Understanding the Connections Between POTS and Narcolepsy

Understanding POTS and Narcolepsy

Narcolepsy and POTS (Postural Orthostatic Tachycardia Syndrome) are two chronic neurological conditions that can significantly impact a person's quality of life. Both cause issues with sleep, concentration, and energy levels. However, they have important differences in their underlying causes and symptoms.

What is Narcolepsy?

Narcolepsy is a chronic sleep disorder characterized by excessive daytime sleepiness, sleep attacks, cataplexy, sleep paralysis, and hallucinations. People with narcolepsy have issues regulating periods of wakefulness and sleep, meaning they can fall asleep at any time, even while engaged in activities.

It is estimated that about 200,000 Americans have narcolepsy. While symptoms typically start in adolescence or young adulthood, many people live with narcolepsy for years before getting a proper diagnosis.

Narcolepsy Symptoms

The main symptom of narcolepsy is excessive and overwhelming daytime sleepiness. People feel persistently tired despite getting adequate nighttime sleep. They may experience "sleep attacks" where they suddenly fall asleep without warning.

Cataplexy is another common symptom, occurring in about 70% of people with narcolepsy. Cataplexy involves a sudden loss of muscle tone and strength, often triggered by strong emotions. The knees may buckle, the head may nod, or in severe cases, the person may completely collapse.

Other symptoms include:

• Sleep paralysis - temporary inability to move or speak when waking up or falling asleep
• Hallucinations - vivid dream-like images during sleep onset or waking
• Disturbed nighttime sleep - frequent awakenings or difficulty staying asleep

Narcolepsy Causes

Narcolepsy involves the loss of neurons that produce hypocretin (also called orexin), a neurotransmitter that helps regulate sleep-wake cycles. Low hypocretin leads to problems staying awake and poor control over REM sleep.

The exact cause of the neuron loss is unknown, but believed to involve a combination of genetic and environmental factors. A variant in the HLA-DQB1 gene makes people more susceptible. Head trauma, viral infections, toxins, or autoimmune reactions may trigger the onset of symptoms.

Narcolepsy Diagnosis

Diagnosing narcolepsy involves ruling out other potential causes of daytime sleepiness through medical history, physical exam, sleep studies, and blood tests. Sleep studies help identify REM sleep abnormalities characteristic of narcolepsy.

Narcolepsy Treatment

While there is no cure for narcolepsy yet, a combination of lifestyle changes, medications, and coping strategies can help manage symptoms. The main treatment approaches include:

• Scheduled napping and good sleep habits
• Stimulants like modafinil to improve wakefulness
• Antidepressants for cataplexy and REM sleep disturbances
• Sodium oxybate to consolidate nighttime sleep
• Counseling to cope with symptoms

What is POTS?

POTS stands for postural orthostatic tachycardia syndrome. It is a blood circulation disorder characterized by an abnormal increase in heart rate and drop in blood pressure when standing up. This reduces blood flow to the heart and brain, triggering a cascade of debilitating symptoms.

An estimated 1 to 3 million Americans have POTS. It most often impacts women between the ages of 15 to 50. Many people with POTS also have joint hypermobility issues due to related connective tissue abnormalities.

POTS Symptoms

The hallmark POTS symptom is a rapid spike in heart rate to over 120 bpm, or a 30+ bpm rise over baseline, when moving from lying down to standing. This is accompanied by a drop in blood pressure and dizziness, indicating insufficient blood and oxygen circulation.

Other common POTS symptoms include:

• Fatigue
• Headaches
• Exercise intolerance
• Nausea
• Abdominal pain
• Brain fog
• Increased heart rate when eating
• Sleep disruptions
• Pre-syncope or fainting

POTS Causes

While the exact mechanisms are still being researched, POTS appears to stem from dysfunctions in the autonomic nervous system which regulates unconscious body functions like heart rate, digestion, and breathing. Nerves may not communicate properly to control blood flow upon standing.

Triggers for developing POTS include infections, pregnancy, trauma, or autoimmune reactions. Genetic factors can predispose people to getting POTS as well.

POTS Diagnosis

A POTS diagnosis requires:

• Heart rate increase of 30+ bpm when moving from lying to standing (40+ for ages 12-19), sustained over 10+ minutes
• Exclusion of other causes like anxiety disorders
• Symptoms lasting 6+ months
• Lack of orthostatic hypotension

Tilt table testing can aid diagnosis by measuring vital signs with changes in position over time. Many patients have low blood volume and norepinephrine compared to healthy controls.

Treating POTS

While challenging, many people with POTS learn to effectively manage symptoms through some combination of:

• Increasing fluid and salt intake
• Compression garments
• Exercise programs to build strength/endurance
• Raising the head of the bed
• Avoiding triggers like heat, alcohol, large meals
• Beta blockers or ivabradine to slow heart rate
• Midodrine to raise blood pressure
• Antidepressants for pain/sleep
• Skipping periods with contraceptives

Comparing POTS and Narcolepsy

At first glance, POTS and narcolepsy may seem quite distinct. But there are some noteworthy overlaps in terms of symptoms, demographics, triggers, and treatments.

Shared Symptoms

Both POTS and narcolepsy involve neurological signaling issues that produce significant fatigue and sleep disruptions. Brain fog, headaches, sleep troubles, exercise intolerance, and fainting are problematic areas for many patients with either condition.

However, only those with narcolepsy struggle with cataplexy, hallucinations, and sudden irresistible sleep attacks throughout the day. And only those with POTS experience pre-syncope triggered by standing due to blood flow deficiencies.

Similar Demographics

POTS and narcolepsy predominantly impact young women for reasons still being investigated. Autoantibodies may play a role. Fluctuating estrogen levels also influence neurological functioning and blood volume status.

Both conditions often take years to properly diagnose due to overlapping symptoms with other disorders. Patients frequently struggle to have their disabling symptoms taken seriously by friends, family, and health professionals.

Overlapping Triggers

For those genetically predisposed to dysfunction in neurological or circulatory regulation, certain events appear to commonly trigger POTS or narcolepsy onset. These include:

• Viral or bacterial infections (flu, mono, Lyme disease, etc.)
• Pregnancy and post-partum hormonal shifts
• Surgery
• Severe stress
• Traumatic injuries

This suggests shared underlying vulnerabilities in stress response systems and potential autoimmune mechanisms still being uncovered through research.

Treatment Considerations

Since managing chronic illness consumes so much time and energy, improving sleep quality and brain functioning is imperative for POTS and narcolepsy patients alike.

Helpful strategies include:

• Stimulant/wakefulness promoting medications
• Lifestyle changes like hydration, nutrition, stress reduction techniques
• Graded exercise programs to slowly improve conditioning
• Support groups to reduce isolation and learn coping tips

Those with both POTS and narcolepsy may need to tailor treatment approaches carefully to avoid worsening any symptoms. But many patients see substantial gains in functioning and quality of life from finding the right combination of interventions.

The Bottom Line

Narcolepsy and POTS are challenging syndromes with major symptom overlap, especially around fatigue, brain fog, and sleep disruption. Both involve some form of neurological miscommunication that can be severely disabling.

However, important distinctions exist. Narcolepsy specifically produces irresistible and sudden "sleep attacks", cataplexy, hallucinations, and REM abnormalities. In contrast, POTS causes blood flow deficiencies upon standing, with constant vigilance needed to avoid pre-syncope and passing out.

Those with narcolepsy lack proper wake/sleep regulation, falling asleep spontaneously at inappropriate times. Those with POTS struggle to maintain consciousness due to inadequate circulation while upright. Improvements in technology and medical knowledge continue to advance better treatments for dealing with these unpredictable and frustrating conditions.

Disclaimer: This article is for informational purposes only and does not constitute medical advice. Always consult with a healthcare professional before starting any new treatment regimen.