Know you are not alone!
My story started 16 yrs ago when I went to bed fine and normal and woke up the next morning with my world out of control. The room was spinning so fast that I could not walk on my own. I told my (at that time) 15 yr old daughter that she had to take me to the hospital because something was wrong. When I got the to the emergency room they diagnosed me with Labryinthitis. They gave me medicine (Antivert) and told me to go home and rest. So, home I went to rest or so I thought. My daughter managed to get me to the couch and she got me a blanket. However, as soon as I laid head back to the arm of the couch I got so sick to my stomach that I had to hurry to the bathroom. Walking into furniture and using the walls to walk I finally got there. I sat on the floor and tried to get sick but nothing would come up. So there I sat, trying to get sick and the room spinning out of control. I remember sitting there on the floor crying because I truly thought i was losing my mind! Unfortunately I had to quit college because I couldn’t walk on my own for nothing. I couldn’t do much of anything and after six weeks I was still walking like I was drunk. After about eight weeks I finally started walking normal and could drive again. I ended up having this another three times.
About six years I started experiencing where if I rolled over to my right side I was fine but if I rolled to my left side again, things went out of control. I didn’t pay too much attention to it and honestly thought it was kinda funny that it worked like that. Then when I would try and rough house with my grandsons I would get vertigo and I would have to stop the playing until everything settled. I experienced this for a couple of years and finally had enough so i went to an ENT and was diagnosed with BPPV. He did an Epley maneuver and I was symptom free for four years. About three months ago I decided to lay on my floor, like I have many many times before, and put my feet on my the wall. When I got back up I had to use the wall to walk and the next day I couldn’t get out of bed and my eyes hurt so bad I couldn’t open them. I had the vertigo, dizziness, fogginess and just uneasy feeling almost every day. The days I had vertigo I couldn’t go to work otherwise I was there. Finally I went to the dr and they referred me to therapy. She did the Epley maneuver knew I was having an episode because of my eyes. Yep, I have nystagmus and she told me that that was the reason my eyes were hurting so bad. After that treatment I was lucky again it did the trick. I had other appointments and before my first one I had a little bit of dizziness but this was nothing to what I was used to. After that appointment there was nothing so they discharged me from anymore.
During this time, I looked for a support group because of the isolation you feel. There were no support groups close to me so I contacted VeDA and started a support group in my town.