‘You don’t look good.’ I woke up on the floor, inches away from a brain bleed. No one came for me.’: Teen diagnosed with POTS and Ehlers-Danlos Syndrome, ‘My story isn’t over yet’

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“‘Taralynn, come up here sweetie.’ I walked over to my first-grade teacher’s desk like I did almost every day.
‘Why don’t you head to the nurse now?’ she would say with a kind-hearted smile. I would give a light smile and head out the door. I would always wonder how she knew. How could she possibly know I was sick before I even felt it? As I walked down the same hallway I did every day, heading to the same place I spent most of my school days in, I felt my cheeks start to burn and sweat trickled on my forehead. ‘She was right again,’ I would think to myself. I guess she had become used to the signs of when my fever would spike.

Courtesy of Tara Bie

Growing up, I was relatively used to having weird pain and symptoms. I was diagnosed with chronic migraines at five years old, making strange syndromes such as Periodic Fever Syndrome, (which I suffered from all through first grade) very normal. I spent most of elementary school in the nurse’s office, which at the time, I never minded. I was able to miss class, lay down in the air condition, and have my own shelf for my drinks in the nurse’s fridge. I never really stressed about it until I entered 5th grade.

Courtesy of Tara Bie

I decided I wanted to join a select chorus group. At the time, I remember just wanting to be with my friends and do what they did. My parents and the nurses were very hesitant about it. Their main concern was staying later at school without a break would trigger a chronic migraine. I remember how deafening it felt to feel different. I spent a lot of time begging for them to let me try. Finally, my parents talked with the music teacher and they agreed I would be able to still be a part of the select chorus. I would just leave a little earlier from each practice. The first half of the year went great, and I remember the happiness and joy I felt being a part of something.

Courtesy of Tara Bie

Coming back from Christmas break, our group spent the days non stop practicing for the St. Patrick Day’s Breakfast we would host every year. We practiced our songs and worked on the solos. During this time, my health was slowly decreasing. I was losing weight and missing school a few days a week. The week of the big breakfast I experienced one of the worst migraines I ever felt. I was in bed all week but when Friday rolled around, I insisted on going. My little 11-year-old brain saw this as the biggest deal in the world. I barely remember the morning. We got on stage and sang a few songs. The soloist went up to start ‘O Danny Boy’ and just as the piano started, everything went black.

That was it, my first experience with syncope. Throughout the rest of the year, I spent most days catching up on school work from my bed. I experienced every side effect to every medication I was put on. I lost weight at a rapid rate and spent almost every day in bed sleeping off a migraine. After a few months, I slowly saw relief and by the end of the school year, I was able to attend most of the ‘end of elementary school’ activities. I was even able to be in my school’s play, although I did spend most of the play sitting backstage. The weight did not come back easy, but during that whole year, I don’t even think I realized how sick I truly was.

Luckily, most of my symptoms were not too prevalent in my three years of middle school. I did experience one or two concussions during sports, fracture my knee, and other random injuries. However, it was never anything serious.

Courtesy of Tara Bie

During my freshman year of high school, I ended up getting a concussion during a basketball game later in the season. I was home for a few weeks after the injury happened and one night, I was feeling practically better so I decided to take a shower one night. All of a sudden, I was extremely nauseous. I sat on the floor and the next thing I remember was the voice of my mom screaming. I was rushed to the hospital and was told it was because of the concussion and dehydration. After recovering from that, the rest of freshman year went pretty smoothly.

I made varsity basketball as a tenth grader and I was over the moon. At this point, I was in love with basketball. I spent hours at camps and clinics, and my closest friends were the ones I played summer ball with. By no means was I a superstar but basketball was my distraction. It took me away from the world and gave me an outlet. To see the coaches thought I was good enough to play varsity made my heart explode. The season started and I was so eager every practice. There was a lot of controversy about the head coach, but I never saw the problem. Was he a little weird? Yes. However, I never saw him as an evil man.

I came in for a Saturday practice one early, rainy morning. The plan was to watch our film from a previous game, eat bagels, and then have a short practice after. I walked in the hallway and saw all the girls sitting, waiting for the coach. I sat with them and talked until he came over. He started going over the plan for the practice. Instantly, I got this insane nauseous feeling. I instantly squatted over and gasped. No one seemed to notice so I must have been much louder in my head. The girls started following the coach to the film room and as I stood up, I felt the color leave my face. I ran over to the assistant coach and told him I needed the bathroom quickly. He said I didn’t look great and went to unlock the teacher’s bathroom because it was the closest. He told me they would be in the film room in the basement and to come down when I’m done. I nodded and walked into the bathroom. I heard the heavy door slam and I put my hands on the sink. I looked up into the mirror and that’s the last I remember.

I woke up on the bathroom floor in the pitch black with my head right next to the stall end. I lay there, frozen. Pure fear ran through my body. I barely knew what happened, let alone what to do. I had no watch or phone on me and no clue how long I was out for. When I finally moved, the lights came back on and I picked myself up and walked down to the film room. I told my coach and he had me call my dad to pick me up.

Courtesy of Tara Bie

Looking back on this day, so many things don’t make sense. Why did the first coach leave me if I didn’t look good? Why did no one check on me? Why was the ambulance not called? My family took me to the hospital after they picked me up. The syncope was blamed on dehydration and I suffered a severe concussion centimeters away from a brain bleed because of it. I spent over a month in a pitch-black room, laying in my bed. I could barely open my eyes for weeks but finally, almost five months later I was cleared to go back to normal life.

Courtesy of Tara Bie

Although I was medically cleared, I was slightly nervous to go back. I knew I never wanted to go through that amount of pain again. I ended up doing well the rest of my sophomore year. I mostly just ignored the frequent migraines and just tried to forget about my health altogether.

Junior year was by far the highlight of my life. I started playing volleyball with my best friends, was in my first serious relationship, and started working my first job. The first half of my junior year was genuinely some of the best days of my life.

Courtesy of Tara Bie
Courtesy of Tara Bie

One random week that year, I was sick for a few days. I didn’t really think anything of it, just a 24-hour bug. I went back to school that Wednesday, which happened to be the day my class was taking a field trip to the county courthouse. When we got there, the officers took us around, explaining rules as we passed places. Eventually, we ended up in a little lookout room with plexiglass. The officer explained what all the buttons and movements meant. As he was talking, I started feeling really sick. I vividly remember thinking I needed to leave. The next thing I remember was waking up on the floor of the little room with all my class looking over me. I felt my face turn red as embarrassment filled my body. I insisted I was fine after a bit of fussing and finally we continued the tour and took the bus ride home like normal. My class all left the bus and my closest friend from the class walked me to the nurse’s office, where I waited for my mom. I stayed home from school for about a week, then went back like nothing ever happened.

Later that year, I started a second job at a daycare. I instantly fell in love with it. This was the moment I knew what I wanted to do with the rest of my life. I worked there all summer and somewhere during this time of working two jobs, playing sports, and still being a student, I managed to pass my driver’s test.

Courtesy of Tara Bie
Courtesy of Tara Bie

One August morning, I went to get a physical for the start of senior year. I was on my way to work after, just about a block away when everything stopped. In a literal blink of an eye, I was swerving on the road to pull over. I looked over and saw the backend of the car I just hit. My mind was hysterical. I couldn’t remember anything from before the crash or how it possibly happened. I called my dad, sobbing and trying to piece together words. I was in shock the whole time. I couldn’t stop myself from crying or my head from throbbing.

The following week, I was sick almost every day. The one day I tried to work I ended up passing out in the office and throwing up in the parking lot.

This was the breaking point for my health. I quite literally couldn’t leave my bed without passing out. I was rushed to the hospital multiple times and every time, I was told, ‘There’s nothing we can do’ or ‘You’re overthinking it.’

Courtesy of Tara Bie

This went on for about two months. I felt defeated and broken. I gave up almost all hope of ever knowing what was wrong with me when my aunt mentioned Postural Orthostatic Tachycardia Syndrome. My family and I searched for doctors to treat this syndrome and finally found one in Boston Children’s Hospital. I was brought there on October 23, 2019, where a tilt table test was performed on me and I was diagnosed with POTS. This was not only the hardest test I’ve ever gone through but the most nerve-wracking day I’ve ever experienced. I wanted so badly for there to be an answer. I wanted so badly to be cured and back to normal. If only I knew this was only the beginning.

Courtesy of Tara Bie

After the diagnosis, I started physical therapy in the water, many new medicines, and ate a large amount of salt to try to treat the POTS. I started improving. I still used a wheelchair 95% of the time but during Christmas time, I was able to go to stores and spent a decent amount of time out of bed.

Courtesy of Tara Bie

Things started to change at the beginning of March. My body started to get weaker and I was constantly tired. I started skipping physical therapy and staying in bed more. During this time, the diagnosis of Ehlers Danlos Syndrome started to be thrown around and I began getting tested.

Courtesy of Tara Bie
Courtesy of Tara Bie

Then, Coronavirus hit.

The whole world was paused, including my recovery. No new doctors would see me, no new treatments were available and nothing was getting better. I started passing out much more frequently (6+ times a day) and my mental health started slipping. I also developed constant nauseous and the inability to eat. I began seeing new doctors, including a therapist and a gastroenterologist, a few months into quarantine via telehealth appointments. I was sent for what seemed like a million tests and received a bunch of negative results back.

Courtesy of Tara Bie

At the end of May, I was sent for a gastric emptying test and the result came back clear as day. I was suffering from severe gastroparesis on top of POTS, hEDS, and chronic migraines. I was put on medicine to treat it for the whole month of June because it was severe, the medicine barely even skimmed the pain. Currently, I am in the process to receive a gastric pacemaker and still working on not passing out as much (currently 15+ times a day). I wish I could write you a happy ending but… my story is not over yet.”

Courtesy of Tara Bie

This story was submitted to Love What Matters by Tara Bie. You can follow their journey on Instagram.  Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories by those with chronic illnesses here:

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‘I see you refusing to give up your nights out with friends, your weekend bar visits. I see you, and quite frankly, I’m fed up. My life is on hold.’: Woman with chronic illness says ‘we are vulnerable and we matter’

‘Did you think we were ‘lucky’ to stay in bed while you go to work? Reach out to us.’: Fibrodysplasia Ossificans Progressiva warrior says, ‘Check on the people you know who have to stay home for disabilities’

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