Diet for Narcolepsy – My Family’s Awakening

Diet for Narcolepsy – My Family’s Awakening

There was laughter, and there were tears, and hopefully even some laughter through the tears…

On Sunday, October 23, 2016 I had the honor of presenting my family’s story to the attendees of the 2016 Narcolepsy Network Conference in Orlando, Florida.

In this presentation I shared with the group how, with the help of diet and lifestyle changes, myself and my family with narcolepsy were able to reach new heights of wakefulness.  I shared our “before and after” story, including some of the diet changes we’ve made.  I also shared some of the research that led us down the diet for narcolepsy path and showed the attendees a comparison of a “healthy” diet compared to the diet for narcolepsy, as well as some easy changes they could make to ease some of their symptoms.

Here’s what some of the attendees said about the presentation:

B.E. said: Loved it. It’s already what I knew in theory that I should be doing, but your story of how it has changed your family is inspiring me to get started!

D.M. said:  We thoroughly enjoyed every bit of your presentation!! It was the best session with the most useful information for PWN and supporters! We just wish they had given you more time! Thank you for sharing your heartfelt story with us!

S.D. said: I thoroughly enjoyed your presentation! Your delivery was awesome and your compassion showed through. Thank you for sharing!

C.K. said: Thank you so much for all the hard work you put into sharing this information.  Your delivery was top notch and I could have listened to you all day!  Hope you will be there next year with more info!

I hope you enjoy watching this presentation as much as I enjoyed presenting it.
*Recording actually began 1 minute after I started speaking 🙁  You only missed me introducing myself though so no harm, no foul…right?!

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

The booklet that was made available to attendees with the full 3 part Science-y series on Diet for Narcolepsy, complete with references, can be downloaded HERE.

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

 

    14 Responses to Diet for Narcolepsy – My Family’s Awakening

    1. I think I’m about to write you a love letter! Thank You so much for putting all of this together. I have known intuitively and experientially that Carbs put me to sleep all my life. I knew this even before I was diagnosed with Narcolepsy in my early 40’s after YEARS of being misdiagnosed with Anxiety, Depression …blah blah blah. ( well, OK I WAS depressed but narcolepsy was largely why. I swear I slept through my 30’s ) Like you I have been on all the meds and they worked for a time but then the side effects became unbearable and so I stopped as of last spring.

      I always questioned how Xyrem worked because while I did get deeper sleep I also lost weight without radically changing my diet which was generally an accidental low carb diet. Now I understand how Xyrem was increasing fat burning in my body during sleep. Essentially Xyrem is adding exogenous ketones to my metabolism and supercharging ketosis. That is my layman’s analysis anyway.

      I am eating a nutritional ketogenic diet intentionally these days and NOW I can explain the science -y reasons to people for why I am doing what I am.

    2. Hi Gina, I have just tecently come across your name through joining Narcolepsy Ireland, although I have been in the Narcolepsy UK site for a few years but didn’t come across much about your ideas.
      I’ve had Narcolepsy since as long as I remember, I’m 54, had it quite bad in my mid 20’s, was diagnosed then and medicated but the side effects didn’t suit my lifestyle so I went for about 20 odd years coping/ managing while getting on with my career.
      About 8 ago, at age 46, the symptoms came back much stronger to the point that by 2012, I could no longer cope so had to retire.
      Although I have seen your exact programme, we do have quite a healthy diet where carbs, i.e. Bread/Pasta are non existent. My wife has IBS so we virtually have cut gluten out. I do love chocolate but eat dark 70% cocoa type to at least try to mitigate that sugar and carb intake. Due to anxiety and mood issues I have stopped Dexamphetamine recently but immediately have started putting in weight and exercise has decreased also due to tiredness and pain.
      I take WAKIX/ Pitisilant as my main drug though I also has RLS so am on opiates for that.
      Unfortunately, living in England, I am unlikely to get to Portland, shame i hadn’t heard of you last year as I have a good friend lives in Orlando so I could have cut the. Pay by staying with him. Do you think the opiates would complicate matters on the Ketogenic diet?
      I am keen to follow your videos when available though concerned about the opiates causing problems.

      • I had a blast presenting to the Ireland group. They are such an amazing group of people.

        Your diet sounds pretty spot on but could likely use a bit of tweaking. There are some files in the Ireland group that will walk you through some of the steps.

        As far as opiate go, I approach them the same as I do with ALL medications. Go to http://www.drugs.com and get familiar with the side effects of all our medications. Have a step down plan in place with your doctor, even if you don’t think there will be a need for it. Too many times, I see folks change their diet and their meds become too high a dose because the diet helps with some of their symptoms…even the non-narcolepsy ones. Being aware of the side effects will allow you to slowly step down on meds till you find a balance that is right for you.

        I hope this helps answer your questions. If not please email me at madcapnarcolepsy@gmail.com

    3. Thank you for doing what you do. For me, my cataplexy is the most debilitating symptom of narcolepsy. Do you or anyone you know experience relief of cataplexy through this diet? How does the science apply?

      • I’ve had many in our Keto PWN Facebook group state that their cataplexy is either less or gone. And then there are others that say it is unchanged but that their other symptoms are less.

        Mostly, as far as science goes, a ketogenic diet can help consolidate your sleep to the point that it is more restful… thereby, in theory, helping cataplexy not be as prevalent. Also, Xyrem is a form of gamma-hydroxybutyrate and ketones (produced when on a ketogenic diet) produce beta-hydroxybutyrate… they are similar enough that we warn folks that their Xyrem doses may get to be too strong when combined with the diet. Since Xyrem is prescribed for cataplexy, it stands to reason that a ketogenic diet should help.

        I know this sounds like a bit of a wishy washy answer but you have to realize that we are pioneers in using diet to mitigate our symptoms.

    4. I don’t know where to begin…
      Basically, you are confirming everything I am learning. I have not been well since about age 14 or 16 and I’m 62 now. I remember struggling to stay awake just to be able to read books to my children. I’m an RN, married over 40 years to the husband of my youth. We have raised 5 daughters, and so far have added 4 sons in law and 5 grandchildren to our family. I too am being healed and delivered of so many things, including narcolepsy, celiac disease, Hashimoto’s thyroiditis, Chronic Fatigue Syndrome from Epstein-Barr virus, depression, brain fog, low self esteem. God is drawing me closer to Him in the process. It’s not only my awakening and my family’s awakening, but a great spiritual awakening is in our midst! It’s great to feel awake and alive! Now I can live my life more fully and pursue my calling in a much deeper way!

      I do have one question about the diet. What about casein and dairy? I’m ok with the butter but think ghee may be better. I use almond milk or coconut milk in place of regular cow’s milk. What about the cheeses, yogurt, and cottage cheese? I haven’t eaten these things in a couple of years or so. That’s when I was first diagnosed with my 4 autoimmune disorders. I’m not clear on these things in this diet. Can you clarify please?

      I would love to get the booklet you were talking about in this video. Is there a way I can download it, or how can I get it?

      Thank you very much and may God continue to bless you and your work!

    5. Hi Gina,

      Thank you so much for sharing/posting this video. I was diagnosed with narcolepsy 15years ago & similar to you I researched it way back & came across the zombie institute too! At that point I was so overwhelmed by the disorder itself and as a teenager the information I was reading just added to that feeling & I felt angry & confused about the idea of being able to treat my own symptoms when my “specialist” could not. As a result I did nothing more about it & have learnt to live my life around N and just deal with it.
      I’ve actually seen your name pop up a lot on a fbook group I’m a member, but now having heard your story I regret not having followed you up sooner. So many times I’ve thought about cutting out carbs and gluten, but then complacency, laziness or just the fear of how difficult it will be (I love bread and chocolate!!) had me convincing myself that id rather just keep eating what I enjoy and continue functioning how I am. What hit home the hardest for me was the 365+ hours a year that I am throwing away and for what?!! For bread and chocolate??! When you put it that way it feels so pathetic!!!
      The 365+ hours a year is really just the beginning once I added on another 365 hours that I am only really half awake/present not to mention the lack of zeal and energy I used to have as a younger woman. I am a very visual person so I am going to put a big picture on my fridge & as my phone screen that says 365 to remind me what I am giving up, but more importantly what I am fighting to get back. Looking forward to reading more. Thank you for your honesty and vulnerability in sharing your story – I so appreciate it!

      • Oh Alexis! I’m so glad the 365+ example resonated with you! There was once a point where I was so, so ready to give up because I thought the percentage of improvement I was seeing just wasn’t big enough for all the effort I had to put in to get it. But when I figured up the time I was gaining from my efforts it all became worth it, so so worth it!

        I’m glad you are interested in joining me in this journey. I’ll be launching a program soon that will walk you step by step through this process (for a small fee). I’ll also post the same information (in a less formal way) here on this site for free. So stay tuned!

    6. Thank you, for your efforts and hard work. This is such a confusing and life altering chronic desease. Any data is good to have.

    7. Thank you so much for sharing. I am 22 years old diagnosed with narcolepsy with cataplexy. I have felt noticeable symptoms for 2 or 3 years. I have an undergrad in psychology magna cum laude. We learned about studies done last year showing that serotonin is produced in the gut. It was so fascinating and is so new to the science community. I sympathize with your family’s story and am so happy you’re doing well.

      • Hi Leah! Yeah, learning that neurotransmitters are produced in the gut set me to thinking about food in a whole different way.

        I hope you stay tuned as I start talking about the diet and the specifics on HOW to do it…perhaps we can get you seeing less symptoms. 🙂

    Leave a reply