Diet for Narcolepsy: A Science-y View from 30,000 Feet (Part 2 – Carbohydrate Control)

Diet for Narcolepsy:  A Science-y View from 30,000 Feet (Part 2 – Carbohydrate Control)

Welcome to Part 2 of the series Diet for Narcolepsy: A Science-y View from 30,000 Feet where I’m sharing with you the reasons, as scientifically as a layman can get, behind the diet my family and I follow.

This 3 part series is meant to be a high level overview of how I’ve interpreted the science and applied it to the diet my mom, my son, and I follow, thus the “30,000 Feet” part of the title.  Later on, after you’ve been on the diet for a bit and the fog has lifted enough for you to think straight, we’ll go into much greater detail and dig deeper into the science-y stuff.  My hope is that in this series I’ll have provided you with enough solid and concise information that you can share it with your doctor, family, and friends in order to gain their support in your endeavor.

Be sure you’ve read the first post in this series, Diet for Narcolepsy: A Science-y View from 30,000 Feet – (Part 1 – Orexin), since I’m building on that information here in this post.

Let’s dive right in!

PART 2 – CARBOHYDRATE CONTROL

In my last post we talked about orexin and I revealed the three pieces of information that blew my mind and made me realize that the idea of mitigating narcolepsy symptoms via diet actually had real potential. Those three items were:

  1. What we eat causes our blood glucose levels to go up and down.
  2. High glucose levels turn orexin OFF. (1)
  3. Lowering blood glucose levels turn orexin ON. (2)

On. Off. Glucose. Glucose is the switch… So how do we control the ON/OFF switch?

First, we need to understand what glucose is, right? Food is made up of three things called macronutrients: carbohydrates, proteins, and fats. When you eat, the body digests the macronutrients. Bear in mind that every type of carbohydrate you eat is eventually converted to a simple form of sugar known as glucose. Some carbohydrates (certain vegetables and a few fruits) convert more slowly and have less of an effect on your blood glucose levels. But other carbohydrates like all the bread, pasta, cereal, potatoes, rice, fruit, dessert, candy, and sodas you eat and drink (otherwise known as sugars and starches) eventually wind up as glucose and will significantly raise your blood glucose levels. (Portions of this paragraph were taken from the site Mark’s Daily Apple, it was worded so well that I just had to use it.)

You now have a basic understanding of what glucose IS and that the foods we eat, specifically the carbohydrates that we eat, raise it. To be crystal clear, “all the bread, pasta, cereal, potatoes, rice, fruit, dessert, candy, and sodas you eat and drink” will raise your blood glucose and turn your orexin OFF. Voila! We see our OFF switch in all its glory. It’s just that simple folks.

Now, please recall that low levels of glucose in the blood will allow your orexin cells to be in the ON position. And since part of what this website is about is using diet to help keep orexin ON, we should probably talk about that right? Low levels of glucose can be accomplished by eating protein and fat, and being careful with carbohydrate consumption. The main type of diet that does this is called a Low Carbohydrate diet.

Each macronutrient is a fuel for the body. If you limit one (carbohydrates) your body will burn the other two (protein and fat). And there are some truly lovely benefits for people with narcolepsy when we use the other two to function:

  • Protein
    • Blocks glucose (meaning that when you do eat carbohydrates you minimize the effect they have when you pair them with protein) (3)
    • Does not raise glucose levels (Hello ON switch!) (4)
    • Amino acids, found in protein, trigger orexin cell activity (5)
    • Eating protein prompts the brain to manufacture serotonin, norepinephrine, and dopamine…these help to boost energy and mental clarity (6)
    • Protein makes you feel full (7)
  • Fat (OMG FAT! Hold your horses and keep an open mind. I’m referring to good fats and we’ll break all that down at a later date)
    • Makes you feel full and satisfied (8)
    • Certain vitamins, notably A, D, E, and K, require fat to get absorbed properly in the body making dietary fat necessary to transport these “fat-soluble” vitamins (9)
    • When reducing carbohydrates and providing dietary fat, the liver uses the fat as fuel rather than storing it away for later use (this is called ketosis and I’ll talk about that in a minute)
    • Has been shown to help brain functions like memory, speaking ability, and motor skills (10)
    • Omega-3 oils/fats promote neurogenesis (the birth of new brain cells) and communication between neurons (11)

That’s the basics of what a Low Carbohydrate diet can do for people with narcolepsy… but what if I told you that you could take a Low Carbohydrate diet a step further and truly maximize what it can do for you? You’re asking “If Low Carbohydrate diets help keep the orexin switch ON during the day, what else do I need?” What if, by going a step further, you could ADD in some more benefits?

I’m referring to a Ketogenic diet (specifically Nutritional Ketosis). This diet is just a Low Carbohydrate diet with a few changes. Ketogenic diets get more of their calories from dietary fat than they do from protein and carbohydrates. This diet also drops the carbohydrate intake down to around the 20% of caloric intake mark and focuses on nutritional density. By dropping the carbohydrate intake to such a low amount, being moderate in protein intake, and getting the bulk of the calories from fat, this diet switches the body to being a fat burner instead of a sugar (glucose) burner. When the body makes the switch it is called ketosis and means that the body is producing something called ketones. Why are ketones a benefit to people with narcolepsy? Ask and you shall receive:

  • Ketones increase non-REM sleep.  Uh!  Hello! That’s the GOOD, restorative sleep.  WIN! (12) (13)
  • Ketone production is a natural physiologic state induced during prolonged states of decreased glucose availability. So by default, when in ketosis, your glucose levels are very low, keeping the orexin in the ON switch longer.
  • Ketosis increases the number of energy producing mitochondria in cells and improves their efficiency, thereby giving you more expendable energy (14) (15)
  • Ketones help optimize cognitive function and improve memory (16), this may be due to the anti-inflammatory effects of ketones on the immune response (17)
  • Since you aren’t eating carbohydrates, you aren’t producing insulin and crashing your blood sugar.   This reduces food cravings. (18)

Those are some pretty nice reasons to take the diet to the Nutritional Ketosis level, eh? Well check this out: A study performed in 2004 (19) took 9 people with narcolepsy and put them on a low carbohydrate/ketogenic diet. The 8 subjects that finished the study showed the following results:

  • The total score on the Narcolepsy Symptom Severity Questionnaire decreased by 18% after 8 weeks
  • The Sleepiness Subscale score decreased by 22%
  • The Sleep Attack Subscale score decreased by 13%
  • The Sleep Paralysis Subscale score decreased by 24%

Decreased, decreased, DECREASED folks.

Here’s something else to think about. Over the last four years, I’ve been involved with two groups on Facebook whose members are people with narcolepsy and use diet (in some form or another) plus lifestyle changes to mitigate their narcolepsy symptoms (the Gluten Free Narcolepsy and the Keto PWN Facebook groups). We’ve noticed that when medicated people with narcolepsy get into ketosis they do not need their standard dosages and need to either reduce the dose or eliminate the medication altogether. Hmmm…interesting. So what could be happening here?

As it turns out, many of the drugs prescribed to narcoleptics alter glucose metabolism and induce ketosis:

  • Amphetamines suppress hunger, induce hypoglycemia, and promote ketosis (20) (21)
  • Gamma-hydroxybutyrate (a.k.a. Xyrem) is a modified version of a common metabolic ketone (beta-hydroxybutyrate) and promotes the metabolism of fat instead of carbohydrates (22) (23)

Inducing these effects using diet seems a viable mechanism to reduce the necessity for drugs that do the same thing… but without the side effects. Food for thought isn’t it?

Whew!  Are you cross-eyed? No? Great! It means I did my job and condensed down all that super complicated information into something easy to understand. But we aren’t finished with all the science-y stuff just yet. Stay tuned for Part 3 where I’ll dive into the gut…not literally, ew! We’ll just look at gut health and why I feel it is an integral part of this diet for narcolepsy. See you soon!

Your Madcap Miss (a.k.a. Gina Dennis)

For more information on the cognitive effects of ketones:

Let me be totally up front here…I AM NOT A DOCTOR, nor am I a nutritionist, I only have a tiny amount of formal training in such things as a Health Coach.  But I am a person with narcolepsy who uses dietary and lifestyle changes to mitigate my narcolepsy symptoms.  I’ve been experimenting with these changes since July 2011 and have successfully maintained a high level of narcolepsy symptom management since that date.  And so has my family with narcolepsy.   This website contains our personal stories, failures, and experiments.  In this website I will share with you the information that I have found most credible and some practical ideas for mitigating narcolepsy symptoms.  I beg you to check with your doctor before initiating any of the dietary changes I speak of, especially if you are taking any medications.

Madcap Disclaimer

    16 Responses to Diet for Narcolepsy: A Science-y View from 30,000 Feet (Part 2 – Carbohydrate Control)

    1. I am mind blown. All the thanks to you right now! I am 23, have N with C. I choose to not be on any medications. I have altered my diet with what made the most sense to me after doing endless research. So I have been on a high protein, low carb & sugar diet. I have seen some significant changes to my symptoms but still am on a hunt for what I can do to improve. I had posted in a Narcolepsy Facebook group I belong to and one of the members had mentioned your page. This is the first time I’ve really seen anyone break down the science and diet the way you do. I will absolutely be trying the Ketogenic diet. I had been searching for something like this, as some of the science went over my head and I’ve being following what has made the most sense to me. Really enjoying reading your posts!

    2. I have been in nutritional ketosis for more than three months now (I check my blood ketones daily). I started it primarily for weight loss but I also figured the positive impact of using ketones may help with my narcolepsy symptoms. I personally have noticed significant improvement in my sleep patterns and reduction of my primary symptom which is excessive daytime sleepiness. It’s not perfect but noticeably improved. I had reached a state of natural fasting so I started implementing some intermittent fasting techniques. I am two and a half days into my first three day fast now. I feel fantastic, I had so much energy today at work I could hardly sit still. The ketogenic diet has certainly helped me, and Fasting only seems to helping since it pushes glucose even lower which is naturally offset with high ketone production. Thanks for the article

      • What a rockstar you are! I’m just now beginning trials with intermittent fasting. Have you read Dr. Fung’s new book on it? It is chock full of good information. Keep me posted on your progress. I’d be interested to hear about your results and experience.

    3. Hi, Gina.

      Does gluten restriction apply if there is no pain associated with its consumption, or is it a general principle to always try?

      Thanks,
      Reg

      • Unfortunately, yes. There are issues that gluten causes that have nothing to do with symptoms in the gut. It can present as neurological as well. I actually JUST posted about gluten and the gut in the science-y section. Check it out, I think it will explain some of this to you.

    4. I could just kiss you, Darlin’!! I had saved Part 1 on my computer and promptly lost it. Couldn’t remember where I got it from and just tried to eat more “naturally”. I had realized last Christmas that my homemade cookie binges made me extra foggy and pass out quickly. I love those cookies but, no more for me! I cut out pre made foods, Coke and switched from pastas to rice. I’m Italian so that was HARD.
      Then, surprise, I found part one! And read it, followed up on your website. Awesome stuff, makes perfect sense! I have two questions that I’m a bit worried about.
      1. I don’t crave food. I eat to live but I never “want” to eat. My husband cooks and tells me to eat. When he’s not home, I can go for 2 days forgetting to eat. Why?Why? I can’t come up with any reasons for it. The only time I want to eat is when it’s late at night. I munch everything then.
      2. What can we drink? I’m ALWAYS thirsty. I’ve had N since I was 2. I don’t eat meat well cooked because it’s too dry and I can’t swallow it then. I keep water with me always.
      Thank you so much for writing all this down. It really helps. I’ll let you know how my progress goes!

      • Oh, you cracked me up with that “Darlin'” comment! Love your enthusiasm!

        Hmmm…lack of food cravings…is this since restricting carbs or has this been something you’ve struggled with prior to a change in diet?

        What to drink: Water, broth (full sodium), no sugar added seltzer waters, kombucha…

    5. I am in tears, just read #2, having read #1 previously. As I said in my #1 comment, now I can really feel like I can almost touch this “renewed life”, there truly is light at the end of this nightmare I have been stuck in! Can’t wait for the next episode…dare I say hello Life ….goodbye narcolepsy….robber of life!! YOu have no idea how many times I have surfed the net for answers, just to repeatedly run into brick walls, w/nowhere to turn from there!! I truly praise God for you coming into my life, before it was too late!! May God bless you and yours richly!!

      • My goodness Nancy! I hope they were tears of happiness and hope. And YES, there is a light at the end of the nightmare you’ve been in. We’ll travel the road out of narcolepsy together and I can’t wait to see the adventures that are around the corner for you.

    6. Hi. I know you’ve got the disclaimers up here. I would just say that while ketosis is a “natural” state, it’s not exactly normal. The body thinks it’s starving. Being in ketosis long-term can cause complications and generally a person should be followed by a doctor to check on adequate nutrients, kidney stones, bicarb levels, etc. My son is on an extreme ketogenic diet to help control seizures, so I know it’s an effective tool. And I definitely advocate that those of us with narcolepsy find a healthy lifestyle that allows us to live. I’d be happy with low-carb for myself, but would never dare to experiment with ketosis.

      • Thank you for your comment Tarra!

        I’m glad to hear that you son’s seizures are under control though I’m sorry to hear that he has them in the first place.

        I understand your concerns and you are right in that the standard ketogenic diet can be extreme. The version of ketosis that I’ll be speaking of is a bit different though and is much more nutritionally dense than the standard, old school, ketogenic diet. This website will address these soon but for now the information that has been provided is just to get folks familiar with some of the terms and such and the potential affect these diets can have on narcolepsy symptoms.

        The direction this website will go towards is what is called “nutritional ketosis” where the body is shifted from burning carbs as fuel to burning fat instead but doing so in a different way than traditional ketogenic diets. Ketosis is achieved through carb restriction but rather than going extremely low carb to get to the ketogenic state, we will focus on using things like added fats and MCT’s (medium chain triglycerides) to achieve our goals. There will also be a strong focus on packing as many nutrients into the diet as possible so what carbs we do eat will be spent wisely.

        A good look at this form of ketosis is in the book The Wahls Protocol by Dr. Terry Wahls. The “Wahls Paleo Plus” part of her book is super close to the goals of this website. Another book that is close to what we will focus on is the book Bulletproof Diet by Dave Aspry. Again, the focus is on nutrient density.

        I hope you stick around and continue to comment. I love the interaction with my readers. I hope I’ve addressed your concerns, if not please feel free to speak up.

    7. Thank you for posting! I am reminded I didn’t get my brain back completely on my own. The rich community of pwn’s who posted and shared and educated helped me along the way, and let me know I wasn’t crazy (mostly). Props also go to Heidi Lindborg, where I first found some sanity about narcolepsy and gluten. Your website is a good resource for people searching for answers. Keep posting!

      • Thank you for your support Renee, it means quite a lot to me.

        Do you remember how hard it was to weed through all the mess of the internet and figure out what was legit, what might actually work, and all that mumbo jumbo? There were those few souls tarrying away and working hard to get the word out and thank goodness we saw their messages and took the information to heart. My life, as well as my son and mom’s lives, are all the richer because of them.

        My desperate hope is that by the end of it all, I’ll have provided a useful “User’s Manual” of sorts. An all inclusive site that covers the science, the diet specifics, and then the practical application of all that fabulous info….practical application as it applies specifically to us with narcolepsy. This is my daily prayer.

        Stay in touch, you are far to quiet these days. 🙂

    Leave a reply