Trudging Through the Narcolepsy Brain Fog

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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.

 

Comments

  1. Iconomancer says:

    Great post – I understand exactly how you feel. I hate the physical Adderall prescription rule because I end up missing it for days or weeks at a time. For the last week I was just on Nuvigil now that I’m back on Adderall I’m realizing I basically slept through the last 2 weeks. It’s an incredible sacrifice you’re making to enhance your son’s nutrition and immunity (in a way that neurotypicals really can’t understand), but when that’s over, be sure to at least try. They’re all inadequate (and often it’s more unpleasant to be awake and foggy than just fall asleep) but don’t be afraid to use the plastic spoons when the good cutlery is all used up :-)

  2. Sharon says:

    Wow, it’s so nice to know I’m not alone.
    I told my husband just tonight that Ive stopped writing ‘to do’ lists because I become too overwhelmed when my sleepiness prevents me from ticking anything off. My two kids are school age now and I swear my fatigue is worse than ever, I have slept almost 3 conectutive days in a row this week. Such a waste of life, stuck beneath the sheets, paralysed by sleep. I hope you have improved since you posted this. Good eating is hard to achieve when you have nothing left to throw together something healthy, I thank god I had about 3 meals worth of frozen homemade caseroles in the freezer this week so that at least mine and my families diet was healthy.
    Good luck!

  3. Miesha says:

    I just want to thank you for this post, blog, and site. I have just been diagnosed with narcolepsy and its been almost 2 years of brain fog hell. I also have hypothyroid/ hashimoto issues which I thought was causing the fatigue and brain fog but Ive since had surgery been on medication for the thyroid as well as for depression and anxiety in which the docs kept sayong the fatigue was due to.
    I totally changed my diet lossed about 40 pounds and still no relief. I finally changed my primary care and he insisted I get another sleep study. Thank God he did. It came back negative. I was also diagnosed with mild sleep apnea a couple yrs ago and given a cpap but 2 doctors insisted everything was fine and that it could not be sleep it was depression. I work full time and when all this started, I was going to school. I had to quit school and have been dragging to work everyday. There have been so many so many smart comments from some of the people at work about me falling asleep or sleep walking or working half asleep. But when I would ask no one would actually say anything directly to me. It had to be the most embarrassing and fustrating time in my life. The more embarrassed and panicky or anxious I get the worse the cataplexy. I didnt realize thata what it was. I thought I was loosing my mind. Like I was going through hysteria or something. Anyhow. Sorry to go off in a rampage. But I notice that a week before my cycle I am no good. I feel like my mind wants to go into hybernation lol. Like I want to sleep until I start my cycle and then the cramps come abd Im week. Does anyone else experience that sort of exhaustion during that time? And if so, do you have any suggestions?

    • admin says:

      Hi, Miesha:

      Thanks for sharing your story. I apologize for the delay in getting back to you; I haven’t been checking my blog nearly enough. At any rate, I’m sorry you had to go through so much before you were correctly diagnosed. I’ve heard of several people with narcolepsy also having thyroid problems and even Hashimoto’s specifically.

      As for your question regarding an increase in symptoms around your menstrual cycle – totally normal and totally frustrating! Do you take a magnesium supplement at all? That may help. Just be sure to do some research on magnesium supplements and talk to your doctor before adding one. Some forms are better than others, and if you’re not careful, you can cause yourself further discomfort in the way of digestive distress. But seriously, magnesium is good to supplement all the time, not just around the time of your period. Also, try not to give in to the cravings for junky, sugary foods. Instead, make sure you’re eating a lot of protein. Here’s an article that explains how sugar works on hypocretin neurons as opposed to how protein works. http://www.wired.com/2011/12/why-sugar-makes-us-sleepy-and-protein-wakes-us-up/ If you’ve got any hypocretin left, it’s definitely worth trying to keep those neurons active!

      Good luck and let me know if I can help with anything else!

      -Heather

  4. Larissa says:

    You are definitely not alone. I was diagnosed with N about 10 years ago.. Fast forward now I have a two year old son and I am a single parent. I go through periods of guilt because I feel like I am depriving him of mommy time because I am so tired and exhausted on weekends which is the most time we have together throughout the week. I lost my job of 8 years about 6 months ago, and now working as a temp with the promise to get the permanent position. My work has been great, but once the supervisor happened to stop by right when I dozed. Before Narcolepsy I was a straight A student and very ambitious. I ended up barely finishing my Associates because I just didn’t have the energy and concentration like I used to. I was “most likely to succeed” now I feel like I am “most likely to go to sleep.” Add the depression to it and I am just a mess. I don’t have energy to do anything it seems. In my mind, I am this active, ambitious, super determined person with everything in order, but in reality, I am tired, what seems to most as lazy, barely can clean, or do anything but go to work. The worst of it all, is I am alone and my mom totally doesn’t understand the disorder so she thinks I just need to get more sleep and stop being lazy.

    • admin says:

      I’m not a single mom, but I can totally relate to everything else in your comment, right down to barely finishing my Associate’s degree. I tried to keep taking classes in the hopes of completeing a Bacchelor’s degree, but my body just wouldn’t cooperate. It is immensely frustrating.

      I was working part time from home, but my contract ended at the end of 2016. I’ve spent these first months of 2017 focusing entirely on my family, hoping I would feel better with “less” on my plate. It isn’t less, though. It’s just a shift. Instead of working, I’m cleaning more and mothering more, and sometimes those things feel more draining than working at a paying job!

      Are you under the care of a sleep doctor currently? Maybe having your mom go with you might help her understand how narcolepsy works?

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