Where to find help for our teen living with POTS
Hi community,
Our 17yo has been struggling with dizziness, fatigue and overall sick feeling in day to day activities, including their summer job due to POTS (Postural orthostatic tachycardia syndrome). It’s also causing them to struggle with being in good fitness since movement brings on the symptoms. We’re already aware that there are special exercise protocols to follow, but we really need specialized guidance. At the moment we are wondering if a PT or OT or both would be useful, but we hope to find someone who knows and understands POTS. We are also open to other provider recommendations to get better guidance and support. Any experience or success stories will be useful to where we are at in this journey. Thank you!
Jul 5, 2025
Parent Replies
HI there. I'm sorry to hear about your 17yo. We have been through the same thing. There don't seem to be a lot of POTS experts in our area. I highly recommend the book "Living Well with Orthostatic Intolerance" by Dr. Peter Rowe. He is THE thought leader about POTS and works out of Johns Hopkins. When our daughter came down with it at 15, we couldn't get anyone to take it seriously, but luckily it has been in the news a lot more since COVID. Exercise is helpful, but can also cause it to worsen, do most doctors recommend getting it under control before you take up a serious exercise program, which can worsen the situation. You also want to find out what kind of POTS and why the POTS. Unfortunately, we live in a bit of a POTS desert. Our daughter had a cardiovascular workup at UCSF, but POTS doesn't appear on an EKG or holter monitor. You need a tilt table test or just the free "NASA 10-minute lean" test -- which anyone can do, but many don't know about. We found help from the Center for Complex Diseases in Menlo Park and another POTS mom I know got help from Heart of the Valley pediatric cardiology in the Dublin. Wishing you luck and successful treatment.
Unless you're against TikTok, your daughter might want to look at TikTok posts by Mariah Michelle, who has POTS. I don't know anyone with POTS; I started following her 2 years because she's charming, funny, and lives in a gorgeous house. I never knew anything about POTS and learned so much from her. In her library, there's a section called "POTS/EDS related." Your daughter might find some of those posts informative.