Xyrem cataplexy8/16/2023 It is also important to consider how IH and its treatment may affect finances, work, school, self-care, etc. For example, behavioral approaches, including cognitive behavioral therapy ( CBT), can be helpful to learn coping skills. In addition, some PWIH have found that nonpharmacologic treatments can be beneficial. (Get it free HERE.) It is also important to consider how hypersomnias and their treatment may affect anesthesia/hospitalization, parenthood & pregnancy, etc. The Idiopathic Hypersomnia Severity Scale (IHSS) is a validated tool that can help to measure treatment response. “The goals of therapy are to obtain ‘normal’ alertness during conventional waking hours or to maximize alertness at important times of the day (eg, during work, school, or while driving)” (see UpToDate’s Treatment of Narcolepsy in Adults 2022, which also provides further details about treatment algorithms, dosing, side effects, etc., much of which is applicable to treating IH). Few person(s) with hypersomnias ( PWH), including both narcolepsy and IH, ever feel fully alert despite optimal therapy. Medications may sometimes be used in combination, especially in people who are treatment-resistant or have more severe symptoms. In some cases, medicines may stop working over time and/or have bothersome side effects. Response to medications can vary, and some people do not achieve adequate control of symptoms in spite of medications. Currently, all available treatments are symptomatic, as there are no disease-modifying therapies yet available for either disorder. However, researchers continue to test medications approved for other disorders, as well as novel treatments, for IH and narcolepsy. Many of these off-label treatments have not been studied extensively in person(s) with IH ( PWIH). There are also several treatments approved by the FDA (and similar international agencies) for use in narcolepsy and other sleep disorders, and it is common practice to use medications that are known to be effective in people with narcolepsy and other neurologic/sleep disorders to treat the sleepiness associated with IH (this is called “ off-label” use). FDA-approved treatment for idiopathic hypersomnia ( IH). In August 2021, lower-sodium oxybate (Xywav) became the first U.S. International Patient Registry – Join or Update Your Data.Guides for Working With People With Hypersomnias.International Healthcare Provider Directory.
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