Understanding PoTS Syndrome: Symptoms, Causes, and Treatment for Long Covid Patients

2023-05-02 14:10:49

The PoTS syndrome is spreading more and more, especially among people with long Covid. However, it is still little known. Recognizing the symptoms might reduce medical wandering.

PoTS syndrome for Postural Orthostatic Tachycardia Syndrome is still little known in France. In particular, it reaches young people who have been infected with a long Covid. What is PoTS Syndrome? What are thes symptoms? How to recognize it and to heal him ?

What is the definition of a PoTS syndrome?

PoTS syndrome or STOP, for Postural Orthostatic Tachycardia Syndrome, is still unknown today in France. It is characterized by elevated heart rate when standing. As Christel Boehm, President of the Living with POTS Syndrome Association, points out, “PoTS syndrome is often mistaken for a panic attack or severe anxiety. The heart rate increases for everyone, but tachycardia is a strong marker of this syndrome: if, when you go from lying down to standing up, your heart rate increases by 30 beats per minute, chances are you have PoTS Syndrome.” STOP can happen at any age, but “more and more young adolescents are being diagnosed, especially following a long Covid”.

What are the symptoms of a PoTS syndrome?

“One of the defining markers of PoTS is the inability to maintain a standing position for more than 10 minutes, says Ms. Boehm. Moreover, “rapid heartbeat causes excess fatiguewhich is characterized by a asthenia sustained and unexplained for patients”. Science is still poorly documented regarding PoTS syndrome. In a minority of patients, the symptoms are severe, “until cause discomfort. Others remain conscious, but with poor blood circulation in the body, they find themselves in a kind of brain fog and are unable to answer simple questions.“explains the president. Other symptoms sometimes accompany the STOP:

  • THE digestive problems (gastroparesis) : slowed digestion, alternating diarrhea and constipation;
  • THE urinary disorders

“It’s the autonomic nervous system that is out of order not the heart system. We cannot define a typical profile, the symptoms being variable from one moment to another of the day and from one patient to another“, specifies the president of the Association. It should also be noted that the PoTS syndrome can make one think of a anxiety attack or a tachycardia attack. PoTS syndrome is debilitating on a daily basis, especially when the patient suffers from another disease. Each effort made results in recovery discomfort more or less intense depending on the severity of the syndrome.

What are the causes of PoTS syndrome?

Not all causes of PoTS syndrome have been fully identified to date. Nevertheless, we know that the STOP can be consecutive to a viral infection, such as long Covid, pneumonia, pregnancy, an accident or post-traumatic stress syndrome“. It seems that there is a genetic part, linked to the transmission of a faulty gene. PoTS might also be related to the Ehlers-Danlos syndrome and chronic migraine. There are also factors that exacerbate symptoms, such as “the heat, poor digestion, change of season or menstrual cycle in the woman”.

What test to make the diagnosis?

The diagnosis is difficult and very long to be made for patients with PoTS syndrome. There is a medical wandering, because STOP is still poorly understood and poorly diagnosed. Holster testing is not always reliable in PoTS syndrome. Rather, the diagnosis is made at a cardiologiste, preferably in a specialized service, to perform a tilt-test. To orient the patient, self-diagnosis is possible. Simply “calm down for 5 to 10 minutes, take your pulse at rest, then take it while standing : if the heart rate increases by at least 30 beats per minute, it is likely that the patient suffers from the syndrome”.

What treatment to treat PoTS syndrome?

► Drug treatment: medications “to calm the tachycardia are usually prescribed. THE beta-blockers are recommended in first intention, but are sometimes incompatible because they lower the tension. And when a patient has this syndrome, their blood pressure is usually low. In recent years, a new molecule has been prescribed, it is ivabradine, a bradycardiac, combined with fludrocortisone and midodrine“This drug treatment is a comfort treatment that relieves patients, but does not cure the disease.

► Management: the patient with PoTS must often select the effort to provide during the day, this is called the “pacing”. The the patient’s day is therefore punctuated by the choices he does, whereas for a healthy person, the actions are linked normally. Exercise rehabilitation makes it possible to maintain a certain endurance and to carry out appropriate exercises in order to circulate the blood. Use of a physiotherapiste trained can be very useful in case of PoTS.

► Adaptation: patients often present with hypovolemia, resulting in a decrease in blood mass. It is therefore recommended to drink at least 1.5 L of water a day. A more salty diet can be interesting, especially in case of hypotension, but you should consult your doctor beforehand. During an outing, it is advisable to bring a fogger, provide a seat and ask for the priority card for queues.

Thanks to Christel Boehm, President of the Living with POTS Syndrome Association.

Source : Diagnosis and treatment of postural orthostatic tachycardia syndromeJune 2022, Canadian Medical Association Journal.

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