Skip to Content

Is living with POTS hard?

What is POTS?

POTS stands for Postural Orthostatic Tachycardia Syndrome. It is a condition that affects blood flow and causes an abnormal increase in heart rate when standing up. People with POTS often experience symptoms like dizziness, lightheadedness, fainting, heart palpitations, chest pain, headache, fatigue, nausea, and more when moving from a lying down to upright position. These symptoms are caused by the body’s inability to adjust blood flow and heart rate in response to postural changes. POTS can significantly impact daily activities and quality of life.

What causes POTS?

The exact causes of POTS are still being researched, but factors like autoimmune disorders, genetics, viral illnesses, nervous system dysfunction, and more may play a role. Some potential causes and risk factors include:

– Autoimmune disorders: Many POTS patients have an underlying autoimmune disorder like lupus, Sjogren’s syndrome, or joint hypermobility syndrome which can affect blood vessels and circulation.

– Genetics: Research suggests that some genes affecting blood pressure regulation and vascular function may predispose people to developing POTS. It often runs in families.

– Viral infection: Viruses like Epstein-Barr, Lyme disease, and others are thought to potentially trigger POTS in some cases. They may spark autoimmune issues.

– Nervous system abnormalities: Issues with the autonomic nervous system which controls involuntary functions like heart rate, blood pressure, and sweating could contribute to POTS.

– Deconditioning: Being deconditioned due to illness or inactivity may worsen orthostatic intolerance in some POTS patients.

– Hormonal changes: Fluctuating estrogen levels may play a role in women. Many patients report improvement after pregnancy.

– Hypovolemia: Some people have lower blood volumes which can exacerbate POTS symptoms upon standing.

So in summary, POTS is thought to arise due to complex interactions between genetics, autoimmunity, the nervous system, viruses, hormone changes, and blood volume status – but more research is still needed.

What are the symptoms of POTS?

The hallmark POTS symptom is an abnormally fast heart rate increase of 30+ beats per minute when moving from lying to standing. This is along with symptoms like:

– Dizziness, lightheadedness, fainting upon standing
– Heart palpitations and fast heart rate
– Chest pain or discomfort
– Exercise intolerance or fatigue
– Shortness of breath
– Trembling, shakiness, weakness
– Nausea, abdominal pain, bloating
– Headaches or migraines
– Brain fog, concentration and memory issues
– Anxiety or panic attacks
– Insomnia or sleep disruptions
– Heat and cold intolerance
– Light and noise sensitivity

These symptoms are often worsened by triggers like standing for long periods, warm weather, hot showers, large meals, alcohol, menstruation, illness, and more. Symptoms range from mild to completely debilitating.

What are some daily challenges of living with POTS?

POTS can pose many daily challenges and make normal activities difficult. Some common challenges include:

– Orthostatic intolerance – Difficulty standing or sitting upright without symptoms
– Fatigue and low stamina – Exhaustion, tiredness, and rapid muscle burning with minimal activity
– Exercise intolerance – Inability to perform routine exercise without severe symptoms
– Heat/cold intolerance – Worsened symptoms with hot or cold environments
– GI issues – Nausea, bloating, constipation, diarrhea, difficulty eating
– Brain fog – Impaired cognition, concentration and memory
– Dizziness and fainting – Increased fall risk
– Medication side effects – Drowsiness, headaches, nausea, etc.
– Sleep disruption – Frequent nighttime waking and insomnia
– Depression and anxiety – From coping with chronic illness
– Difficulty working or attending school – Due to fatigue and symptoms
– Social isolation – Avoiding activities due to unpredictability of symptoms
– Travel difficulties – Planning routes and managing symptoms

Simple everyday tasks like grocery shopping, showering, cooking, cleaning, and getting dressed can be extremely taxing and require recovery time. POTS patients often report poor quality of life and ability to function.

How is POTS diagnosed?

Getting a POTS diagnosis typically involves:

– Patient history – Discussion of chronic symptoms and triggers.
– Physical exam – Checking heart rate, blood pressure, etc.
– Tilt table test – Lying to standing with continuous heart rate and blood pressure monitoring. Heart rate increase of 30+ bpm upon standing confirms POTS.
– Ruling out other disorders – Testing for conditions like dehydration, anemia, heart arrhythmias, etc.
– Additional tests – EKG, echocardiogram, bloodwork, MRI, and more may be done to identify underlying causes.

Patients are encouraged to keep a symptom journal tracking heart rate changes, presyncopal episodes, and symptom triggers. Wearable heart rate monitors can provide helpful data. Getting a definitive POTS diagnosis allows patients to pursue proper treatment.

What treatments are available for POTS?

There is no single cure for POTS, but various treatment approaches aim to manage symptoms and improve quality of life. Common treatments include:

– Increasing fluid and salt intake – To improve blood volume
– Compression stockings – To prevent blood from pooling in extremities
– Exercise training – To improve cardiovascular conditioning
– Medications – Beta blockers, ivabradine, fludrocortisone, etc. to control heart rate and blood pressure
– IV saline – To temporarily increase blood volume and reduce symptoms
– Nutritional supplements – Iron, vitamin D, electrolytes, etc. to address deficiencies
– Low dose antidepressants – To help with pain, sleep, and gut issues
– Acupuncture, massage, and yoga – May help improve blood flow
– CBT and mindfulness – To cope with stress and anxiety

Treatment plans are tailored to each patient’s specific case and symptoms. Lifestyle adjustments to avoid triggers along with medications, IV therapy, and integrative therapies offer symptom relief for many patients. However, there is no definitive cure at this time.

What are some tips for coping with POTS?

Living with POTS poses many daily challenges, but making certain lifestyle adjustments can help cope with symptoms:

– Stay hydrated – Drink plenty of electrolyte-rich fluids

– Increase salt intake – Add more salt to foods or take supplements

– Wear compression garments – Abdominal binders, thigh-high stockings, etc.

– Take sitting breaks – Avoid standing for too long

– Raise head of bed – Helps prevent nighttime spikes in heart rate

– Schedule rest periods – Pace activities and rest before getting fatigued

– Exercise regularly – Slowly build up stamina with recumbent exercises

– Beat the heat – Stay in air conditioning and avoid hot baths

– Check your biometrics – Use heart rate and blood pressure monitors

– Try mental health counseling – To cope with limitations of chronic illness

– Join a support group – Connect with other POTS patients

– Communicate limitations – Educate friends and family about your needs

– Carry emergency supplies – Water, salt, medications, compression garments

– Plan ahead – Allow extra time and consider contingencies

Making lifestyle adjustments to accommodate your new normal while finding support can help enhance coping skills and resilience.

What is the long-term prognosis with POTS?

The long-term outlook for POTS varies greatly among patients. Some key points on prognosis:

– 1/3 of patients recover within 1-2 years, especially younger patients
– 1/3 have persistent but manageable symptoms with treatment
– 1/3 have unrelenting symptoms leading to disability
– POTS is not directly fatal but can severely impair quality of life
– Symptoms and episodes may fluctuate in frequency and intensity
– Co-existing disorders impact severity and progression
– Pregnancy often improves or resolves POTS but symptoms may return
– Older patients tend to fare worse than younger patients
– Lifestyle adjustments and appropriate treatment can improve prognosis
– Research into new treatments provides hope for better long-term outlook

So in summary, the long-term prognosis with POTS ranges from gradual recovery to chronic symptoms leading to major lifestyle impairments. Those who are younger, access treatment early, and make lifestyle changes tend to have better outcomes. Continued research brings optimism for better management.


Living with POTS can be extremely challenging, significantly impacting health and quality of life. However, with the right treatment plan and lifestyle adjustments, many patients find daily symptoms and limitations become more manageable. New research offers hope for better treatments and potential cures in the future. In the meantime, patients can empower themselves by seeking knowledgeable care providers, connecting with support communities, and advocating for their needs. With resilience, creativity, and proper care, living a fulfilling life with POTS is absolutely possible.