Iowa Sleep Blog

Idiopathic Hypersomnia

Tuesday, July 26, 2016

In my clinical work as a sleep specialist, I am confronted with tired/sleepy patients (hypersomnia patients) that do not have a diagnosis of Sleep Apnea or any problem with Sleep disordered breathing in general. The evaluation of the patient, utilizing an overnight sleep study and subsequent nap tests (MSLT) - shows no evidence of Narcolepsy but exceptional fatigue and tiredness that we clinically characterize as Idiopathic Hypersomnia. Point of note – both Narcolepsy and Idiopathic Hypersomnia patients are tired and sleepy but the disorders are DISTINCLY different. Narcolepsy patients struggle with fragmented sleep and insomnia (the inability to fall asleep or stay asleep)– while Idiopathic Hypersomnia sleep very well with no sleep fragmentation or issues with insomnia. Narcoleptic patients will clearly describe naps as “refreshing” while Idiopathic Hypersomnia patients feel “unrefreshed”.

The diagnosis of Idiopathic Hypersomnia is especially challenging and the treatment can be less than ideal for a number of patients. Generally, the level of fatigue is improved but for some, “it never totally goes away”. Clinically, for Idiopathic Hypersomnia patients – we are left with managing their fatigue with stimulant medications. Sometimes these medications work exceptionally well, sometimes, there are untoward side effects to these medications. An exciting development is taking place with more research on hypersomnia treatment OUTSIDE the classical consideration of stimulant medications. Researchers from Emory University have found that a common medication used to treat benzodiazepine overdoses (think about medications like Valium or Ativan) – have shown exceptional promise in the treatment of fatigue associated with Idiopathic Hypersomnia. The medication, called Flumazenil is currently in Phase III clinical trials and could offer a clear alternative for those patients that are incompletely treated with stimulants. Along these lines, Emory sleep researchers have also observed that a common antibiotic – Clarithromycin –has been shown in clinical trials to improved sleepiness and fatigue in Idiopathic Hypersomnia patients. The mechanism of action for Clarithromycin (a common antibiotic) is thought to be explained by its affinity to act much like Flumazenil.

These developments offer hope for an alternative that could bring to bear another intervention to offer Idiopathic Hypersomnia patients respite from their tiredness and fatigue. The FDA has not cleared these medications for labeled use in the treatment of fatigue in Idipathic Hypersomnia yet but I hold out hope in the coming year a medication will be brought to market. For all the patients out there suffering with Idiopathic Hypersomnia – stay tuned . . .

If you do notice you are having trouble staying awake, we encourage you check out some of the resources on our site to learn more. If the daytime sleepiness persists, set up an appointment with one of our doctors at 800.226.6084 or send us a question through our easy, online form.

Written by


Dr. Stephen Grant, MD, Board Certified Sleep Specialist