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Narcolepsy and MS: Living With Both Conditions

Medically reviewed by Allen J. Blaivas, D.O.
Written by Brooke Dulka, Ph.D.
Posted on November 1, 2021

Narcolepsy is a rare sleep disorder marked by excessive daytime sleepiness (hypersomnia), sleep attacks, sleep paralysis, and, in some cases, cataplexy. Multiple sclerosis (MS) is a neurodegenerative disorder that can cause motor disturbances. Both of these disorders are autoimmune diseases.

Both narcolepsy and MS can occur in the same person, at the same time. When this co-occurrence of disorders happens, it is called comorbidity. Living with comorbid narcolepsy and MS presents its own set of difficulties, but understanding what these disorders have in common can be useful in managing symptoms.

Narcolepsy and MS Comorbidity

Generally, sleep disorders commonly occur in those with MS. Examples of such sleep disorders include insomnia, restless legs syndrome, and obstructive sleep apnea. Although it is a rare combination, narcolepsy and MS can also be comorbid. One systematic review analyzed two studies that reported instances of comorbid narcolepsy and MS. This review found rates of people with both conditions ranging between 0 percent and 1.2 percent. An underdiagnosis of sleep disorders in people with MS may play a role in this lack of data.

Doctors may overlook symptoms of narcolepsy in people with MS. One Japanese study demonstrated — in a small case study — that among seven individuals who had MS and excessive daytime sleepiness, four met diagnostic criteria for narcolepsy upon further inspection. In addition, they had hypothalamus lesions and hypocretin (orexin) deficiency, two critical biological features of narcolepsy.

Shared Risk Factors

This comorbidity may be due, in part, to the autoimmune component of MS and narcolepsy. Genetic susceptibility is also believed to play a role. These factors were demonstrated by research that came soon after the 2009 H1N1 swine flu pandemic. In a few European countries, a vaccine known as Pandemrix was distributed, and a larger than normal proportion of children developed narcolepsy. More recent research suggests that the link between the Pandemrix vaccine and narcolepsy is likely due to immune cells (T cells), which were primed by H1N1 vaccine peptides, cross-reacting with autoantigens found within the central nervous system (brain and spinal cord). The Pandemrix vaccine essentially caused the body of a genetically susceptible individual to attack itself.

In the context of MS, one study showed that a genetically susceptible man with MS received the same vaccination during the 2009 pandemic and subsequently developed narcolepsy. This genetic susceptibility centers on the HLA (human leukocyte antigen) gene. The man had both the HLA DRB1*15:01 allele (associated with MS) and the HLA DQB1*06:02 allele (associated with narcolepsy). Thus, HLA gene variants were speculated to be a shared risk factor for narcolepsy and MS.

Shared Symptoms

Narcolepsy and MS also have a few shared symptoms. For instance, fatigue is widely experienced by both people with narcolepsy and those with MS. Fatigue is also associated with symptoms of depression and a reduced quality of life. Sleepiness, while less common than fatigue in cases of MS, is also experienced by people with both conditions.

Hypothalamus lesions can occur in both narcolepsy and MS. The main difference is that brain lesions are specific to the hypothalamus in cases of narcolepsy. In cases of MS, these lesions spread throughout the whole brain as myelin is destroyed (a characteristic MS symptom). People can even develop secondary narcolepsy via damage to the hypothalamus.

Treatments for Narcolepsy and MS

If a person is living with narcolepsy and MS, treatments may include approaches that work to curb dysfunction associated with each condition. There are also some common treatments — this is largely because several side effects of narcolepsy and MS are the same. Sometimes the same drug can be used to treat different (but similar) symptoms. For instance, Provigil (modafinil) is used to treat fatigue in MS and excessive daytime sleepiness in narcolepsy.

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References
  1. Narcolepsy — Nature Reviews Disease Primers
  2. Multiple Sclerosis Review — Pharmacy and Therapeutics
  3. Morbidity — Comorbidity and Multimorbidity. What Do They Mean? — British Geriatrics Society
  4. Sleep Disorders in Multiple Sclerosis. Review — Current Neurology and Neuroscience Reports
  5. A Systematic Review of the Incidence and Prevalence of Sleep Disorders and Seizure Disorders in Multiple Sclerosis — Multiple Sclerosis Journal
  6. The Underdiagnosis of Sleep Disorders in Patients With Multiple Sclerosis — Journal of Clinical Sleep Medicine
  7. Symptomatic Narcolepsy in Patients With Neuromyelitis Optica and Multiple Sclerosis: New Neurochemical and Immunological Implications — JAMA Neurology
  8. Increased Incidence and Clinical Picture of Childhood Narcolepsy Following the 2009 H1N1 Pandemic Vaccination Campaign in Finland — PLOS One
  9. Enhanced Influenza A H1N1 T Cell Epitope Recognition and Cross-Reactivity to Protein-O-Mannosyltransferase 1 in Pandemrix-Associated Narcolepsy Type 1 — Nature Communications
  10. A Patient With Both Narcolepsy and Multiple Sclerosis in Association With Pandemrix Vaccination — Journal of the Neurological Sciences
  11. Severe Fatigue in Narcolepsy With Cataplexy — Journal of Sleep Research
  12. Fatigue — National Multiple Sclerosis Society
  13. Daytime Sleepiness Versus Fatigue in Patients With Multiple Sclerosis: A Systematic Review on the Epworth Sleepiness Scale as an Assessment Tool — Sleep Medicine Reviews
  14. DTI Reveals Hypothalamic and Brainstem White Matter Lesions in Patients With Idiopathic Narcolepsy — Sleep Medicine
  15. Hypothalamic Lesions in Multiple Sclerosis — Journal of Neuropathology and Experimental Neurology
  16. Narcolepsy Fact Sheet — National Institute of Neurological Disorders and Stroke
  17. Efficacy and Safety of Modafinil (Provigil) for the Treatment of Fatigue in Multiple Sclerosis: A Two Centre Phase 2 Study — Journal of Neurology, Neurosurgery, and Psychiatry
  18. Experience With the Use of Modafinil in the Treatment of Narcolepsy in an Outpatient Facility Specialized in Diurnal Excessive Sleepiness in São Paulo — Sleep Science
Allen J. Blaivas, D.O. is certified by the American Board of Internal Medicine in Critical Care Medicine, Pulmonary Disease, and Sleep Medicine. Review provided by VeriMed Healthcare Network. Learn more about him here.
Brooke Dulka, Ph.D. is a freelance science writer and editor. She received her doctoral training in biological psychology at the University of Tennessee. Learn more about her here.

A MyNarcolepsyTeam Member

It's interesting how many comments this post has of PWL & connective tissue disorders. I too have narcolepsy + Ehlers Danlos syndrome, which is another type of CT disorder.

It's not that surprising… read more

October 14, 2022
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