Narcolepsy + A Baby= ???

Narcolepsy is a sleep disorder that causes excessive sleepiness and frequent daytime sleep attacks. (source)

I have fallen asleep in class, church, at family gatherings, movies, and friends houses. Rarely could I ride in a car for an extended time without also falling asleep, and while I've never actually fallen asleep while driving, I have had to stop on trips to take naps, and I'm constantly listening to books on cd or talking with a friend to keep my mind active. I actually have a (fairly) mild case, which is why I attempted to ignore my symptoms for years, even when the two other narcoleptics I know told me they thought I also had the disorder. Finally, my symptoms became too much to ignore, and I also experienced the one cataplexy attack I can actually identify (sometimes they are so brief they go unnoticed).

I was diagnosed in 2009, and my doctor prescribed me Provigil. While part of me hated the idea of a disorder that will cause me to be on (expensive) medication the rest of my life, it was also a pretty big relief to finally understand what was going on with me, and to stop trying to hide sleep attacks when they happened at inopportune times (like at work).

The medication has worked wonders. I take it every morning, and have not experienced any attacks while on the medication. Sleeping at night is not a problem, and I can still nap with the best of them, but I actually have control over when it happens. The downside of the medication is that it is what is known as a Class C drug, which means that no tests have been performed to indicate that the drug is safe for a pregnant person to take. Now, there haven't been any tests that say it's not, but my OBGYN and my General Practitioner have both said they do not want me to be taking my medication while trying to conceive (TTC) or while pregnant. Actually my GP said at least not for the first trimester, but he would prefer it if I could be off the medication the whole time.

So what does that mean for our baby plans?

Because my case is mild enough that I went for years without a diagnosis, my GP wants me to try to manage the disorder with the same techniques I used before (air conditioning on full blast or talking to a friend while driving, taking naps, etc). He's also having me cut back on the amount of coffee I drink right now so that when we actually become pregnant, I can add it back in (in safe amounts as advised by my OBGYN) and have it be a bit of a shock to my system. This is my plan, worked out between me, my Husband, and my two doctors, so if you happen to think all caffeine during pregnancy is evil, please don't share. If, however, you happen to be a pregnant narcoleptic and have other suggestions, please DO share.

Because my work, family and friends are all aware of my disorder, I'm not really worried about falling asleep at strange times around them, but I will admit, driving has me nervous. I'm also very afraid of experiencing another cataplexy attack because let me tell you, that was scary. Going off my medication is probably very near the top of the "Fears about having a baby" list, but some people have actually said their symptoms lessened while pregnant, while others have taken Provigil thoughout their pregnancy and been fine, so we'll cross that bridge when we come to it.