Disclaimer: I am not a medical professional. I can only speak to my own experience and hope that gives you some insight into what POTS is and how it can affect you or the people around you.
If you are under 22, I wouldn’t go anywhere but Children’s Hospital if there is one close by. I cannot speak highly enough of them, particularly the Boston branch. The departments work together to create a plan and get you all of the help you need. It’s unlike anything I’ve seen since getting too old to go there.
If you are older than 22 you need to look elsewhere. If you are close to a Mayo clinic then I would consider that. Dr. Grubb of the Mayo clinic has been the number 1 POTS doctor for more than a decade, he’s supposed to be amazing. More than once, my mom considered flying us out there for an appointment with him. Now there is so much more info on POTS that I wouldn’t’ think you would need to fly anywhere unless you’re in a medical dead zone.
Which doctors should you see?
Primary Care
Find a really good primary care doctor who knows about POTS. They will be your lifeline to the medical world. They are amazing if they know what they’re doing and can be terrible if they don’t, so pick very wisely. Don’t worry about offending anyone if you need to switch and don’t discount Nurse Practitioners, I picked my doctor because my NP knew about POTS and was willing to listen and work with me. I only met my doctor once before being able to switch my PC over to my NP. It’s been a wonderful change.
Cardiology
A cardiologist studies the heart and its functions.
You will most likely see a cardiologist. This will probably be your first stop to either getting diagnosed or once you are diagnosed. They will run an EKG, which is not scary at all and takes longer to put the stickers / leads on then to run the test but they’re just checking to see if your heart is functioning properly. They will check your heart rate and blood pressure, probably laying down, standing, laying down again then sitting. Then they will come up with a plan to help you and your symptoms.
Cardiology is great for managing your heart rate and blood pressure, I would say after a while the appointments seem redundant when nothing is changing but you can always change the frequency. As a preteen / tennager I saw my cardiologist every 3 months, in my later teen years / early adulthood I switched to every 6 months and now I’m at once a year unless I need something. You are in control of the frequency of your appointments, once you get a better handle on the POTS you can change the frequency.
Immunology / Allergy
An Immunologist / Allergist looks at your immune system and how it reacts to the world around you.
Allergy and immunology tend to go hand in hand. I saw an allergist / immunologist when I was little for allergy testing which is very common with kids. When I was diagnosed with POTS I was recommended to go to an immunologist due to my weak immune system. You might or might not benefit from seeing an immunologist / allergist depending on your symptoms.
Neurology
A neurologist studies the brain and nervous system.
There are different subsets of POTS (you can read about that here) and one of them is more neurological than the others. I believe I have the neurological one but have never been told that by anyone. If you are experiencing any neurological symptoms you should see a neurologist.
Neurologist symptoms that should bring you to a neurologist are: migraines, dizziness, random eye movement, tingling under the skin, nerve pain, neuroply or feeling numb in places. Neurologists are great at helping with pain management and also dealing with the random POTS things that pop up.
G.I.
GI or gastroenterology is the study of the stomach and digestive track.
I know some people who have POTS and do not have stomach issues. I personally struggle with a lot of stomach issues (read more here) and GI has helped me remarkably. There is a lot of trial and error with GI just like with any other doctor. I have to say seeing a GI when I was 16 changed my life, it allowed me to actually eat and gain weight which in turn made me feel better and allowed me to get active.
Rheumatologist
Rheumatologists study musculoskeletal disease which tends to come in tandem with autoimmune diseases.
I personally have yet to see a rheumatologist but I have an upcoming appointment. The goal of seeing a rheumatologist is to see if there are any other autoimmune problems that are affecting your POTS. Rheumatologists can help discover why you are having joint pain, muscle pain and possibly inflammation.
Further Reading
., Brooke C. “When To See An Allergist – Treat and Prevent Allergies | ACAAI Patient.” American College of Allergy Asthma and Immunology, https://acaai.org/do-you-need-an-allergist/when-to-see-an-allergist/. Accessed 20 June 2023.
“Find a Doctor.” Blue Cross Blue Shield, https://www.bcbs.com/find-a-doctor. Accessed 20 June 2023.
“Find a provider.” Mass General Brigham Health Plan, https://massgeneralbrighamhealthplan.org/find-provider. Accessed 20 June 2023.
Garrow, Sydney. “What Is a Primary Care Physician or Doctor?” eHealth, 30 September 2022, https://www.ehealthinsurance.com/resources/individual-and-family/primary-care-doctor-important. Accessed 20 June 2023.
“Postural Orthostatic Tachycardia Syndrome (POTS).” Johns Hopkins Medicine, https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots. Accessed 20 June 2023.
“Rheumatologist: What They Do and Conditions They Treat.” Cleveland Clinic, 30 January 2022, https://my.clevelandclinic.org/health/articles/22335-rheumatologist. Accessed 20 June 2023.
Sachdev, Poonam. “What Is an Immunologist? What They Do, When to See One, and What to Expect.” WebMD, 13 December 2022, https://www.webmd.com/a-to-z-guides/what-is-an-immunologist. Accessed 20 June 2023.
“What Is a Cardiologist – Cardiology – Highland Hospital – University of Rochester Medical Center.” URMC, https://www.urmc.rochester.edu/highland/departments-centers/cardiology/cardiologists/what-is-a-cardiologist.aspx. Accessed 20 June 2023.
“What is a Gastroenterologist? When to See One & What They Treat.” Cleveland Clinic, 14 September 2022, https://my.clevelandclinic.org/health/articles/24198-gastroenterologist. Accessed 20 June 2023.
“What Is a Neurologist? What They Do & When to See One.” Cleveland Clinic, 11 January 2022, https://my.clevelandclinic.org/health/articles/22277-neurologist. Accessed 20 June 2023.