How to manage your OI/POTS symptoms
Years ago in our clinic, we noticed many of our clients who had fatigue or pain also had postural symptoms, such as dizziness, lightheadedness, visual disturbances, sensitivity to the heat, lights and noise, and swelling in their hands and/or feet.
This led us, in collaboration with numerous specialists in Melbourne, to investigate why people had these additional symptoms, which are known as Orthostatic Intolerance (OI) or Postural Orthostatic Tachycardia Syndrome (POTS). We have since developed a rehabilitation program for OI/POTS that utilises the latest research to change people's lives, and has even been successfully used by our staff (a few of us actually)!
Orthostatic Intolerance and POTS
Orthostatic intolerance is the umbrella term for a range of different conditions including orthostatic hypotension and POTS, in which an individual has difficulty with the upright posture, particularly standing. The most dramatic problem people with orthostatic intolerance suffer is fainting, but in between fainting episodes they may feel dizziness, weak, lightheaded, experience palpitations, abnormal sweating, and experience problems with concentration.
True orthostatic hypotension (OH) was defined by consensus in 2011 as sustained reduction of systolic BP >20 mm Hg or of diastolic BP >10 mm Hg within 3 minutes of standing or head-up tilt, while postural orthostatic tachycardia syndrome (POTS) is characterised by an increase in heart rate of 30bpm.
Postural Tachycardia Syndrome (POTS) is a form of chronic orthostatic intolerance for which the hallmark physiological trait is an excessive increase in heart rate ≥30 beats/min within 10 minutes of standing or head-up-tilt (HUT) which is sustained in the absence of orthostatic hypotension (a drop >20 mmHg in systolic blood pressure [BP] or >10mmHg in diastolic BP). Children must meet a higher HR threshold ≥40 beats/min for a diagnosis due to their greater physiologic orthostatic tachycardia. Patients with POTS experience cardiac and non-cardiac presyncopal symptoms chronically (≥6 months). POTS is not considered to be a unique disease but rather the common phenotype of a number of heterogeneous, overlapping pathophysiological processes.
OI/POTS can present alongside other conditions, such as chronic fatigue syndrome / myalgic encephalomyelitis, chronic pain / fibromyalgia, hypermobility type Ehlers Danlos Syndrome, migraine, bowel irregularities, and autoimmune disorders but can also be a stand-alone condition.
The symptoms of OI/POTS can include:
- Palpitations
- Non-cardiac related chest pain
- Shortness of breath
- Cognitive dysfunction
- Postural dizziness (from lying/sitting to standing)
- Postural vision spots or blindness
- Sensitivity or intolerance to the heat, humidity, and/or fluctuations in temperature
- Nausea, over-fullness and a lack of appetite, food intolerances
- Swelling and/or discoloration in the feet after sitting or standing still for prolonged periods
- Cold hands and feet
- Salt cravings
- Headaches
- Pre-syncope
- Restless legs
- Irregular sweating patterns
- Fatigue
- Light-headedness whilst showering or abnormal fatigue after showering
- Intolerance to alcohol
- Exercise intolerance
These symptoms can be exacerbated by numerous factors including dehydration, heat exposure, prolonged recumbency, alcohol, and menstruation.
Our AHC Program
Our program is designed and focused on OI/POTS rehabilitation and helps our clients understand and manage their symptoms through a holistic approach. We complete a thorough assessment of your health during your first appointment. Our initial assessment allows for us to address the whole person, not just the condition presenting.
The sessions focus on:
- OI/POTS physiology and management, including hydration, salt intake, compression and medications
- Setting up a movement/exercise routine
- Understanding the neurophysiology of your condition
- Identifying the demands of your activity and your capacity (using a variety of tools eg. heart rate monitors, heart rate variability and activity diaries)
- Pacing strategies (physically, mentally, socially, environmentally, emotionally)
- Trigger identification and modification
- What to do when you have a setback
- Goal setting
- Gradual exposure strategies
- Causes of sleep disturbances and techniques to help with sleep
- Parasympathetic activity / Relaxation techniques
- Mindfulness exercises and how to live more mindfully
- How to identify your body’s stress response
- Stress, anxiety and mood management strategies
- DIM/SIMS – Threats and safety to the mind/body
- Symptom Mapping
- Return to work planning
- Ergonomics for pain
- Return to school planning
- For women: Understanding your menstrual cycle, its impact on your symptoms and how to support this
Our program aims to help you have a ‘normal day’ or return to work or school, without increasing your symptoms. We know this journey is a bit rocky so we give you the skills to deal with any future problems, through setback planning and providing you with a therapy manual you can turn to in times of need.
We can also refer you to a specialist near you to help you manage your health and get access to medication if appropriate.
Dietetics in Dysautonomia
Living with Dysautonomia can be challenging, especially when some of the most common symptoms of this condition like nausea, lack of appetite, bloating and changes in bowel movements seem to be working against you.
Our dietitians have a wealth of experience working with patients who live with OI and POTS, or other forms of Dysautonomia.
Some topics that may be covered to support you and your body with your OI and POTS includes:
- Strategies and education around adequate hydration and salt intake
- Nervous system regulation surrounding meal times
- Eating strategies for gastroparesis (delayed gastric emptying) or rapid gastric emptying
- Create a sustainable and consistent eating routine to improve your energy levels across the day
- Symptom management through medical nutrition therapy for gastrointestinal and non-gastrointestinal symptoms
Cost and Questions
For program costs and rebates available, please call the clinic.
Do I need a referral? What if I can't get to your clinic?
A referral isn't always necessary however may impact on your ability to get a rebate - speak to our friendly reception staff and they can help you.
Our clinics are located in Blackburn & Mornington, Victoria, however, all services are offered via telehealth also.
What if I've already done another treatment program?
If you have had treatment for OI/POTS in the past, that's great! We take an inclusive approach and can build on and increase your understanding and progress through our program. We won't make you redo things you have already done through another program.
What causes OI/POTS?
The cause of OI/POTS is still unknown, however, patients often report that their symptoms began immediately following an acute stressor (eg: viral illness, pregnancy, surgery, concussion) but in some patients, symptoms develop more gradually and subtly over time. Many patients report that their symptoms started around puberty.
While the precise aetiology remains unknown, orthostatic tachycardia in POTS is thought to reflect the convergence of multiple pathophysiological processes, as a final common pathway. Based on this, POTS is often described as a clinical syndrome consisting of multiple heterogeneous disorders with overlapping clinical features.
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