I am so grateful to VeDA for being there for Vestibular patients who are struggling with the uncertainty of their condition. I’m glad I found a community of support, and happy I can share my story to help raise awareness about the difficulty of finding a diagnosis and living with a Vestibular Disorder.
I had a full life before vertigo, dizziness, vision loss and imbalance stole my freedom and financial security.
I have three biological children – two sons, Luke and Adam, and a daughter, Melissa. My home has always had an open door for at risk youth, many of whom are dealing with addiction and trying to stay in school and out of gangs. I enjoyed being physically fit and loved my job. I wasn’t even 50 when all of a sudden I started feeling like an old woman.
I already held degrees in Exercise and Health Science and was pursuing my Masters in Applied Gerontology. I had worked as the Fitness Coordinator at the Boys & Girls Club, lead health classes at my local senior center, and most recently was a biometrics screener, which required constant travel. My jobs allowed me to meet new people, help at risk youth, and bring about positive change. Essentially, I was getting paid to “play.”
Then, in 2013, while I was demonstrating a balance testing exercise, I noticed that I was falling to my right side. This was the first sign that something was very wrong with my vestibular system.
I had always been healthy, with the exception of migraines, which I’d had for the past 10 years. Then I noticed that I was having trouble driving at night and over bridges – lights were bouncing and I couldn’t see. I had planned on making an appointment with my doctor, but then my father passed away and I was consumed with grief and the logistics of managing his estate.
By the time I could spare a moment to take care of my own health, I could hardly walk and was falling down the stairs. However, there were no doctors available on my health plan, so I had to pay out of pocket just to get an appointment with a primary care physician (PCP).
My PCP had no experience with vestibular disorders, so she just gave me meds and referred me to a neurologist. My MRI came out normal, so the neurologist diagnosed me with BPPV and referred me to an ENT. The ENT gave me more meds, which didn’t help, then threw his hands up in the air and said he didn’t know what to do.
Next, he asked me if I was experiencing anxiety – of course I was! Who wouldn’t, with the scary symptoms I’d been having and no one to tell me what was going on. The inference, however, was that my symptoms were all in my head. Next he ordered a VNG test, diagnosed me with vestibular hypofunction, and referred me to a physical therapist (PT).
The PT was not specially trained in vestibular rehabilitation therapy, however. She did the Dix Hallpike maneuver to rule out BPPV and started me on visual therapy and basic balance training, but soon discharged me because she didn’t know what else to do and nothing she tried made any difference. Another dead end.
Finally, I learned about Emory University, which has a balance clinic renowned for its work with vestibular patients. Unfortunately, based on my VNG results, they said that didn’t think they could help me. I knew this was my only hope, so I persisted, and after two years was able to get an appointment with Dr. Jennifer Tirino in July, 2015. It took another year to get my testing completed.
Dr. Tirino had Emory do a complete battery of tests on me. I failed the posturography test miserably. My vHIT was off the scale (1 is normal; I scored 11), which indicated that I was legally blind when my head is in motion. I had zero reactivity to the caloric test (this time done with water; previous calorics had been done with air, which I now know is less accurate).
Dr. Tirino diagnosed me with complete bilateral vestibular loss, which is irreversible. She said she’d never seen a case so profound.
Of course, what I wanted to know was…what can you do about it? That’s when I learned that there are no easy fixes. Basically, I’m going to have to learn to live with it, to adjust to a “new normal.”
In the meantime, I lost my job because I couldn’t travel, which means losing my health insurance (which wasn’t helping much anyway).
In April, 2014 I applied for disability and was denied, twice. I’m now waiting for a hearing so a judge can review my case.
I’ve had to pay all of my therapy and most of my vestibular medical expenses out-of-pocket, $60,000 over the past three years. Now I’m faced with selling my house so I can use the equity to pay my monthly expenses. Basically, I’m broke.
As if anxiety over my health wasn’t enough, now I’m dealing with anxiety and depression because I don’t know how I’ll make ends meet for me and my family.
On the upside, I’ve been approved for a vocational rehabilitation program that will retrain me for limited part-time work that accommodates my special needs, though it will be at least 6 months before they can place me.
My children, extended children, and best friend, Alec, have been on this journey with me. It took over a year and the results of my tests for my oldest son to believe that my symptoms were real, that I wasn’t just being lazy. Now he has a child of his own, Lucas, who is the light of my life, though I hate that there are many things I can’t safely do with him because of my illness.
My youngest son, Adam, is 18-years old now. He is always worrying about me. He didn’t get the same opportunities other kids his age had because of my illness. I feel badly about that. He takes me hiking with my alpine sticks. He picks me up and encourages me to keep going when I fall. I can no longer look ahead while I walk so he stops and points out the things he knows I would enjoy.
My daughter, Melissa, is amazing! She has been and continues to be my rock. My extra kids have also been very supportive. I hate to think that they may lose their “safe space” if I have to sell my home.
Friends? They stopped calling because I had to cancel our plans all the time. I’m lucky, though – I have Alec. He has been my best friend and cheerleader. His unconditional, supportive attitude is a driving force that helps me adapt and overcome.
I still struggle daily with vertigo, dizziness, and imbalance. My eyes don’t work together, so I do vision therapy with Dr. Joe Rouw, a vision therapist. He and his wife have taken a personal interest in my case and have been studying possible therapies. We work on gaze stabilization and depth perception, and he is helping me try different prism lenses. I also do vestibular rehabilitation therapy exercises at home.
My muscles and joints often ache and I fatigue easily. Dr. Tirino says that for a normal person what I deal with would be like walking on a balance beam for eight hours straight. It’s completely draining, and some days I don’t know how I manage.
This disease has changed me so much. It’s hard to hold onto the person inside you. I used to hike and travel. Now, sometimes, I don’t know who I am. Just yesterday my oldest son said to me, “I don’t recognize you.”
The biggest frustration has been the complete lack of information, resources, and misunderstanding about vestibular disorders, not just among my friends and family, but within the medical community.
I am so grateful to VeDA for being there for vestibular patients who are struggling with the uncertainty of their condition. I’m glad I found a community of support, and happy I can share my story to help raise awareness about the difficulty of finding a diagnosis and living with a vestibular disorder.