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Excessive Sleep vs Narcolepsy. Failed Nuvigil, Biaxin Treatment...?

by Annemarie Riether
(Atlanta, GA)

My son, 19, freshman in college, had to take medical withdraw because of a sleep disorder. He was diagnosed with narcolepsy 2 years ago based on MSLT. Without cataplexy.


Meds have not worked, cannot wake up in AM, falls asleep during day, behind wheel etc. Falls into REM immediately.

Was seen at research center in Atlanta, placed on Biaxin, (to test theory that this antibiotic is a GABA Antagonist), and will help excessive daytime sleepiness. Not working.

CSF for hypocretin and DNA testing for HLA DQ 131 *0602 pending. (will take 2 months).

Meanwhile son just called me and said he had to stop car to sleep because he is falling asleep behind wheel despite treatment with biaxin.

Biaxin is not working. In the past he was on Nuvigil and stimulants without success.

Help. Don't know if he can return to school jan 9th. Should he take the year off? Should he come to Stanford?

Please advise ASAP. Also , was wondering if the HLA marker for narcolepsy is a similar genome as HLA for Multiple Sclerosis (which I)

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