Prior to our son’s initial illness, he was extremely active, healthy, happy, did well in school, and loved hanging out with his friends. He played sports his entire life and especially loved hockey and lacrosse. In fact, at the time of his initial virus and for the few months after, our son was playing on 3 hockey teams – a club team, a school team, & he was a practice player for a travel team. During the months following his initial virus, his symptoms would get worse (he would miss school & sports) and then get better after a couple of weeks (he would attempt to return to school & sports). This roller coaster of “crash and recovery” lasted until his crashes were so severe that we had to take him out of school full-time in January of 2015.
What we didn’t know at the time (because we didn’t get a diagnosis until March of 2015), was that taking him out of school was a horrible decision. His symptoms continued to worsen at home (despite all the “rest”) because his body was getting more and more deconditioned (and less able to pump his blood properly).
After our visit and diagnosis at the Mayo Clinic in March 2015, we started the “Mayo Protocol” to help his POTS symptoms and to try to get his “normal” life back.
The Mayo POTS protocol is a combination of adding 2-4 liters of fluids per day plus additional salt to a patient’s daily intake. The Mayo suggests that 2 of the liters should be water and no caffeinated beverages, as they are dehydrating. For the additional salt intake, Mayo suggests salting all food – as much as can be tolerated (no need to measure salt intake). This combination is to increase total blood volume and extracellular pressure. Additionally, we were told that DAILY exercise (NO MATTER WHAT) is the most important part of the protocol. The idea is that bigger, stronger muscles (weight training) plus a stronger heart (cardio) are critical for better blood circulation. We were put on a program to gradually increase our son’s daily exercise with a long-term goal of 30 minutes of breathy / sweaty cardio plus 30 minutes of other activity PER DAY (weight training or other activity). On days when we had a “set back” or increased symptoms, we were instructed to modify his exercise. On the protocol, there are NO EXCUSES to get out of daily exercise. This was very difficult for our son at first. (Imagine feeling like you have the flu, but you have to get on the treadmill.) Another part of the protocol is to return to a full day of “regular” activities and school (gradually). Some patients are put on medications, including beta-blockers and/or vasoconstrictors to help with the tachycardia & blood pooling in lower body. Also, for patients with low ferritin (iron) or vitamin D, supplements are used. Patients are encouraged to sleep 8.5-9.5 hours per night and no naps during day. Finally, patients are told to stick with a schedule, find activities that they enjoy, and stay as positive as possible.