Narcolepsy and POTS are distinct disorders with different underlying causes. But they can happen at the same time, and this requires a nuanced approach to treatment.

Postural orthostatic tachycardia syndrome (POTS) is a condition that involves an atypical increase in heart rate when you stand up, and it’s often accompanied by dizziness and fatigue.

Narcolepsy is a disorder that disrupts the sleep-wake cycle, leading to excessive daytime sleepiness and sudden sleep episodes.

Let’s explore the relationship between POTS and narcolepsy by examining their similarities, differences, and treatment options.

Narcolepsy and POTS are distinct medical conditions affecting different aspects of your body.

Narcolepsy is a neurological disorder that happens when your brain cannot regulate your sleep-wake cycles. It is often due to a deficiency in hypocretin. POTS is a disorder of the autonomic nervous system, primarily involving a rapid heart rate upon standing.

Yet Narcolepsy and POTS can share similar symptoms that occasionally may lead a person to confuse the two conditions. These symptoms include:

  • dizziness
  • fatigue
  • lightheadedness
  • difficulties in your ability to think

Both conditions can significantly affect your quality of life.

Narcolepsy symptoms

There are two main types of narcolepsy: narcolepsy type 1 (NT1) and narcolepsy type 2 (NT2). Here’s more about each of them:

  • NT1: NT1 is typically more severe than NT2. It is known as narcolepsy with cataplexy, which is sudden muscle weakness or paralysis triggered by emotions. NT1 is also associated with the complete loss of hypocretin, a neurotransmitter that plays a key role in controlling wakefulness and REM sleep.
  • NT2: This type of narcolepsy involves excessive daytime sleepiness but does not involve cataplexy. It’s believed to have similar underlying causes as NT1 but without the complete loss of hypocretin.

The symptoms of narcolepsy can vary but commonly include:

  • Excessive daytime sleepiness: persistent sleepiness and a tendency to fall asleep during the day, which is a main symptom of both NT1 and NT2
  • Cataplexy: sudden loss of muscle tone triggered by emotions such as laughter, surprise, or anger, which is specific to NT1
  • Sleep paralysis: temporary inability to move or speak when falling asleep or waking up, which can occur in both NT1 and NT2
  • Hallucinations: vivid, dream-like experiences that occur when falling asleep or waking up, which can occur in both NT1 and NT2
  • Fragmented nighttime sleep: disrupted nighttime sleep, including frequent awakenings or difficulty maintaining sleep, which can occur in both NT1 and NT2
  • Automatic behaviors: performing routine tasks without full awareness or memory, often associated with excessive daytime sleepiness in both NT1 and NT2

People with NT1 often have other health concerns like obesity, diabetes, or mood disorders.

POTS symptoms

POTS can have various symptoms, which may include:

  • Orthostatic intolerance: difficulty maintaining an upright position, as symptoms typically worsen when standing up but improve when lying down
  • Tachycardia: unusually high heart rate, especially when standing up
  • Lightheadedness or dizziness: feeling faint or dizzy when standing up
  • Palpitations: a sensation of rapid or irregular heartbeat
  • Fatigue: persistent tiredness or lack of energy
  • Nausea: feeling sick to the stomach
  • Tremulousness: shaking or trembling, especially in the hands
  • Sweating abnormalities: excessive sweating or inability to sweat
  • Headaches: often described as migraine-like headaches
  • Cognitive difficulties: brain fog, difficulty concentrating, or memory problems

While POTS can affect individuals of any sex and age, about 75% to 80% of people with POTS are female, according to a 2020 research review. The review also notes that most individuals with POTS are diagnosed between ages 15 and 25 years.

It’s not uncommon to experience narcolepsy and POTS at the same time.

A 2023 study of individuals with both POTS and narcolepsy found that 8.7% of people with narcolepsy, especially those with NT1, also had POTS. In addition, 75% of POTS participants also had narcolepsy.

This is a notable overlap, considering that both disorders aren’t particularly common. POTS affects approximately 0.2% of the general population, while NT1 affects an even smaller percentage, 0.026% to 0.05%.

Both narcolepsy and POTS can potentially arise after a viral illness. A case study from 2018 describes an 18-year-old female who developed excessive daytime sleepiness and other symptoms after an upper respiratory infection.

She received a diagnosis of NT2 and POTS after brain imaging revealed lesions in the right thalamus and amygdala. She had typical hypocretin levels. Her symptoms improved with the medications sodium oxybate (for sleepiness) and propranolol (for POTS).

Can POTS cause excessive daytime sleepiness?

While extreme fatigue is more commonly associated with POTS than daytime sleepiness, people with POTS can experience increased daytime sleepiness.

They may also experience poorer sleep quality, which affects their overall health-related quality of life.

Treatment for both narcolepsy and POTS requires careful monitoring to ensure that medications don’t worsen the symptoms of the other condition.

Narcolepsy is often managed with stimulants like modafinil or methylphenidate to address excessive daytime sleepiness. However, if a person also has POTS, stimulants may not be the best choice. This is because they have the potential to increase heart rate, which could worsen POTS symptoms.

Instead, medications like sodium oxybate, a GABA metabolite, may be preferred. It can improve narcolepsy symptoms without worsening POTS symptoms.

A case study from 2022 illustrates this scenario: A 47-year-old woman with both POTS and narcolepsy initially received modafinil, which caused palpitations. Switching to sodium oxybate improved her narcolepsy symptoms and resolved the palpitations.

This highlights the importance of carefully selecting medications for individuals with both conditions.

For POTS, the following lifestyle adjustments are recommended as well:

  • increasing salt and fluid intake
  • wearing compression stockings
  • gradually increasing physical activity

The medications listed below may also be prescribed to help regulate blood pressure:

Having both narcolepsy and POTS can be challenging because medications used to treat one condition can potentially worsen the symptoms of the other. Careful monitoring and personalized treatment plans are essential.

If you think you may have narcolepsy, POTS, or both, it’s best to consult a healthcare professional for an accurate diagnosis. You can schedule an appointment with your primary care physician or a specialist for evaluation, and they may refer you to a sleep or autonomic specialist for specialized care.