repeated rounds of MRI's, MRA's, ENG's, EEG's, blood work - you name it, I had it. Most of my doctors were afraid my cancer had come back which is bad enough going through the testing every 3 months then 6 months then yearly tests thinking it yourself but when your doctors think it too....yeah scarey.
I got a bit better over time. I can now drive up to 30 minutes and walk without hanging onto someone or something. But the vertigo would never go totally away and I would have to watch sudden movements, bending over and getting back up, or rolling in bed from one side to another. Car rides over 30 minutes will do me in unless I don't look out the window (I can read fine). All would send me into a spin. My ENT and neurologist told me then that since all my tests were clear of tumors, etc that it was probably Ménière's Disease but it was a diagnosis that would be made over time.
At least twice a year I would go into a what I term bad episode despite medication because I have episodes over 5 times daily but not rendering me totally incapacitated. I know when the bad ones would start as I learned the warning signs: first a fullness in my right ear with tinnitus and complete exhaustion even after sleeping for 8-10 hours, then it would be followed by headaches and a sensitivity to sounds and lights, then the vertigo would start in. I am currently at the tail end of an episode that has lasted 5 days.
I went to my neurologist last Friday after having the complete round of tests this past week during the episode. Ménière's Disease was finally diagnosed. This year my hearing test did show some loss of hearing in my right ear. The disease does that. My vertigo is what is called true vertigo - even with my eyes closed, everything spins and I mean spins. If my eyes are open, my brain tries to fight the spinning thus giving me the sensation that I am spinning in the opposite direction which then brings on the nausea. During the vertigo episodes, I get nystagmus where you can literally see my eyes bouncing from side to side (hubs and the kids love to watch my eyes bounce).
So with the definitive diagnosis do I have any different treatment? Some magical cure? Some magical drug? Nope. Same stuff - diuretic to help with the fluid balance (the vertigo seems to be an over accumulation of one of the inner ear fluids called endolymph. This excessive endolymph accumulates in the inner ear where the cells lie that provide hearing and balance. The pressure of the excess fluid disables these cells causing the loss of hearing and tinnitus); and Valium to calm the central nervous system. I usually only take the Valium at night because unless I am in an episode, I can control the vertigo during the day. But rolling during the night will wake me up every time.
The why of how I got this? No one knows. My neurologist relates it to an attack of viral labyrinthitis I had after flying with a bad cold then going on a cruise over 20 years ago coupled with the fact I have narrow eustachian tubes which block easily with allergies and colds. Dunno but just glad this episode is on its way out.
