My S was just Dx with probable narcolepsy. I have heard of it but have no real experience with it. To top it off, he leaves in two days for grad school.
His doc Rx a med and will check in with him next week. I was already sad to be packing him up but now my head is swirling. I know he’s an adult but he’s generally pretty healthy and I have no idea how he will handle meds and doc visits etc. He’s very book smart but practical smart? Not so much.
Anyone have any general advice on this condition or what he can expect?
When I was younger we had a maintenance guy who had narcolepsy. He could be fixing something and then just fall asleep and wake back up and continue on working like nothing happened. In the office it was fine but I always worried what would happen if he did that while driving. I hope the meds work for your son.
I had an uncle who had this condition. He would be in the middle of a conversation and fall asleep. This was in the 70s and I don’t think there was any medication that helped. Good luck to your son…
Has he had an overnight sleep test to rule out sleep apnea? Has he had a multiple sleep latency test? If he hasn’t had either of those, get him to a board certified sleep physician.
A friend and her school aged son have it. She takes meds twice a day. She’s a school teacher and operates on a normal schedule. Best wishes to your son.
Luckily (I think) he has never just fallen asleep. But he naps a lot and always feels tired. He had a sleep study done overnight in the hospital with a sleep specialist. It included 3 naps the next day where he went immediately into REM sleep. Apparently the nap data and the absence of sleep apnea point to the narcolepsy. @audiophile I believe that is the test you referenced?
They have prescribed provigil. I just hate that this is all happening right when he is leaving for grad school. Everything takes longer than I anticipate - getting the physical, then getting the appt with the sleep doc, then setting up the sleep study, then getting the results etc. It all took a couple of months!
Yes, just wanted to make sure he had the proper diagnostic tests. The Provigil should help. At least it sounds as if he doesn’t have cataplexy, which can be very unnerving.