(1) Authoritative online information
WebMD - Hypersomnia
Narcolepsy Link (from Jazz Pharmaceuticals)
Sleep Counts (from Jazz Pharmaceuticals)
Hypersomnia Foundation: https://www.hypersomniafoundation.org
(2) Referrals
Resources for professionals
Marín Agudelo, H. A., Jiménez Correa, U., Carlos Sierra, J., Pandi-Perumal, S. R., & Schenck, C. H. (2014). Cognitive behavioral treatment for narcolepsy: can it complement pharmacotherapy?. Sleep science (Sao Paulo, Brazil), 7(1), 30–42. https://doi.org/10.1016/j.slsci.2014.07.023
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4521653/
Morgenthaler T.I., Kapur V.K., Brown T.M., Swick T.J., Alessi C., Aurora R.N. Practice parameters for the treatment of narcolepsy and other hypersomnias of central origin. Sleep. 2007;30(12):1705–1711. [PMC free article] [PubMed] [Google Scholar] [Ref list]
Garma L., Marchand F. Non-pharmacological approaches to the treatment of narcolepsy. Sleep. 1994;17:S97–S102. [PubMed] [Google Scholar] [Ref list]
Ong, J.C., Dawson, S.C., Mundt, J.M., Moore, C. Developing a Cognitive-Behavioral Therapy for Hypersomnia Using Telehealth: A Feasibility Study. Journal of Clinical Sleep Medicine. 2020. https://jcsm.aasm.org/doi/10.5664/jcsm.8750
CBT-H must be administered by qualified healthcare providers. If someone with a hypersomnia would like to try CBT-H, they should speak to their health care provider to find one who has experience in CBT. Dr. Ong will provide the treatment manual to qualified providers upon request. His email address is jason.ong@northwestern.edu.
Franceschini, C., Pizza, F., Antelmi, E. et al. Narcolepsy treatment: pharmacological and behavioral strategies in adults and children. Sleep Breath 24, 615–627 (2020). https://doi.org/10.1007/s11325-019-01894-4
Bhattarai J, Sumerall S (2017) Current and future treatment options for narcolepsy: a review. Sleep Sci 10:19–27. https://doi.org/10.5935/1984-0063.20170004
Marin-Agudelo H (2011) Multicomponent cognitive behavioral treatment efficacy for narcolepsy (MCBT-N). Sleep Med 12:S55–S42. https://doi.org/10.1016/j.slsci.2014.07.023
Conroy DA, Novick DM, Swanson LM (2012) Behavioral management of hypersomnia. Sleep Med Clin 7:325–331 Article
Marín-Agudelo H, Jiménez Correa U (2012) Scheduled naps and systematic desensitization in the emotional processing in patients with narcolepsy: a comparative study of autonomic and cognitive evoked potentials. Sleep 35:A275
Marín-Agudelo H, Jiménez Correa U (2013) Beliefs and dysfunctional attitudes in patients with narcolepsy; double-blind study of treatment efficacy. Sleep 36(Suppl: A256)
Schinkelshoek, M.S., Fronczek, R. & Lammers, G.J. Update on the Treatment of Idiopathic Hypersomnia. Curr Sleep Medicine Rep 5, 207–214 (2019). https://doi.org/10.1007/s40675-019-00158-7
https://www.sleephealthfoundation.org.au/idiopathic-hypersomnia.html
Ali M; Auger RR; Slocumb NL; Morgenthaler TI. Idiopathic hypersomnia: clinical features and response to treatment. J Clin Sleep Med 2009;5(6):562-568.
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https://www.narcolepsylink.com/disease-management/treatment-decisions/
Narcolepsy Link (from Jazz Pharmaceuticals)
Sleep Counts (from Jazz Pharmaceuticals)
Hypersomnia Foundation: https://www.hypersomniafoundation.org/
https://www.xywav.com/idiopathic-hypersomnia/what-is-ih/?utm_source=google&utm_medium=cpc&utm_campaign=USA_GO_SEM_NB_PH_Xywav-IH-DTC-Sleep-Disorder-Standard&utm_content=NB_PH_Xywav_IH_DTC_Sleep_Disorder_Hypersomnia&utm_term=hypersomnia%2Bdisorder&gclid=CjwKCAiA55mPBhBOEiwANmzoQth6kwT0hj9o3GX58_kztXLJJ9BY0oj1wLTS-yZcauzUvjOJIEWVzBoCTWIQAvD_BwE&gclsrc=aw.ds
https://link.springer.com/article/10.1007/s11325-019-01894-4
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Questions that are helpful in detecting possible narcolepsy include the following (table 1):
●Are you sleepy most of the day?
●Do you feel rested on waking in the morning?
●Are your naps refreshing?
●Do you ever see, feel, or hear things that you know aren’t there as you are falling asleep?
●Are you ever unable to move when you first awake or as you are falling asleep?
●Do you have muscle weakness when you laugh or tell a joke?
●Over the last two weeks, how often have you fallen asleep when you did not intend to?
Do you have vivid dreams during daytime naps?
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DIAGNOSTIC CRITERIA
According to the International Classification of Sleep Disorders, a diagnosis of idiopathic hypersomnia requires all of the following:
●Daily periods of irrepressible need to sleep or daytime lapses into sleep for at least three months
●Cataplexy is absent
●A multiple sleep latency test (MSLT) documents fewer than two sleep-onset rapid eye movement periods (SOREMPs), or no SOREMPs if the REM sleep latency on the preceding polysomnogram was ≤15 minutes.
●The presence of at least one of the following:
MSLT shows a mean sleep latency of ≤8 minutes
Total 24-hour sleep time is ≥660 minutes (typically 12 to 14 hours) on 24-hour polysomnography or by wrist actigraphy in association with a sleep log
●Insufficient sleep syndrome is ruled out (if deemed necessary, by lack of improvement of sleepiness after an adequate trial of increased nocturnal time in bed, preferably confirmed by at least a week of wrist actigraphy)
●No better explanation by another sleep disorder, medical or psychiatric disorder or use of drugs or medications
https://healthysleep.med.harvard.edu/narcolepsy/diagnosing-narcolepsy/narcolepsy-self-evaluation
Cognitive-Behavioral Therapy for Hypersomnia
KEY: CDH including narcolepsy type 1, narcolepsy type 2, and IH. CBT = cognitive behavioral therapy, CDH = central disorders of hypersomnolence, IH = idiopathic hypersomnia.
Module / Activities
Education about CDH - Provide education about the prevalence and etiology of narcolepsy and/or IH (as appropriate for the patient). Discuss the patient’s experience with the emergence of symptoms, the journey to getting diagnosed, and the perception of others about having narcolepsy. Provide resources for learning more about narcolepsy or IH (as appropriate).
Self-identity and self-image - Discuss self-identity and changes that have developed as the result of CDH symptoms. This includes strategies for active acceptance and value-congruent living.
Structured daytime activities - Use of sleep/wake diaries to develop a personalized structure for scheduled naps (as appropriate) and waking activities in small segments throughout the day (Pomodoro technique). Explain the nurturing/depleting activity to evaluate energy transactions throughout the day.
Structured nighttime activities - Use of sleep/wake diaries to develop a structure for regulating bedtime and waketime and to practice good sleep hygiene.
Coping skills and emotion-regulation - Discuss problem-focused and emotion-focused coping strategies to manage the unpredictability and/or constancy of CDH symptoms. This include cognitive flexibility for dealing with limitations or setting a structured worry time to manage anxiety.
Social support - Explain the importance of support from family and friends and connecting with others through patient organizations for people with CDH.
Medical, legal, and occupational issues - Discuss disability accommodations at work/school (if applicable), disclosing CDH diagnosis at work/school, and preparing for doctor’s visits.
Other topics - Discuss topics as appropriate: (1) managing the unpredictability of cataplexy; (2) medication adherence; (3) impact of CDH symptoms on family relationships; (4) using service or emotional support animals