Treatment Protocols

Treatment Protocols

MAYO PROTOCOL TO ALLEVIATE SYMPTOMS FROM POTS (Sources – Mayo Clinic & Mayo Clinic Pediatric Pain Rehabilitation Center):

“STEPS”

  • Salt
  • Take in Fluids
  • Exercise
  • Prescription Medications
  • Sleep

*Eat salt & take in fluids – The first goal is to increase blood volume by increasing fluid and salt intake.  Add as much salt as you can to everything & drink 2-4 liters of fluids per day (2 liters of which need to be water).  Two liters = 64 oz or 8 cups.  Avoid caffeine & alcohol as they can be dehydrating.

*Exercise – 30 min breathy & sweaty cardio plus 30 minutes other activity EVERY DAY (strength training twice per week).  The exercise is KEY because it gets blood flowing by squeezing blood vessels & improving circulation. Exercise should be increased gradually toward this goal.  Cardio exercise is the absolute key to recovery.  If you made a pyramid diagram of the important parts of this protocol, exercise would be the base, then salt/fluids, then medication.The benefits of daily exercise are:

  • Increased energy & stamina
  • Retrains muscles to improve blood flow
  • Decreases pain & fatigue
  • Revs up heart to improve circulation
  • Helps you sleep better at end of day
  • Body releases endorphins (”happy hormones”)
  • Helps with depression and/or anxiety

“Managing POTS Through Exercise” http://standinguptopots.org/treatment/exercise

“CHOP Modified Dallas POTS Exercise Program” http://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf

*Medications — Medications may be helpful and can include beta blockers for tachycardia (usually 25mg metoprolol before getting up and again at lunchtime) or vasoconstrictors (usually 2.5-10 mg three times daily) midodrine).  Please consult your physician for more information.  Additionally, some POTS patients can benefit from oral iron supplements (to keep ferritin levels up) and vitamin D supplements.  See section below on IV iron infusions.

*Sleep

  • 8.5-9.5 hours per night
  • Keep same sleep/wake hours every day and don’t vary sleep/wake times by more than 1 hour on weekends
  • No naps
  • Have bedtime routine & winding down time
  • No screens 30 min before bed

OTHER TREATMENTS:

*Cognitive Behavioral Therapy – Cognitive Behavioral Therapy can be very useful for POTS patients, along with other strategies including deep diaphragmatic breathing, relaxation, and guided imagery.

*School – Go, or go back, to school. Maintaining normal social contact is important to well-being.  Additionally, getting back to a regular schedule retrains the brain and body to function normally despite illness.

IV IRON INFUSIONS:

Due to my low ferritin (iron) levels, I ended up seeing a hematologist near my home.  Turns out that this doctor had treated other POTS patients over the years. After attempting to increase my ferritin iron levels with over-the-counter & then prescription oral iron without much success, they decided to start IV iron treatments with an iron sucrose called Venofer on me.

Why are adequate ferritin levels important for the body?  Ferritin serves to store iron in a non-toxic form, to deposit it in a safe form, and to transport it to areas where it is required in the body.  Iron is essential for proper oxygenation of the body.  Low ferritin levels cause increased fatigue and other problems.

When they initially tested my ferritin in March 2015, it was 19 nl/ml.  My low ferritin level was definitely contributing to my fatigue & exercise intolerance.  Using over-the-counter & prescription iron supplements from March to September, my ferritin increased to 30 nl/ml.  Once I started the Venofer infusions, my ferritin levels jumped way up and amazing things happened!  I had increased energy & stamina (much less fatigue!) and I was able to increase my exercise and activity levels.  My appetite and taste for food also improved.  I started out with monthly IV iron infusions and then they spaced them further apart, depending on my ferritin levels. My ability to hold my ferritin iron levels increased over time and my body will now absorb oral prescription iron and maintain ferritin levels over 50 nl/ml.  My last IV iron infusion was in September 2016.  I had a total of 8 IV iron infusions from Sept 2015-Sept 2016.

I know that the combination of the IV iron infusions along with strict adherence to the Mayo Protocol are the key contributors to my current success.

***Please see the “Blog Posts” section of this website for more detailed information on all of the above topics.***