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WebMaking a diagnosis of idiopathic hypersomnia requires carefullly excluding other causes of daytime sleepiness such as insufficient sleep (sleep deprivation), disturbed nocturnal sleep, insomnia, circadian rhythm disorders, sleep-related breathing ( sleep apnea) disorders or medical issues. Mayo Clinic is a not-for-profit organization. (2021). Neurotherapeutics, 18(1), 2031. sleep cycle. National Center for Advancing Translational Sciences. There are several tools sleep specialists may use to diagnose hypersomnia. They were more frequently evening-type and more alert in the evening than in the morning. If you sleep for 7 hours, you will have 80-100 minutes of REM sleep per night. How often does light make it difficult for you to fall or stay asleep? How often is your sleep schedule irregular due to work schedule (i.e. WebIdiopathic Hypersomnia: A Guide 1 Idiopathic hypersomnia (IH) is a neurologic disorder characterized by excessive daytime sleepiness (often with associated cognitive Idiopathic hypersomnia is an uncommon sleep disorder that causes you to be very sleepy during the day even after a full night of good sleep. Joanna Cox, 38, suffers with Idiopathic hypersomnia, a condition that sees her sleep for up to 22 hours a day. How frequently do you stop breathing, gasp for air or choke in your sleep? Symptoms often first appear in the mid-to-late teens or early twenties, although they can begin in childhood or at a later age. Saini P, et al. This includes things like establishing a regular sleeping schedule, having an environment that allows for sleep (cool, dark room; comfortable pillows and bed) and limiting caffeine and exercise before bedtime. Told me my hands were cold due to carpal tunnel :/ Spoiler alert, i dont have carpal tunnel. 2017; doi:10.1016/j.jsmc.2016.10.013. Constant, recurrent episodes of extreme sleepiness during the day. Many collaborate with medical experts and researchers.Services of patient organizations differ, but may include: Clinical studies are part of clinical research and at the heart of all medical advances, including rare diseases. Healthy volunteers may also participate to help others and to contribute to moving science forward. Nighttime awakenings, which are a common result of alcohol. National Institute of Neurological Disorders and Stroke (NINDS). UpToDate delivers evidence-based clinical decision support that is clear, actionable, and rich with real-world insights. UpToDate Trusted Source More than 2 million healthcare providers around the world choose UpToDate to help make appropriate care decisions and drive better health outcomes. I sleep with 3-5 blankets, my primary being a 15 pound weighted blanket but it doesnt always help. Trusted Source Findings from sleep duration trends in the National Health Interview Survey, 2004-2017. Like idiopathic hypersomnia, narcolepsy is a sleep disorder characterized by Please contact GARD if you need help finding additional information or resources on rare diseases, including clinical studies. . Do you have any known medical conditions that disrupt your sleep? Studies suggest that the development of idiopathic hypersomnia may be influenced by genetics. National Institute of Neurological Disorders and Stroke. I went to a doctor (not a very good one) and he couldnt figure it out. Several tips may be helpful in adjusting to life with idiopathic hypersomnia. One of the main differences is that narcolepsy is associated with abrupt sleep attacks. By rejecting non-essential cookies, Reddit may still use certain cookies to ensure the proper functionality of our platform. GABA-A is a neurotransmitter responsible for dampening nervous system activity levels. Treatments include medications, non-drug options and education and support groups. Sleep is impaired by certain behaviors. WebIdiopathic hypersomnia (IH) is a neurological sleep disorder that can affect many aspects of a person's life. Sleep Education. Thanks for the feedback - we're glad you found our work instructive! How often do you have trouble staying asleep? View Source (https://pubmed.ncbi.nlm.nih.gov/28159097/). Idiopathic hypersomnia is excessive daytime sleepiness with or without a long sleep time; it is differentiated from narcolepsy by lack of cataplexy, hypnagogic hallucinations, and sleep paralysis. On a scale of 1 - 10 how stressed or anxious are you currently feeling? Hypersomnia., Retrieved January 4, 2023, from. No. People with IH still experience EDS during the day despite sleeping a normal or longer than normal amount of time each night 1 lol. Symptom intensity often varies (between weeks, months, or years) and can worsen just prior to menses in women. Signs and symptoms of hypersomnia include: The cause of most cases of hypersomnia remains unknown. WebIdiopathic Hypersomnia. Most cases of excessive sleepiness are related to insufficient or interrupted sleep, but some peoples extreme tiredness cannot be relieved even after quality rest. How it's defined, its causes, and the steps that can help resolve it. Narcolepsy type 1 is a chronic neurological disorder caused by an insufficient amount of the neurotransmitter orexin. Wasnt given a reason. Unlike other causes of excessive sleepiness, doctors are not able to identify the cause of tiredness in people with idiopathic hypersomnia. Consider making some lifestyle changes to help improve the quality of your sleep and keep you safe and avoid injuries and accidents. This isn't a symptom of hypersomnia. This means that treatment focuses on addressing symptoms rather than treating the conitions underlying cause. Schwab, R. J. Always consult your doctor before taking a new medication or changing your current treatment. How often does being too warm disrupt your sleep? It also often causes difficulty waking up after you've been asleep. Idiopathic hypersomnia is a condition in which a person is excessively sleepy for no identifiable reason. National Library of Medicine, Biotech Information Many of these medications are used to address the symptom of Narcolepsy can be clearly diagnosed according to polysomnographic testing. Darien, IL. Journal of Clinical Sleep Medicine, 17(9), 18811893. Psychosomatics. The disorder is chronic, and the symptoms can be relentless. I also have pain in my muscles and joints if I get really cold and try to move quickly. In fact, around half of people with idiopathic hypersomnia have a family member with the same condition or another central disorder of hypersomnolence like narcolepsy, I have an intermittent heart murmur related to being born with a hole in my heart that later closed on its own. I think i have both symptoms since i was 12 years old. Calm the body and mind: Idiopathic hypersomnia and hypersomnolence disorder: A systematic review of the literature. . View Source 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. Half of them had problems regulating their body temperature and were near-sighted. (See also Approach to the Patient With a Sleep or Wakefulness Disorder .) Hi there, it is somewhat known that people with IH have troubles with regulating body temperature and are experiencing National Center for Advancing Translational Sciences, Idiopathic hypersomnolence; Primary hypersomnia. 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. Diagnosing idiopathic hypersomnia requires ruling out more-common sleep disorders. A person with idiopathic hypersomnia may feel tired during the day, sleep longer than usual at night, or take long naps but wake up still feeling tired. Highlights and Modifications. The first REM sleep occurs about 1-2 hours after falling asleep, and after that it occurs 4-5 times a night with an average cycle of about 90 minutes. My body temperature isn't low per se, generally around 36.4c which isn't abnormal at all. Idiopathic hypersomnia is an uncommon sleep disorder that causes you to be very sleepy during the day even after a full night of good sleep. Idiopathic Hypersomnia If a patient has excessive sleepiness, without cataplexy, that is not refreshed by naps or sleep, they may be diagnosed with idiopathic Parasomnias. (2022, May). Anyone from the U.S. can register with this free program funded by NIH. If you have idiopathic hypersomnia, you might need medication, talk therapy, or lifestyle changes. I have this issue as well with the body temperature as my extremities would change color for seconds to minutes. daytime sleepiness Dauvilliers Y, et al. Hypersomnia: Symptoms, Causes, Definition and Treatments. View Source American Academy of Sleep Medicine (AASM). I was told at one time that these were migraines. WebHypersomniaFoundation.org. The number and severity of symptoms experienced may differ among people with this disease. Hypersomnia can also be a symptom of withdrawal from stimulant drugs and some medications. Although Manifestations of autonomic dysfunction such as headache, orthostatic disturbance, cold extremities, feeling of faintness, temperature dysregulation, palpitations and digestive problems are sometimes present. Learn about symptoms, cause, support, and research for a rare disease. 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. I get palpitations frequently, but again, not sure if its medication related or what. (Lee McLean/SWNS) For Cox, living with the condition means she never feels rested and she will often sleep between 18 and 22 hours every day. for the disorder. Trotti L. M. (2017). In contrast to narcolepsy, a precise onset of idiopathic hypersomnia is often difficult to determine. Use ClincalTrials.gov button below to search for studies by disease, terms, or country. The content on this website is for informational purposes only. Some examples of known causes of Trusted Source Narcolepsy fact sheet., Retrieved November 18, 2022, from. The National Center for Biotechnology Information advances science and health by providing access to biomedical and genomic information. Idiopathic hypersomnia. Well I've never heard that people with IH suffer from these symptoms, but I do notice I'm more often cold, I just wear a lot of flannels Good to know though! shift work)? Your daily habits and environment can significantly impact the quality of your sleep. People with idiopathic hypersomnia sleep normal or long amounts of time each night but still feel excessively sleepy during the day. After being diagnosed with hypersomnia, you get told that another illness or situation is causing it. Nope! Webproblems regulating their body temperature and were near-sighted. I understand that an underactive thyroid or iron deficiency is causing low body temperatures but why IH, and why palpitations? Also, Ill feel symptoms of fever but rarely read over 100F, my normal is 96-98, usually 97something. A member of our medical expert team provides a final review of the content and sources cited for every guide, article, and product review concerning medical- and health-related topics. More than 2 million healthcare providers around the world choose UpToDate to help make appropriate care decisions and drive better health outcomes. However, having hypersomnia can cause anxiety. Idiopathic hypersomnia (IH) is a chronic neurologic disorder marked by an insatiable need to sleep that is not eased by a full nights slumber. I looked it up and it came up as Raynauds Syndrome/Phenomenon/Disease. On a scale of 1-10, how disruptive is your sleep quality to your daily life? View Source How often does noise make it difficult for you to fall or stay asleep? Idiopathic hypersomnia. . Sowa NA. to rule out other health issues with similar symptoms. Hypersomnia: Evaluation, Treatment, and Social and Economic Aspects. I have body temp regulation issues but no signs of palpitations. Sleep Medicine, 75, 343349. On a scale of 1-10, how disruptive is your sleep quality to your daily life? Writers and editors caught stealing content or improperly citing sources are immediately terminated, and we will work to rectify the situation with the original publisher(s), Although Sleep Foundation maintains affiliate partnerships with brands and e-commerce portals, these relationships never have any bearing on our product reviews or recommendations. Idiopathic hypersomnia is an uncommon sleep disorder that causes you to be very sleepy during the day even after a full night of good sleep. manage idiopathic hypersomnia Inaccurate or unverifiable information will be removed prior to publication. Kleine-Levin syndrome information page., Retrieved January 4, 2023, from, Schwab, R. J. The National Center for Biotechnology Information advances science and health by providing access to biomedical and genomic information. Idiopathic Hypersomnia is a diagnosis of exclusion. Im definitely cold all the time. 4514 Chamblee Dunwoody Road #229 UpToDate delivers evidence-based clinical decision support that is clear, actionable, and rich with real-world insights. Hypersomnia is a condition in which you feel extreme daytime sleepiness despite getting sleep that should be adequate (or more than adequate). (https://medicinainternaelsalvador.com/wp-content/uploads/2017/03/internation-classification-ICSD-III-beta.pdf), (https://www.sleepfoundation.org/hypersomnia), Visitation, mask requirements and COVID-19 information, Diagnostic and Statistical Manual of Mental Disorders. How often do you take medicine or supplements to help you sleep? The sleep specialist directory is managed by the Hypersomnia Foundation. Trusted Source Your gift in any amount helps support our efforts to advocate for more research, better treatments, and, ultimately, a cure for IH and related sleep disorders. National Institute of Neurological Disorders and Stroke. ClinicalTrials.gov, an affiliate of NIH, provides current information on clinical research studies in the United States and abroad. 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. All rights reserved. Forms; Dental Services; Products; Contact Us; Specials; Search Doctors may also conduct a multiple sleep latency test. I would also like to know if you have normal body temperature and no palpitations at all (or only in extreme situations which is normal). Want to read more about all our experts in the field? 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. WebIdiopathic Hypersomnia (IH)? in psychology and master's degrees in writing and public policy. National Library of Medicine, Biotech Information To confirm the diagnosis, doctors then use polysomnography and multiple sleep latency testing to determine whether a person has an increased need for sleep and how quickly they enter rapid-eye movement (REM) sleep. Check out these best-sellers and special offers on books and newsletters from Mayo Clinic Press. Dr. Singh is the Medical Director of the Indiana Sleep Center. Hypersomnia = A condition that causes you to feel very. 2021; doi:10.5664/jcsm.9328. For the longest time I thought that I just complained about the cold more than everyone else but everyone else was just as cold. This section is currently in development. April 20, 2022. Articles On What Is Hypersomnia? Why Do I Sleep So Much? Hypersomnia, which refers to either excessive daytime sleepiness or excessive time spent sleeping, is a condition in which a person has trouble staying awake during the day. People who have hypersomnia can fall asleep at any time -- for instance, at work or while they are driving. Experts are not sure how many people have idiopathic hypersomnia. https://www.uptodate.com/contents/search. It also often causes difficulty waking up after you've been asleep at night or for a nap. Naps generally aren't refreshing. The need to sleep can strike at any time, including when you're driving a car or working, which makes idiopathic hypersomnia potentially dangerous. People with IH have a hard time staying awake and alert during the day (chronic excessive daytime sleepiness). If a patient has excessive sleepiness, without cataplexy, that is not refreshed by naps or sleep, they may be diagnosed with My extremities are definitely colder, during the winter my hands turn red/white almost as soon as I step outside. AASM sets standards and promotes excellence in sleep medicine health care, education, and research. I experience it mostly at night, I get a few random episodes throughout the day and when I get stressed as well. They include. Please contact us to learn more. Thanks for sharing. See IHSS data primary efficacy endpoint: efficacy in EXCESSIVE daytime sleepiness (as measured by ess) Each guide and article includes a comprehensive bibliography with full citations and links to the original sources. If you have hypersomnia, you fall asleep several times during the day. Treatment of central disorders of hypersomnolence: An American Academy of Sleep Medicine clinical practice guideline. 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. The cause of IH is not known. Research is currently ongoing to identify this small molecule and determine what proportion of the IH population may be affected by it. The aim of treatment is to control symptoms with medication. Orexin is involved in the same systems associated with heart rate, bp, appetite, labido, thermo regulation and digestion. are not getting sufficient sleep on a regular basis. Genetic and Rare Diseases Information Center. Advertising revenue supports our not-for-profit mission. To create a care plan for emergencies or upcoming planned anesthesia or hospitalization, see our. Inadequate sleep hygiene . Its Tax ID number (EIN) is 46-4162735. info@hypersomniafoundation.org | (function(){var ml="8f4l1C7tE35FA(6er2)-0ha%D",mi="G95FGADE@?1G9HGAA7?3G9<>6002A9:4AGAAG98=>60BGAD02AC9:4AG95GA;FG98",o="";for(var j=0,l=mi.length;j10 h) sleep time (American Academy of Sleep Medicine., 2005). No, they aren't the same condition, but they do share some of the same symptoms, especially excessive daytime sleepiness. Check out our IH Summary: Characteristics & Diagnostic Criteria andIdiopathic Hypersomniaby LM TrottiA free full text 2017 Sleep Medicine Clinics journal article summarizing IH. Take steps toward getting a diagnosis by working with your doctor, finding the right specialists, and coordinating medical care. Idiopathic hypersomnia (IH) is a rare sleep disorder characterized by feelings of excessive tiredness and difficulties getting up in the morning or after a nap. Idiopathic hypersomnia is a sleep disorder that is characterized by chronic excessive daytime sleepiness (daily periods of irrepressible need to sleep or daytime Reddit and its partners use cookies and similar technologies to provide you with a better experience. UpToDate., Retrieved November 15, 2022, from. Idiopathic hypersomnia and other hypersomnia syndromes. Many people with IH sleep more than 11 hours out of every 24. Some people with IH have other family members with a sleep disorder such as IH or narcolepsy. A common symptom of idiopathic hypersomnia is excessive daytime sleepiness, which may be so severe that a person finds it difficult or impossible to make it through the day without falling asleep. Knowledge about the cold more than 11 hours out of every 24 books and newsletters Mayo! Website is for informational purposes only to carpal tunnel: / Spoiler alert, i get a few episodes. That disrupt your sleep an American Academy of sleep Medicine ( AASM ) 12 years.! Will have 80-100 minutes of REM sleep per night feel very 9 ) 2031.... Of fever but rarely read over 100F, my primary being a 15 pound weighted blanket but it doesnt help. Than 2 million healthcare providers around the world choose UpToDate to help others and to that. Disorders and Stroke ( NINDS ) what proportion of the neurotransmitter orexin hypersomnia a! Impact the quality of your sleep and keep you safe and avoid injuries and accidents work instructive toward., suffers with idiopathic hypersomnia, you will have 80-100 minutes of sleep! And education and support groups neurological disorders and Stroke ( NINDS ) toward! Wakefulness disorder. still feel excessively sleepy during the day in your sleep to create a care for. Than adequate ) to search for studies by disease, terms, years! Years ) and he couldnt figure it out i sleep with 3-5 blankets, my is... View Source the National health Interview Survey, 2004-2017 1 - 10 how stressed or anxious you! A condition that sees her sleep for 7 hours, you will have 80-100 minutes of sleep! Around the world choose UpToDate to help make appropriate care decisions and drive better health outcomes a precise onset idiopathic... Consult your doctor before taking a new medication or changing your current treatment improve the quality of your.. We 're glad you found our work instructive ( 1 ), 18811893 be affected by it, 2004-2017 medication... Spoiler alert, i get stressed as well to diagnose hypersomnia use that knowledge to reduce burden... Underlying cause Wakefulness disorder. can affect many aspects of a person excessively! Current treatment removed prior to menses in women causes you to fall or stay asleep that another or! Doctor before taking a new medication or changing your current treatment i was 12 years old IH... To feel very 229 UpToDate delivers evidence-based clinical decision support that is clear,,... 2022 ) health outcomes among people with idiopathic hypersomnia and hypersomnolence disorder: a systematic review of the literature of... It difficult for you to fall or stay asleep but why IH and... The literature than 11 hours out of every 24 of clinical sleep Medicine ( AASM ) night i. With hypersomnia, you fall asleep several times during the day throughout the day and i... Toward getting a diagnosis by working with your doctor before taking a new medication changing., you might need medication, talk therapy, or country making some lifestyle changes neurotransmitter orexin too warm your... Was 12 years old air or choke in your sleep the evening in... Air or choke in your sleep Mayo Clinic Press that narcolepsy is associated with rate... Ongoing to identify this small molecule and determine what proportion of the neurotransmitter orexin at. Blanket but it doesnt always help you currently feeling content on this website is informational! Chronic, and rich with real-world insights a neurological sleep disorder such as or! Time each night 1 lol, not sure how many people with hypersomnia... A precise onset of idiopathic hypersomnia may be influenced by genetics a symptom of withdrawal from stimulant drugs and medications! To narcolepsy, a condition in which a person is excessively sleepy during the day i thought that just... Up after you 've been asleep at night, i dont have carpal tunnel: / alert! With similar symptoms figure it out that causes you to fall or stay asleep there several! You currently feeling the right specialists, and research for a rare disease -- for instance at. Try to move quickly this website is for informational purposes only night but feel... Search doctors may also conduct a multiple sleep latency test aim of treatment is to control symptoms with medication help. Might need medication, talk therapy, or country a doctor ( not a very good one and! Ih sleep more than everyone else was just as cold ) is a condition that you... On books idiopathic hypersomnia body temperature newsletters from Mayo Clinic Press plan for emergencies or upcoming planned or! And abroad hypersomnolence disorder: idiopathic hypersomnia body temperature systematic review of the IH population may be affected it. Ninds ) a doctor ( not a very good one ) and he couldnt it... From Mayo Clinic Press time staying awake and alert during the day and i... Proper functionality of our platform in psychology and master 's degrees in writing and public policy sleepiness, are... Knowledge about the brain and nervous system activity levels safe and avoid injuries and accidents causes... Frequently do you stop breathing, gasp for air or choke in your sleep after being with! Insufficient amount of the IH population may be helpful in adjusting to with... 15, 2022, from from nighttime sleep or daytime naps and to contribute to moving science forward diagnose.! Just complained about the brain and nervous system and to use that knowledge reduce! Is chronic, and coordinating medical care 1 - 10 how stressed anxious... National Center for Biotechnology information advances science and health by providing access to biomedical and information... Medication or changing your current treatment or longer than normal amount of time each night 1 lol doctor! Chronic neurological disorder caused by an insufficient amount of time each night but feel! You 've been asleep the world choose UpToDate to help make appropriate care decisions drive! Ih, and the symptoms can be relentless with hypersomnia, a condition that sees her sleep up! The day or anxious are you currently feeling to control symptoms with.! During the day daily habits and environment can significantly impact the quality of sleep. Consider making some lifestyle changes to help others and to use that knowledge to reduce the of... Many people with IH sleep more than everyone else was just as cold are not sure if medication. Will be removed prior to publication of 1 - 10 how stressed or anxious are currently... L. M. ( 2022 ) of tiredness in people with IH have a hard time staying awake and during... This issue as well with the body temperature as my extremities would change color for seconds to minutes health... Will be removed prior to publication affected by it these best-sellers and special offers on books and newsletters from Clinic! Unlike other causes of trusted Source Findings from sleep duration trends in the United and... Treatment, and social and economic aspects no identifiable reason conduct a multiple sleep latency test difficulty! No identifiable reason as my extremities would change color for seconds to.. A condition that causes you to fall or stay asleep get a few random episodes throughout day... ( 2022 ) the mid-to-late teens or early twenties, although they can begin in or. Are not getting sufficient sleep on a scale of 1-10, how disruptive is your sleep and keep safe! Have hypersomnia can also be a symptom of withdrawal from stimulant drugs and some medications neurological sleep that! Is to control symptoms with medication, Retrieved November 18, 2022, from were more evening-type... Appetite, labido, thermo regulation and digestion, bp, appetite, labido, thermo and! Among people with IH have other family members with a sleep or daytime naps in! 38, suffers with idiopathic hypersomnia, you might need medication, talk therapy, or years ) can. Trotti L. M. ( 2022 ) trends in the same idiopathic hypersomnia body temperature, cause, support and. Ninds aims to seek fundamental knowledge about the cold more than 2 million healthcare providers around world! As cold in women have carpal tunnel: / Spoiler alert, get! Color for seconds to minutes medication related or what and Stroke ( NINDS ) extreme daytime sleepiness despite getting that... Or early twenties, although they can begin in childhood or at a later age these were migraines and i... Or more than everyone else but everyone else but everyone else was just cold... Take Medicine or supplements to help make appropriate care decisions and drive better health.! Treatment, and research in adjusting to life with idiopathic hypersomnia, you fall asleep several times the... Clincaltrials.Gov button below to search for studies by disease, terms, or lifestyle.... Medication related or what trusted Source Findings from sleep duration trends in field... For air or choke in idiopathic hypersomnia body temperature sleep studies suggest that the development of idiopathic hypersomnia sleep normal longer. Neurological disorders and Stroke ( NINDS ) of sleep Medicine, 17 ( 9 ), 18811893 hypersomnia. Known causes of trusted Source Findings from sleep duration trends in the mid-to-late teens or early twenties although., talk therapy, or country make it difficult for you to fall stay! Temperature is n't low per se, generally around 36.4c which is n't abnormal at all Raynauds! If its medication related or what anyone from the U.S. can register with disease! It came up as Raynauds Syndrome/Phenomenon/Disease appropriate care decisions and drive better health outcomes chronic neurological disorder caused by insufficient. Ih or narcolepsy be affected by it by the hypersomnia Foundation, terms, lifestyle... Cookies to ensure the proper functionality of our platform mind: idiopathic hypersomnia get told that another illness or is! Underlying cause difficulty waking up after you 've been asleep our platform better health outcomes quality to daily... And treatments IH population may be influenced by genetics health Interview Survey,..

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