June 21, 2016

The Social Cost of POTS

96% of patients said POTS prevents them from socializing as much as they'd like, almost half of patients go out with friends less than once a month, and we explore the reasons why.

September 15, 2015

What helped POTS?!

450 POTS patients rated 28 different non-drug therapies, including 18 dietary approaches, massage, physical therapy, counseling, essential oils, IV fluids, compression stockings, abdominal binders and more. We list ratings for which therapies "helped lots!" or "helped a little," along with what "made my POTS worse."

August 16, 2015

POTS PatientsCount.org Newsletter #3

August 16, 2015

What helped different groups of POTS patients?

We look at ratings of what helped patients who listed autoimmune disorders, MCAD, and EDS as the cause of their POTS.

July 9, 2015

POTS PatientsCount.org Newsletter #2

July 6, 2015

Potty problems and POTS

Yes, we are going there. 422 POTS patients share their experiences with constipation, diarrhea and "toilet terrors."

July 5, 2015

POTS and relationships

We look at patients' reports about whether POTS hurts different kinds of relationships.

July 4, 2015

POTS symptoms and frequency

We look at 422 POTS patients' ratings of how often they experienced various symptoms in the past month.

July 2, 2015

Elevating the head of your bed: Does it help POTS?

We look at patients' ratings about how much it helps to elevate the head of their beds, as recommended by some POTS specialists.

July 2, 2015

Journey to diagnosis: 5.8 years

We report the average age of POTS patients at first POTS symptoms, first time consulting a doctor about it, and getting an official diagnosis. We also report different types of onset, and how many doctors were seen before one recognized POTS.

June 27, 2015

POTS PatientsCount.org Newsletter #1

June 26, 2015

Counseling for POTS: Effective?

We look at patients' ratings of how well counseling helped with their POTS.

June 26, 2015

Acupuncture for POTS: Worth a try?

We look at how many POTS patients have tried acupuncture and whether they thought it helped.

June 26, 2015

Physical therapy for POTS: Does it work?

We look at how many POTS patients have tried physical therapy and how well they thought it helped manage their POTS.

June 26, 2015

Essential oils for POTS: Worth a try?

We look at how many POTS patients have tried essential oils and ratings about whether they helped.

June 22, 2015

Overall impact of POTS

We report the impact of POTS on different aspects of life, such as financial, social, physical, mental capabilities, fitness, sleep and more.

June 18, 2015

Financial cost of POTS to patients

We look at patients' estimates of how much it costs to live with POTS, including out-of-pocket expenses for medications, treatments, doctor visits, lifestyle accommodations, lost wages, and other POTS-related needs.

June 18, 2015

Everyday challenges with POTS

POTS patients rated various daily activities according to how challenging they are because of POTS, and we noticed a trend that may be keeping POTSies at home.

June 16, 2015

Demographics of our respondents

We look at the breakdown of gender, age, and nationality of the 459 respondents to our first POTS Patient-Powered Survey.

June 14, 2015

Our causes of POTS

446 POTS patients reported on whether they know the cause of their POTS, and if so, what it is. We learned some very unique ways to get POTS.

June 12, 2015

Teenagers' social lives with POTS

We look at 13- to 22-year-old patients' ratings of how (and why) POTS has affected their social lives and relationships. We also list some great resources for finding support, community and expert help.

June 9, 2015

Abdominal binders and compression stockings: Do they help?

We look at 430 patients' ratings about whether abdominal binders and compression stockings helped or made their POTS worse.

June 9, 2015

What puts the pain in POTS?

The POTS pain stats, from headache to toe.

May 31, 2015

Massage for POTS: Worth a try?

We look at how many POTS patients have tried massage and whether they thought it helped.

May 28, 2015

Unusual POTS symptoms (or are they?)

We tally the symptoms that POTS patients wrote in when asked if they had "other symptoms," besides the most common.

May 23, 2015

Iron deficiency and POTS, part 2

We continue our look at iron deficiency anemia among POTS patients, find that it's apparently "a POTS thing", in terms of prevalence and complexity, and find out the kidneys might even be involved. Where's Dr. House when you need him?

May 19, 2015

Which diets help POTS?

We look at POTS patients' ratings of 18 different diets and feel encouraged by the results!

May 17, 2015

Iron deficiency and POTS, part 1

50% of 423 POTS patients reported they'd had iron deficiency anemia. We look into the numbers to see if that's a lot.

May 15, 2015

Some like it hot...but not many

We look at 424 patients' perceptions of how heat and cold affect their POTS symptoms.

May 15, 2015

POTS, work & disability

We look at 417 POTS patients' answers about work, POTS-friendly jobs, and applying for disability benefits.

May 12, 2015

How many doctors does it take...?

Did you have to see many doctors before one recognized that you had POTS? We show the stats...and feel bad for those who had to see 40+!

May 10, 2015

Activities that help POTS patients cope

We look at the different activities that help us feel better when POTS gets us down.

April 11, 2015

POTS antibodies found, part 1

Researchers at Vanderbilt found autoantibodies targeting adrenergic receptors in all 14 POTS patients tested and in 0 of 10 control subjects. The autoantibodies appear to interfere with vasoconstriction and could cause tachycardia.

April 10, 2015

POTS after HPV vaccination

53 Danish patients with suspected post-vaccination POTS and/or dysautonomia had "a high degree of consistency in the symptoms," especially headache, dysautonomia symptoms, excessive fatigue, cognitive dysfunction, disordered sleep, GI problems and widespread pain of a neuropathic character.

April 10, 2015

POTS is much more than tachycardia

Patients at Baylor Medical Center reported on 34 symptoms associated with POTS.