u/catsandbeesknees

Just a curious AuDHD individual with some coexisting diseases (Rheumatoid Arthritis and Narcolepsy with Cataplexy). Are you Neurodivergent with autoimmune diseases and/or or autoimmune related disorders that you believe are connected to the stress of being neurodivergent? I don’t think I’m alone, and upon learning about how neurological stress can cause mitochondrial damage I am curious about your findings? Please share, maybe we can help each other.

I have NT1 and Rheumatoid Arthritis (JRA since childhood) I was wondering if any other xywav users have noticed Autonomic reactions. I took xywav for about 2 months for my narcolepsy with severe cataplexy. It helped me tremendously and basically stopped my cataplexy, I felt awake and had 0 sleep attacks during the day. This drug was a life changer and it worked perfectly for 3 weeks. I was able to titrate quickly to 9g nightly (split 4.5x2). I still only slept max 4 hours a night, but because it was deep sleep I felt so much better. After week three I started to wake up with freezing cold fingers and toes covered in sweat, not my feet or palms, just fingers and toes, my heart was racing and I became very spaced out and faint, this feeling lasted most of the day and would go away once I took my xywav. It came back more and more severe each day until my fingers and toes were blue and I could barely get out of bed, so I had to stop. My symptoms were completely gone the day after I stopped. I waited for a few days started at 2 grams one time a night and the symptoms came back after 3 days of 2 grams nightly. The symptoms mimic Raynaud’s syndrome, and I thought maybe my Rheumatoid was causing it, but the direct reaction with xywav use cannot be denied. The JazzCares nurse never heard of this and my neurologist hasn’t either. I’m very disappointed and frustrated because my cataplexy is debilitating and severe, it mimics epilepsy in severity. I also have such disrupted sleep that I will go days without sleep at night, I am also unable to nap by my own choosing, but will have sleep attacks whenever and wherever. My wakefulness meds help a bit, but the exhaustion and cataplexy is really unbearable. I also wonder if my Autoimmune disease may interfere with the central nervous system depression of Xywav. I am due for my next immunosuppressant infusion for RA, I may try Xywav again once I’m fully immunosuppressed and see if it makes a difference. Anyone else experience anything like this? I’m trying to investigate this on my own since I’m apparently some medical mystery.