My 1 Year POTS-Versary!!

*Before you read this post, please go read this post POTS In The Beginning! if you want to hear my perspective right after I was diagnosed! Anyway... I hope you enjoy and learn something new!*

Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia. Dysautonomia is another name for autonomic dysfunction. The term autonomic dysfunction means that a part of the autonomic nervous system doesn't work right. Your ANS is the part of your nervous system that controls involuntary and unconscious behaviors. Things like heart rate, digestion, temperature regulation, pupillary response, sweating, and the fight or flight response are all things controlled by your autonomic nervous system. Since I have a form of autonomic dysfunction all the functions I just listed are things that my body struggles with on a daily basis. The biggest ANS function out of whack in POTS is heart rate control. Most people are never aware of their HR expect when they are working out and can notice a more rapid heartbeat. For myself and other POTS patients, our HR fluctuates rapidly by simply standing up or changing position. There is typically a 30-40 BPM increase in the HR of a POTS patient when going from a horizontal to a vertical position. Without medication to help control and restrict my HR, my HR leaps over 50 BPM when I go from laying to standing. This simple nervous system dysfunction causes often causes the most debilitating symptoms for POTS patients. With such a large HR jump in such a short period of time the rest of our bodies' have a hard time keeping up. Many POTS patients deal with frequent syncope (fainting) episodes and pre-syncope episodes when doing simple things like getting out of bed or getting up from the couch.

Other common symptoms of POTS include: fatigue, lightheadedness, headache, nausea, blurred vision, palpitations, tachycardia, brain fog, difficulty concentrating, insomnia, sweating, blood pooling in the lower extremities, chest pain, shortness of breath, hypotension

I hope that gives you a little bit of an idea of what POTS really is and how it impacts my body. Now that I have let my medical nerd side shine... please enjoy my 1 year POTS-Versary reflection.

1 YEAR AGO TODAY... I went to see Dr. P., my AMAZING pediatrician (pictured above), because I thought I had this thing called POTS.  Two days earlier when I had to leave work in tears over how bad my brain fog had gotten and how sick I felt, I turned to the internet out of desperation.  My brain randomly thought of a friend I had met in passing at grief camp whose blog I had read some 6 months earlier.  Out of curiosity I went to see what POTS stood for... not knowing that this simple Google search was about to change my life.  I remember looking down at my phone reading all the symptoms and then it hit me... I was not matching my symptoms to this list, but rather this list was describing my life to a tee.  I, as a very intellectual pre-med, knew not to get ahead of myself but my gut told me then and there that I had POTS.   After sharing this with my grandma (a retired nurse) and my dad who both agreed that this fit too well, we called and got in to see Dr. P. the next day.  I stand by what I said that day... I would not have felt comfortable bringing this seemingly clear self-diagnosis to any other doctor.  See because I had been fighting to be heard by physicians for nearly two years and I had been brushed off as “a normal teenage girl” or told that “it’s just anxiety”.  I had been presenting with POTS symptoms for all this time and I WAS THE ONE to find this.   I had built a deep enough rapport with Dr. P. to feel slightly more confident about bringing this to her.   I knew how I felt and this made too much sense and felt too right to not share.    I was 6 weeks out from my last Latent TB antibiotic dose, so it was time to stop blaming all my symptoms on that treatment and start finding my mystery diagnosis.   I started the conversation by asking if she knew what POTS was.  She said she did, and I immediately replied “well I’m pretty sure I have it”.  She kinda laughed, and then realized I was serious and asked me how we should test my hypothesis.  I was prepared for that.. so I quickly responded that I needed to see this local cardiologist who specializes in POTS.  She agreed and set up my referral.  I must have had the scheduling gods in my favor because I got in to see Dr. M. two days later and he confirmed the diagnosis.   After 2 years of being shut down by physicians who were uneducated about invisible illnesses and not interested in solving my mystery, I finally got my diagnosis.  But here’s the thing... I did it all on my own!! This experience while immediately following a year of traumatic and dehumanizing TB treatment... really changed the trajectory of my life.  My cluster of debilitating symptoms had a name, and there was finally a path to symptom improvement.  I was drawn closer to the field of medicine and reaffirmed my passion and motivation for becoming a physician.  I learned more about self advocating and pushing for compassionate medical care than I ever thought I would as a 17 year old.   

POTS was the chapter in my story that almost never came to be.   1 year later, POTS is the chapter that changed EVERYTHING for me.  I had the privilege to be treated at the Mayo Clinic in Minnesota.   With my history of negative medical experiences on my mind, I was anxious to travel all the way to Minnesota to blindly put faith in a new team of physicians.  I can not thank God enough for giving me the courage to trust the Mayo Clinic.   They restored my faith in medicine, and helped adjust my treatment plan a little which led to the first bout of marked improvement I’ve seen with my POTS thus far.  My journey to the Mayo Clinic put me in contact with people that I can tell will have an impact on my life and on my future for many years to come.   I have the opportunity to attend the University of Minnesota (and while I haven’t made my decision yet) I can’t help but thank my POTS and the Mayo Clinic for guiding me to Minnesota and to this exciting possible educational opportunity.  

Believe me, I spend many days cursing at my illness (like many other chronic illness warriors do), but I have chosen to find the positives that have come from my illness.   For the rest of my life I will be thankful for all my experiences, gained perspectives, and phenomenal physicians that I have had the opportunity to get to know.  My illness has shaped my life in many unexpected ways and I am starting to see the beauty in that.