Dealing with narcolepsy: I can't stay awake


Patients Sleep disorders

1 reply


Topic of the discussion

Posted on

even as a child i slept walk talk n perform complex activities. i could sleep in class and have perfect recall of material without any study. as an adult this grew tó include going to work and driving. i cannot remember not having full control during dreams and dreams so vivid that i have developed complex tests to determine which staye i am in. they say i have mild apnea and no amount of stimulants can keep me awake. sunosi helped for a few months but im now back to 16 or more hours of sleep even with profuse caffeine amd adderall used in combo. my wife claims i rarely snore. even when awake i periodically stop breathing. not because of obstruction, but when i get light headed i consciously have to decide to start breathing. i finally caved in and got a cpap. not only is it either nosebleed dry or drowning me with water droplets but i wake up gasping for air on it never without it. i feel like i have been run pver by a truck on it. the seal is good and im wearing the only mask i can tolerate. even so it irritates my nose so bad.

i have never had trouble falling and staying asleep pretty much on demand. i have often bragged i could sleep thru a parade on a sharp rock. and have slept in the cold in meat freezers in parkinglots w no bedding sotting and even standing joints locked agàinst a wall. and this has even occured in medical facilities under observation. clearly something quite beyond the norm is at play. i have a 134 iq and write artificial intelligence applications. using empirical evidence and logic would appear to be my strong suite. but im 48 and now completely unable to manage my own care. i can only imagine that permanent institutionalization is next.

i slept 14 hrs straight last night waking only to pee. i have taken 800 mg of caffeine 30 mg adderall and 150 mg sunosi over an hour before writing this and have fallen asleep at least 3 times typing this.

Beginning of the discussion - 1/19/21

Dealing with narcolepsy: I can't stay awake

• Community manager
Posted on

@ttnnkkrr Hello ttnnkkrr, thank you for opening this discussion and sharing your story! It sounds like you've been going through a really challenging situation all these years. Over the years have any treatments or medications helped you at all? What does your doctor think?

Has anyone else had a similar experience with narcolepsy?

Feel free to share here!

Take care,