So you think you might have POTS:

The most common symptoms of POTS are:

What POTS is:

Postural Orthostatic Tachycardia Syndrome is a form of Dysautonomia (conditions caused by a dysfunctioning autonomic nervous system). POTS currently has no cure and no FDA-approved treatments. Current research is revealing an autoimmune basis for POTS.

What POTS is not:

POTS is NOT orthostatic intolerance, orthostatic hypotension, purely a fainting disorder, a cardiac disorder, an anxiety disorder, nor is it caused by deconditioning. Many patients with POTS are usually misdiagnosed with anxiety conditions at first because there is some overlap in symptoms. However, a knowledgeable doctor would know that although general tachycardia is sometimes seen in patients with anxiety (specifically if they are experiencing a panic attack), this tachycardia will not increase by 30+ beats per minute upon standing like it would for POTS. Unfortunately, the lack of education and awareness about POTS has made it so the average time it takes for someone to receive an accurate diagnosis is 6 years!

What kind of doctor can diagnose POTS?

Any kind of POTS-literate doctor can diagnose POTS. Most people have been diagnosed by a Cardiologist (because they are referred to one due to their tachycardia) or a Neurologist (because of the neurological symptoms often seen in POTS). However, I personally was diagnosed by an internal medicine doctor at a hospital and I know many people who were also diagnosed by Endocrinologists and Family Doctors. Seeing a Cardiologist or Neurologist would be your best bet at first.

How is POTS diagnosed?

POTS is often diagnosed initially by patient history, presented symptoms, and a poor man's tilt table test (measuring your HR and BP while lying, sitting, and standing. A POTS-literate doctor will know more about how to accurately perform this test). If autonomic testing is accessible, this testing may be performed to find out more. Unfortunately, autonomic testing is not always readily available.

If your doctor doesn't know about POTS/doesn't listen:

Read this blog post I published on the topic. You will find knowledgeable and empathetic doctors but unfortunately it'll take you a lot of time and energy. It'll be worth it though.

If you think you might have POTS, I'd recommend reading medical articles online so that you are highly educated on the topic. An educated patient is an empowered patient after all. Diagnosing POTS is actually fairly simple but unfortunately most doctors don't realize this. The current diagnostic criteria for POTS includes an increase in heart rate by 30+ bpm ( 40+ in adolescents) or one that goes above 120bpm within the first 10 minutes of standing up (with the presence of symptoms). You can test this at home with a free accurate heart rate monitor app on your phone. I'd recommend going to your doctor with printed out copies of medical articles (not just blog posts) about POTS, a diary of your symptoms and recorded heart rate, and an article that specifically mentions the diagnostic criteria for POTS (and includes that a drop in blood pressure is not necessary). If possible, I'd recommend bringing a family member or friend who can help you advocate for your health to these appointments.

 

The worst thing you can do to a prideful doctor is interrupt them by saying "I think I have POTS." Instead, present your doctor with all the information you've gathered, and ask them what they think. It's very important that you respect your role as a patient and the doctor's role as a doctor, while simultaneously advocating for yourself. Just because you think you have POTS, doesn't necessarily mean you do have POTS, as there are many conditions with similar symptoms. However, a helpful, open-minded, and trustworthy doctor will help you figure out the cause of your symptoms, instead of dismiss them as nothing or something psychological. If you find yourself, in this position, leave.

 

Unfortunately there are many doctors out there who have good intentions but their ignorance about Dysautonomia conditions makes them come across as desensitized and disrespectful. It might take seeing a few doctors until they finally know what POTS is and know how to treat you but don't give up!

I am not a medical doctor and cannot diagnose you. Please seek medical help and trust your gut instinct about this one.

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The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Stronger Than Pots makes no representation and assumes no responsibility for the accuracy of information contained on or available through this web site, and such information is subject to change without notice.