Examples: Recovery/Rehabilitation Programs & Studies

Much of the work and success with POTS is with the individual physicians and other health professionals. What they are doing to achieve success is spread by word-of-mouth (or Internet) at this time. There are very few formal programs or resources that address issues for people with OI - either POTS or NMH.

These are the programs and protocols that we are aware of:
      —Formal program for general rehabilitation for people with POTS - outpatient program: Mayo Clinic.
      —Research study on the physical aspects of recovery that has gotten national attention: Texas IEEM .
      —Formal program on the overstimulation and central (mind/brain) issues - the Amygdala Retraining program by Dr. Gupta in England.

If you are aware of other programs or clinicians who are having success, please, please let us know so we can contact them and share their success with others.

On this page, we will provide an overview of their work. Each program and protocol will be discussed in more detail in the other sections as we research them, get more details and identify the elements that will help others with their own recovery plans.

 

Research - Exercise Protocols that have helped

There are a limited number of studies that have shown any success with orthostatic intolerance. The important factor in all of these studies is that the people did NOT do their exercises (their physical activity) standing up!

 

Experience at Texas - IEEM

They have a number of studies looking at how to prevent orthostatic intolerance with bedrest/space flight and how to recover. They have applied their findings to people with POTS. ^1-6

• Current Pilot Study: With the success in their smaller studies, they are now running a 3-year study with more people with POTS (250 people). (Enrollment has been closed.)


• Status of their pilot: They hope to start to release their findings soon.


• Future Expansion of their protocol: In September 2012, they plan to start sharing more about their program with physicians for the physician to use to treat their individual patients. They will require that the information not be shared out of respect for their research and publication process.


• Public Information About Their Work:   They will be releasing their findings soon. After they have published their findings, they will be providing more information on their website.


• Interested patients: They are referring interested patients to their physician. Their physician will have to request to obtain the program from IEEM when they release it later this year.

To learn more about their studies, their results and details they have released about their protocol, sign up to be notified when they are posted in the Move Into Health section.

 

Berlin Bedrest Studies

Like the USA, studies of bed rest have been done in Europe to learn more so that it can be applied space flight. The European Space Agency has sponsored studies and standardized the conditions that are used in the bed-rest studies so that the results can be compared.

A series of studies on the impact of bedrest have been done in Berlin, at the Centre for Muscle and Bone Research.^7-10 They have published a number of reports on their findings. Their results have been applied to bed-rest only at this point.

We will be reviewing their findings and providing more detailed information in the section Move Into Health.

Mayo Clinic Outpatient Rehabilitation Program

Mayo Clinic has included rehabilitation for people with POTS into their outpatient chronic pain programs. The clinics are based on age. There are 2 programs for adults and one for pediatrics. The pediatric clinic goes from 13-21.

The program includes physical and occupational therapy sessions, movement, coping skills, vocational/school assessment, and life planning.

Adult program: To find out more about the program for adults, start here - Mayo Pain Rehabilitation Center.

The pediatric program is a 3 weeks outpatient program. Parents are expected to attend also. It includes sessions for family and with family (about 1/2 day work) and addresses shifting roles from being a "patient" with a "caregiver/parent", back to being parent/child and re-entering 'normal' activities in life.  They have included people with POTS in the program for the last 1.5-2 years. They have not yet published any results of their program with people with POTS. It requires referral from a physician. You can find out more by going to Mayo Pediatric Pain Rehabilitation Program.

There are 2 video's on YouTube about Nick who went through their program: Nick's video - Becky-Nick's Mom

 

Amygdala Retraining - Gupta

This program was created for people with CFS, however, it addresses the overstimulation of the centers of the brain and can help with the overall feeling of stress, anxiety and other symptoms that come with the chemical response to to standing up. Links to the CFS Recovery Amygdala Retraining

In a small study, people with fibromyalgia and chronic fatigue were found to have statistically significant improvement in their physical health, energy, pain, symptom distress, and fatigue.³ Its use and success with POTS or OI has not been studied or reported, however chronic fatigue is one of the symptoms that is common to people with POTS. .

Sign up to be notified when more is posted on this and other methods of reducing overstimulation in the "Deal & Heal" section.

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References

1. Fu Q, VanGundy TB, Shibata S, Auchus RJ, Williams GH, Levine BD.  Menstrual cycle affects renal-adrenal and hemodynamic responses during prolonged standing in the postural orthostatic tachycardia syndrome.  Hypertension 56(1): 82-90, 2010.
2. Fu Q, Vangundy TB, Galbreath MM, Shibata S, Jain M, Hastings JL, Bhella PS, Levine BD. Cardiac origins of the postural orthostatic tachycardia syndrome. J Am Coll Cardiol. 2010 Jun 22;55(25):2858-68. Abstract. Article PDF
3. Fu Q, VanGundy TB, Shibata S, Auchus RJ, Williams GH, Levine BD.  Exercise training versus propranolol in the treatment of the postural orthostatic tachycardia  syndrome.  Hypertension 58(2); 167-75, 2011.  Abstract.  Article.
4. Galbreath MM, Shibata S, VanGundy TB, Okazaki K, Fu Q, Levine BD.  Effects of exercise training on arterial-cardiac baroreflex function in POTS.  Clinical Autonomic Research 21(2):73-80, 2011.  Abstract
5. 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. Abstract  .Article PDF
6. Shibata S, Fu Q, Bivens TB, Hastings JL, Wang W, Levine BD. Short-term exercise training improves the cardiovascular response to exercise in the postural orthostatic tachycardia syndrome. J Physiol. 2012 Aug 1;590(Pt 15):3495-505. Epub 2012 May 28. Abstract. Article PDF
7. 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.Abstract. Article PDF.
8. Belavý DL, Armbrecht G, Gast U, Richardson CA, Hides JA, Felsenberg D. Countermeasures against lumbar spine deconditioning in prolonged bed rest: resistive exercise with and without whole body vibration. J Appl Physiol. 2010 Dec;109(6):1801-11. Epub 2010 Sep 23. Abstract. Article PDF.
9. Belavý DL, Armbrecht G, Richardson CA, Felsenberg D, Hides JA. Muscle atrophy and changes in spinal morphology: is the lumbar spine vulnerable after prolonged bed-rest? Spine (Phila Pa 1976) (June 30, 2010).  Abstract.
10. Belavý DL, Bansmann PM, Böhme G, Frings-Meuthen P, Heer M, Rittweger J, Zange J, Felsenberg D. Changes in intervertebral disc morphology persist 5 mo after 21-day bed rest. J Appl Physiol. 2011 Nov;111(5):1304-14. Epub 2011 Jul 28. Abstract.
11. Toussaint LL, Whipple MO, Abboud LL, Vincent A, Wahner-Roedler DL.  A mind-body technique for symptoms related to fibromyalgia and chronic fatigue. Explore (NY). 2012 Mar-Apr;8(2):92-8. Abstract.