I have recently gone through a medication overhaul and I feel like this is the right approach for me for now.
Following a long push for a diagnosis, I was diagnosed with Narcolepsy with Cataplexy. I had been tried on multiple medications and doses to the point that it was difficult to tell a symptom from a side effect or drug interaction.
I was on Xyrem from July to January. Xyrem did manage Cataplexy effectively and almost eliminated EDS. Although I have been discontinued on Xyrem, I am still benefiting from almost non-existent EDS- really a miracle drug for me. While on Xyrem, I moved from Adderall to Nuvigil/Provigil.
While on Xyrem and Provigil/Nuvigil, my personality was just not the same. My symptoms were reduce and almost eliminated, but I began struggling with Depression and Anxiety. This was new for me and a real problem. I was also struggling with reduced appetite and weight- I had great difficulty maintaining and gaining weight and I looked way too skinny.
I switched to Effexor XR (SNRI) which is effective for Depression/Anxiety and also reduces Cataplexy. I am also on Trazadone at night for sleep. I am not currently on any medication for EDS (thank you Xyrem) and managing that with lifestyle adjustments.
i have my personality back- I have a sense of humor again. Wahoo. I have a healthy appetite. I have started running again. I sleep a solid 8+ uninterrupted/restful hours of sleep with Trazadone. Cataplexy is well managed. Overall, I feel like I do not have this illness.
I do not know how long the benefits of Xyrem will continue to last. It seems to have dug me out of a deep hole from a massive sleep dept. For right now, I am thankful for whatever I have for as long as I have it. If and when my crushing sleepiness returns, I will certainly consider another try with Xyrem- even though I did not respond well for the long haul, it was well worth the try.