I am a Vestibular Warrior
I was a hairdresser and makeup artist for many years. My husband and I did a lot of traveling to different places – Italy, Dubai, France. All of that came to a halt when my vestibular migraine journey started 5 years ago.
It was so debilitating. I was dizzy almost every day. Besides the dizziness I had bouts of vertigo, imbalance, I couldn’t focus things were so blurry. I had head pressure, ear pressure, and neck pain. I felt like everything around me was moving but I was standing still. I also had this rocking sensation throughout my body. When I walked I felt as though I was walking on marshmallows. I had that Alice in Wonderland feeling. It was so frightening and hard to function daily. I had to leave my job. I couldn’t drive. I wanted to get better.
I had experienced dizziness at a young age. I would get debilitating migraines that went right into adulthood. In my teens and twenties I would get dizzy on elevators and escalators. Doctors then told me I had motion sickness.
My search to find the right doctor to help me 5 years ago was a challenge. I went to several different ENT doctors, otolaryngologist, neurologist, chiropractors, all in NewYork where I live. I even saw a doctor in California that was highly recommended. I had balance, hearing tests, MRIs, and blood workup. I honestly thought I had a brain tumor or MS. It was clear with the MRI and blood work that this was not the case.
One doctor thought I had Ménière’s disease with no hearing loss. He put me on a water pill, which was a disaster. Between all 5 years I have seen about 7 different doctors, but they still could not give me a clear diagnosis. I did physical therapy, which helped somewhat, though it occasionally made me feel worse. Maneuvers did not help at all. I was on the path thinking I was never going to get better. I got very bad depression and anxiety thinking that I was going to live the rest of my life like this.
I had a bad vertigo attack in the spring of 2022 that I put me in the hospital. They gave me anti-nausea medicine (meclizine), and anxiety medication. The only thing that worked was the anxiety medication. Weeks after that my husband, family and I were getting so frustrated that we couldn’t get to the bottom of what was really going on. My sister recommended a doctor in New York. Here we go again, I said to myself. But I went and brought all my test results that I had in a folder.
He reviewed everything and asked me about my family history. He was 100% sure that I had vestibular migraine. I felt this sigh of relief. All the weight I was carrying was lifted away, even though it wasn’t the greatest news of a diagnosis. It was out of the vertigo doctor’s hands, so he referred me to a neurologist who specializes in vestibular migraine. It was a long wait to get an appointment to see her, but it was worth it. She confirmed that I had vestibular migraine. She was so upbeat that she was going to help me get better. I started to cry in her office. She has been God-sent angel to me. I started on steroids, and now I am on migraine preventative medication and doing well on it. I can call her and she gets back to me right away. So comforting to know she’s there. She always gives me good advice. I am very grateful that I found her. I am also doing cognitive behavioral therapy, which is great!
I am on a migraine diet which is helpful. I eat all organic and I read labels on everything in stores. I watch my sodium, things with MSG, the list goes on. I am very careful of what I eat. I am also on magnesium 600mg a day and other vitamins. Food plays a big role in my healing. I workout about 4 to 5 times a week. I do yoga and I walk and run occasionally. My bad days are far and few. It took me a long time to get where I am now. I am healing, and every day my body is changing.
Words of wisdom: Don’t ever give up; the storm will pass.
I wish more doctors and people would get more education and awareness about vestibular disorders. Knowledge is powerful! If you are having a vestibular something, my heart goes out for you. There is always hope out there.
I am a Vestibular Warrior. 03/16/2023