Monday, November 19, 2012

Unlike my kiddo, I love sleep- Narcolepsy update

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.


  1. Ugh, how frustrating! I'm sorry you're battling another sleep issue (this time, not your little sweetie's!) ;) It must be very tough to deal with this amidst the regular sleep deprivation of having a baby in the house. Praying you can find a good balance, whatever that may look like.

  2. Had no idea you had this diagnosis but that makes a non-sleeping baby THAT much more frustrating! Ugh. Hang in there.

  3. Thx for this post. I didn't know that you had narcolepsy. My eleven year old was diagnosed with it this summer. It has been tiresome for me as well as him trying to get used to his regime. He hates his new limitations and I am trying my best to help him get use to it but it's a struggle to remain balanced. Good luck and stay encouraged.