HealthYeah Interview Dives Into POTS
Postural orthostatic tachycardia syndrome (POTS) can be debilitating and demoralizing. Not only because of the symptoms, but also because on the outside everything looks normal, but the invisible illness is there. Plus, what’s prescribed isn’t a perfect science. Doctors don’t know exactly how POTS happens or why it starts, but it impacts 450,000 people in the U.S. In other words, it’s a frustrating condition.
Today, in our HealthYeah live video blog series, we interviewed Shannon Myers to shed light on POTS, which she believes actually impacts 1-3 million people in the US.
Shannon is a dual-sided clinician/researcher serving patients, businesses, government, and systems for radical health outcomes. She is a Certified Rehabilitation Counselor, Research Fellow at The Harkin Institute, Adjunct Professor at Drake University, and has owned a Consulting and Coaching business since 2012. She is known as The Paleo Counselor. Not only does she work with the POTS patient population, but she also has experienced POTS herself and lives with other chronic health conditions.
How Excy Discovered POTS
We first stumbled upon POTS while exhibiting at the Combined Sections Meeting (CSM) Physical Therapy tradeshow. A young college-age woman studying to become a physical therapist approached us to demo Excy. She was excited about being able to pedal Excy as a recumbent exercise bike from a chair. But, she got even more excited about pedaling while lying down and pedaling arms in a semi-recumbent position.
After that experience, we started talking to more physical therapists and acquiring customers with POTS. What we learned is that patients with POTS are often encouraged to try semi-recumbent and recumbent exercises like rowing, riding a recumbent bike, or swimming. We’ve also learned that everyone has a different starting point and there is no cookie cutter approach. Some people are bedridden. Others are unable to walk. Others can perform daily tasks. There are also different levels of exercise intolerance from minor to severe.
Because so few people understand or have heard of POTS, we invited Shannon to participate in our weekly HealthYeah live video series. While the cause of POTS is unknown, there are consistent patterns. Below you will find a summary of the interview, but you are welcome to dive into the full interview anytime!
We kicked off the interview by defining POTS. Dysautonomia International defines POTS as a form of orthostatic intolerance that is associated with the presence of excessive tachycardia and many other symptoms upon standing. Clinical symptoms are often lightheadedness, fatigue, sweating, tremors, anxiety, heart palpitation, exercise intolerance, and fainting or near fainting upon moving from a prone to upright position.
Dysautonomia International has a great short video explain POTS
According to the Cleveland Clinic, there are various forms of POTS.
The most common are:
- Neuropathic POTS: Peripheral denervation (loss of nerve supply) leads to poor blood vessel muscles, especially in the legs and core body.
- Hyperadrenergic POTS: Over activity of the sympathetic nervous system.
- Low blood volume POTS: Reduced blood volume can lead to POTS. Low blood volume can cause similar symptoms that may overlap in neuropathic and hyperadrenergic POTS
Who is at risk for POTS?
The majority of POTS patients are women ages 13-50 years old, but men can also get POTS. Common risks:
- Patients may develop POTS after a viral illness, serious infections, medical illness, pregnancy, and trauma such as head injury. The condition may develop as aftermath of a significant illness (especially associated with hospitalization and prolonged immobilization).
- POTS may develop in those who have had a recent history of mononucleosis.
- People with certain autoimmune conditions such as Sjogren’s syndrome and celiac disease can be at higher risk. Sjogren’s can be evaluated by blood testing, dry eye test, lip biopsy, and rheumatology consult. Celiac disease can be tested through blood work, gastroenterology consult, and if needed biopsies of the small intestines
POTS Diagnosis: Get a Tilt-Table Tests
During the interview, Shannon mentioned just how easy it is to get a POTS diagnosis through a tilt table test. However, she also explained that women with chronic illness are often dismissed as being hysterical, so that a diagnosis is often delayed by years or never discovered at all. Research backs what she says. In a survey of more than 2,400 women with chronic pain, 83 percent said they felt they had experienced gender discrimination from their health care providers. They are often told that their issues are stress-related or all in their heads. However, many of these patients are later diagnosed with serious neurological problems, like multiple sclerosis and Parkinson’s disease. Shannon’s suggestions are for people to trust their own intuition.
If POTS is suspected, insist on a tilt-table test to find out why you feel faint, lightheaded or actually completely pass out. During the test, you lie on a table that is slowly tilted upward. The test measures how your blood pressure and heart rate respond to the force of gravity. A nurse or technician keeps track of your blood pressure and your heart rate (pulse) to see how they change during the test.
POTS Treatments: It Can Be Tricky
No therapy is uniformly successful, and combinations of approaches are often needed around areas of exercise, medication, and more. We captured a few key areas during the interview:
Exercise for POTS
Exercise is prescribed, but unfortunately, some POTS patients report feeling debilitated for days after exertion, limiting compliance. Shannon suggests finding what works for you and to not compare yourself to your old self. If you can only do 20 seconds of exercise, that is your starting place. It’s important to start with a duration and intensity with which you are comfortable and establish a daily habit at that level. Research shows that strategies for those who are most severely affected by POTS might include starting with recumbent strengthening, cycling, rowing, or swimming. Dysautonomia International has great suggestions for home exercises for POTS. These range from reclined gentle movements to recumbent cardio exercise. For example, the Excy stationary recumbent exercise bike position, the horizontal cycling position, or the hand rowing position in bed.
Exercise intolerance is a clinical hallmark of chronic conditions. Patients with POTS should talk to their doctor or work with a physical therapist or personal trainer who understands the challenges of exercise intolerance. As Shannon outlined, simply telling a POTS patient to strengthen their legs through recumbent cycling isn’t enough. Custom programs of duration, intensity, and frequency should be personalized and accessible on the patient’s terms. These terms should minimize post-exercise pain, fatigue, nausea, vomiting or other negative effects and build the person up slowly over time.
Medications for POTS
The Food and Drug Administration has not approved any medications for the treatment of POTS. Therefore, all agents used for this disorder are off label. Medications like salt tablets, fludrocortisone, pyridostigmine, midodrine, and or a beta blocker may be prescribed to help control POTS.
Shannon suggests exploring Precision Medicine when considering medications. Precision medicine is an approach to patient care that allows doctors to select treatments that are most likely to help patients based on a genetic understanding of their disease. In Prevision Medicine, interventions are tailored to individuals or groups, rather than using a one-size-fits-all approach in which everyone receives the same care.
Compression Stockings for POTS
During the interview, Shannon also talked about using compression stockings help to decrease peripheral venous pooling (a major problem in POTS) and increase venous return to the heart. However, she emphasized the importance of thigh-high or waist-high compression stockings for POTS.
POTS Caretaker Tips
Shannon’s tip for caretakers is to embrace the Spoon Theory. The Spoon Theory is a concept written by Christine Miserandino whereby energy is equated to spoons. It is a disability metaphor to explain the reduced amount of mental and physical energy available for activities of living and productive tasks that may result from disability or chronic illness. Each activity requires a given number of spoons, which will only be replaced as the person “recharges” through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished. So, Shannon suggest finding out just how much energy (spoons) you have and be mindful of how the spoons are used.
Shannon’s Top 10 List for the caretaker and the POTS sufferer:
- Communicate and advocate for yourself
- Partner with each other
- Open up communications lines
- Set the new normal for yourself, the family, and each other
- Be kind to yourself
- Don’t compare yourself to others
- Don’t be on anyone else’s timetable
- Consider joining groups (Facebook or in person)
- Celebrate wins
- Find some way, any way to have fun
In the end, we wrapped up the interview with Shannon saying as both an educator and a POTS sufferer that it will all be ok. There’s so much other wonderful advice offered during the interview. Make sure to check it out!
We always ask what our guests are reading. Shannon’s current list:
- “Daring Greatly: How the Courage to Be Vulnerable Transforms the Way We Live, Love, Parent, and Lead” by Brene Brown. She calls this as a must read for anyone with POTS
- “Brave, Not Perfect: Fear Less, Fail More, and Live Bolder” by Reshma Saujani
- “The Art of Living: Peace and Freedom in the Here and Now” by Thich Nhat Hanh