"When EMS arrived, they thought I was having a stroke." - Tomika Wheeler's journey with POTS/Dysautonomia

My name is Tomika Wheeler, and I have POTS Syndrome/ Dysautonomia. I’m here to tell you my story on how I discovered I had POTS and the symptoms I experienced, as well as my experience with medical professionals throughout my journey. When I first showed symptoms of having POTS, I was 12 years old. I was experiencing severe migraines everyday as well as fainting spells that had no medical explanation. I saw a neurologist who diagnosed me with New Daily Persistent Migraines (NDPH) and told me I would grow out of it. As I got older and got more into sports, my symptoms went dormant and I stopped experiencing these fainting spells but, the migraines continued. I am now 29 years old, and all of my symptoms have returned worse than ever, as well as new symptoms arising that I had never experienced before. In 2022 I had weight loss surgery for separate health reasons. I was hoping this surgery would help me take my life back so that I could live a long, happy, and healthy life with my children. I wanted to be more involved with them physically. However, life had other plans for me.

Six months after having my gastric bypass surgery, I was living my daily normal life. I was at the store when my body started sweating and I became very dizzy. My heart was racing and everything around me looked like it was spinning. I took my kids to the car and we started to drive home so I could go lay down. We were 3 minutes away from home when I lost feeling in my face and arms. I started to panic because I had no clue what was happening to me. We made it to the driveway where my 8 year old son ran next door to get my neighbor to call 911. When EMS arrived, they thought I was having a stroke. After getting to the ER, they told me that this was all happening because my potassium was low. They told me to go home and take my vitamins and that I would be fine. I made it home with my husband and immediately had the same episode from earlier. Out of panic, we again called 911 and EMS came and got me again.

When I arrived back to the hospital, the nurses asked me what I was doing there again. They were very dismissive and seemed annoyed that I was back. The doctor came in and talked to me and this time he told me it was "...just anxiety." and I was discharged home. The next morning, another episode occurred. This time we went to a different hospital in hopes for better answers. This hospital also blamed it all on anxiety and told me to see a therapist. After seeing a therapist, she agreed with me that this was far more than anxiety.

I saw my primary care doctor who told me that my symptoms sounded a lot like POTS (Postural Orthostatic Tachycardia Syndrome.) She then referred me to a neurologist and a cardiologist. The neurologist diagnosed me with seizures without any evidence and the cardiologist told me POTS was not real. When I went back to see my primary doctor, she did not accept these answers and she referred me to a new cardiologist. It took this new cardiologist all of 10 minutes to diagnose me with POTS after doing what is called a “poor man’s” tilt table test, also known as the 10 minute standing test. This cardiologist has worked very hard to help me find proper treatment for my POTs but, so far we have had no luck managing my symptoms. He warned me that he will never be able to cure me but, hopes he can atleast help me improve my quality of life. Had I listened to all the doctors before him, I would still be undiagnosed without answers.

My advice to anyone looking for answers in their POTS journey, is to never stop advocating for yourself. You know your body better than anyone else and you know when something is not right. Do not let medical professionals gaslight you into thinking it’s all in your head or that it’s just “anxiety.” Trust your gut and keep pushing for answers. Don’t be afraid to find a new doctor if you need to. I promise there are doctors out there who are actually willing to listen to you and help you.