Unrecognized Nervous System Disorder Affecting Young Women

Postural tachycardia syndrome affected mostly young educated women

(RxWiki News) Postural tachycardia syndrome is a condition that is often mistaken for chronic fatigue. However, people with postural tachycardia syndrome may have worse physical and social difficulties than those with fatigue.

A recent study found that postural tachycardia syndrome (PoTS) mostly affected young, well-educated women.

The researchers concluded that because the condition is still so poorly understood and has no official treatment, PoTS patients experience crippling symptoms that significantly affect their ability to perform day-to-day activities.

"Seek medical care if you have trouble with daily activities."

The lead authors of this study were Claire McDonald, PhD, and Julia L. Newton, PhD, FRCP, from the Institute for Ageing & Health at the Medical School of Newcastle University Newcastle upon Tyne, United Kingdom.

The study included two groups of patients with PoTS from the United Kingdom.

PoTS is a nervous system disorder in which patients experience symptoms such as extreme rapid heartbeat, dizziness, nausea, excessive fatigue, trembling, fainting and poor concentration, but only while standing up. These symptoms are sometimes severe enough that day-to-day activities like eating and bathing are hard to complete.

The researchers explained that the impact of PoTS on a patient’s quality of life has previously been compared to the level of disability associated with chronic heart disease.

One group was recruited through a national patient support group called PoTS UK and consisted of 84 patients. The other group consisted of 52 patients who were diagnosed at the Falls and Syncope Service Newcastle upon Tyne Hospitals National Health Service Foundation Trust between May 2009 and April 2012.

All the PoTS patients completed questionnaires to determine each patient’s level of fatigue, sleepiness, orthostatic intolerance (symptoms only present when standing up), anxiety and depression, ability to carry out routine tasks and brain power.

The PoTS UK group was 4 percent male compared to 19 percent of the PoTS clinical group. A total of 60 percent of all the PoTS patients had a degree from a university or postgraduate program.

The researchers discovered that the patients in the PoTS UK group were more likely to be working than the patients in the PoTS clinical group, and also working more hours.

The patients in the PoTS UK group were older when they were diagnosed compared to the other group.

The severity of symptoms was similar in both groups.

This study also included a control (comparison) group of 136 sex- and age-matched chronic fatigue syndrome (CFS) patients who tested negative for PoTS. This group was used for symptom intensity comparison.

The findings revealed that the CFS patients and the PoTS patients had similar levels of fatigue and sleepiness, but the symptom burden was much higher for the PoTS patients.

Overall, 21 different treatment combinations were discussed. One-third of the PoTS patients were not receiving treatment at all.

The researchers concluded that PoTS patients often have such intense symptoms that their quality of life may be significantly lowered. Despite this, treatment remains inconsistent and patients are often too disabled to keep a job or fully take care of themselves.

In addition, PoTS is not recognized as a disability under the law like CFS. Because the condition is not recognized as an official disability, insurance companies aren't obligated to pay for treatment and it is harder to get disability pension. Therefore, the research team believes that patients may not recover and may continue to worsen over time.

Previous studies have suggested that PoTS affects around 170 people out of every 100,000 people in the United States. Among this population, one out of four patients is unable to work due to their disability.

The researchers argued that awareness of PoTS needs to be seriously increased in order to improve understanding, diagnosis and management of the condition.

This study was limited because much of the data were based on self-reports.

This study was published on June 16 in BMJ Open.

The UK National Institute for Health Research’s Biomedical Research Centre in Aging provided funding.

Review Date: 
June 16, 2014