u/Spare-Specialist-191

Wondering if anyone else has similar side effects with Xzywav. I am currently at 3.75 g twice a night. Increasing to 4.5g tonight.

• Dry mouth

• Loss of sensation in legs, hands or other limbs

• Less dreaming (low key makes me sad since I always have so many dreams that are WILD but I’m not waking as much)

• Increased sex drive (Not mad since my other meds killed it)

• The shits every time you eat and does it get better?

• How long does it take yall to fall asleep? (Takes me over an hour normally. Can I have insomnia and N1??)

Thanks! 😊

Hello Everyone,

I have always hard troubles sleeping. Never been good at it but I am always tired. I have extremely vivid dreams, to the point where I do not know what is real. I have to ask others if these things happened or not.

I got diagnosed with narcolepsy fall of 2024. I was finally heard! I kept going to the doctors and trying all different types of sleep medications but no matter what I am constantly exhausted. I have never woken up and felt refreshed. I don’t know what that is like. I am always going to bed early and it’s hard on my husband and almost 4 year old son. I miss out on so much! I hate always leaving them to go to bed. Just to not even sleep. It’s hard on my husband. He feels he can’t do anything.

I did a sleep study which didn’t show narcolepsy. But I have the gene for narcolepsy. I have been seeing a sleep neurologist - mind you, she didn’t even know about my positive gene test! She was baffled when I told her. She just wanted to keep increasing my Vyvanse. Now I am on Zywav. It’s a lot on my body. But I am hopeful. Because I don’t know what else to do at this point.

I really thought I was alone in this until I came to Reddit. I read a comment that said “I would not wish this in my worst enemy”. I have never felt so heard. I honestly cried. I didn’t know how many people suffered with this. I don’t feel as alone anymore.

So thank you for this community! I look forward to reading the comments and everyone’s experiences!