Symptom Changes After Stopping Xywav
Wondering if anyone else has experienced major symptom changes/progressions after getting off of Xywav?
I (24yo female w/ N1) began Xywav last August and got off of it at the end of March due to side effects causing other major health concerns I couldn't endure.
It was a bittersweet change because Xywav had treated my N1 symptoms better than anything I've tried in the ~5 yrs since my diagnosis. In particular, I only experienced cataplexy 1 or 2 times over the 8ish months I was on Xywav, which was a major improvement from the 3-4 times per month I was experiencing it pre-Xywav.
Since getting off of Xywav 2 months ago, my cataplexy has been worse than ever before. I'm experiencing it multiple times a week. I also seem to have developed/discovered a handful of new triggers during this time. Previously, laughter was my only trigger. Severity ranges anywhere from minor drooping of eyes/mouth/slurred speech or buckling knees for a second or two, to up to like a minute of full body loss of muscle control (this is the one thing that isn't drastically different from my previous experiences with cataplexy).
Been feeling confused, discouraged, and anxious about why this is happening, and what it means for my treatment journey. Would love to hear if anyone has gone through anything similar!!