My POTS Story

POTS stands for Postural Orthostatic Tachycardia Syndrome.  It basically means that I am often exhausted and my heart will race if I am upright and/or exercising.  There are a lot of people with much worse symptoms than mine, and I have been making good progress over the last few years.  When the condition first struck at age 13 I really couldn't get out of bed.  Since then I have gradually improved through consistent exercise and patience.  We haven't found any medication that helps me at this time, but we keep looking.  Below are a couple of videos and links that help explain the condition.  I am happy to answer questions about POTS and how I have managed to improve over time.

This is the best website for information about POTS and other similar conditions:  Dysautonomia International: Dysautonomia Awareness, Dysautonomia Advocacy, Dysautonomia Advancement 

Dr. Goodman, who is featured in the film is my doctor at the Mayo Clinic.

 https://www.youtube.com/watch?v=hxyitX3R3KM 

For me, exercise is the only treatment that has helped with my POTS at all.  When I first started I could only walk for about 10 minutes at a slow pace.  I gradually built up until I could walk for 30 minutes at a time, then I increased my speed, then I started adding weight to my backpack.  

My current exercise routine (every day - I try not to skip):

- 30 minute walk coving 2 miles carrying 10 lbs (I have worked up to 20 before, but have had a setback)

- 30 minutes of some other similar upright exercise, usually cycling or playing a game like Spikeball

- 1 hour weight lifting (upper body only - I try to do this 4 days/week)

Clearly this is a lot of time exercising in a day, and I also spend at least 30 minutes, sometimes an hour recovering from my walks.  It can make my days pretty short, but it is the only way I have found to improve.

I like to push myself, it was one of my defining characteristics before I developed POTS, but if I push myself at all with most upright exercise I will crash and my symptoms will become much worse - it can set me back weeks or even months.  Interestingly I have figured out that it is only exercise that involves my calves that makes me feel awful.  So I have started lifting weights.  I can generally push myself pretty hard without becoming symptomatic and I am making good progress.