Welcome & Brief History

Welcome & Brief History

WELCOME!

Hi.  My name is Jack.  This website is about my journey with dysautonomia, more specifically adolescent Postural Orthostatic Tachycardia Syndrome (POTS).  It is intended to raise awareness about autonomic dysfunction and to provide a roadmap toward recovery from POTS.  I am not a doctor and the content on this website is not intended to be a substitute for professional medical advice, diagnosis, or treatment.  This website contains my opinions and personal experiences only.  I hope the information from my journey can help you and your family live fully-functioning lives, despite chronic illness.

I got sick in August 2014 when I was 13 years old & was diagnosed with POTS in March 2015 at the Mayo Clinic in Rochester, MN.  I missed most of my 8th grade year at school and part of my 9th.  Although I am not yet completely cured, I am doing very well and am on the road to recovery.  Since starting the Mayo POTS Protocol, completing the Mayo Pediatric Pain Rehabilitation Center (Mayo PPRC) program, and taking IV iron infusions, my symptoms are MUCH IMPROVED and I am a normal teenager living a FULLY FUNCTIONING LIFE.  I am back at school full time (including AP and honors classes), get good grades, am happy, and participate in Varsity sports year around.

You are likely here because you may have searched for “adolescent fatigue” or “Chronic Fatigue Syndrome”.  Or you may have a family member with unexplained, chronic digestive issues and pain (and all medical tests have come back normal and nothing helps).   Or you may already have a diagnosis and want to know more about the Mayo Clinic Pediatric Pain Rehabilitation Center (PPRC) experience for your teen with POTS, Complex Regional Pain Syndrome, migraines, Post Concussion Disorder, IBS, chronic fatigue, brain fog, or other chronic illnesses/pain/symptoms.

In my opinion, if you have a child with chronic fatigue and/or prolonged unexplained stomach upset (sometimes accompanied by depression and anxiety) and all doctor-ordered tests come back “normal”, you need to check for POTS as a possible diagnosis.

I return every summer to the Mayo Clinic as a guest speaker at the Mayo PPRC to give back to the incredible institution that saved my life.  Here is a link to my Mayo speech in August 2018:

Here is a photo of me and Dr. Philip Fischer (who diagnosed me) from my trip back to Mayo this summer.  I hope to catch him in height one day . . . he’s at least 6’3″!

     

Please see the “Blog Posts” section of this website under “Updates Since Returning from the Mayo PPRC” (and click “Read More”) for updates on my current journey with POTS.  Direct link below.

Updates Since Returning from Mayo PPRC

Below please find a brief description of Dysautonomia/POTS, as well as a brief description of my back story.

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DYSAUTONOMIA & POTS:

Dysautonomia is an umbrella term used to describe a group of diseases that affect the autonomic nervous system.  The autonomic (or “automatic”) nervous system controls the functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, kidney and adrenal function, and temperature control.  POTS is one type of autonomic dysfunction. Specific definitions vary, but generally include chronic fatigue, digestive issues (pain, nausea, and/or food motility issues), cognitive decline/brain fog, and two key components:

  • Symptoms of orthostatic intolerance (development of symptoms when standing upright which are relieved when reclining)
  • Excessive postural tachycardia (more than 40 beats a minute) with supine to upright positioning on a tilt table

In addition to these signs and symptoms, adolescents with POTS often also experience depression and anxiety.

(Source: www.mayoclinic.org)

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BRIEF HISTORY OF MY JOURNEY:

In August 2014, I got sick with a stomach virus with high fever and it changed my life.  I just never got well.  I saw specialist after specialist for 9 months.  No-one could figure it out.  I got lumped into a Chronic Fatigue Syndrome diagnosis by the best-of-the-best on Long Island and NYC.  I was told to go home and to find a psychologist.  Nothing could be done.  I, who had always been super athletic and active, was bed ridden and out-of-school with home tutors (I basically missed my entire 8th grade year).  Thankfully, my parents didn’t give up and they took me to the Mayo Clinic in Rochester, Minnesota.  They diagnosed me within the first 2 minutes of our first meeting with the head pediatrician (Dr. Phil Fischer), then they spent the next week running all the tests to prove the diagnosis.  I was diagnosed with virally-induced, idiopathic Postural Orthostatic Tachycardia Syndrome (POTS).  I have been on the Mayo Protocol for POTS ever since.  My parents also added IV iron sucrose infusions to help boost my ferritin iron levels (after many hours of their own research) and I also spent almost another month at the Mayo Clinic Pediatric Pain Rehabilitation Center (PPRC) about 9 months after my initial diagnosis.  I am now doing very well.

My mom & I attended the Mayo PPRC in January of 2016 for 3.5 weeks.  It was a game-changer for both of us.  The program should actually be called “How to Live a Better Life” because the information can benefit everyone, not just sick people.  It was a privilege to be able to attend this program and I will be forever grateful for the opportunity.  How did we end up at the PPRC?  Although, I made great strides on the Mayo POTS Protocol over the first 9-month period after diagnosis, I was still unable to attend a full day of school (I was attending for a ¾ day) and I was still experiencing occasional “crashes” from “over doing it” with parlor, low-grade fever, loss of appetite, & increased fatigue.  I managed to get my functioning level to 80%, but I was looking for more.  Most patients arrive at the PPRC in really bad shape, many in wheel chairs or worse, so I was on the higher end of the functioning spectrum upon arrival.

Our good friend’s daughter (also with POTS) attended the Mayo PPRC program in Aug/Sept 2015.  She arrived at the PPRC with a feeding tube (she had lost 34 pounds as a 12-yr-old) and had to lie on the floor of the airplane to get to Minnesota.  Her turn-around was miraculous and she influenced me to attend the program.  (As a side note, their daughter is back on her competitive ski team.)

We witnessed a few other “miracles” while at the PPRC, including three young ladies with Complex Regional Pain Syndrome – two who had lost the use of a leg and one had lost the use of her arm.  The young lady with the bad arm is now able to ski competitively with her cross-country ski team and has recently earned a spot on the team for States.  The other two ladies found great success too – one is able to help work her family’s ranch in Montana (and is a CrossFitter!) and the other is back at school/sports and doing great also (it was amazing to watch her progress from arriving at the program on a scooter with one non-functioning leg to running on the treadmill by graduation).  There was also a young man with POTS who arrived in a wheelchair.  He had been in that wheelchair for almost a year.  We watched his hard work and determination.  He was out of that wheelchair within the first week at the program.

This website began as a blog of our (me and my family’s) experiences leading up to and including our visit to the Mayo PPRC.  My “blog” entries are now listed on the second tab called “Blog Posts” on this website.  In addition to telling my complete story, I discuss the building blocks to wellness (not a cure) from our experiences at the Mayo PPRC.  Some of the most interesting topics deal with (1) the vicious cycles of stomach upset and pain, which lead to starvation and more stomach upset and pain, (2) the concept of rewiring the brain called neuroplasticity,  and (3) the science behind the benefits of diaphragmatic breathing and relaxation, and (4) the importance of sleep, especially stage 3 sleep.  I also touch briefly upon our success with IV iron sucrose infusions.

At the beginning of my journey, we searched for a diagnosis, then we searched for a cure.  Although there is not a “cure” for POTS, we have found a protocol for full-life functionality despite chronic illness.  Even if I do not fully outgrow POTS, I now have the tools to live a long, full, happy, and successful life.  

Please continue reading about my journey (plus current updates!) in the “Blog Posts” section of this website.