Care After the Diagnosis

For many people who have been living with dizziness, nausea, headache, vision changes, shortness of breath, fatigue and not being able to tolerate doing exercise (exercise intolerance), the first step is to find a physician who recognizes the symptoms of orthostatic intolerance.

Now that you have the diagnosis, you have hopefully gotten some guidance from the physician about what you need to take care of it, whether you need medications, and so forth.

The information in the rest of the sections of The Orthostatic Intolerance Center is provided to fill in details and provide additional guidance. Always - check with your physician if you have questions about what is provided here, to see if it applies to you. Check also if the information here conflicts with the instructions and information your physician or healthcare team has given you.

Physicians Working Together

To Diagnose the Problem: Technically, you do not need a specialist to diagnose OI symptoms and their cause. Recognizing orthostatic symptoms and fainting is something that most primary care physicians can do. See First Visit for Evaluation/Diagnosis for more information. You may need a referral to a specialist for special testing.

Referral Center for Diagnosis   If you were seen at a tertiary center, one that has specialists to the specialists to do the testing and make the diagnosis, these physicians may not take care of the day-to-day monitoring, ordering medications and creating your recovery/rehabilitation plan. It is often the agreement that they will make the diagnosis, give general instructions to your primary physician and then be available in the future if things change or get stuck. They should send a letter, visit/consultation notes with their findings and recommendations and copies of all your lab work and test with their results (the official interpretation of the test results).

These specialists usually only directly manage the very difficult, very complex cases. Most people with OI are (fortunately) not that complicated. People with more advanced dysautonomic conditions, like Parkinson's or Multiple System Atrophy, or more advanced OI with dysautonomia may need more guidance from the specialists.

Day-to-Day Care   You will need a primary physician - pediatrician, internal medicine or family practice - who will order your medications, your therapy, monitoring lab tests and so on.

Managing OI is actually very involved, at least at the beginning until it gets stabilized. It can be even more complex and involved than managing insulin and medications to control blood sugars in people with diabetes. It takes time to work with the person, to understand the symptoms and make adjustments to the medications and to decide what drugs to try first, then second and what doses to use. Most people with diabetes are not managed by the specialists (endocrinology); most people with diabetes are taken care of by their primary physician (Family Practice, Internal Medicine and Pediatrics).

The challenge is that many primary care physicians are not as familiar with orthostatic intolerance and working with the drugs as they are with diabetes or the recovery process, as they are with more common conditions like strokes or broken legs. Unfortunately, most primary physicians do not have the time or the staff to help keep track of things. It is very easy for a person to get started and then get lost.

Help From The OI Center

We are hoping we can serve as resources to them and you on this. We will keep developing and posting material for you and your healthcare team and the other members of your healing team. Just let us know what you need. Sign Up

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