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Does Anyone Sleep Over 13 Hours? Sleep Or No Sleep Has No Winner For Narcolepsy!

Does Anyone Sleep Over 13 Hours? Sleep Or No Sleep Has No Winner For Narcolepsy!

Since diagnosed with Narcolepsy with cataplexy in 2018, I would sleep for a total of 16-18 hours over the weekend just to get rested up for the upcoming week. Now I've been sleeping approximately 10 hours if I had a day off. I still find myself dragging myself out of bed just to eat and try to be a human for a day. Does anyone hold a extensive amount of hours sleeping after working full time, raising kids and trying to just make it through the week?

posted October 28, 2022
A MyNarcolepsyTeam Member

@A MyNarcolepsyTeam Member you are 100% correct. The only meds that actually work for me is the Adderall X R
Modfaninil 200mg and Fluoxentine. My pulmonologist introduced me to xywav and xyrem but I had to many side effects, now I've just started the Adderall X R which is working for me.

posted November 17, 2022
A MyNarcolepsyTeam Member

As I've learned with narcolepsy when we sleep we are not getting the required stages of restorative sleep and that is why I wake up and never feel refreshed. I feel like I've been up all night or had a late night with alcohol and feel hungover. Then fall back asleep multiple times struggling to stay awake. The only meds that have ever worked for me are Adderall, xyrem, sunosi, and now switching to xywav due to sodium and high blood pressure. It's still a struggle though as nothing seems to work 100%

posted November 2, 2022

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