Medical Care

This section addresses the major questions about medical care, working with the healthcare professionals, getting guidance, medications, recovery plans and addressing related conditions.

Getting a Diagnosis   The first challenge is finding a physician who understands orthostatic intolerance or who is open to considering that your symptoms may be due to an orthostatic condition. Part of the challenge is not overwhelming them with the details but being sure they get the right information. Sometimes, the conversation and understanding between a patient/person and their physician (healthcare professional) is more like 2 people talking in different languages from different sides of a river. Each one talks about and hears things differently. We'll try to sort out the issues and help you find medical help and help the healthcare team understand your symptoms and how they might fit together as orthostatic intolerance.

On-Going Care:   You will need a healing team to manage your medications, monitor labs and monitor your progress. We have highlighted issues here and provided forms you can use to document how you are doing and track changes over time. (These forms address fatigue, symptoms, activities and function. Monitoring your activity program are included in the Move Into Health section.)

Managing Orthostatic Intolerance:  Once the diagnosis is made, the focus is on how to manage things. Sometimes, it's not clear what the doctor and the person with OI think the goal of management or treatment is. We have spelled this out in the Goals. We take a "holistic" approach to health and believe that it is not enough to just get by, we would like to see you do as well as you can in all parts of your life. It is not enough to be able to go to work or school and then crash when you get home. We want more and think the recovery/rehabilitation should continue until you reach what are realistic goals for you, with the highest quality of life and activity that is possible.

We only introduce the topics and specific things that will need to be addressed in this part. The section on Everyday Self-Care has all the details. The section on Moving Into Health has the details on the physical part of recovery. Deal and Heal addresses more of the issues, how to deal with things and provides tools and new skills to help you heal.

Medications Used with OI:  There are a number of symptoms that occur with orthostatic intolerance. Some start right after standing up. Some develop after a person has been standing for 3-10 minutes. Some don't develop until a person has been up more than 30 minutes. There are also symptoms due to the underlying problem that can last for hours to days and weeks.

Recovery:   The big question is whether it is possible to recover, how many recover from OI, from NMH and POTS. A second part of the question is 'how" do they do it? We will provide guidance on what to look for in research protocols and rehabilitation programs and highlight successful elements that are included.

Related Conditions:  There are often other medical conditions that are present when a person has OI. There are conditions that can contribute to OI and trigger it when they are active. There are also conditions that develop secondary to OI - as a result of having OI. These are addressed in this subsection.

Author: Kay E. Jewell, MD
Page Last Updated: August 24, 2012