May used to be my favorite month. Mild spring weather in New Jersey. Freshly planted flowers. Open windows. I always looked forward to May. That changed in 2013. May now represents the anniversary of the month I became chronically dizzy.
I awoke one morning and had trouble walking. My head felt weird. Whoa! What is this? Could it be allergies? I had managed allergy issues for years, but had never experienced dizziness. Now I felt like I was walking on a moving floor. Five years earlier I had an honest to goodness, room spinning, I’m dying, what the heck is this, kind of vertigo. This was different. I wasn’t spinning, I was terribly off balance. My first reaction was “something is really wrong!” I have a life long history of anxiety that I have learned to manage, but it is always my go-to emotion. I was dealing with this crazy dizziness and the overwhelming anxiety that I had something dramatic like MS or a brain tumor. I was a mess!
What followed were months of seeing doctors and having tests.
My primary doctor said “vertigo” and sent me to a physical therapist, who knew little about vestibular issues. He said I had a pinched nerve. As he worked on my neck, I would get so dizzy I could hardly walk. “I think you are overly anxious” he would say. Not helpful. I already knew I was freaking out because of the dizziness and nausea. I decided to see an ENT. By this time the ringing in my ears was deafening. The ENT ordered balance and hearing tests and an MRI with and without contrast – which added to my anxiety! In the middle of all of this, my beloved 17 year old cat died.
By the end of July, I had shut down emotionally. I forced myself to leave my house for doctors’ appointments and a weekly visit with a psychologist. At the end of August the test results were in – Unilateral Vestibular Hypofunction, most likely from a virus. The ENT asked if I was willing to try Vestibular Rehabilitation Therapy. After four months of unrelenting nausea, disequilibrium, tinnitus and anxiety that ruled my every waking hour, I would have tried anything.
That’s when I met Dr. Jennifer Liss. Jen is a certified Vestibular Rehabilitation Therapist. We began working together in September 2013. The anxiety was crushing. I was sure I was one stumble away from falling. Jen understood what I was going through. She gave me hope. I started VRT 2 times a week and at home 4 times a day. I walked 20 minutes a day, which was not easy! I forced myself to eat. I did not improve as everyone thought I would.
In January, my ENT sent me to a neuro ophthalmologist. He “guessed” I had a form of Meniere’s disease. The ENT and Jen said “not Meniere’s.” I continued with VRT. I went gluten free and the nausea subsided. I got a new cat that I named Spencer – joy wrapped in fur! In March, Jen sent me to a Vision Therapy Specialist. He was “not surprised VRT wasn’t working because I wasn’t wearing my glasses.” I had not been wearing my glasses because they are trifocals. Turns out people with vestibular problems should not wear trifocals. He sent me to my eye doctor for 3 sets of glasses: near, mid and far distance. VRT with the new glasses resulted in noticeable progress until spring allergies hit. Back to nausea and dizziness! Now we are pursuing allergy testing. I keep believing we’ll find the root cause. I keep moving forward.
I was 66 when this started. I’ll be 68 as you read this story. Luckily I was retired. I am much smarter now than I was at the beginning of this journey. I’ve lost 45 pounds (silver lining). I started yoga twice a week, a true blessing in my life! I meditate, and I walk 6000 steps a day (yep, got one of those step counters!). I’ve accepted that although my friends and family want to understand, they don’t. I acknowledge that I have a chronic, incurable, non-fatal, miserable invisible illness. I am grateful beyond words to VeDA and my Facebook support group! I am scared at night and hopeful in the morning. And most of all I am deeply sympathetic to all the others, especially the younger people, who have to deal with this while working full-time and raising families. I don’t know how you do it!