What is POTS?

Dr. Martina Melzer, published: 06/29/2022

The abbreviation POTS stands for postural orthostatic tachycardia syndrome. POTS is a condition called dysautonomia, which is a malfunction of the autonomic nervous system. It is considered a chronic multisystem disorder and predominantly affects young women. POTS often occurs together with migraine, Ehlers-Danlos syndrome, mast cell activation syndrome, autoimmune diseases, Long Covid and ME/CFS.

There are several forms of POTS:

• Neuropathic POTS: This form is associated with dysfunction or damage (this is still unclear) to small nerve fibers, called small fiber neuropathy.

• Hyperadrenergic POTS: This form is probably caused by excessive concentrations of norepinephrine in the body, that is, overstimulation of the activating part of the autonomic nervous system, the sympathetic nervous system.

• Hypovolemic POTS: Too small a blood volume most likely causes this form.

• Secondary (or autoimmune?) POTS: This form occurs together with autoimmune diseases such as Sjögren's syndrome or Hashimoto's thyroiditis.

In recent years, specific autoantibodies have been found in people with POTS that attack components of the cardiovascular system or autonomic nervous system, among others. POTS also often begins after an infection. So, in addition to the autonomic nervous system, the immune system also seems to play a role (which doesn't surprise me).

Exactly what goes on in the body during POTS is not yet entirely clear. However, due to the potential triggers mentioned above, the organism does not properly manage to adjust blood flow when standing. When we normally stand up, autonomic nervous system messengers such as norepinephrine cause the blood vessels in the lower half of the body to contract and the heart to beat a little faster. This ensures that enough blood arrives in the upper half of the body. In POTS, too little blood arrives "at the top," which explains the typical symptoms when standing.

On YouTube, Spotfiy and Anchor (in German, please activate subtitle!): POTS - this is what helps me

The most characteristic symptom is a racing heart when standing. However, POTS causes many other symptoms. For example: lack of energy, headache, brainfog, fatigue, muscle weakness, chest pain, general feeling of weakness, dizziness, fainting, tremors, bluish discolored feet or legs and numerous gastrointestinal problems. These can range from nausea to bloating to stomach pain and constipation. In rare cases, gastroparesis can occur, which is delayed emptying of the stomach or even paralysis. Even though POTS is not a life-threatening condition, but "only" a malfunction, people with POTS repeatedly have to be taken to the hospital as emergencies because their heart rates reach exorbitant levels.

To diagnose POTS, an appropriate physician must essentially perform two simple tests: the Schellong test and the tilt table test. This requires the heart rate to increase by at least 30 beats per minute within 10 minutes in a standing position compared to a lying position. For adolescents, an increase of 40 beats per minute has been established. You must also have the typical symptoms. In some people, blood pressure drops suddenly during the test, in others it stays the same or rises. However, it should not drop in the first three minutes. Then it is more likely to be orthostatic hypotension, i.e. a drop in blood pressure when standing.

In addition, of course, numerous other possible causes must be thoroughly ruled out!

Besides POTS, there is the so-called IST: Inappropriate Sinus Tachycardia. In other words: inappropriate heart beat. In this case, one has a strongly increased resting pulse with more than 100 beats per minute.

There are a few general recommendations:

To increase blood volume:

• Drink 2 to 3 liters of fluid, preferably water.
• Take more salt (3 to 10 grams of table salt daily)
• Possibly electrolyte solutions
• Possibly elevate the head from the bed

To make it easier for the veins to work:

• Compression socks or tights
• To lie down more often and elevate the feet

To carefully counteract the muscle loss often present in POTS:

• Adapted exercise such as strength exercises for the legs while lying or sitting, and some aerobic training (those with concurrent ME/CFS or Long Covid really need to find their individual movement regimen, but it's important to do something!)

Medications:

• Possibly special medications in consultation with the physician
• In special cases the administration of immunoglobulins (antibodies) into the vein (IVIG)

Nutrition:

• Often, people with POTS have problems with blood sugar. Some even have insulin resistance. This means that the blood sugar no longer reaches the cells because they no longer respond to insulin. Therefore, it makes sense to avoid fast-digesting carbohydrates and eat slow-digesting ones. You may also tolerate several small meals better than a few large ones. If you need a snack, I advise "high fat, low carb". Alcohol is not recommended, as it dilates the blood vessels and let the blood pool in the lower half of the body. Whether coffee is good for you or not, you have to find out for yourself. After all, it contracts the vessels, but it also stimulates the activating part of the autonomic nervous system, the sympathetic nervous system.

More info on therapies:
https://www.dysautonomiasupport.org/what-is-dysautonomia/

http://www.dysautonomiainternational.org/page.php?ID=36

https://www.sciencedirect.com/science/article/abs/pii/S153854421400011X

There are of course many other treatment options. From my point of view, however, the most important thing is to bring the autonomic nervous system back into balance and, in this context, to find the reasons why it is out of whack!

What helped me the most with my POTS was drinking two large glasses of water with a little salt in the morning after getting up and drinking enough during the day. Compression socks of all kinds were important, for example the ones from the pharmacy or the ones for runners. If I suddenly felt totally dizzy while standing: cross my legs and press them together as if I urgently had to go to the toilet, and interlock my fingers and pull them firmly outward. This increases blood pressure and activates the muscle pump in the legs. Otherwise, always have a mobile stool with you and a walking stick, snacks low in carbohydrates and high in fat. Dysautonomias are often associated with blood sugar fluctuations and problems digesting carbohydrates. Therefore, I have had a special focus on reasonably stable blood sugar. I have not tried any medications. My POTS has since gotten much better and I still maintain some of the measures described.

Yes, recovery from POTS is possible. Irene Lyon, nervous system expert from Canada, has made a nice short explanatory video on this:

Source: Irene Lyon

Since POTS is a malfunction of the autonomic nervous system, it can be reversed by retraining the brain. The goal is to bring the autonomic nervous system back into balance, out of its survival mode.

Examples of recovery stories from POTS:
https://cfsunravelled.com/pots-recovery-stories-patient-pots-stories-with-a-difference/

https://www.potstreatmentcenter.com/sara-two-years-later-pots-treatment-center-review-testimonial/

https://www.youtube.com/watch?v=pkQhg6CLjII

PS: Of course, I research and check everything I write here as well as possible. Nevertheless, I am only human and make mistakes. In addition, I may draw completely different conclusions as someone else would. Simply because they fit my story. But every story is different.

Important: The content on this page is for informational purposes only and is not a substitute for talking to your doctor or other therapist. The content reflects my personal experiences, research and findings that have helped me and that I therefore want to share. However, in your personal case, completely different things may play a role and other things may help. Please talk to your doctor or therapist before making any decisions that affect your physical or mental health. Also important: I don't want to convince anyone of anything here. Rather, I want to point out possible ways that hopefully can help some people to improve or overcome their ME/CFS or other syndromes.

Johns Hopkins University: POTS. Online: https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots

Vernino S et al: Postural orthostatic tachycardia syndrome (POTS): State of the science and clinical care from a 2019 National Institutes of Health Expert Consensus Meeting - Part 1. Auton Neurosci. 2021

Vernino S, Stiles LE. Autoimmunity in postural orthostatic tachycardia syndrome: Current understanding. Auton Neurosci. 2018

Wells R, Malik V, Brooks AG, Linz D, Elliott AD, Sanders P, Page A, Baumert M, Lau DH. Cerebral Blood Flow and Cognitive Performance in Postural Tachycardia Syndrome: Insights from Sustained Cognitive Stress Test. J Am Heart Assoc. 2020

Chelimsky G, Chelimsky T. The gastrointestinal symptoms present in patients with postural tachycardia syndrome: A review of the literature and overview of treatment. Auton Neurosci. 2018

Dysautonomia Doctors (Instagram)

Fu Q, Levine BD. Exercise and non-pharmacological treatment of POTS. Auton Neurosci. 2018

Victoria Strassheim, Jenny Welford, Rob Ballantine, Julia L. Newton: Managing fatigue in postural tachycardia syndrome (PoTS): The Newcastle approach. Autonomic Neuroscience, Volume 215, 2018