From fully grounded at 40 yrs old to losing myself in an instant- my journey with VM and PPPD

Life is beautiful and hard even amidst the dizziness.

Age: 50

Diagnosis: Vestibular Migraine

I was trained as a Physician Assistant and worked as a PA-C for many years while mothering 2 children. My husband and I loved to travel, exercise and be involved in our community. On a 40th birthday trip to NYC I had a choking episode that caused a brief airway obstruction. Three days later I found myself in the ER with vertigo, dizziness, head pain and nausea. This was the beginning of my dizziness journey. For many months I went undiagnosed and continued to have daily symptoms of dizziness, nausea and head/neck pain. I lost 30 pounds and began to loose the ability to drive and care for my family. Determined to find answers I visited multiple practitioners and received many mis-diagnoses. Everything from meningitis to seizure disorders. I endured multiple tests and procedures including blood patches for a suspected Cerebral Spinal Cord leak, steroid injections in my eardrum, bedrest for 10 days, and a slew of medications. I finally found Dr. Daniel Gold, DO at the Dept of Neurology at Johns Hopkins Medical Center. Dr. Gold diagnosed me with Vestibular Migraine and eventually PPPD. While I was relieved to finally have a diagnosis I didn’t realize how challenging they would be to treat and to live with. For years I tried numerous medications and procedures to find relief. Those who suffer from VM know that medications can be very hard to tolerate due to side effects. This lead to failure after failure re: treatments.

My life as it existed before my diagnosis was no longer and I grieved this loss with the help of a counselor. I was a very active woman with a full schedule. This changed as I was unable to tolerate certain activities, even simple things like loading the dishwasher or taking clothes out of the dryer were extremely hard. I have changed doctors many times and am now receiving treatment at the Jefferson Headache Center. One of the biggest successful therapies I started over a year ago was VRT (Vestibular Rehabilitation Therapy). This is specific to vestibular patients and it has helped me modify my physical activities so that I can exercise and be active again. This also gave me back some confidence in my body and agency over my life. Although I have a very different looking life than I did 10 years ago I have learned to embrace the things that I can do and I’m learning to love the person that I am, vestibular disorder and all. My worth is not determined by what I can accomplish but how I treat myself and others. To find others like me was a huge comfort and the VeDA organization was a wealth of knowledge for me. Yes, my life is very different than it was and not what I expected, however I am learning to navigate this world with a new set of rules and a renewed hope that life is beautiful even amidst the dizziness.