Subsection: Recovery
    • Overview
    • Evaluate Protocols &

    • Examples

Recovery & Orthostatic Intolerance (OI)

     Is it possible to recover from OI?
    How do people do it?

These are the 2 big questions about Orthostatic Intolerance (OI) - for POTS, orthostatic hypotension, NMH..

The answer depend on a few things:
    •  what type of orthostatic intolerance a person has,.
    •  the cause of the orthostatic intolerance (such as dysautonomia or immune),
    •  whether the person also has had prolonged bedrest,
    •  what is being done to manage the OI,
    •  what recovery program has been tried and
    •   whether the person has other medical conditions that affect recovery. Other conditions that affect recovery would be CFS,
       fibromyalgia, hypermobility, or a primary condition that causes dysautonomia, such as Parkinson's or Multiple sclerosis.


Can't I just wait it out - until I can get back to my old life?

It is easy to just want to "wait - until it goes away" or "wait - to get back to your old life". That approach might work when the problem is something that is around for a short time and is "cured" or healed by the body, like a cold or GI flu.

In reality, that approach won't work very well with OI unless you got it from just a few weeks in the hospital. In that case, if you were in the hospital for less than 30 days and it wasn't the ICU, you might recover over time - like months and months, but eventually, your body may readjust itself and relearn that standing up is normal.

For most people who've had symptoms for more than a few months, the orthostatic problem will probably not go away by itself. In fact, you have probably done all you can think of to try to make it better and had little success.

You might get better. You might learn how to manage it so it doesn't limit your daily activities, your work or school, having fun. But - there's a good chance you will still be sensitive to the "orthostatic stressors". You will still get serious fatigue with exercising or walking the stairs and if you keep trying to lead a more "normal" life up and about, you will struggle with headaches, body pain, brain fog and fatigue.

Can you "get back to your old life"?  The bottom line - there really is no "going back". You cannot go back and recover lost time and lost experiences. Your body has changed. You have changed. Doing things the "old" way won't work. You will need to learn to work "with your body", heal it and create a new way.

It is possible to go forward! You can learn to "manage" OI - so that you don't get symptoms as often or the symptoms aren't as intense. And, there are things you can do that will help your body "relearn" or adjust so that it believes that standing up is "normal" again.

Our hope: It is our hope that you will be able to do both of these things. We have purposely put together the information in these web pages that will help you understand what is going on with OI, what you need to do to take care of yourself and "manage" your health.

Working with your physician and the other members of your healing team, it is possible to have hope for the future! It starts with living better one day at a time, one hour at a time, starting today.


Kay E. Jewell, MD

Mother, Caregiver for CFS/POTS loved one since 2004


  • Steps to Recovery
  • What predicts better recovery?
  • How many get better?
  • Essential Pieces to Recovery

Recovery is not like climbing a mountain to get to the top - although some people like to show it that way. In fact, that approach is almost doomed to fail, over and over again, until a person becomes so disgusted they quit altogether. You have probably already figured this part out. (It's called 'learned depression' - see the Heal and Deal section for more about that).

Success in recovery - or in losing weight or making any major change - is more like a quality improvement process that is used in business, manufacturing and healthcare.




There are two things that have been studied and reported in the medical literature as being important about the person with OI and their chance of recovering:
    •  Willingness to change - to change what you do, how you do things, to change habits and lifestyle, and
    •  Management of orthostatic symptoms.


Management of Orthostatic Symptoms: In an analysis of people with Chronic Fatigue Syndrome (CFS), Costigan and colleagues, found that their ability to function everyday was very different from the healthy people who were the control group.They found that management of orthostatic symptoms had the biggest impact on all the problem areas: fatigue, walking, standing, eating, hygiene, reach, grip and activities, Orthostatic problems also affects cognitive function (mental ability,memory, thinking).


Other factors that make a difference in recovery - having a healing team that sticks with you over the weeks and months it take:

  • A physician who works with you and who helps keep track of things over the long-haul.
  • Therapists- occupational and physical therapist - who have the knowledge and skills needed.
  • Someone who helps keep you on track - someone who problem-solves with you and helps decide when more is needed or when the plan needs redesigning.
  • Finding ways (skills and people) to deal with the emotional & mental parts of getting sick, having a chronic condition, starting over or redesigning your life etc.
  • Other team members depending on what you need and what your resources are.

We will explore this more in the Healing Team section.

The Future - POTS

At present, only limited data are available on the prognosis of patients with POTS. Investigations are presently underway analyzing the outcomes of new approaches that will hopefully tell us more.

Some basic trends have been observed.

  • Over one half of the patients with postviral onset POTS appear to make a reasonable recovery over a 2- to 5-year period, with recovery defined as the relative absence of orthostatic symptoms alone with the ability to perform the activities of daily living with minimal restriction.

  • However, some patients do not recover, and a small subset will worsen over time. For the most part, the younger the patient, the better the prognosis. In general, close to 90% of patients will respond to a combination of physical therapy and pharmacotherapy.

  • Patients with the hyperadrenergic form of POTS usually require therapy indefinitely.

  • The prognosis of those patients with secondary POTS is usually determined by the prognosis of the underlying disorder. 4

In another clinics experience, the long-term outcome data available for patients with postural orthostatic tachycardia syndrome (POTS) suggest a good potential for recovery in newly diagnosed adolescents.8
However, the disease may affect adolescents most during the formative years of social, academic, and psychologic functioning, resulting in young adult patients with a resolution of postural orthostatic tachycardia syndrome signs and symptoms, but long-term social and psychologic sequelae

.Adults with a new diagnosis of postural orthostatic tachycardia syndrome present a more guarded outlook .

Future research should include a search for positive and negative outcome predictors in patients with postural orthostatic tachycardia syndrome, to help identify patients at risk of poor long-term outcomes.5,7


The Future - Neurally-Mediated Hypotension (NMH) & Orthostatic Hypotension (OH)

There is even less information about the future outcomes for people with NMH and orthostatic hypotension. The future in terms of feeling better partly depends on managing the orthostatic problem. Managing the NHM or POTS will improve some of the symptoms a person has - the orthostatic intolerance and some of the fatigue and sleep issues. However, when the NMH or OH is a secondary condition, the future prognosis or outcome is strongly affected by what the primary condition is, like diabetes, Parkinson's, MS, etc..


   NMH associated with CFS or fibromyalgia

The future in terms of feeling better partly depends on managing the orthostatic problem. Managing the NHM or POTS will improve some of the symptoms - the orthostatic intolerance, some of the fatigue and sleep issues. But, the rest of the future outcome is affected by CFS and fibromyalgia.

There's more to be said about using some of the approaches to POTS and NMH that might help CFS and fibromyalgia - and also the reverse. We will be exploring more and posting more. Sign up!

OI affects the whole person. Recovery requires attention to the whole person as well.

For many, the biggest stumbling block is the physical recovery, retraining the body so that standing up is 'normal'.

The clinical studies have shown that the key elements of recovery are:
    •  Salt/Fluids - Physical exercise alone is not enough. Fluids/salt increase alone is not enough.
    •  Raising the head of the bed
    •  Physical activity / exercise - the right kind!
    •  Addressing the impact of the condition on the other parts of life: emotional, intellectual, social, occupational, etc.

There are very few programs that address all these elements AND have been successful. Some have identified pieces that help.

Author's Note: We will try to point out the limits of the studies and programs and questions to ask for you to evaluate a program or study to see if it would work for you in your rehabilitation.


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  1. Lee et al. Exercise, Bed Rest & Countermeasures. Aviation, Space, and Environmental Medicine January 2010;81(1):*
  2. Costigan A, Elliott C, McDonald C, Newton JL. Orthostatic symptoms predict functional capacity in chronic fatigue syndrome: implications for management. QJM. 2010 Aug;103(8):589-95. Epub 2010 Jun 9.  Abstract.
  3. Shibata S, Perhonen M, Levine BD. Supine cycling plus volume loading prevent cardiovascular deconditioning during bed rest. J Appl Physiol. 2010 May;108(5):1177-86. Epub 2010 Mar 11. Article pdf
  4. Mtinangi BL, Hainsworth R. Effects of moderate exercise training on plasma volume, baroreceptor sensitivity and orthostatic tolerance in healthy subjects. Exp Physiol. 1999 Jan;84(1):121-30. Abstract. Article pdf
  5. Grubb BP. Postural tachycardia syndrome. Circulation. 2008;117:2814–2817. Abstract.  Article PDF.
  6. Medow MS, Stewart JM. The postural tachycardia syndrome. Cardiol Rev. 2007;15:67–75. Abstract.
  7. Burkhardt BE, Pianosi PT, Brands CK, Porter CJ, Weaver AL, Fischer PR. Heart rate response to exercise in adolescents with autonomic dysfunction. Clin Autonom Res 2007;17:266.  Abstract.
  8. Stewart JM. Chronic orthostatic intolerance and the postural tachycardia syndrome (POTS). J Pediatr. 2004;145:725–730. Article PDF
  9. Johnson JN, Mack KJ, Kuntz NL, Brands CK, Porter CJ and Fischer PR. Postural Orthostatic Tachycardia Syndrome: A Clinical Review. Pediatr Neuro 2010; 42:77-85. Abstract.
  10. Belavý DL, Bock O, Börst H, Armbrecht G, Gast U, Degner C, Beller G, Soll H, Salanova M, Habazettl H, Heer M, de Haan A, Stegeman DF, Cerretelli P, Blottner D, Rittweger J, Gelfi C, Kornak U, Felsenberg D.The 2nd Berlin BedRest Study: protocol and implementation. J Musculoskelet Neuronal Interact. 2010 Sep;10(3):207-19. AbstractArticle PDF.

Author: Kay E. Jewell, MD
Page Last Updated: August 22, 2012