Did medical school prepare you to treat POTS patients?
Dr. Plotnikoff: POTS was formally described after I had finished my medical residencies. But, as a hospital chaplain, I was well prepared to listen deeply and to trust the patient's experience of their body. And, as a physician, I was well prepared to generate both hypotheses and an expanded differential diagnosis for any phenomenon. Moreover, my education emphasized the importance of continual professional growth and development. So learning about POTS logically followed.
What do you wish more physicians knew about POTS?
Dr. Goodkin: I wish physicians knew even the basics about POTS. That's why 9% of patients are diagnosed by their primary care physician. Almost all patients see a cardiologist. I know few cardiologists that knew what orthostatic intolerance was. Even cardiac electrophysiologists who are supposed to be experts often don't know what to do. POTS is an illness of the autonomic nervous system and neurologists for the most part are not knowledgeable. Lack of public awareness is a major problem. The failure of the American College of Cardiology and American Academy of Neurology to take POTS seriously and train their members is a major problem.
Is POTS a big deal? Isn’t it just a nuisance symptom?
Dr. Goodkin: POTS is a big deal. It is very disabling with 25% of patients unable to work or go to school. People who have it often don’t feel like going out with their friends. People tell them they look fine but they feel awful. Physicians don't know what's wrong and think it's psychological. It's awful to be sick and not be taken seriously. Passing out, having your heart race, vomiting, being exhausted and not being able to think straight are not "nuisance" symptoms.
Isn’t POTS caused by deconditioning?
Dr. Goodkin: POTS is not just deconditioning. Many people who develop POTS were highly active at the time they became ill. Normal people who do not exercise do not get POTS. Something else starts the problem.
Isn’t POTS just stress?
Dr. Goodkin: POTS is not just stress. It is not caused by stress but having it causes a lot of stress for the patient because they feel horrible.
Are there alternative therapies to try if “the basics” (fluid, salt, compression stockings, exercise, elevating the head of the bed, and most common pharmacological treatments) don’t help enough?
Dr. Plotnikoff: Yes, but such therapies are recommended based upon a very individualized approach. My practice focuses on complex, chronic, mysterious illnesses. This means that my practice is neither primary nor sub-specialty care. To serve our patients well often means addressing nutrition, metabolism, microbiomics, genomics, toxicology, autoimmunity as well as spiritual concerns. Optimal Recovery often means addressing the Five Fundamentals (Breathing, Eating, Sleeping, Moving and Connecting) as well as the Five Stressors (Environmental, Physical, Emotional, Pharmaceutical and Dietary).
Many patients ask about LDN (low dose naltrexone). Do you have thoughts on using LDN in POTS patients?
Dr. Plotnikoff: I have been prescribing LDN for 25 years for multiple reasons including pain, autoimmunity, and immune modulation. In general, I have found LDN to be very helpful and, in many cases, extremely helpful. I do not have data to report on LDN for persons with isolated POTS however. This is a great area, however, in which to share experience and formally collect data.
When do you look for an underlying cause of POTS versus just treating symptoms?
Dr. Schofield: As with any abnormal clinical state, if we can identify and treat the underlying cause, we are much more likely to significantly improve the patient’s health and wellbeing than if we just use “band aid” treatments, such as beta blockers or florinef. For example, if there is severe anemia, most physicians would try to determine if the patient has a bleeding ulcer, leukemia or other cause rather than just giving blood transfusions. Dysautonomia is like anemia - it is an abnormal clinical state and an underlying condition has to be driving that abnormal clinical state. I believe we should work to improve awareness of this concept in the medical community and work to characterize the underlying causes and their incidences in patients with dysautonomia.
Dr. Goodkin: An underlying cause of POTS should always be sought, and there are a number of possible culprits. Autoimmune problems are seen in approximately 20% of POTS patients. 50% have small fiber neuropathy and sometimes respond to IVIg. It is possible that biomechanical problems, mainly from injury, is responsible for up to 50% of POTS cases and often responds to cranial osteopathic manipulation. Ehlers Danlos is responsible for many cases, and some of those patients have Chiari I. More have craniocervical instability from ligamentous laxity between the skull and neck. Almost all have POTS. One needs to look for mast cell activation syndrome. Some patients are adrenally insufficient. It should be checked in all patients. Iron deficiency is common and exacerbates symptoms.