by on May 12, 2019

in Monthly

Whenever I have residents or medical students in my office, I do my best to remind them to enquire about the quality of life for patients who come to meet with us. In our zest to deal with facts and evidence, we may at times forget to ask this important question: “Please tell me more about how this condition affects the daily functioning of the family”

It has been said that doctors with a high emotional intelligence should know more about their patients than the illness itself. Both wisdom and compassion are needed—like two wings of a plane. Recently a patient in my clinic presenting with POTS illustrated what is meant by quality of living.

In 1993 the term POTS was coined by a neurologist from the Mayo clinic. POTS stands for postural orthostatic tachycardia syndrome. It is a condition where the heart rate increases by 30-40 beats per minute within the first ten minutes of standing, in the absence of a low blood pressure (BP)

Usually POTS can be diagnosed with bedside measurements. The BP and heart rate (HR) are monitored while the patient is horizontal and then again with the patient in the standing position at two, five and ten minute intervals. A HR which climbs over 120 or rises by 30 to 40 beats per minute is what clinicians are looking for.

Many POTS patients also experience fatigue, headaches, nausea, diminished concentration and coldness or pain in the extremities.

In the past many of these patients were mistakenly diagnosed as being anxious. Modern consensus however agrees that POTS is not caused by anxiety, but rather by a malfunction of the patient’s autonomic nervous system (This is the part of our nervous system which functions or malfunctions automatically—we cannot control it with our own abilities or insights)

The huge challenge for patients with POTS and doctors who are experienced in dealing with this situation is to look for a cause. There is no single cause and thus it is referred to as a heterogeneous condition—meaning it may have many causes.

There are some conditions known to be associated with POTS. A partial list includes: Lupus, Sarcoidosis, Lyme Disease, infections by the Epstein Barr virus, Hepatitis C, multiple sclerosis, mitochondrial disease and Ehlers Danlos Syndrome (A collagen protein disorder that leads to hypermobile joints among other things) Approximately 40% of patients with Chronic Fatigue Syndrome have POTS.

About 80% of patients with POTS are female and the onset can occur anywhere between ages 15 and 50 according to the Dysautonomia International organization, a resource geared toward providing facts and ongoing education for patients and doctors. The exact prevalence of POTS is unknown, but the estimate based on research out of the Mayo Clinic and published data obtained from PubMed, suggests a number of 170/ 100,000.

There is no cure for POTS. The longest follow-up study comes from the Mayo Clinic where pediatric patients were followed up between 2003 and 2010. Only 18% of POTS patients experienced a resolution, while 52% reported persistent but improved symptoms. Some patients will not improve and may actually worsen over time and as a result 25% of POTS patients are disabled and unable to work.

It is important that these patients be seen specifically by clinicians who are experienced in looking after POTS patients. One can only imagine the impact on daily living in patients who were never diagnosed correctly or told that the symptoms may be due to panic attacks or anxiety.

Most clinicians will suggest an intake of more fluids daily, an increase of salt, compression stockings, raising the head of the bed, and inclined exercises such as rowing, swimming or recumbent bicycling and a very intentional goal of at least eight hours of sleep every night. Lifestyle alone does not always solve the problem.

Medication may be used in the event of lifestyle adjustments not working, and certainly if the quality of life is sub-optimal. Beta blockers, SSRIs, Fludrocortisone and benzodiazepines have been used with mixed success.

One can imagine that a condition which has no single specific cause, which does not have a cure, and which can cause various degrees of disabilities may impact mental health and cause a secondary depression or anxiety. However, a Mayo Clinic study which followed patients for seven years concluded that patients with POTS end up with a mental health score similar to the national norm.

For more information on POTS visit www.dysautonomiainternational.org  This site will provide educational videos and share stories which may inspire and provide hope to patients who struggle to adjust to this relatively rare but potentially debilitating condition.


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