Type 1 Narcolepsy: Neurological System Dysfunction, Not Just a Sleep Problem

narcolepsynavigators
Oct 31
5 min read

Updated: 18 hours ago

- Missing Conductor of the Orchestra- Solomon Brigg

As Solomon Briggs, an Independent Sleep Advocate with Type 1 Narcolepsy (T1N), I wrote this to address the persistent lack of recognition given to the systemic reality of this neurological system dysfunction. This effort aims to highlight (only a few of what are so many) major facets of the disorder that are routinely unrecognized, dismissed, and downplayed in conventional discourse.

Type 1 Narcolepsy: A Neurological System Crisis

Type 1 Narcolepsy (T1N) is widely mischaracterized as merely a sleep disorder, yet it is fundamentally a neurological system crisis rooted in a deficiency of the critical neuropeptide, Orexin (also known as hypocretin). This deficiency arises from the destruction of orexin-producing neurons in the hypothalamus.

Orexin/Hypocretin normally functions as an excitatory neuropeptide and a key regulator, or “conductor,” within the central autonomic network. Even referred to as ‘the conductor of the Orchestra of neurotransmitters, neuropeptides, hormones.’ Its absence causes systemic deregulation across the body, defining T1N as a complex Neurologic Systemic Dysfunction Disorder.

The Core Failure: Orexin Receptor Dysfunction

The disruption in T1N affects the functions mediated by the two primary Orexin receptors, OX1R and OX2R:

System Dysfunction	Receptor Focus & Function (Supported by sources)
Systemic/Autonomic Breakdown (OX1R)	Orexin-1 (OX1R) has high affinity for Orexin A and is concentrated in brain regions controlling non-wakefulness functions like feeding, memory, and reward [1]. The orexin neurons are an integral part of the central autonomic network [3].
Sleep/Wake Regulation (OX2R)	Orexin-2 (OX2R) is primarily found in areas that regulate arousal [1]. This receptor is crucial for maintaining wakefulness, with the role of OX2R being considered more important than OX1R [1]. Research in mice demonstrates that those lacking the OX2R receptor show manifestations of narcolepsy syndromes [1].

Orexin/Hypocretin- Solomon Briggs

T1N: The Systemic Breakdown

Orexin deficiency triggers measurable dysfunction across various bodily systems, there’s a reason those with T1N have a high rate of comorbidities of all different sorts (the following are only a few examples of the directions they present in):

Cardiovascular and Autonomic Systems: T1N is associated with autonomic nervous system dysfunction. Patients show significant alterations in heart rate and blood pressure (BP). Compared to healthy controls, individuals with narcolepsy face a heightened risk of new-onset cardiovascular events, including stroke, heart failure, and major adverse cardiac events. The ability to achieve normal nocturnal BP dipping is often destabilized due to hypocretin deficiency.

Metabolism and Adiposity: Narcolepsy is linked to a significantly higher prevalence of obesity, despite patients often reporting normal or even reduced food intake. This suggests an energy balance disruption, possibly involving lower basal metabolic rate.
The orexin system is crucial for the development, differentiation, and function of Brown Adipose Tissue (BAT), a highly metabolically active tissue involved in non-shivering thermogenesis. Impaired BAT functionality resulting from the destruction of orexin-producing neurons is strongly hypothesized to contribute to the adiposity seen in T1N patients.

Thermoregulation: Patients with T1N exhibit altered body temperature profiles. They may have a higher core body temperature during the first part of the night compared to controls.

Daytime sleep attacks are strongly predicted by physiological changes, specifically an increase in distal skin temperature and distal-to-proximal temperature gradient (DPG) in the minutes immediately prior to sleep onset.

- Psychological Cognitive Toll- Solomon Briggs

The Psychological and Cognitive Toll

The debilitating nature of T1N results in an immense psychological and cognitive burden.

Mental Health Comorbidities: There is a high co-morbidity with serious psychiatric conditions. Depression is the most commonly reported psychiatric symptom, often linked to the chronic stress and impaired quality of life caused by the disorder. Anxiety disorders, including panic attacks and social phobias, are also frequently reported.
Cognition and Attention: Cognitive deficits, often described as ‘brain fog’, encompass broad impairments in cognition, attention, and vigilance, significantly impacting daily function.
ADHD: Symptoms of Attention-Deficit/Hyperactivity Disorder (ADHD) are reported at high rates in both pediatric and adult narcolepsy populations. Hyperactivity may, in some cases, be a compensatory response to being under-aroused or sleepy.
Quality of Life: The chronic, debilitating reality of T1N, combined with the lack of truly restorative sleep, shatters the capacity to naturally recover and re-balance. This results in a heightened vulnerability to stress, significantly reduced quality of life, and an increased risk of mortality compared to those without narcolepsy.

- Psychological Cognitive Toll- Solomon Briggs

Challenging the Clinical Focus

While drug development is crucial, the measure of therapeutic success must be scrutinized. If treatments, such as emerging orexin/hypocretin agonists, focus primarily on achieving extended wakefulness – merely keeping the eyes open – they may fail to address the core systemic dysfunction.

It is essential to prioritize treatments that promote systemic re-syncing and quality, restorative sleep. For instance, therapeutic agents like Sodium Oxybate (SXB) have shown evidence of addressing underlying dysfunction by improving nocturnal sleep and successfully normalizing the core body temperature profile.

To live with T1N is to constantly seek recognition for good reason, due to having a profound neurological failure that the world often minimizes. Accurate understanding of T1N as a major neurological system crisis is necessary to provide comprehensive support and appropriate treatment.

A Profound Dysfunction- Solomon Briggs

References

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Disclaimer: The information provided in this article is intended for informational and educational purposes only. Seek a qualified medical professional with expertise in Narcolepsy for diagnosis or treatment. I am not a medical professional.