This program is delivered virtually and is available to all residents of Ontario, British Columbia or Alberta.
What is POTS/Dysautonomia?
Dysautonomia is an umbrella term for various disorders involving a primary or secondary failure of the Autonomic Nervous System (ANS). The ANS is responsible for regulating involuntary physiological functions, including heart rate, blood pressure, gastrointestinal motility, pupillary response, renal function, and temperature regulation.
With over 70 million cases worldwide, dysautonomia is a high-prevalence condition affecting all ages, genders, and ethnicities.
Despite its high incidence, diagnosis often takes years after symptom onset due to limited clinical awareness. While no definitive cure currently exists, organizations like Dysautonomia International are actively funding research to improve symptomatic management and identify curative interventions.
While there are many diagnoses under the umbrella of Dysautonomia, the most common form we see in our post-infection rehabilitation program is POTS (Postural Orthostatic Tachycardia Syndrome).
Postural Orthostatic Tachycardia Syndrome
POTS is a common autonomic disorder defined by excessive tachycardia (racing heart rate) and intolerance to upright positioning. It is a heterogeneous syndrome, meaning it is a cluster of symptoms arising from various underlying etiologies rather than a single disease entity.
Clinical diagnosis requires a sustained heart rate increase of ≥30 bpm (or ≥40 bpm in pediatric/adolescent patients) within 10 minutes of standing, or a standing heart rate exceeding 120 bpm, in the absence of orthostatic hypotension.
- Gold Standard: Head-up Tilt Table Test (HUTT).
- Alternative: Active Stand Test
- Additional Testing: QSART (sudomotor function), skin biopsies (small fiber neuropathy), and gastric motility studies.
POTS often involves hypovolemia (low blood volume) and elevated plasma norepinephrine, indicating overactivity in the sympathetic nervous system. It is categorized into several overlapping phenotypes:
- Neuropathic: Associated with peripheral autonomic denervation.
- Hyperadrenergic: Characterized by excessive orthostatic catecholamine levels.
- Hypovolemic: Driven by significantly reduced blood volume.
Primary vs. Secondary: Primary (idiopathic) has no known cause; secondary occurs comorbidly with conditions like Ehlers-Danlos Syndrome (EDS), autoimmune disorders (Sjogren’s, Lupus), or post-viral sequelae (including COVID-19).
Common Signs and Symptoms of POTS/Dysautonomia
The symptoms of Dysautonomia can be unpredictable and often change based on the weather, hydration levels, or how long you have been upright. This chart outlines some of the common symptoms of dysautonomia but is in no way an exhaustive list:
How our POTS/Dysautonomia Assessment Works
We prioritize your comfort during the assessment, as we know that standing still can be a trigger for your symptoms.
- History: We discuss your history, including when your symptoms started and what triggers exacerbations
- PEM Screen: We screen for Post-Exertional Malaise (PEM) to ensure that our movement plan won’t cause a delayed and profound worsening of your baseline symptoms.
- Active Stand Testing: We monitor your heart rate and blood pressure while you move from lying to standing to observe exactly how your ANS reacts to the stress of gravity.
- Care Plan: We create an individualized plan for your specific presentation, meeting you where you are functionally and integrating your goals
Our Approach to Treatment for POTS/Dysautonomia
We use an individualized approach to stabilize your symptoms and help your body better tolerate gravity. Some examples of some approaches that may be implemented include:
- Volume & Salt Management: Implementing specific hydration and salt protocols to increase blood volume so it is easier for your heart to circulate oxygen to your brain.
- Recumbent Conditioning: If appropriate, we begin exercise in horizontal or seated positions (e.g. resistance exercises, rowing, swimming, recumbent biking, etc).
- Compression & Counter-Pressure: We provide guidance on the use of compression garments and “counter-pressure maneuvers”—physical techniques to prevent blood pooling while you are upright.
A Team Approach to Recovery
Managing Dysautonomia is not a one size fits all approach. Individuals with suspected or confirmed dysautonomia can benefit from the expertise of:
- Physiotherapy: PTs help you identify a level of activity that is safe and appropriate, prioritizing “recumbent” (lying down) conditioning, gradually progressing to upright activities as you can tolerate.
- Occupational Therapy (OT): OTs help you modify your environment (like using a shower chair), manage brain fog, and implement energy conservation and pacing strategies so you can navigate your day with better symptom control.
- Registered Dietetics: Salt and fluid intake can be important for many individuals with dysautonomia and POTS. Our dietitians help you design a nutrition plan to increase blood volume and optimize the quality of food intake to help fuel your body.
Our Clinical Advisory Team
Dr. Todd Davenport
Physical Therapist, Professor and Researcher
Read their bio here
Use of Technology in Rehabilitation
Biometric data monitoring can be used to help provide insight into an individual’s unique dysautonomia presentations. Using wearable technology, we can provide estimates of the amount of time upright, safe heart rate zones for activity and track other metrics like sleep and rest to help improve function and quality of life. Through monitoring of activity metrics like steps and active calories burned, we can hope to glean an optimal amount of movement that keeps your symptoms at bay.
Frequently Asked Questions
How could I receive a diagnosis of POTS?
The active stand test previously described can be used as a screening tool. It’s important to recognize that the presence of POTS can be missed on this test and factors like time of day, hydration, menstrual cycle timing, medications, caffeine and tobacco can influence the results. If the Active Stand Test results meet the HR and BP criteria for POTS and the other POTS criteria are met, then we can refer you back to your primary care physician with this information for diagnosis. Ideally, a tilt test confirms the diagnosis but can be difficult to obtain and very triggering for symptoms of orthostatic intolerance.
Do I have to wear a heart rate monitor?
While not mandatory, having a wearable device (like a Garmin or Apple Watch) allows us to be much more precise with our recommendations and helps you feel safer with daily activities and exercise (when appropriate).
Is This Program Right For You?
- Does your heart race or do you feel lightheaded just from standing up to brush your teeth?
- Do you feel better when you are lying flat or have your feet elevated?
- Do you experience “coat hanger pain” (aching in your neck and shoulders) after standing for a while?
Reach out to our team for more information or book an initial assessment with one of our Registered Physiotherapists to get started!
POTS/Dysautonomia Resources
Postural Orthostatic Tachycardia Syndrome (POTS)
How do I Know if I Have POTS?
Travel with POTS: Tips and Considerations
