Postural Orthostatic Tachycardia Syndrome (POTS)

Postural Orthostatic Tachycardia Syndrome (POTS) is a disorder with rapid heart rate accompanied by postural change and causes a variety of symptoms including dizziness, fainting, nausea, fatigue, and uncomfortable palpitations. This may be especially exacerbated in hot weather/in the shower. 

 

What causes POTS? 

 

POTS and other forms of dysautonomia have many related conditions, some of which are possibly genetic in nature and others may be related to prior infections, head injury or other things affecting the body and central nervous system. Related disorders may include concussion/traumatic brain injury, hypermobility disorders such as Ehlers-Danlos syndrome are strongly associated and it can also present as a post-viral syndrome. 

 

POTS and Long COVID

 

A new and developing sphere of research into POTS and dysautonomia conditions is growing rapidly as an influx of new POTS patients have appeared in the wake of the pandemic. Numerous patients who have recovered from mild to severe cases of COVID have ongoing, long-lasting symptoms that resemble POTS and are accompanied by brain fog and severe chronic fatigue. It is just one of several manifestations of Long COVID with varying levels of severity. 

 

Some anecdotal reports have suggested that the COVID vaccine can reduce symptoms of Long COVID. It is important to be vaccinated even if you have already had COVID prior - natural immunity has been shown to last as little as 6 months, and having both natural and acquired immunity helps fight against the newer variants. (source

 

I think I may have POTS, how do I get diagnosed?

 

POTS standard diagnostic procedure is via a tilt-table test. In this test you are secured to a table with various monitors of your blood pressure and heart rate and brought from laying flat to upright and back down while you are monitored over several steps. A sweat test is also applied. This testing is unfortunately not always covered by insurance.

POTS is still not a very well known condition, but that is changing every day! If you have the symptoms described above, make an appointment with your primary care doctor.  While you wait to be seen, preparing a heart rate diary to record your symptoms can be helpful. Write down the time, activity you are doing  and what your heart rate is whenever you feel intense light-headedness or elevated heart rate. Having a list of times and dates with heart rate can show a record of data to demonstrate how regularly the issue is occurring. This can also help you identify any triggers you may have

 

What should I do to reduce symptoms? 

 

  • Medications: beta-blockers prescribed by a physician such as propranolol can help reduce resting heart rate and prevent palpitations, they can also sometimes help address other common issues those with POTS suffer such as migraines. 

  • Electrolyte and Water intake: staying well hydrated and having a good electrolyte balance is especially important - if you have medical conditions that preclude you eating a lot of salt (such as high blood pressure at baseline) speak to your doctor before doing this. I recommend having emergency Gatorade/Pedialyte or other electrolyte-heavy drink available in the house, car and purse so if the need arises it’s readily available. Electrolyte dissolving tablets such as those made by Nuun may also be helpful. 

  • Compression: Compression socks are very helpful and may reduce some symptoms for those on their feet frequently or while traveling. It is recommended to use compression at 20-30mmHg or 30-40 mmHg. Waist-high compression is superior to thigh or knee high compression. Additionally forms of body harnesses/corsets may offer benefits. 

  • Physical Therapy/Cardio Therapy: Maintaining tolerance of cardio exercise can help prevent symptoms from worsening and may reduce symptoms. This requires a slow process of meeting cardio endurance/aerobic heart rate and is best done with cycling/spinning or rowing machines to start in a safe way. Goal should be 70% max heart rate (this number is age dependent). Yoga and other practices that involve frequent standing/sitting transitions should be approached with caution. 

    • There is some evidence that co-occurring Myalgic Encephalitis/Chronic Fatigue Syndrome (ME/CFS) may worsen symptoms and lead to relapse in ME/CFS symptoms, so work closely with your therapists to ensure your unique needs are being taken into consideration. 

 

Other resources: 

  • Nuun electrolyte tablets

  • Portable Stool: LINK 

  • HellonWheels Design for bespoke mobility aids that add a punk flair

  • Dark Garden is a bespoke corset company that makes medical corsets that have experience with dysautonomia sufferers