Your condition is very rare

DEAR DR. ROACH: I was diagnosed with a sleep disorder called “idiopathic hypersomnia.” My symptoms are similar to narcolepsy: I fall asleep without warning. However, I can be woken. I fall asleep anywhere from two to 10 times per day. I have tried many medications, and nothing has worked at all. I have been told that nothing can help me with this rare sleep disorder. Do you have any suggestions?

ANSWER: Narcolepsy is an unusual condition, where people have sleepiness during the day and usually have cataplexy (sudden weakness brought on by emotions, such as after laughing), hallucinations at the time of falling asleep and paralysis for a few minutes on waking. What you have been diagnosed with, idiopathic hypersomnia, is much rarer; I have never seen a case. People with your condition have daytime sleepiness but don’t have the cataplexy, although many people are confused upon being awakened. From what I have read, medications for narcolepsy often are tried (such as modafinil). From your description, it’s likely that you have tried these kinds of medicines.

I did read about flumazenil, an intravenous medication that is used for overdose of a specific type of sedatives, being formulated as a pill and used in idiopathic hypersomnia, so you might ask your doctor about getting into a study on this medication.

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