From the onset (early 2005), I was pretty much bedridden for a while. I tried my best to make it to work, but I gradually faded and failed. I had some emergency room visits. I needed assistance to walk at times. That was the first 3 months.
One of the toughest things after the first 3 months was the unpredictable nature. There were some days where I could get out and do some things on a limited basis, and many, many days where I was homebound. I wrote articles from home in 2005 and 2006, but it was tough. Write for a while, then go lay down for a few hours. Repeat the cycle. This went on for a long time. I was on my back throughout much of the winter of 2005/2006. Hospitalized once.
In early 2007, I progressed enough to be able to work about 15 hours per week. The good thing about it was that I could pick the days I would work. If I was having a real bad day, didn’t have to work, etc. I was able to do that for half the year.
Made some improvements with a doc starting in the summer of 2007. Improved to the point of being able to work in a slow paced occupation at about 1/4 my normal pay starting in early 2008. Ended up having some problems with that doc, saw another one, and then met with another one in June/July 2008. He’s my doc now, and probably always will be. I’m never “normal”, but the level of progress I’ve made since working with him has been immense.
In short, I felt very, very hopeless and incredibly frustrated for a few years, and now I have lots and lots of hope.
Constant imbalance/disequilibrium with a few episodes of full blown vertigo once in a while. Mostly a tilting, rocking feeling. Rotational vertigo is pretty rare.
Aural fullness - fluctuates
Some hearing loss - not too bad
Occasional, wicked headaches - vision would get a little blurry when that comes on
Used to get some nausea, but real rare now
Tinnitus --but not that bad
Occasional audble clicking in both ears with rhythmic, visible bouncing/jerking of the soft palate - palatal myoclonus
Pressure in the head, neck, and upper chest area - can crack my chest/upper body at times
I used to get pins and needles tingling in my hands and feet, and other spots as well. I’ll stil get what seem to be myoclonic jerks behind my shoulders once in a while. Rare, though. Used to get 'em all over when I first came down with this in 2005 - legs, etc.