I just posted this in the "getting pregnant with N" thread but since this one is more current, I'm posting here as well with the hope that I will get a few responses. Apologies if you're seeing this twice and thanks in advance for sharing your experiences.
My partner and I are doing some preconception planning and are so thankful to have found this forum! I currently take Nuvigil for narcolepsy, supplemented by Methylphenidate (though I haven't had to use this much lately). I tried Xyrem for a few weeks but didn't tolerate the medication well so don't think that it will be an option for me during pregnancy, nor am I certain I would take it even if I tolerated it well. I'm currently looking for a physician/midwifery practice in the Washington, DC area that can best support us through future pregnancies (we're planning to start trying for our first a little later this year), and I'd prefer care providers that don't take a highly medicalized approach to pregnancy and birth (probably asking for too much given that I manage narcolepsy and a few other chronic conditions that will affect this pregnancy! . If you or your loved ones have suggestions for doctors/midwives in this area, I would so appreciate the recommendation. I realize it's probably against the rules to "name names" on this forum, so please message me individually, or let me know how else to connect with you.
I was doing some research and alarmed to find that there's a current practice guideline recommending planned c-section for women with narcolepsy with cataplexy. My cataplexy isn't severe and so I'm unsure that I would experience some of the same difficulties that the women in the referenced case studies have (or others on this forum who have described their own experiences) - such as having drop attacks during contractions, pushing phase of labor, and/or during epidural insertion. I'm curious as to what the experience has been with those on this forum re the advice of their care providers about this issue.
Also, I've read that some experience worse narcolepsy symptoms throughout pregnancy and find it difficult, if not impossible, to work. I'm wondering whether anyone has experience to share regarding requesting an accommodation from their employer (either to work from home, to take naps during the work day) and/or going on disability for a time during/after pregnancy.
This is a lot of questions for one post, though I do very much appreciate learning from your experiences...links to other sources/articles are also welcome.