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POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME (POTS)

This site is only for informational purposes. 

POTS FEELS LIKE...

‘In the beginning, I felt tired all the time.  I couldn't stand for long periods and could not figure out why.  I learned to monitor my heart rate and realized it was frequently above 130 when doing something as simple as standing up and walking around.  I also couldn't and still can't handle being hot.  Heat makes everything worse.’  POTS Patient

WHAT IS POTS?

 

Dysautonomia International thoroughly describes POTS on their website.  click here for info

When looking for research articles, it can be helpful to search other conditions you have and POTS to see if they are related. If you are specifically concerned about the treatment, it can be helpful to search that specific treatment.  Check with your local library if the articles you need aren't free.  Google Scholar is helpful and has a lot of free resources.​

HELPFUL RESEARCH ARTICLES AND MEDICAL SITES

Research articles can be helpful and validating.

EXERCISE, SALT, AND PACING FOR POTS

Exercise is often recommended to treat POTS, but it's easy to over do it.  Here are some tips!

Image by Haley Phelps

GETTING A DIAGNOSIS AND TREATMENT

If you think you have POTS, use this info to get to the right doctor or ask your primary care doctor to preform the tests.

Doctor's Appointment
  • Many struggle for years to get a POTS diagnosis and are instead told they have anxiety, even by cardiologists.  Since COVID, more practitioners know about POTS, but still not enough.  There is now an increase in research and more awareness, but COVID Long Haulers are also frustrated with the lack of treatment and awareness of POTS.

  • Use the FB pages below to find a doctor in your area.  It's important to find a doctor familiar with POTS, if not, they may tell you it's anxiety.  You may also try searching your state's name and POTS or Dysautonomia on FB to find more FB pages.  Some states also have pages for COVID Long Haulers that have recommendations for POTS doctors in your area.  Currently, not a lot of doctors advertise that they treat POTS, but this might be changing due to COVID Long Haulers.

  • Multiple specialists treat POTS, usually cardiologists, but not all cardiologists treat POTS.  It is very difficult to find a dysautonomia specific doctor and if you do, there is probably a very long waiting list.  

IN THE NEWS

Many people share their stories because it was so difficult to get a diagnosis, even after Long COVID.

FACEBOOK GROUPS FOR POTS

It can be helpful to connect with others about their experiences.  You can ask about doctors in your state, how their treatment went, compare symptoms, and get support from others who understand what it's like to have POTS.

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  • Try to join groups with the most members to give you a larger sample size and a higher probability of finding someone with symptoms like yours. 

  

  • Remember that Facebook is public and follow the group rules. 

  

  • Go to this page for more helpful hints on using Facebook as a resource.

  • We've listed a few groups, but there are others.  Pick your favorite and disregard the others.  "POTS: Fully Recovered" is a helpful group because it's nice to see others who have recovered and what they did to achieve recovery.

  • Long Covid Groups specific to your state can also have helpful POTS resources.

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