THe start
I have Postural Orthostatic Tachycardia Syndrome.
Prior to getting POTS, I was a 13-year-old, a high-level volleyball player on a club team that qualified for the Junior Nationals in Minnesota, a top swimmer in the LA County Junior Lifeguard Program, a violist in the String Ensemble, as well as a straight-A student. The reason I'm including this information is that my doctor told me many POTS patients are considered high achievers.
In early May of 2014, I had my braces taken off and my third Gardasil shot. I started to have flu-like symptoms the next day (congestion, sore throat, and a small stomach ache) but ignored them because I was going to a friend’s birthday party. When I came back I felt much worse and had a headache. I had diarrhea when I woke up in the morning.
The next four mornings I felt the same, and missed an important orchestra performance and two days of school. I had another orchestra performance later in the week, so I tried to go to school. Five minutes into first period I left because I had a bad headache, was a little woozy, and overall felt sick with fatigue.
My mom took me to my regular pediatrician. Her diagnosis was that I had a virus. She did a strep throat test and a stool sample (checking for a parasite because of the diarrhea) which both came out negative.
I still felt sick after that, still had the on and off headaches, and wasn’t getting better. My mom called my pediatrician a week later insisting on blood work. The blood work came back normal, except for slightly high liver enzymes.
We waited another week and I still wasn’t feeling much better except the stomach ache and sore throat were both gone. I had a constant headache everyday and would complain to my mom that my body just felt sick. I was eating normally though. At this point it had been about three weeks out of school with the symptoms of feeling sick with a constant headache. Every once in a while, I would stand up after lying down for a long time and start to feel a little bit dizzy.
My mom started taking me to specialists at what are considered the top children’s facilities in Los Angeles. Different doctors trying to figure out what I had were constantly drawing my blood. The doctors tested me for every possible virus that they could think of, but everything came out negative. I had a brain MRI, an ECG, an EKG, and all of those were normal as well. The only test that got closer to my true diagnosis was when a doctor took my blood pressure lying down, sitting, and standing. My blood pressure dropped by a lot after going from sitting to standing. He knew that something was wrong but didn’t exactly know what.
All of these doctors and specialists I saw agreed that I had Post Viral Syndrome, meaning I had an original flu/cold virus in early May and some of the symptoms were still lingering.
Throughout all of this, my mom was put in touch with friends of friends whose daughters had been sick for a long time. In one of those conversations, the mother described her daughter’s symptoms as extreme fatigue, dizziness, and fingers/toes tingling, and Mayo Clinic had diagnosed her with POTS. Because my symptoms were completely different (constant headache and sick feeling), my mom dismissed the possibility of me having POTS also. She kept it in her head, though, that Mayo Clinic was the next step for a diagnosis as she didn’t believe that I had Post Viral Syndrome.
My mom was still calling doctors at that time. Two of the doctors I ended up seeing suggested I see a therapist. My mom knew this was not all in my head. I missed the last two months of school, attending the Junior Nationals with my volleyball team, and many fun events like a good friends’ going away party. I still had I constant headache and overall sick feeling, and was not improving day to day (but there were some days that were better than others). So my mom started the application and acceptance process at Mayo Clinic in Rochester, Minnesota, and due to a cancellation, I was able to go there in the beginning of July. It had been two months of sickness.
While I was there, they did many tests on me trying to figure out what I had, including the tilt table test. My blood pressure went from 112/50 lying down, to 10 minutes later, 66/0 with a 70-degree tilt up. My pulse went from 72 lying down, to 135 with the tilt up. This determined that I had POTS. I also did an exercise stress test and felt so sick and dizzy afterward that my mom took me to the emergency room where they gave me IV fluid. I started Mayo Clinic’s POTS treatment the next day and almost immediately I was feeling better. While I was in Rochester I even walked around a street fair, which would not have been possible even a few days before.
It has been two months since diagnosis and beginning the treatment. I am not able to do everything I used to, but I feel great overall and am working up to all of my previous activities. I attend club volleyball practices without limitations, am working on my cardiovascular endurance at the gym, and started back at junior high school.
I hope my story will help others who have POTS, or have been incorrectly diagnosed with Post Viral Syndrome or Chronic Fatigue and whose doctors have not considered POTS as an option.
Prior to getting POTS, I was a 13-year-old, a high-level volleyball player on a club team that qualified for the Junior Nationals in Minnesota, a top swimmer in the LA County Junior Lifeguard Program, a violist in the String Ensemble, as well as a straight-A student. The reason I'm including this information is that my doctor told me many POTS patients are considered high achievers.
In early May of 2014, I had my braces taken off and my third Gardasil shot. I started to have flu-like symptoms the next day (congestion, sore throat, and a small stomach ache) but ignored them because I was going to a friend’s birthday party. When I came back I felt much worse and had a headache. I had diarrhea when I woke up in the morning.
The next four mornings I felt the same, and missed an important orchestra performance and two days of school. I had another orchestra performance later in the week, so I tried to go to school. Five minutes into first period I left because I had a bad headache, was a little woozy, and overall felt sick with fatigue.
My mom took me to my regular pediatrician. Her diagnosis was that I had a virus. She did a strep throat test and a stool sample (checking for a parasite because of the diarrhea) which both came out negative.
I still felt sick after that, still had the on and off headaches, and wasn’t getting better. My mom called my pediatrician a week later insisting on blood work. The blood work came back normal, except for slightly high liver enzymes.
We waited another week and I still wasn’t feeling much better except the stomach ache and sore throat were both gone. I had a constant headache everyday and would complain to my mom that my body just felt sick. I was eating normally though. At this point it had been about three weeks out of school with the symptoms of feeling sick with a constant headache. Every once in a while, I would stand up after lying down for a long time and start to feel a little bit dizzy.
My mom started taking me to specialists at what are considered the top children’s facilities in Los Angeles. Different doctors trying to figure out what I had were constantly drawing my blood. The doctors tested me for every possible virus that they could think of, but everything came out negative. I had a brain MRI, an ECG, an EKG, and all of those were normal as well. The only test that got closer to my true diagnosis was when a doctor took my blood pressure lying down, sitting, and standing. My blood pressure dropped by a lot after going from sitting to standing. He knew that something was wrong but didn’t exactly know what.
All of these doctors and specialists I saw agreed that I had Post Viral Syndrome, meaning I had an original flu/cold virus in early May and some of the symptoms were still lingering.
Throughout all of this, my mom was put in touch with friends of friends whose daughters had been sick for a long time. In one of those conversations, the mother described her daughter’s symptoms as extreme fatigue, dizziness, and fingers/toes tingling, and Mayo Clinic had diagnosed her with POTS. Because my symptoms were completely different (constant headache and sick feeling), my mom dismissed the possibility of me having POTS also. She kept it in her head, though, that Mayo Clinic was the next step for a diagnosis as she didn’t believe that I had Post Viral Syndrome.
My mom was still calling doctors at that time. Two of the doctors I ended up seeing suggested I see a therapist. My mom knew this was not all in my head. I missed the last two months of school, attending the Junior Nationals with my volleyball team, and many fun events like a good friends’ going away party. I still had I constant headache and overall sick feeling, and was not improving day to day (but there were some days that were better than others). So my mom started the application and acceptance process at Mayo Clinic in Rochester, Minnesota, and due to a cancellation, I was able to go there in the beginning of July. It had been two months of sickness.
While I was there, they did many tests on me trying to figure out what I had, including the tilt table test. My blood pressure went from 112/50 lying down, to 10 minutes later, 66/0 with a 70-degree tilt up. My pulse went from 72 lying down, to 135 with the tilt up. This determined that I had POTS. I also did an exercise stress test and felt so sick and dizzy afterward that my mom took me to the emergency room where they gave me IV fluid. I started Mayo Clinic’s POTS treatment the next day and almost immediately I was feeling better. While I was in Rochester I even walked around a street fair, which would not have been possible even a few days before.
It has been two months since diagnosis and beginning the treatment. I am not able to do everything I used to, but I feel great overall and am working up to all of my previous activities. I attend club volleyball practices without limitations, am working on my cardiovascular endurance at the gym, and started back at junior high school.
I hope my story will help others who have POTS, or have been incorrectly diagnosed with Post Viral Syndrome or Chronic Fatigue and whose doctors have not considered POTS as an option.
