How is Idiopathic Hypersomnia Treated?

There are currently no treatment options in Australia approved for Idiopathic Hypersomnia. Medications approved to treat Narcolepsy including stimulants (dexamphetamine and less commonly methylphenidate) and wake-promoting medications (Modafinil) are prescribed to patients with Idiopathic Hypersomnia to counter daytime sleepiness however there are no medications that assist with the extreme difficulty waking up or the sleep drunkenness that people, particularly those with Polysymptomatic Hypersomnia find so difficult to manage.

Although stimulants can sometimes be effective in reducing sleepiness in the short to medium term, they are rarely effective long-term, as patients can become resistant to their effects. In addition, there are unpleasant potential side effects, which can include sleep deprivation, headaches, heart problems & anxiety. Also the mechanism of action of non-stimulant medications such as modafinil is not completely known. It appears to influence brain chemistry that increases wakefulness however there is no research on the effects of long term use. It is also important to note Modafinil can interact with hormonal birth control to make it less effective (refer below), can result in a life-threatening rash, and is sometimes limited by associated headache & nausea.

For many people using stimulants & wake promoting medications the perfect analogy is a quote from Dr Jenkins from Emory University, “it is like flooring the gas pedal in a car with the park brake engaged". It would seem that these people need treatment options that actually turn sleep off rather than simply forcing them awake.

PBS - Modafinil    PBS - Dexamphetamine 

Important information for women using Modafinil

There has been a lot of concern about the effectiveness of the birth control pill and modafinil. It seems that some GPs are unsure about the effects and are giving out conflicting information, not only to what people may have read but what they are told by specialists.

Narcolepsy UK decided to get a definitive answer and contacted not only the manufacturers but also The Faculty of Sexual & Reproductive Healthcare (part of the Royal College of Obstetricians and Gynaecologists).

The answers are clear. Modafinil may reduce the effectiveness of several types of hormonal contraceptives and not just oestrogen-based ones. Read about it here.


From Narcolepsy UK

Novel and Emerging Treatments.

From our news post Emory University's “mystery somnogen”

 “Recent research by Emory has found in a test tube model of the disease, that the drugs flumazenil and Clarithromycin do in fact return the function of the GABA system to normal. Flumazenil is usually used in cases of overdose of benzodiazepines, a widely used class of anesthetics and sedatives such as diazepam (Valium) and zolpidem (Ambien). It is also used to reverse the effects anesthesia. Clarithromycin is an ordinary antibiotic. They have not explained why this particular antibiotic has been found to reverse the effects of the sedation found in some patients with IH however it is important to note that the positive effect of clarithromycin is secondary to a benzodiazepine antagonist-like effect, not its antibiotic effects, and treatment must be maintained.”