Trudging Through the Narcolepsy Brain Fog


One of the most frustrating symptoms of narcolepsy for me is brain fog – that heavy feeling on my skull that clouds my ability to think and react.  Brain fog is like trying to drive through heavy fog.  Since the view is obscured, you slow down.  You must try to pay extra attention to your surroundings, though in the case of brain fog, this is very difficult. There is no way to force the fog to go away; you have to simply wait for it to lift.  With narcolepsy, you can sometimes help the process by taking a nap or taking a stimulant, whether in the form of a pill or drinking a caffeinated beverage.  But it always comes back. Relentlessly and often more than once a day.

I have been trying to function through heavy brain fog since my son was born in July.  It has been especially bad the last few weeks.  His sleep/wake schedule is nonexistent, and the inconsistency is exacerbating my symptoms.  It’s an in-my-face reminder of why I sought help in the first place, and I hate it.  Concentration is difficult, and I find myself missing little bits of time, probably falling into micro sleeps and having automatic behavior.

Last week, I bought a package of sausage at the store along with some pasta sauce, a baguette, and other odds and ends.  When I went to put together our quick pasta dinner later that night, the sausage was nowhere to be found.  It was unsettling because I swore I remembered putting the sausage in the refrigerator.  After searching the house, even in weird places like in the baby’s room, in the trash, in the drawer where we keep plastic sacks, my husband and I could not find it.

Because of the sleepiness is so debilitating, I’m not getting out of the house much.  It is taking every ounce of my energy to go through the motions with Jack each day.  My priorities are making sure my kids and I are fed, dressed, and clean.  I have to get my daughter to school, and I have to/want to play with my son to help him grow and develop.  Everything else is extra.  Getting out to the library or to the store is a big deal and often drains me of any “extra” energy I may have in a given day.  I try to get out for a walk since my little guy enjoys being outside, and it helps me get at least some exercise, but it’s really tough to find the strength and motivation to put one foot in front of the other any more than is required to move around the house. I feel like such a sloth.

On days my little guy goes to daycare, I have work to catch up on, but I cannot get as much done as I’d like before I must nap.  Naps have not been refreshing, no matter how short or how long.  Once I finally shake the grogginess, I can hope to have a few hours at most to get stuff done before the sleepiness hits and the fog becomes dense again.   I do get to nap more on weekends, thanks to my husband.  At the same time, I push myself to cram in grocery shopping and any other activities with the family since we do not get much time during the week to spend together.  By the time Monday rolls around, I’m already running on very few spoons.

It is so frustrating to function like this.  I imagine it’s a lot like taking a sedative and being forced to stay awake and carry on like normal.  I used to feel smarter, faster, more of a doer and less of a want-to-doer.  I don’t even make to-do lists anymore because I cannot stand to see that not much is getting crossed off.  However, I am not ready to go back on medication.  I am still nursing my son, and quite frankly, the medications that are currently available are like trying to cover wounds with Band Aids that are too small.

I am falling into such a low place that it feels hard to crawl out of such a deep hole.  It’s time to regroup and take charge again.   Because I’m a planner and I perform better when I’ve got everything written out, I’ve been working on a plan to get some control back.

The first order of business is to clean up my eating.  I’m already dairy free while breastfeeding since it seems to make my son fussier and gassier.  I started to track my calories last week using My Fitness Pal so I could get an idea of the calorie intake I need to maintain in order to support breastfeeding while cutting out gluten and processed junk.   I may switch my meal plan on eMeals to Paleo.  I haven’t decided yet.  It’s currently set to gluten free.   I’ve gotten through the first two days of being gluten free with no cravings, but I know they’ll come.

I’m going to keep trudging through the fog.  Things will get easier as my baby grows older and starts to have a more predictable routine/schedule.  I WILL clean up my eating, and I WILL get back to pounding the pavement with my runnin’ shoes.  It’s just really hard to see that far ahead at the moment.



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