Narcos are fat.

No offense, but we narcoleptics are fat [1].  In fact, of all of the narcoleptics I have met, I have only met two people (both young men, mind you) that were even remotely in shape.  For me, the fact of obesity and narcolepsy is one of the most unfair aspects of the disease. In the first place, people who don’t know anything about narcolepsy, assume that we are lazy. “Just make your bed and sleep less!” seems to be their cure-all answer.

Indeed, the official stance of The Standford Center for Sleep Sciences and Medicine (home to the famous Dr. Mignot) appears to be: “Many patients with narcolepsy also gain weight as the result of inactivity and sleepiness.”

For years, narcoleptics have fought a huge social stigma that we are somehow lazy sloths that just want to sleep and eat all day, despite the facts that we actually sleep less efficiently than other people, and still gain weight on diets that work for other people!   

Fortunately for us, there is a body of research linking metabolic dysfunction and narcolepsy.  The excitement about these advances (for me, at least) is overwhelming, and there are several reviews on the site summarizing them.

Recently, it was shown that we narcos don’t produce a lot (if any) hypocretin.

hypocretin A

Structure of hypocretin

Our brains are simply deficient in the production hypocretin (also called orexin), and it is hypothesized, though not proven, that we may have a complete loss in the neurons of the hypothalamus responsible for producing hypocretin.  For everyone, hypocretin controls arousal, wakefulness and appetite. A deficiency in hypocretin impairs sleep as well as metabolism, and in addition to being sleepy, narcoleptics have a lower basal metabolism than other people. Because of this, narcoleptics tend to gain weight in spite of eating fewer overall calories than most people. 

Orexin is not only active in the central nervous system, but it has wide ranging action throughout the periphery.  Indeed, mice that lack orexin gain weight as a result of brown fat hypoactivity and reduced energy expenditure. Remember, brown fat is good fat. White fat is the “bad fat” that makes you appear fat.

So what does this mean? Surely, it doesn’t mean that we are now allowed to sleep and eat as much as we want. But it does mean that WE ARE NOT JUST LAZY!  For me, the problem of metabolism and narcolepsy (in addition to the metabolic problems that stem from my hypothyroidism), is an ongoing battle. On the one hand, I am able to harness the power of diet and nutrition to help control my symptoms, but on the other, I am always fighting. Even when I exercise, I can’t eat more than 1,000 – 1,200 calories a day without gaining weight (very quickly, I might add)!

It is clear that narcolepsy is more than just a disease of sleepiness. It is a disease with many faces, encompassing tiredness as well as impaired metabolic homeostasis. In fact, it was recently reported that obese individuals had lower circulating levels of orexin A. The results from the study indicate orexin doesn’t only work in your brain, but that the receptors for orexin (specifically in the gut and pancreas) contribute to systemic effects of orexin itself, and that a deficiency in orexin not only can have neurological effects, but systemic ones as well.

11 thoughts on “Narcos are fat.

  1. I have to disagree, I was diagnosed when I was 28 and wore a size 6/8. I ran 5ks, spin class and more. I would not have been considered obese by any means and the medications for narcolepsy do cause quite of bit of weight loss. At 31, I’m a size 0/2 and have to force my calorie intake. I understand how some one could relate fat with sleeping alot, but that is not always the case.

    • I’m a 15 year old that was just diagnosed and I am currently 175 lbs and am 5’10” Therefore I am overweight…..but not by a bunch. Do you have any tips on diet? I’m not worried about excersize…..I workout everyday and am very involved in sports because I am a 3 sport athlete. Tips on weight loss and maintaining the healthy weight?

  2. I have also been very fit since childhood, and cycled at a competitive level for years before being diagnosed. Loss of my voracious appetite due to Modafinil caused a weight loss from 168lbs to 151lbs (5’9″). I suspect there’s some degree of self-selection amongst the people reading this article.

    • I know this is an older post but this comment really irritated me. We know that N presents in many ways in everyone. For the four years before my diagnosis I suddenly started gaining weight for no reason at all. Keep in mind I have always been extremely stringent about my diet and have done half marathons and almost obsessively exercise. Before my diagnosis I was to the point of almost eating nothing at all, I considered a single sandwich to be too much. I managed to stay just barely under being overweight. I’m a 5’8″ female who stayed at about 135-145 range consistently with consistent diet and exercise, no overeating and at the time I was diagnosed had ballooned to 165. This was extremely stressful because I couldn’t figure out what was wrong with me. Please as a person with N don’t judge because the most frustrating thing in the world is having an underlying health problem and everyone thinks you make excused or just don’t try hard enough

      • Couldn’t agree more with you regarding judgements of those with narcolepsy. For two year before my diagnosis, I was completely unable to stop gaining weight, despite the fact that I’ve always been considered slim and even “tiny” after having four kids. I believe that I’ve had narcolepsy since I was a teen, but something seemed to trigger the disease to progress really rapidly over just a few years. Now, I’m exhausted, 5’6″ tall and 160 pounds, and fighting every day to be active, exercise and maybe even lose some weight. But the scale keeps saying “no!” I would caution anyone who has not seen this level of progression in their disease to refrain from judgement, because before you know it, our story could be yours too! As a side note, 3 of my 4 children have been diagnosed with narcolepsy as well, so I’ll never stop fighting for my health, so that I can stay engaged enough to help them in whatever they encounter, even if the scale is not my friend!

  3. Both commenter’s should read the research. it suggests those most prone to weight gain are those who have narcolepsy without cataplexy only.

    • I don’t believe that is an accurate statement – and from my experience both PWN with and without cataplexy seem to gain weight. From a mechanistic perspective, it would seem like if only one subtype would gain weight, it would actually be the narcolepsy with cataplexy group. Can you provide a reference for your statement?

  4. My 7yo son contracted Narcolepsy and Cataplexy due to the Pandemrix Swine Flu vaccine jab in 2009.
    His weight gain after only 2 months was extremely rapid. We were told his orexin levels were effectively zero and being so young his brown fat cells must’ve depleted very quickly.
    We make sure he keeps active every day and carefully control his calorie intake but it seems to make no difference.

  5. As I understand it, the lack of hypocreton/orexin disrupts the body’s appetite control system. For some, this means we can always eat, eat and then eat some more. The only ‘full’ feeling I know is the physical stuffed feeling. For others, the issue may be never feeling hungry. The meds for narcolepsy definitely don’t help us feel hungry. I’ve met narcoleptics on both ends of this spectrum. The people I know that best maintain a healthy weight are those able to follow routines well. There is a need to recognize narcolepsy as more than a sleep disorder; our bodies lack the natural ability to regulate appetite as well as sleep.

    • I’m a 15 year old that was just diagnosed and I am currently 175 lbs and am 5’10” Therefore I am overweight…..but not by a bunch. Do you have any tips on diet? I’m not worried about excersize…..I workout everyday and am very involved in sports because I am a 3 sport athlete. Tips on weight loss and maintaining the healthy weight?

  6. I have had narcolepsy with cataplexy for many years. Weight wasn’t a problem b4 narcolepsy. My daughter’s up coming wedding motivated me to find my tipping point. After 6+ months of approximately 750 calories a day with one day a week at 1,000-1,200 I was able to lose 10-12 pounds. This was a high protein low carb low sugar diet. A can of tuna is 120 calories and 14g protein and celery has very few calories when you need to feel full! I walked my puppy two times a day. I do take a nap but I’m not a couch potato. I suppose some narcoleptics may have more orexin than others so please do not judge. My relatives tell me over eating= weight gain (NO SUPPORT). I guess for me over eating is over 1,000 calories.

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