I went to the doctor a few weeks ago to establish myself as a new patient and to check in on some things I'm slightly concerned about.
First up, I was so thankful to not experience hardly any of my symptoms of Narcolepsy while I was pregnant, and even for the last few months (which often happens). I experienced what I would think is "normal" pregnancy tiredness, but honestly, it was NOTHING compared to how I feel when my narcolepsy symptoms are in full swing. It was just a tired feeling, usually reserved for the evenings, that actually would improve when I would rest, as opposed to the constant fog of narcolepsy with attacks of sleep that are not helped at all by any amount of rest. When E was brand spankin' new, I would say that level of fogginess was the closest mimic of my narcolepsy symptoms, but I fully attribute that to the lack of sleep any new parent experiences. There were no sleep attacks, and as she slept for longer periods, I felt more rested too.
Unfortunately, over the last couple of months, even when E gives us pretty good nighttime stretches (it's her daytime sleep that has me frustrated), I can feel my symptoms returning. There is a difference between being tired and having a narcolepsy attack. At the start of an attack, my body is still awake, while my brain goes to sleep. In high school and college I would actually continue to take notes while my brain was asleep (they were completely unreadable), before completely succumbing to the attack. I can usually feel the episode coming, but there's nothing I can do to stop it. Then I'll be completely asleep and out of it (usually just for a few minutes for me).
I do have a mild case, thankfully, but there have been several times I've planned to be out of the house that I've had to change my plans because I don't feel like its safe for me to be behind the wheel. I've also had a few times when I'm holding E and can feel an attack coming so I make sure to place her somewhere safe and ride out the episode. My narcolepsy was really well controlled with Provigil, so when I went to my check up, I talked with my doctor about going back on the medication. But, as with many medications, it is not approved for breastfeeding. I had hoped there would be an alternative medication my doctor felt was safe, but he didn't know of any that was approved for narcolepsy.
So where do I stand? Right now, I don't plan on any changes. So far, my symptoms are still fairly mild, and the attacks are few. I'm thankful I'm at home with E, and have a lot of flexibility in when I leave the house. If it gets worse, the hubs and I will be discussing if I need to stop breastfeeding and get back on my medication.