u/Horror-Boss-7097

Hi all, I'm starting to worry I might be getting dependent on pregabalin and lorazepam and could use some advice.
Some background: I have narcolepsy with cataplexy. I was started on venlafaxine 37.5 mg for the cataplexy and for really bad sleep paralysis and hypnagogic hallucinations. It's helped with those, but I also have restless legs at night. I move constantly, and every night is a nightmare unless I take pregabalin or lorazepam (sometimes both). Honestly I'm scared I can't cope without them.
The other thing: before venlafaxine I was getting about 1.5 hours of REM a night (tracked with my Oura ring). Now I'm lucky to get 30 minutes. I wake up exhausted and need to nap during the day, which I didn't need before.
I really don't want to end up dependent on benzos, but I'm not sure what to do.
For those of you not on sodium oxybate (Xyrem/Xywav/Lumryz), what do you take at night? Has anything worked for you for RLS + broken sleep? And has anyone else noticed venlafaxine or other antidepressants making their restless legs/sleep worse?
Thanks for reading, any experiences appreciated.

I was fully conscious the entire time — not the usual fuzzy, half-in-a-dream awareness, but properly awake and aware of my surroundings while paralyzed. The strangest part was a very strong sensation that my body, especially my head, was being lifted upward. Not floating gently — more like being pulled/lifted.

When the paralysis broke and I actually “woke up,” I found myself almost falling out of bed, so there might have been some real movement happening as it ended, blended in with the hallucination.

I’ve had sleep paralysis before but usually it’s the classic “presence in the room” or chest-pressure type. This lifting/floating sensation was new for me and honestly disorienting in a different way — less scary-movie, more just… weird and physically confusing.

Has anyone else experienced this vestibular/floating type specifically?
I feel like nobody would even believe what I’m talking about this is just fucking insanity

I was recently diagnosed with narcolepsy type 1, and my doctor and I are still figuring out the right medication. I started on Modafinil, but it’s made my cataplexy and sleep paralysis about twice as bad — I’m honestly scared to go to sleep now.

My doctor wants me to add venlafaxine to help with those symptoms, but I’m hesitant. I’ve been on antidepressants before and they turned me into a zombie. Sodium oxybate isn’t easily accessible or affordable where I live (Estonia), though I’d be willing to pay for it eventually if it turns out to be the better option.

I guess I’m posting because I’m looking for people who’ve actually been through this — what combinations have worked for you, and what’s helped you get back to something like a normal life? Right now I feel pretty depressed and hopeless about all of it.