I am 15 years old and I was diagnosed with Postural Orthostatic Tachycardia Syndrome this past March, and have had the clinical symptoms of this syndrome since June of 2018.
In June of 2018, I was preparing for final exams for my last year in middle school. I will never forget that Saturday in June when my life changed forever. While I was studying I noticed this strange feeling in my beck/neck area, and it almost felt like tingling or “an electric shock”. The only way I could describe this feeling was “I was going to pass out”. After this event, I became so weak I couldn’t leave the couch, and I kept having these “attacks” of just feeling almost disoriented. The following Monday, I was taken to my pediatrician and he diagnosed me with a
Virus and instructed my parents and I to keep track of my blood pressure. However, my symptoms from this “virus” never got better.
A few weeks later, I went back to my pediatrician to get answers as to why I was not getting better, and the doctor decided to run blood tests. On July 12, 2018, my doctor called and said I had tested positive for mononucleosis, but he said it was “in its late stages” and that it was a recent or past infection. However, during this time of being diagnosed with “mono”, I noticed my heart rate was very fast, especially on standing. I was aware of POTS from my readings on medical conditions and illnesses. During this particular summer, I remember standing up to go outside and my heart rate would be pounding. However, I did not report these symptoms to my doctor as it slipped my mind when appointments came up for my mono checkups.
In the early morning hours of July 25, 2018, I woke up drenched in sweat, having a sense of tremor or anxiousness, nauseous, trouble breathing, and it felt as if my throat was closing off. I was taken to the emergency room where I was given fluids and told it was just the mono. As July turned into August (around two months since my initial symptoms), my “mono” was not getting any better, I was still extremely fatigued, and I returned to school struggling through each day. During this time, I developed anxiety and depression from being sick for so long. New symptoms also started to appear such as light sensitivity, blurry vision, brain fog, derealization (caused by the brain fog and cloudy thinking), continued fatigue, and sleeping problems.
Fast forward to February 2019, I was no better. This was 8 months after my initial onset of symptoms. Frustrated, I went back to my doctor and he was concerned. He ran another mono test, looking for “chronic mono”, thyroid tests, and checked my vitamin b level. All my blood work came back fine, however, the mono test showed I was positive for a current ongoing infection. This was a very interesting finding as the past bloodwork from months ago showed the mono was not a current infection, but a recent or past infection. Lacking any answers, my doctor referred me to an infectious disease doctor.
Fortunately, the infectious disease doctor I saw in March of 2019 was experienced in pediatrics, and had just transferred to a hospital near me from the Mayo Clinic. Within the first 10 minutes of the appointment, he already knew the diagnosis. Postrual Orthostatic Tachycardia Syndrome. After checking my pulse while laying and standing, I was officially diagnosed. However, to be sure, he ran multiple rounds of blood work checking my immune system function. All this bloodwork came back perfect. I have been under his care and a cardiologist since. The treatment plan established included drinking lots of water, eating salty foods, and exercising.
8 months later, my orthostatic tachycardia is completely gone thanks to exercise, diet, and determination. Has anyone else had high mono levels with pots? Thanks