Managing Orthostatic Symptoms - Main Goals

Most resources on OI begin by stating that the "cornerstone" of managing OI is the patient/person themselves and that they 'need education and reassurance'^1-12.

'Education' is about educating the person and their family/caregivers about the condition and what can be done to manage the symptoms and even control how often orthostatic symptoms occur. This is critical. The medications help with symptoms but they are limited in their effect and limited by their side effects. How a person takes care of themselves, adjustments they make in the way they go about their daily life have the biggest impact on recovery.

 

'Reassurance' is about 2 things.

• First, that the symptoms with standing up and the conditions that cause them are very real. They are not "in the person's head', the person is 'not crazy'. This is all very real, there are medical conditions that cause these symptoms and problems.


• The second reassurance is about the 'benign' nature of the problem. As physician and caregiver-Mom who has lived with CFS/POTS since 2004, I believe this statement needs explaining. In the physician world, a big part of the job is to find the things that are causing a person's symptoms - specifically, to find the things that are fatal, that will result in them dying if they are not treated. If something is not known to cause death directly, it is considered 'benign'. Benign also implies "mild and non-progressive (does not keep getting worse". A condition that is 'benign' can still cause a negative effect on a person's health and life. On the other hand, POTS and OH/NMH are also described as 'debilitating'.
  
  From the patient and their family/caregivers point of view - the condition does not feel 'benign'. Granted there is a wide range of how much it affects each person, it still has a major effect on a person's life and future.

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Goals of Treatment and Management

It's important that physicians, people with OI and family/caregivers agree on the goals of management - what we are trying to achieve, what will make a difference in a person's life and future.

From the medical literature, the goals of treatment or management are to
  1.   Improve the orthostatic symptoms - that means reduce the symptoms that come with standing up¹
  2.   Increase the time a person can stand up without getting symptoms (symptoms while standing or fatigue afterward)
  3.   Improve the person's ability to "function" in their life - go to work/school, have fun/socialize, take care of themselves
  4.   Increase stamina, increase the ability to walk up stairs, and a person's ability to exercise without increasing symptoms or being fatigued afterward.

The goal is not always to increase the standing blood pressure to normal because of the possible risk of increasing blood pressure too much when a person is lying down.

If these goals are met, a person could lead a more active life.

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The Holistic Approach - 'Patient-Centered' Care

There are 2 unique things about OI and these conditions that affects how they are managed and what is needed to recover and heal.

• They are "holistic". That means the conditions involve and affect the whole person - every system of the physical body, the mental/mind, the emotions, the social, and the spiritual. In reality, all health and illness involve the whole person but some are more obvious and demanding than others. With NMH and POTS, the whole person is in the symptoms and in the recovery and healing. We will highlight the issues here and provide more details in the other sections. For a brief overview of the Holistic Wheel of Life, learn more.

• The success of management depends on "patient oriented management" ⁸. The person with OI knows themselves the best, knows their symptoms and what works and doesn't. Recovery depends on the person using that knowledge and learning more about the condition, how it affects them and more ways to manage it. It depends on "self-management" or "self-care".


• All illnesses depend on a person doing all these things. What makes this different is that the medical articles list this as the most important part of managing OI. They call it "non-pharmacologic management". They talk about medication as second to the non-pharmacologic management.


• Physicians are important for doctor-type things like diagnosis, testing, monitoring for problems and other conditions, and referrals to create the "healing team". But a bigger part of the job for physicians and the rest of the healing team is sharing expertise, acknowledging the person for their courage and accomplishments, help find resources needed, and help the person develop and redesign their recovery plan so that it works for them.


• Not all physicians understand this role. Not all have the resources to do this. The challenge for the person with OI is to find the physician(s) who are able or willing.
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   References

1. Figueroa JJ, Basford JR, Low PA. Preventing and treating orthostatic hypotension: As easy as A, B, C. Cleve Clin J Med. 2010 May;77(5):298-306.  Abstract.  Article PDF.
2. Freeman, Roy. Neurogenic orthostatic hypotension.NEJM 2008;358(6):615-624. Abstract
3. Grubb BP. Postural tachycardia syndrome. Circulation. 2008;117:2814–2817. Abstract. Article PDF.
4. Grubb BP, Karabin B. Cardiology patient page. Postural tachycardia syndrome: Perspectives for patients. Circulation. 2008;118:e61–e62. Abstract. Article PDF.
5. Jacob G, Costa F, Shannon JR, Robertson RM et al. The Neuropathic Postural Tachycardia Syndrome. N Engl J Med 2000;343: 1008-14.
6. 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.
7. Lapp, Charles. Treating CFS & FM: The Stepwise Approach. Webinar - CFIDS.org. May 20, 2010. Video. Slides. Slides with notes. Last Accessed June 30, 2012.
8. Low PA and Singer W. Update on Management of Neurogenic Orthostatic Hypotension. Lancet Neurol. 2008 May; 7(5): 451–458. Abstract. Article PDF.
9. Medow MS, Stewart JM. The postural tachycardia syndrome. Cardiol Rev. 2007;15:67–75. Abstract.
10. Medow MS, Stewart JM, Sanyal S, Mumtaz A, Stca D and Frishman WH. Pathophysiology, Diagnosis, and Treatment of Orthostatic Hypotension and Vasovagal Syncope. Cardiology in Review 2008;16(1):4-20. Abstract.
11. Moya, Guidelines for the diagnosis and management of syncope (version 2009). European Heart Journal (2009); 30: 2631-2671. Abstract. Article PDF.
12. Rowe, Peter.  General Information Brochure on Orthostatic Intolerance and Its Treatment. June 2010. Accessed from http://www.cfids.org/webinar/cfsinfo2010.pdf. Accessed May 28.2012.

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