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

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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 .

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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.

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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.