Postural Orthostatic Tachycardia Syndrome commonly known as “POTS” is a disorder affecting the part of the nervous system called the autonomic nervous system (ANS). This category of ANS disorders are called ‘dysautonomias’. This is the automatic part of our nervous system which we do not consciously notice or think about until they start to go wrong - such as our digestion, blood pressure or heart rate.

Tachycardia means abnormally high heart rate (over 100 beats per minute). People with POTS can experience an elevated heart rate even at rest. When changing from a seated to standing position, their heart rate can speed up even further. This refers to the “postural orthostatic” part of the name.

POTS is a syndrome, meaning it is not classified as a disease but a cluster of symptoms that affect the whole body. Importantly it is not just an abnormal heart rate which the name implies. There are three subtypes of POTS with slightly different features.

There are also numerous triggers, underlying causes and presentations of POTS, which can make it difficult for healthcare practitioners to recognise.

POTS is not a rare condition, affecting over 17 million people worldwide. Anyone can be affected by POTS but approximately 75% of those with POTS are female between the ages of 15-50.

What are the symptoms of POTS?

People can have problems with:

Digestion: especially gut motility - how fast food transits through your gut, which can be too fast (resulting in diarrhoea) or too slow (constipation) or can stop all together (gastroparesis) or things can move in the wrong direction! resulting in vomiting/regurgitating.
Blood vessel constriction which makes it harder for vessels to ‘fight gravity’ and carry blood to the upper part of our body, especially the head. This is thought to contribute to symptoms such as headaches, fainting, dizziness, brain fog and body temperature dysregulation (feeling too hot or cold and unable to adapt).
Overwhelming exhaustion.
‘Wired-but-tired’ fatigue particularly with hyperadrenergic POTS, where there is constant activation of the sympathetic nervous system and high levels of circulating adrenaline.

To add to the complication, POTS co-occurs with a number of other conditionsincluding multiple autoimmune diseases, hypermobility spectrum disorders/Ehlers Danlos Syndrome, Fibromyalgia, CFS/ME, anaemia and mast cell activation syndrome. Each accompanied by their own symptoms and complications which makes it difficult to untangle.

What triggers POTS?

POTS has many triggers including:

Infection: is the most common trigger. Viruses such as COVID-19, Epstein Barr (Infectious Mononucleosis) or bacterial infections (including Lyme Disease)
Surgical procedures
Pregnancy
Concussion or Trauma

In my experience with complex illnesses, the trigger is not necessarily the same as the cause. For example the person could contract a virus such as COVID19, but it is not the virus itself causing the POTS, it is a problem with their immune function that may have been out of balance for quite some time with no observable signs until the virus “was the final straw”. Their ongoing post-viral illness is the consequence of the virus in a weakened system.

What helps?

Electrolytes

Electrolytes are sodium, potassium, chloride and magnesium ions that help to maintain blood volume, but have other really important jobs in our body such as brain function (nerve conduction) and muscle contraction which use electrolytes to transmit electrical signals.

Some brands /products I’ve used and found helpful:

Elete Electrolytes: plain and unflavoured, sugar free. 1 flat teaspoon or about 20 drops per litre of drinking water.

BodyBio E-lyte are also really good (plain, unflavoured, sugar free). 1 capful per glass (approx 300 ml of water).

Saltstick fastchews are chewable salt tablets which you can take on-the-go. I find they help with stamina when I am exercising. Remember to drink plenty of water with the salt tablets too.

Liquid IV does contain a little sugar/flavour but works well.

You could also make your own electrolyte-water known as Sole (salt water). Fill a glass jar 1/4 of the way with Himalayan salt or Sea Salt, and fill the rest of the jar with filtered water. Let sit overnight. Take one teaspoon of this saturated mixture and put into a glass of filtered water.

I have 2-3 litres of electrolyte water daily. Especially in hot weather, as sweating will cause a loss of electrolytes, also after drinking alcohol (electrolytes are a pretty good hangover

Medications

There are currently no medications that are FDA-approved for treating POTS, however consultants may prescribe off-label medications approved for other conditions but have been found to help some features of POTS. There is a risk of side effects from drugs that are not specifically indicated for POTS so please discuss the risk/benefits with your doctor.

These typically fall into four categories:

Drugs to maintain blood pressure within a normal range i.e. Clonidine
Drugs to reduce heart rate (heart palpitations) ie. Ivabradine
Drugs to increase vasoconstriction (narrowing of blood vessels) to help circulate blood to the upper body (heart and brain) i.e. Midodrine
Drugs to decrease “fight or flight” or sympathetic tone i.e. Mestinon

Some functional trained doctors are also prescribing LDN (low dose naltrexone) particularly if there is autoimmunity in the picture, however there are variable responses to this.

What else can help?

Graded compression stockings or medical tights which can help with pooling of blood in the bottom half of your body. All body sizes are different so you may need to try a few brands of compression stockings to find the right fit for your body.

Breath work such as Yoga Nidra regulates the autonomic nervous system and activates the vagus nerve. Or the pursed lip breathing exercise. Note: hyperventilation-style breathing exercises such as Wim Hof do not seem to help and may make things worse in my experience.
Saline IV drips if accessible can help increase blood volume and alleviate symptoms temporarily.
Exercise has been shown to POTS symptoms more effectively that beta-blocker medications. However a cautious approach is advised as high intensity exercise or introducing it too quickly can cause symptom flares. Working with a Physical Therapist/Physiotherapist who has a good understanding of POTS, CFS, dysautonomia and chronic illness will be safer as they will have experience in people with dynamic disabilities.

What is POTS? and how to manage it.