Are U.S. adults reporting less sleep? There are both medication approaches and lifestyle changes. Nope! Atlanta, GA 30338. manage idiopathic hypersomnia A UK woman has dubbed herself a real-life Sleeping Beauty due to her unusual condition, which causes her to sleep up to 22 hours a day. The pathophysiology of idiopathic hypersomnia is not well understood, and diagnosis requires exclusion of other more common causes of excessive sleepiness. 2017; doi:10.1016/j.jsmc.2016.10.013. lol. When you have finished using a XYWAV bottle: Anxiety doesnt cause hypersomnia. This test is usually carried out during the day, right after polysomnography is completed, so that doctors can be sure the results of the test are not affected by lack of sleep the night before the test. Treatments include medications, non-drug options and education and support groups. Idiopathic hypersomnia and hypersomnolence disorder: A systematic review of the literature. I get palpitations frequently, but again, not sure if its medication related or what. Make a donation. For the longest time I thought that I just complained about the cold more than everyone else but everyone else was just as cold. suggesting a genetic basis American Academy of Sleep Medicine (AASM). 2021; doi:10.1016/j.sleep.2021.01.018. Idiopathic hypersomnia. Tell us about your sleep habits, behavior and environment so we can help you sleep better. The nervous system is made up of the brain, spinal cord, and nerves. How frequently do your legs feel restless or do you kick in your sleep? They do often fit go from ine diagnosis to another. WebDIAGNOSTIC CRITERIA FOR IDIOPATHIC HYPERSOMNIA (IH) ACCORDING TO THE ICSD-3 The following 6 criteria must be met for a diagnosis of idiopathic hypersomnia (also termed idiopathic CNS hypersomnolence by the ICSD-3): 1. Waking up gasping or choking, which may be symptom of sleep apnea, a condition in which the airway I looked it up and it came up as Raynauds Syndrome/Phenomenon/Disease. XYWAV solution prepared after mixing with water should be taken within 24 hours. Narcolepsy type 2 does not include cataplexy and is not caused by a lack of orexin. Your daily habits and environment can significantly impact the quality of your sleep. How often do you struggle staying awake throughout the day? It can be a challenge to adjust to life with IH. Do you have any known medical conditions that disrupt your sleep? Idiopathic hypersomnia is not well-characterized. Hypersomnolence Disorder. Psychostimulants include amphetamine, methylphenidate (Ritalin, Daytrana, Methylin, Concerta) or dextroamphetamine (Procentra, Dexedrine, Zenzedi). Idiopathic Hypersomnia If a patient has excessive sleepiness, without cataplexy, that is not refreshed by naps or sleep, they may be diagnosed with idiopathic sleep cycle. This content does not have an English version. hypersomnolence (See also Approach to the Patient With a Sleep or Wakefulness Disorder .) Littner MR, et al. Im way more cold than most people. Sowa NA. The International Classification of Sleep Disorders Third Edition (ICSD-3). A prescription drug has recently been approved by the FDA to Dr. Singh is the Medical Director of the Indiana Sleep Center. Symptoms often begin between adolescence and young adulthood How many hours of sleep per night do you get? During polysomnography, people with idiopathic hypersomnia usually fall asleep quickly, sleep for a long time, and may show certain unusual characteristics in how they move through the sleep stages. Practice parameters for clinical use of the multiple sleep latency test and the maintenance of wakefulness test. nerve cells with GABA-A receptors Its awful. Inaccurate or unverifiable information will be removed prior to publication. report that excessive daytime sleepiness interferes with their activities at least a few days per month. Check out these best-sellers and special offers on books and newsletters from Mayo Clinic Press. The autonomic nervous system is responsible for processes in the body that are not consciously controlled, such as body temperature, weight, heart rate, and digestion. Secondary hypersomnia means your excessive sleepiness is due to some other known cause. persistent sleepiness during the day Consider making some lifestyle changes to help improve the quality of your sleep and keep you safe and avoid injuries and accidents. Participants with a disease may participate to help others, but also to possibly receive the newest treatment and additional care from clinical study staff. A person with narcolepsy may feel refreshed after a short nap. Idiopathic hypersomnia care at Mayo Clinic. How often do you have trouble falling asleep? View Source Its usually diagnosed in adolescence or young adulthood (mean age is 17 to 24 years). Proper diagnosis of idiopathichypersomniais key to establishing beneficial treatment strategies and includes: IH is a disorder of the brain and central nervous system whose cause is not known. Sleep. Some guides and articles feature links to other relevant Sleep Foundation pages. There may be some medications and non-drug therapies that can help improve your symptoms. For me, i have a very low body temperature with cold extremities throughout the day. In other cases, doctors may recommend medications to treat excessive sleepiness, tiredness, and other symptoms. This means that treatment focuses on addressing symptoms rather than treating the conitions underlying cause. More commonly accepted criteria is that there are two main types of hypersomnia: secondary hypersomnia and primary hypersomnia. Hypersomnia evaluation, treatment and social and economic aspects. The National Center for Biotechnology Information advances science and health by providing access to biomedical and genomic information. Hypersomnia: Evaluation, Treatment, and Social and Economic Aspects. In some cases, you may be living with another sleep condition Merck Manual Professional Version., Retrieved November 15, 2022, from. Research is currently ongoing to identify this small molecule and determine what proportion of the IH population may be affected by it. How often do you take medicine or supplements to help you sleep? The need to sleep can strike at any time, including when you're driving a car or working, which makes idiopathic hypersomnia potentially dangerous. Im definitely cold all the time. Sleep Medicine Clinics. The most commonly used treatment modalities are lifestyle advice and pharmacological therapy. WebLearn more about Idiopathic Hypersomnia causes, sign and symptoms, treatment and diagnosis at FindaTopdoc. Purpose of Review Idiopathic hypersomnia is an incapacitating disorder with a profound impact on daytime performance and quality of life. National Library of Medicine, Biotech Information While these conditions have similarities, narcolepsy often involves the symptom of cataplexy, in which a person is still awake but briefly loses the ability to control their muscles. How often do you drink caffeinated beverages in the afternoon? Palpitations are the awareness of the heartbeat and i can feel mine always. These internal links are intended to improve ease of navigation across the site, and are never used as original sources for scientific data or information. Joanna Cox, 38, suffers with Idiopathic hypersomnia, a condition that sees her sleep for up to 22 hours a day. up to date with the latest news and upcoming events. Mayo Clinic on Incontinence - Mayo Clinic Press, NEW The Essential Diabetes Book - Mayo Clinic Press, NEW Ending the Opioid Crisis - Mayo Clinic Press, FREE Mayo Clinic Diet Assessment - Mayo Clinic Press, Mayo Clinic Health Letter - FREE book - Mayo Clinic Press, Mayo Clinic Graduate School of Biomedical Sciences, Mayo Clinic School of Continuous Professional Development, Mayo Clinic School of Graduate Medical Education, Book: Mayo Clinic Family Health Book, 5th Edition, Newsletter: Mayo Clinic Health Letter Digital Edition. A majority of physicians in the space have turned to off-label use of wake-promoting therapies typically used in patients with narcolepsy to help address the sleepiness issues. But I will say, if youre on BP meds and youre getting surgery, please bring it up with the nurse on your visit when discussing medications you can take up until the surgery because my mother mentioned I was on it AFTER the surgery and I had a complication because I stopped taking it and as a beta blocker, it could affect your heart with surgery. A UK woman has dubbed herself a real-life Sleeping Beauty due to her unusual condition, which causes her to sleep up to 22 hours a day. I guess I also sometimes develop super red and hot palms and/or cheeks. To ensure that sleepiness is not caused by another condition, a doctor must then rule out sleep deprivation and make sure that there is no evidence of cataplexy, which describes when a person suddenly loses muscle tone without losing consciousness. Researchers from participating institutions use the database to search for and invite patients or healthy volunteers who meet their study criteria to participate. All scientific data and information must be backed up by at least one reputable source. Medications and lifestyle changes can help improve some symptoms in some people with hypersomnia. Forms; Dental Services; Products; Contact Us; Specials; Search NINDS aims to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease. Advertising on our site helps support our mission. The sleep specialist directory is managed by the Hypersomnia Foundation. Even in the middle of class, a meeting, anything. How it's defined, its causes, and the steps that can help resolve it. (See also Approach to the Patient With a Sleep or Wakefulness Disorder .) Reliance on any information on this website is solely at your own risk. It's thought to affect about 5% of the population. Some experts suspect that idiopathic hypersomnia arises due to increased activation of Difficulty waking up in the morning (sleep drunkenness) or after daytime naps, sometimes appearing confused or combative. If you sleep for 7 hours, you will have 80-100 minutes of REM sleep per night. What does that mean? with an unknown source may be called idiopathic. Any use of this site constitutes your agreement to the Terms and Conditions and Privacy Policy linked below. NINDS aims to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease. Find resources for patients and caregivers that address the challenges of living with a rare disease, Learn more about the different types of clinical studies, ResearchMatch helps connect people interested in research studies, UMLSVocabulary Standards and Mappings Downloads, Access aggregated data from Orphanet at Orphadata, National Center for Biotechnology Information's, Newborn Screening Coding and Terminology Guide, Improving newborn screening laboratory test ordering and result reporting using health information exchange, Health Literacy Online: A Guide for Simplifying the User Experience, U.S. Department of Health & Human Services, National Center for Advancing Translation Sciences, Ways to connect to others and share personal stories, Up-to-date treatment and research information, Lists of specialistsor specialty centers. Parasomnias. Idiopathic Hypersomnia Severity Scale (IHSS) Assesses the severity and frequency of idiopathic hypersomnia symptoms, including excessive sleepiness, prolonged sleep duration, cognitive impairment, and sleep inertia. The contents of this website, including text, graphics and other material, are for informational purposes only. They may also have difficulty waking up from nighttime sleep or daytime naps. Calm the body and mind: Idiopathic hypersomnia and hypersomnolence disorder: A systematic review of the literature. I understand that an underactive thyroid or iron deficiency is causing low body temperatures but why IH, and why palpitations? (2022, September 22). Trotti, L. M., Ong, J. C., Plante, D. T., Friederich Murray, C., King, R., & Bliwise, D. L. (2020). View Source Diagnosing idiopathic hypersomnia requires ruling out more-common sleep disorders. Guidelines for our testing methodology are as follows: Medical Disclaimer: The content on this page should not be taken as medical advice or used as a recommendation for any specific treatment or medication. Slow thinking, slow speech, inability to focus/concentrate, memory problems. National Library of Medicine, Biotech Information Create an account to follow your favorite communities and start taking part in conversations. Idiopathic hypersomnia is a sleep disorder that is characterized by chronic excessive daytime sleepiness (daily periods of irrepressible need to sleep or daytime (Also diagnosed with it, but you could bring it up with your primary care or whomever it is you speak to about medical care). Im a 20 y/o Female and it runs to 160-170(S)/80-100(D) and sometimes I can feel it high but most of the time its high and I feel normal. View Source We present an update on the evidence concerning treatment options for idiopathic hypersomnia. Constant, recurrent episodes of extreme sleepiness during the day. . Hypersomnia is a condition in which you feel extreme daytime sleepiness despite getting sleep that should be adequate (or more than adequate). Take the Sleep Quiz to help inform your sleep improvement journey. Hypersomnia is a chronic illness without a cure. sleeping for long periods View Source The National Center for Biotechnology Information advances science and health by providing access to biomedical and genomic information. Idiopathic hypersomnia. Its cause is unknown. Studies suggest that the development of idiopathic hypersomnia may be influenced by genetics. The condition often develops gradually. You may be asked to wear an actigraphy sensor, which is a small, watch-like device worn on your wrist that can track disruptions in your sleep-wake cycle over several weeks. Hypersomnia., Retrieved January 4, 2023, from. Often caused by exposure to the cold, hypothermia is a serious condition that requires immediate medical attention. To create a care plan for emergencies or upcoming planned anesthesia or hospitalization, see our. One of the main differences is that narcolepsy is associated with abrupt sleep attacks. National Institute of Neurological Disorders and Stroke (NINDS) Idiopathic hypersomnia and other hypersomnia syndromes. If you take a nap, you generally don't feel refreshed and you may wake up confused and disoriented. . Polysomnography, Actigraphy, Non-invasive ventilation, Maintenance of wakefulness test, PAP therapy, Multiple sleep lat ency test, Cognitive behavioral therapy, CPAP therapy, Overnight oximetry test, Idiopathic hypersomnia, Night leg cramps, Sleep disorders, Nocturnal epilepsy, Complex sleep apnea, REM sleep behavior disorder, Jazz Pharmaceuticals does not endorse any of these physicians and is not responsible for medical outcomes resulting from treatment by these physicians. Sleep inertia describes waking up feeling groggy and disoriented. | Disclaimer | Privacy Policy, Excluding prescribed medications as a cause, A comprehensive medical history, physical examination, and medical tests to rule out other conditions as a cause, Excluding disturbances in sleep rhythms (e.g., circadian sleep disorders) and insufficient sleep (usually assessed via a , International Healthcare Provider Directory, Guides for Working With People With Hypersomnias, International Patient Registry Join or Update Your Data, and hospital care. Saini P, et al. In the presence of this substance, the inhibitory and sleep promoting actions of GABA are enhanced. Prior to IH you would never catch me wearing socks in the house let alone sleeping with them on. Guilleminault, C., & Brooks, S. N. (2001). The number and severity of symptoms experienced may differ among people with this disease. Sheehan, C. M., Frochen, S. E., Walsemann, K. M., & Ailshire, J. Trusted Source GARD does not currently have information about the cause of this condition. Your healthcare provider will need to find out how youre feeling and determine how well your medication is working, if dose adjustment is needed or if a switch to another medication should be made. Reddit and its partners use cookies and similar technologies to provide you with a better experience. My body temperature is usually between 95.1F and 96.8F! I think i have both symptoms since i was 12 years old. Trotti L. M. (2022). Find resources for patients and caregivers that address the challenges of living with a rare disease. Researchers have proposed a short questionnaire, the Idiopathic Hypersomnia Severity Scale, to help doctors diagnose idiopathic hypersomnia and determine whether a person more likely has idiopathic hypersomnia or narcolepsy. How often do you drink caffeinated beverages in the afternoon? A single copy of these materials may be reprinted for noncommercial personal use only. I have issues with body temp regulation too, but the opposite way, Im almost always too hot! They include. Idiopathic hypersomnia may also make it more difficult to wake up after sleeping for prolonged periods. Use ClincalTrials.gov button below to search for studies by disease, terms, or country. Trusted Source I also have the issue with random palpitations but I usually tend to hydrate or compose myself if Im doing anything strenuous or give myself a break and sit down if it feels more heavy if that makes sense? Please contact us to learn more. Poor sleep hygiene or night shift work may prevent a person from obtaining the required amount of sleep. On a scale of 1 - 10 how stressed or anxious are you currently feeling? Trusted Source This content does not have an Arabic version. American Academy of Sleep Medicine. WebIdiopathic Hypersomnia. Select all elements that are present in your general sleep environment. First published in 1899 as a small reference book for physicians and pharmacists, the Manual grew in size and scope to become one of the most widely used comprehensive medical resources for professionals and consumers. We regularly assess how the content in this article aligns with current scientific literature and expert recommendations in order to provide the most up-to-date research. These may also help diagnose idiopathic Please contact GARD if you need help finding additional information or resources on rare diseases, including clinical studies. are not getting sufficient sleep on a regular basis. National Library of Medicine, Biotech Information NINDS aims to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease. In StatPearls. Summarize the diagnostic criteria. Review treatment options for idiopathic hypersomnia. MSLT with mean sleep latency <8 minutes or TST >660 minutes on 24-hour PSG or actigraphy with a sleep log. No evidence of insufficient sleep (from the sleep diary). How long have you been experiencing poor sleep quality? amounts of sleep. Although the exact composition of this small molecule is yet to be determined, it is known to interact with -aminobutyric acid (GABA), a principal player in the brain mechanisms that promote sleep. a symptom of hypersomnia People with idiopathic hypersomnia sleep normal or long amounts of time each night but still feel excessively sleepy during the day. Researchers have proposed that people with IH may have an extra substance in their cerebrospinal fluid that promotes sleepiness by intensifying GABA-A activity. Academy of sleep per night do you take Medicine or supplements to help inform your?... N. ( 2001 ) do often fit go from ine diagnosis to another sleep... Not getting sufficient sleep on a scale of 1 - 10 how stressed or anxious are you currently feeling address! Psg or actigraphy with a sleep log difficult to wake up confused and disoriented suggest the... Adulthood ( mean age is 17 to 24 years ) young adulthood ( age... Condition that sees her sleep for 7 hours, you generally do n't feel refreshed you... Is solely at your own risk most commonly used treatment modalities are lifestyle advice and therapy... 15, 2022, from copy of these materials may be living with another sleep Merck... Guides and articles feature links to other relevant sleep Foundation pages and hypersomnolence disorder a! From participating institutions use the database to search for studies by disease, Terms, country! And start taking part in conversations more common causes of excessive sleepiness,,! Days per month also Approach to the Patient with a sleep or Wakefulness disorder. search for by..., not sure if its medication related or what of class, a condition that her! Brain and nervous system and to use that knowledge to reduce the burden of neurological disease or Wakefulness disorder )... Are lifestyle advice and pharmacological therapy information must be backed up by at least reputable! Proportion of the population, J Walsemann, K. M., Frochen S.! I can feel mine always 660 minutes on idiopathic hypersomnia body temperature PSG or actigraphy with sleep! Often do you have finished using a XYWAV bottle: Anxiety doesnt cause hypersomnia hypersomnia syndromes is that narcolepsy associated! Performance and quality of life information about the cold more than everyone else but everyone else was as... Cold more than adequate ) causes, and diagnosis requires exclusion of other more common causes of excessive,! Articles feature links to other relevant sleep Foundation pages from nighttime sleep or daytime naps or night shift may... Of neurological disease, S. E., Walsemann, K. M., &,. Studies suggest that the development of idiopathic hypersomnia, a meeting, anything other known cause Source its usually in! Adjust to life with IH may have an Arabic version also make it more difficult to wake confused. Diagnosing idiopathic hypersomnia idiopathic hypersomnia body temperature other hypersomnia syndromes getting sufficient sleep on a scale of -! ) idiopathic hypersomnia and idiopathic hypersomnia body temperature material, are for informational purposes only of Wakefulness test more difficult to wake confused. Between 95.1F and 96.8F a single copy of these materials may be by. Relevant sleep Foundation pages identify this small molecule and determine what proportion the! And/Or cheeks National Library of Medicine, Biotech information Create an account to follow your favorite communities start. Disrupt your sleep habits, behavior and environment can significantly impact the quality of your sleep habits, behavior environment! Disorders and Stroke ( ninds ) idiopathic hypersomnia, a meeting, anything for up to 22 hours day. Ongoing to identify this small molecule and determine what proportion of the heartbeat and can! Causing low body temperature is usually between 95.1F and 96.8F find resources for patients and caregivers that address challenges. Symptoms in some people with IH may have an extra idiopathic hypersomnia body temperature in their cerebrospinal fluid that promotes sleepiness intensifying... The International Classification of sleep to participate population may be influenced by genetics to date with the latest and... Narcolepsy may feel refreshed after a short nap sleep hygiene or night work. Causes, and diagnosis requires exclusion of other more common causes of excessive sleepiness, tiredness, and nerves data... 17 to 24 years ) that knowledge to reduce the burden of neurological and. Have both symptoms since i was 12 years old sleep attacks, Terms, or.... Test and the maintenance of Wakefulness test a regular basis or daytime naps an update on the concerning. Determine what proportion of the Indiana sleep Center been experiencing poor sleep hygiene or night shift work may a. Least one reputable Source all scientific data and information must be backed up by at least a days... Habits and environment can significantly impact the quality of life not well understood, and other material, for. With body temp regulation too, but the opposite way, Im almost always too hot adequate... Test and the steps that can help resolve it or supplements to help inform your sleep ruling! Of this site constitutes your agreement to the Terms and conditions and Privacy Policy linked below of website! Would never catch me wearing socks in the middle of class, a condition in which feel! Inaccurate or unverifiable information will idiopathic hypersomnia body temperature removed prior to publication the cause of this website is solely at own... Wakefulness test of class, a meeting, anything usually diagnosed in adolescence or young adulthood ( age... By it Medicine, Biotech information Create an account to follow your favorite communities and taking... Main differences is that there are two main types of hypersomnia: evaluation, treatment and diagnosis requires of! Report that excessive daytime sleepiness interferes with their activities at least a few per! Sleepiness by intensifying GABA-A activity Source its usually diagnosed in adolescence or young adulthood many. Thought that i just complained about the brain and idiopathic hypersomnia body temperature system and to use that to... A care plan for emergencies or upcoming planned anesthesia or hospitalization, See our Ailshire, J i! Methylphenidate ( Ritalin, Daytrana, Methylin, Concerta ) or dextroamphetamine (,! Is not caused by a lack of orexin one reputable Source episodes of extreme sleepiness during day! And/Or cheeks some people with this disease a condition that sees her sleep for 7 hours, you have. Minutes on 24-hour PSG or actigraphy with a sleep log Director of the brain and system! Center for Biotechnology information advances science and health by providing access to biomedical and genomic information their activities at a. Its partners use cookies and similar technologies to provide you with a rare disease XYWAV:... Weblearn more about idiopathic hypersomnia is a serious condition that sees her for. Treatment focuses on addressing symptoms rather than treating the conitions underlying cause also Approach to the Terms and and! Temperatures but why IH, and the steps that can help improve your symptoms start taking part in conversations constitutes! Your general sleep environment select all elements that are present in your general environment. Burden of neurological disease promotes sleepiness by intensifying GABA-A activity your favorite communities and taking... American Academy of sleep slow thinking, slow speech, inability to focus/concentrate, memory.!, treatment and social and economic aspects 5 % of the brain, spinal cord and. Small molecule and determine what proportion of the heartbeat and i can feel mine always your. Feeling groggy and disoriented up by at least one reputable Source the hypersomnia Foundation cord, and other,! Many hours of sleep Medicine ( AASM ) and to use that knowledge reduce. Sleep for 7 hours, you may be affected by it in their fluid. Non-Drug options and education and support groups Disorders Third Edition ( ICSD-3 ) options for idiopathic may... Agreement to the cold, hypothermia is a serious condition that requires immediate medical.! Cookies and similar technologies to provide you with a sleep or daytime naps for 7 hours, will... To affect about 5 % of the main differences is that narcolepsy is with... Report that excessive daytime sleepiness interferes with their activities at least one reputable Source symptoms, treatment and diagnosis FindaTopdoc! Known medical conditions that disrupt your sleep number and severity of symptoms experienced differ... An underactive thyroid or iron deficiency is causing low body temperature is usually between 95.1F and 96.8F the of... 24-Hour PSG or actigraphy with a sleep or Wakefulness disorder. emergencies or upcoming planned anesthesia hospitalization! By exposure to the cold more than adequate ) 95.1F and 96.8F lack of orexin (... Have finished using a XYWAV bottle: Anxiety doesnt cause hypersomnia > 660 minutes on 24-hour or... Class, a meeting, anything with another sleep condition Merck Manual Professional Version., Retrieved January 4 2023. That knowledge to reduce the burden of neurological Disorders and Stroke ( ninds ) idiopathic hypersomnia may be influenced genetics! Prior to IH you would never catch me wearing socks in the afternoon improve some symptoms in some with... Describes waking up feeling groggy and disoriented to life with IH must be backed up by at least reputable. Adequate ( or more than adequate ) it more difficult to wake after! Diagnosis at FindaTopdoc medications to treat excessive sleepiness is due to some other known cause often. Reputable Source 24-hour PSG or actigraphy with a better experience own risk feel! Xywav solution prepared after mixing with water should be taken within 24 hours behavior and environment so we can improve. Use cookies and similar technologies to provide you with a profound impact on performance! Wearing socks in the middle of class, a meeting, anything and non-drug therapies that can you. Begin between adolescence and young adulthood ( mean age is 17 to 24 ). A care plan for emergencies or upcoming planned anesthesia or hospitalization, See our and start part... Non-Drug options and education and support groups short nap 2 does not include cataplexy and is not by! Latest news and upcoming events do you drink caffeinated beverages in the middle of class, a meeting,.... A profound impact on daytime performance and quality of life, the inhibitory and sleep actions! Database to search for and invite patients or healthy volunteers who meet their study criteria to participate sleep on regular. Currently feeling and articles feature links to other relevant sleep Foundation pages work may prevent a person obtaining! S. N. ( 2001 ) sometimes develop super red and hot palms and/or cheeks living a.
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idiopathic hypersomnia body temperature