Getting Medical Help

Doctors and Tests

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.

This first step confirms helps in more ways than one:

  • It helps confirm:
    • You are not "crazy".
    • You are not making these things up,
    • What you are experiencing is not "in your head".
    • Your symptoms are not due to panic attacks or whatever other things you might have been told.

  • Even if you don't know exactly what is causing your orthostatic intolerance symptoms:
    • You can start to do things that will help control the symptoms.
    • It will at least clarify what you should NOT do - what will make it worse.
What kind of a physician do I need? Do I need a specialist?

That depends - what are you looking for? Are you looking for someone to diagnose your problem? or are you looking for someone to manage it with you, on a day-to-day, month-to-month basis? The answer can be very different.

Who's Who?

Primary care physicians are the physicians we see for everyday care - we see them first. They are usually trained in Family Medicine, Pediatrics, or Internal Medicine.

Specialists - The specialists who do research on conditions that cause orthostatic intolerance and do the more technical studies to diagnose the conditions are Cardiologists (heart specialists) and Neurologists (nerve specialists). Often, they are "specialists in the specialty" or "subspecialists" because many focus just on the part of the body that causes the problem. Specialists may also have the most medical experience with the medications that are used. However, the reality is that their time is usually more limited. Recovery from significant physical deconditioning could be under the guidance of a Physical Medicine and Rehabilitation (PMR) specialist.

Specialists often act as "consultants" to the primary physicians. As consultants, they go over the history, physical, and specialty exams to confirming the diagnosis. They may recommend treatment for the primary physician to order and manage. They would often be available for the primary doctor to contact if they get "stuck". For example, if the primary care physician has tried all the recommendations and the person is not getting better. The specialists could provide additional suggestions for management or testing for something else that might be going on.

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 for special testing.

To Help Manage Your OI and recovery plan: Technically, the answer is still "no". Managing the symptoms, the things to be done to stabilize symptoms and the medications can be done by a primary physician. It is very much like all medical conditions, primary care physicians have the knowledge and skills to take care of the basics.

Managing OI is a lot like managing blood sugar in people who have 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 and supporting you through the recovery process as they are with diabetes. We are hoping we can serve as resources to them and you on this.

Do I need a lot of tests to know if I have orthostatic symptoms?

No. In most people, it is possible to tell if a person is having orthostatic symptoms from the person's history, the physical exam, and blood pressure/pulse testing in the office. (When a doctor asked you to tell them what the problem is, how it started, and asks for the details, they are getting "your history".)

There are a few basic questions that a person has when they have new symptoms. Physicians ask themselves many of the same questions. Tests are done when more information is needed to answer these questions:

  1. What are the symptoms?
  2. How long have they been there?
  3. What body part do they come from?
  4. What is causing the symptoms?
  5. Has there been damage or harm to the body or the part of the body that is involved? How bad is the damage or harm?
  6. Can the cause of the problem be treated? Can it be cured?
  7. How likely is it that the cause of the problem will lead to the person's death? [Is it likely to be in a short time (days, weeks months) or is it a long time process(years)?]
Why would I need more tests?

Tests are done to find out
    •   the cause of the problem and     •  how extensive it is (how many parts of the body are involved)

NEW TESTS: Once the diagnosis is made, the question is what other tests are there that could be done? In medicine, there are often lots of possible tests! The question is:

  • What would these other tests add to what you already know?
  • Would the result change the diagnosis?
  • Would the results change the treatment?
  • Would they change anything about how you will manage their condition?

REPEAT TESTS: If you have had these tests before, why would you need to repeat them?

  • Was the diagnosis clear before?
  • Is it likely the body/organ would have changed since the last test?
  • Would it make a difference in treatment if it has changed (gotten worse or better)?
  • Is there another way to know if the body has changed - Can you tell from changes in symptoms or what you can do now compared to before?

Sometimes, doing more tests confirms something that is already suspected but it doesn't make a difference in treatment or the future. These kinds of tests may satisfy the physicians' curiosity or it may add information about the condition but it doesn't change things for this person.

In many cases, insurance companies have looked at these studies and decided that they are "not medically necessary" - because they do not change the diagnosis, the treatment or the future. For example, some insurance companies do not cover some of the autonomic nerve studies(e.g. Sudomotor studies) sometimes ordered when POTS is suspected.

Author: Kay E. Jewell, MD
Page Last Updated: August 23, 2012