My vestibular journey began with a box of cereal. I bent over to put it away on a lower shelf and was hit with a true vertigo attack. The room was spinning and I couldn’t stand up. Fortunately, my husband was nearby; he caught me and helped me to a chair. That was two years ago. I started with a trip to my primary physician where I was diagnosed with a case of inner ear infection. I took the medication prescribed but of course, it didn’t help. The vertigo subsided but I was left feeling constantly dizzy and lightheaded – as though I had had too much to drink. I was unable to do anything but sit in a chair. I especially needed help taking a shower – I couldn’t even tilt my head back in the shower unaided to wash my hair. I became more dizzy and incapacitated. One evening it was so bad my husband took me to an urgent care facility. I was transferred to the hospital ER where I had a CT scan to rule out brain tumor, stroke etc. It was clear. They gave me meclizine which turned me into a zombie but did nothing for the dizziness.
After an appointment with a specialist, she diagnosed me with vestibular neuritis and prescribed a course of prednisone and further testing. Somehow, I made it through the testing even though the tests brought on a rapid and severe vertigo attack. The prednisone did nothing.
Oddly enough, being in the car made me feel better which was fortunate because we had planned to spend the winter in Florida (we live in upstate NY). I found the VeDA website and used it to find a specialist in the part of Florida where we were spending the winter. He prescribed a course of PT with a therapist certified in balance disorders. When I went in for the appointment I was using a cane in one hand and holding on to my husband’s arm with the other. The doctor and the therapist both insisted I discard the cane and my husband’s arm. The therapy was the first and only thing that helped me. I go back to my exercises from time to time.
What has helped most is VeDA –their website, their Facebook page and most especially the online support group I attend. If I wake up in the middle of the night with my tinnitus totally out of control I can go to the Facebook page and there is always someone online with support, a helpful suggestion or just a sympathetic ear. I learned from the support group that the bitterness, anger and sadness I was feeling was really mourning for the lifestyle I no longer was enjoying. It helped me accept my new reality – constant dizziness. I am dizzy every day, 24/7..sometimes more, sometimes less but it is always there. I think I am walking in a straight line, but actually am weaving and ‘tilting.’ I finally learned to understand what my triggers are and avoid them.
I recently went through another round of physical therapy and my NY therapist suggested my dizziness may be related to neck issues. We are currently exploring that. In my case, my situation may have multiple causes and therefore multiple treatments. I have learned to cope with it and make allowances for it. Being an invisible illness I get the usual comments from friends on how well I look even though I am using a lot of energy and concentration to merely stand up. The online support group has been helpful in presenting strategies for coping with all that – using adaptive devices if needed, take a rest when you need to without apologizing etc.
It is difficult to go from doctor to doctor to find help. Vestibular issues are not well understood. It can be a lonely journey. But VeDA has helped me to never give up, no matter how bad I am feeling, or how many events I have been unable to attend. It is a fine line between acceptance of this condition and not giving up hope. VeDA has helped me, and continues to help me, not give up hope.