Monday, May 28, 2012

Finding what works for you and your body

You wouldn’t think that it needs to be said, but it does: What works for some people just doesn’t work for others. 

It’s great to know lots about how to keep the body healthy, but you also have to listen to your body and figure out what makes you feel best (as well as what is healthy for you).

I feel that it is especially important for Narcoleptics to figure out what works for them because in some ways our bodies work differently than those without Narcolepsy.

Here’s my personal example: I recently have been trying not to eat or drink anything in the morning because I find that doing so makes me feel either tired or sick or both.  For years I have ignored my own observation that eating in the morning makes me feel badly, telling myself that breakfast is so important, etc., but it was only after I actually started getting nauseous after eating these past months that it hit me: clearly my body doesn’t want to eat in the morning! 

It’s been hard for me because I really like breakfast, but I am working on listening to my body instead of just doing what everyone else does and what people say is best.  (I’ve actually talked to multiple nutritionists over the years on the subject, and their response was: breakfast is the most important meal, can’t you eat something?   and that’s just it, no, I can’t.  Or at least, I shouldn’t.)

I’m pretty sure that my strange reaction to food in the mornings is because of my Narcolepsy, but I have no proof that this is true.  However, I also have much more cataplexy in the mornings when I exercise, so I think my body just reacts differently in the morning for some reason.

Anyways, it’s something to keep in mind: what works for “everyone else” might not work for you.  And at the end of the day, finding what works is most important, right?

Does anyone else have any examples they would care to share from their life?

God bless!


  1. I'm a lot older than you and have had narcolepsy for at least 15 years. I find eating breakfast makes me sluggish and stupid all day long. We all know that breakfast is the most important meal of the day but perhaps our brains are phased forward. Try a good breakfast at noon and see what happens. Or move it to bedtime. My daughter has similar problems (I think she inherited my problem) and cannot eat until evening.

    I find I go into zombee too often. My doctor doesn't believe this is a problem. Because I can still move around he doesn't call this catalexy. But being profoundly exhausted and feeling that my body weighs a ton and I can barely move it is not conducive to a good life.
    There are few doctors around here who understand this problem. Discovering what I can and cannot eat is ongoing.

  2. Thanks for your post Ellie. I had a similar reaction, and I noticed that I got tired predominantly after eating - I did a rotation diet a few years ago where I restricted different food groups for 4 weeks at the time. I found that gluten put me to sleep, and have been gluten free for 3 years now. Since going gluten free I haven't had a single narco attack!

  3. Eating during the day (including in the morning) has always made me really tired. But I've noticed since I was in elementary school, that the only thing I can handle in the morning without getting nauseous is plain cereal (plain cheerios or chex), bread, or saltines. Anything sugary, greasy, or the normal type of breakfast foods make me sick to my stomach and can sometimes have lasting effects throughout the entire day. Does this sound similar to you? I've never even given it a second thought until reading this post.

  4. cristina,

    lately i can't eat anything in the morning without getting nauseous. no idea why, but since having narcolepsy food seems to not agree with me in the morning.

  5. This is so interesting. I have narcolepsy (dx 2 yrs ago but notable in hindsight since high school; no cataplexy; Focalin 5mg 3x/daily) and I also don't enjoy eating until several hours into the day. I do have 2 cups of coffee first thing, with Truvia and nondairy creamer, and that's enough to put something in my stomach and get me going. I never want more than that, though; breakfast in bed is not something I would ever enjoy LOL! I value the health benefits of coffee, so I prefer starting out with that rather than an additional dose of stimulant. But it's often not until a couple hours after my first Focalin of the day (i.e. around 1 or 2 p) that I notice I'm feeling hungry and want to eat. And if for some reason I have to eat first-thing, as the others have said, my system is thrown off for the rest of the day. A final point re: weight loss: Everyone says you have to eat first thing or you'll have unbearable cravings by the end of the day. I have found the opposite is true for me. Thanks for a thought-provoking post!

    1. The opposite is true for me too re; cravings if I eat early. :o)

  6. Hi Ellie,

    I have never been a morning eater. As a kid my father would force me to eat and I would regularly barf it up as I walked to school. My cement laden brain would become even less focused if I had food in my system before 10:30 AM. Of course everyone always assumed I was not focused because I had not eaten. Around and around we go. LOL

    BTW I am 44 and have susupected I was narcoleptic for 20 years but could never get anyone to listen. So I've been taking anti-depressants and anti anxiety meds for co-morbid symptoms for years. And I'm still sleepy. badump bump.

    I finally have a diagnosis thanks to my daughters ADD psychiatrist. I am indebted to her. She suggested that since I can sleep through a dose of adderall perhaps I was narcoleptic more than ADD.

    Oh! btw....still no books on Narcolepsy out there. Ridiculous!


  7. I agree, that you need to listen to your body first, regardless of what other people say. I don't eat breakfast either and find I can manage my Narcolepsy symptoms way better this way...I enjoyed your post and will try to follow. It is comforting to see how other people living with Narcolepsy deal.

    Check my blog out at

  8. I've recently started to fear that I'm narcoleptic, and I stumbled across this blog while searching for "what it's like" to have it. This is the first post I've read here - and I just have to say that for months I haven't been hungry at all in the mornings. I'm trying to get back into running, and I'm wondering if that would help me feel normal hunger again...

  9. I am Angie 43 and was diagnosed in 2001. I remember in high school I didn't eat anything for breakfast or lunch because I knew if I did I would fall asleep in my classes. With age my narcolepsy and cataplexy symptoms are getting worse. I'm on the Atkins diet and it has helped me so much with staying awake and alert. I also have hypothyroidism which also makes me sleepy. The less sugar and carbs I put in my body the better and my stomach isn't as upset. Gluten free also great for your stomach.

  10. Are you sure you're not all pregnant? ... Just kidding.
    Interesting discussion. Maybe I'll try skipping breakfast for a while and see what happens.

  11. Hi Ellie and all of the other authors who have posted! This is a fascinating discussion. I am a 29 year-old with narcolepsy who was recently diagnosed. I too can't eat breakfast, and if I do, I immediately fall asleep even if I had just awoken from a 12 hour sleep. I am struggling with when to eat meals during the day, because I always get so sleepy after I eat. I have found that small snacks like fruit and veggies don't make me as tired. I bet a fruit smoothie in the morning would be a good mix of nutrients that wouldn't make me so tired.
    I hope there is more research conducted on narcolepsy in the future. I feel like so little is known about our condition. I would like to learn everything I can about Narcolepsy. Does anyone have any books he/she would recommend?

  12. Hi Ellie,

    I'm an American living in Amsterdam (so not too far from you) and was recently diagnosed after 10 years of problems. I had pondered the idea of starting a blog called "the newest Narcoleptic on the block" but really I feel like maybe I just need to find a professional to talk to as I mostly feel dupped having had this problem all this time and wondering why I couldn't keep up with every one else, and also why I was eating so healthily and not loosing weight!
    Please keep up the great work and let me know if you are ever train bound up north :) Berlin is still on our to visit list!

  13. let me know if you are ever going to be in Berlin and we can meet up for coffee. you can e-mail me at

    1. You just made me realise why I cant eat breakfast in the morning. The doc said have hetbal tea,fresh fruits and fruit juices for breakfast. It works for me.

      Raw vegetables and meat at lunch. Same thing at dinner. Detox tea at night.
      When narcolepsy is under control stick with the programme and slowly introduce regular foods at dinner

  14. Totally agree. We are all different people with different bodies and health. We respond individually to any kind of "rules" that are considered to be norms or standarts, that is why I agree that every person should listen to his body and do as it suggests.