For people suffering from Orthostatic Intolerance, Postural Orthostatic Tachycardia, Mast Cell Activtation or EDS. Follow me as I document my struggle towards better health.

Day 26 of Dr. Levine's Exercise Protocol (A.S.)

Feelin' Gooood.  I am still very tired after performing the exercises though.  Right after the exercises I am wobbly and dizzy, then, for the next 15 minutes or so I am ok.  The fatigue hits 20 minutes after finishing the exercises and sleep is an immediate necessity.

Diet is also being carefully attended to.  I am trying to eat at the same regular intervals everyday - no caffeine, no sugar, enjoying foods that are lower on the glycemic index and organic, whole foods when possible.

Soldier on!

Exercise Intolerance and Postural Orthostatic Tachycardia (POTS) or Chronic Fatigue Syndrome

If I had a nickel for every time someone with POTS, OI or CFS said "I can't exercise because it triggers severe fatigue" I would be a thousandaire by now!

Unfortunately, exercise intolerance appears to be a common condition associated with POTS and OI.  It even brings up the "chicken and egg" question for Chronic Fatigue patients with POTS: is it POTS with exercise intolerance or Chronic Fatigue Syndrome with POTS?

Conditions/circumstances which can exacerbate Exercise Intolerance:
  • In Stages II to IV any cardio exercises which get my heart rate up higher than 160 (even  >140 bpm can be a problem)  
  • Exercising standing up (treadmill, elyptical, walking)
  • Anaerobic exercises (strength training) 
  • Putting laundry away, walking to the other room if I have been laying prone on a bed or in a wheelchair.
Is Exercise Intolerance a result of a weak cardio vascular system?
It kinda looks that way!  As discussed previously in this blog, prolonged weightlessness in space can also cause POTS-like symptoms in otherwise healthy persons.  Dr. Levine and his team's work with NASA appears to have led them to develop the treatment protocol for POTS to address the similar symptoms associated with prolonged weightlessness, bedrest, POTS and OI.

According to Jack H. Wilmore, David L. Costill, W. Larry Kenney in their book "Physiology of Sports and Exercise":
In a microgravity environment, the reduction of loading leads to dramatic losses in muscle mass and strength, osteoporosis, and exercise intolerance at rates that mimic those seen in spinal cord-injured patients.
If a person has POTS, OI, Chronic Fatigue Syndrome they are at risk of exacerbating their symptoms through their own inactivity (reduction of loading?).  The evidence is clear that periods of prolonged inactivity or bed rest causes:
  • the heart muscle to shrink (yipper!!)
  • a reduction in blood volume
  • exercise intolerance
This is the "Catch 22":  If someone suffers from exercise intolerance upon exertion yet inactivity causes or makes exercise intolerance worse how do you break the cycle?
Speaking from experience it can be done but with effort.  I described my first experience with the POTS treatment protocol developed by Dr Levine and his team where, for the first month or so, I would have to rest for a few hours after each session and doing the exercises was really tough.  It took a month or two before I started seeing results.  I did not feel better right away.  But I did feel better, dramatically better by the third month.  I endured the fatigue, the exercise intolerance, in order to achieve long-term gain.

What is the effect of exercise on the heart and blood volume?
  • the heart muscle gets bigger (stronger)
  • blood volume is increased
I am not suggesting that POTS, OI or CFS is caused by inactivity or de-conditioning.  I am suggesting that de-conditioning or inactivity can make POTS, OI or CFS symptoms worse.


As a final thought, when embarking upon an exercise regime to treat the symptoms of POTS, OI or CFS please remember that there are exercise programs which have been found to be more effective than others.

Postural Orthostatic Tachycardia Syndrome and Autonomic Storms

I just realized that on my 5 Stages of POTS post, I referred to something experienced in Stage V as an "autonomic storm" and I am concerned that I am using the term incorrectly.  After doing some cursory research, it appears the term is used by medical professionals but it is used to describe something that happens to people after cardiac arrest or after a traumatic brain injury.

However, I did find a reference in Harrison's Practice which states:
Autonomic storm is an acute state of sustained sympathetic surge that results in variable combinations of alterations in blood pressure and heart rate, body temperature, respiration, and sweating.
I am not alone in having what may be incorrectly described as autonomic storms.  I have read a number of posts and comments by patients with POTS or OI who have also described having them.  My experience with the nasty things is confined to when I am in the worst stage of POTS or Stage V: I am unable to stand, or even sit up, my vision is regularly disturbed, chest pain, frequent migraines and my hands and feet hurt.

If you have POTS or OI perhaps you have experienced one of these "autonomic storms" too:

  • body temperature goes up and down
  • what feels like a large quantity of epinephrine being injected into your system (I have gone into anaphylaxis so know what this is like)
  • tachycardia
  • chest pain
  • electric shocks up arms and legs
  • heavy perspiration (ladies don't sweat) to the point of soaking the bed clothes
In short, it is a totally dreadful state to be in.  In my case, the episodes would pass after a half hour to an hour.  I can say, however, that once I started Dr. Levine's protocol and progressed from Stage II/IV, I no longer experience autonomic storms. 

Can Autonomic Storms be Treated?
I have never been treated or have asked to be treated for autonomic storms.  There are protocols I believe for the treatment of Autonomic Dysfunction Syndrome in patients with traumatic brain injury but whether or not the same medical interventions would be proper or effective in patients with POTS or OI experiencing the condition described here would be a really good question for a specialist.

Day 21 of Dr. Levine's Exercise Protocol for POTS (A.S.*)

Hooray!! Feeling great, although my triceps are sore.  Was up early today cleaning away the debris from our dinner party last night which included a trip down someone's memory lane listening to Annette Funicello records (before MY time).  They say as you get older, memories from the distant past become clearer: our guest was able to enthusiastically recall every word to Annette's famous rendition of "Pineapple Princess."  

Beach Blanket Bingo and POTS...I would never have been able to do the "mashed potato" two weeks ago!  Now that's progress.



*A.S. = After Sausage