Do you regularly feel dizzy or faint when you stand up from a sitting position? Do you also suffer with fatigue, brain fog, racing heart, palpitations and gut issues? These may be the symptoms of Postural Orthostatic Tachycardia Syndrome, commonly referred to as ‘POTS.’  POTS is currently getting increased attention from scientists, as it is thought to be responsible for many of the symptoms of long-COVID, the persistent symptoms that many suffer with after a severe bout of Covid-19. However, Postural Orthostatic Tachycardia Syndrome has been a problem for many, long before the recent coronavirus pandemic. In the literature, it is suggested that in extra flexible people with hypermobile-Ehlers Danlos Syndrome, the incidence of POTS is as high as 88%!

What is the link between hypermobility and POTS?  

Hypermobility, sometimes referred to as being double jointed, is characterized by having greater range of motion than average.  Hypermobility sits on a spectrum: at one end we have our Olympic athletes who may be hypermobile but excel in high level sports and on the other end there is a group that develop symptoms from their hypermobility – pain, weakness and frequent sprains/strains.  Physiotherapists are very used to dealing with hypermobility as it is quite common, affecting around 20% of the population, but Not Just Bendy was established as a specialized service to help those with severe, recurrent or tricky issues related to their hypermobility.

The extra give in joints of those with hypermobility, is believed to be due to a higher proportion of a more stretchy type of collagen in the surrounding ligaments.  Collagen is present in and around many structures throughout the body, including tendons and ligaments, the gut, blood vessels and nerves.  Therefore, it is possible to have problems associated with hypermobility that include gut issues, fatigue and dizziness.  Our blog today will focus on one of the most associated problems –Postural Orthostatic Tachycardia Syndrome.

What are the symptoms of Postural Orthostatic Tachycardia Syndrome?

POTS symptoms are most commonly reported as fatigue, dizziness, brain fog, racing heart and palpitations, but POTS symptoms can include any combination of the symptoms outlined in the infographic below.

Everyone with POTS has a different combination of symptoms and these symptoms may be explained by many other conditions. Therefore, it is important for individuals with these types of symptoms to see their general medical practitioner for assessment and evaluation of any underlying conditions and for an accurate diagnosis.

What is Postural Orthostatic Tachycardia Syndrome?

To understand what POTS is, we need to have a look at how the body maintains its everyday functions as you move around.  The body has many processes that it controls automatically, without any awareness or conscious thought from your brain. Maintaining blood pressure at a normal level is essential for homeostasis – a state where these automatic functions just chug along in the background.

POTS is a type of dysautonomia – a disorder of the autonomic nervous system that controls involuntary body functions like your heartbeat, breathing and digestion

Blood pressure can be affected by how fast your heart beats (heart rate) and the flow of blood returning to your heart (venous return) as shown in the following formula: Blood pressure = Heart Rate x Venous Return.

When lying down, your body can relax and pump blood around with minimal effort.  Once the body changes quickly from lying to sitting or standing, like when getting out of bed in the morning, blood can pool, staying in the legs and arms.  This means there is less blood for the heart to pump around.  If your blood pressure drops too quickly you might feel dizzy or faint (vasovagal syncope).

In people with hypermobility spectrum disorder or hypermobile -Ehlers Danlos syndrome, just like their joints, their blood vessels have extra stretch which means more blood can pool in the legs when they stand up. With less blood returning to the heart because of pooling in the legs, the body increases the heart rate to avoid dropping the blood pressure and associated dizziness or in extreme circumstances, fainting.

To increase the heart rate, the body makes the heart beat faster via activation of the Sympathetic Nervous System (SNS) and release of the hormone adrenalin. This system is often referred to as the fight-flight system.  As well as increasing the heart rate, there are other associated effects which can account for many of the symptoms listed in the table above. You may recall feeling some of these symptoms when you get a fright.

For adults to be diagnosed with POTS, the heart rate needs to go up by more than 30 beats per minute from lying to standing still. Additionally, if your heart rate when lying still is more than 120 beats per minute, this can also indicate POTS. For children, the heart rate increase expected with POTS is more than 40 beats per minute on changing position.

You can do testing for POTS and other dysautonomia in your own home.  Your physiotherapist can supply you with more detailed documentation on how to record this.  Common investigations include: blood tests, electrocardiogram (ECG – measuring electrical activity in the heart), heart echo (ultrasound), holter monitor of blood pressure and/or heart rate, tilt table testing and cardiologist assessment.

What can I do to help my POTS symptoms? 

If you have been diagnosed with POTS, there are a number of things that you can do to help your symptoms.

• Ensure adequate fluid intake

  Aim for at least 2 litres/day or 8-10 cups/day (must be in combination with extra salt intake). Extra fluid means extra blood!

• Ensure adequate salt intake
  

  Without salt, any extra fluid you drink will not stay in your body, so you will usually need to increase your salt intake together with any increases in fluid intake. If you have a family/personal history of high blood pressure, heart or kidney diseases or are concerned about risk factors of salt intake, please discuss this with your doctor prior to increasing your salt intake.

  

• Compression garments

  Compression garments prevent blood pooling in the legs. There are many options like sports socks, TEDS, Skins or cheaper alternatives from Aldi or Target. Full tights or bike pants options are also available.

• Resting in positions to improve symptoms for short periods
  

  Sitting with the knees bent up can encourage blood flow to return to the heart and decrease symptoms of POTS. Lying can also relieve POTS symptoms but too much rest can add to deconditioning which can worsen POTS symptoms in the long term.

• Exercise
  

  Some exercise tips for managing POTS:
  

  • Exercises you can do lying or sitting can be easier than standing.
  • Pumping/wiggling your feet and legs can help pump blood back to your heart.
  • Try not to stand in the one spot – wriggle and move your position from side to side.
  • Cardiovascular exercise can improve symptoms in many people with POTS, but they need to be paced and appropriate to avoid a flare up of fatigue or painful symptoms.
  • Not Just Bendy Hypermobility Services Physiotherapists can help you develop an exercise program that is tailored to you.
    

 

• Medications

  There are some medications which may help manage POTS symptoms, but it’s always best to seek advice from your general medical practitioner or cardiac specialist about which medications may be best for you. If your symptoms are affecting your ability to function, then it is worth considering review by an electrophysiological cardiologist.

If you would like some further advice and assistance with your hypermobility and POTS, you can make an appointment with the Not Just Bendy Hypermobility team in Tarragindi, Brisbane. Call 3342 4284 or email [email protected] to make a booking.

 

This blog was written by Sharon Hennessey BPhty(Hons), Principal Physiotherapist of Not Just Bendy Hypermobility Services. Sharon has been working with Physiotec for over 11 years. The clientele of Not Just Bendy are people with complex hypermobility and Hypermobile- Ehlers Danlos Syndrome.  Not Just Bendy Hypermobility Services is an independent business that runs out of the PhysioTec premises.

References

1. Brock, I., Chopra, P., Maitland, A., & Francomano, C. (2021). Frequency and co-occurrence of comorbidities in the Ehlers-Danlos syndromes. Molecular Genetics and Metabolism 132S1, S59-S198.
2. Raj SR. Postural tachycardia syndrome (POTS). Circulation. 2013 Jun 11;127(23):2336-42.
3. Hakim A, O’Callaghan C, De Wandele I,  Stiles L, Pocinki A and Rowe P (2017) Cardiovascular autonomic dysfunction in Ehlers–Danlos syndrome—Hypermobile type  American Journal of Medical Genetics Part C: Seminars in Medical Genetics 175C: 168 -174