This past Sunday, I had the honor of presenting my family’s story to the attendees of the 2016 Narcolepsy Network Conference in Orlando, Florida.
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. In my presentation 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.
There was laughter, and there were tears, and hopefully even some laughter through the tears…
If you weren’t able to attend the conference or if you were there but didn’t make it to my presentation… you’re in luck! My son recorded everything! I’ll have a video uploaded for you by next Tuesday at the latest, maybe sooner. The booklet that was available to attendees with the full 3 part Science-y series on Diet for Narcolepsy, complete with references, will also be uploaded for you to print out for yourselves.
I can’t wait to share this presentation with all of you on the interwebs. I hope you enjoy watching it as much as I enjoyed presenting it.
Your Madcap Miss (a.k.a. Gina Dennis)
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.
Hi again
Thank you very much for your reply. sorry for my lagged unswer. All that you say makes sense and i am already trying some diet with reduced carbs. However, i dont see much progress and i still deal with a big fragmentation sleep issue. Do you have a more specific diet or recomendation? Do you take any probiotics, Omega III or any other supplement?
Most recently I noticed some changes in the “gut”, mainly those related with the diggestion process (does it have ane relation with the changes in the micro organisms that help to process the food, due to the diet I’m envolved with?)-
We are anxiously waiting for the next chapters of your journey.
José Pedro,
Inês`s husband 🙂
Hello Ines and Jose!
Our bodies fuel on carbs and fats. When a person with narcolepsy reduces carbs they are able to keep their small supply of orexin/hypocretin active. BUT we still need an energy source and that’s where healthy fats can help. I have a blog post coming out on this in an upcoming series on how to make dietary changes. I actually spoke on this topic at last year’s Narcolepsy Network conference. You can watch that here: https://www.youtube.com/watch?v=5kS5XUQp70Y&t=131s.
As far as your question about the gut… I would need to know more information on the dietary changes you have made in order to give you a more educated answer. Feel free to email me at madcapnarcolepsy@gmail.com and we can address this question of yours.
Supplements… I do take a probiotic as well as drink 2 cups of bone broth a day. That is the extent of my supplement regimen.
Thank you for commenting. I hope to hear from you soon.
Do you have your diet plan ready yet
It is in the works as we speak. 🙂
Hi!
My name is Agnes, i´m portuguese wife of a narcoleptic. I am truly interested in understanding what you learned about diet and narcolepsy.I also think there are many things we can improve!
I will wait for the publication and give you my feedback
Thank you so much!
Inês
I’m so glad to have you along for the ride Agnes. Kudos to you for being supportive of your PWN (person with narcolepsy), there are so many out there that don’t have that blessing.
I’ve just finished the 3 part series that shows you the science-y bits that I think help explain why my family and I follow the diet we are on. Check them out here:
Part 1: Orexin https://madcapnarcolepsy.com/diet-for-narcolepsy-a-scientific-view-from-30000-feet-part-1-orexin/
Part 2: Carb Control https://madcapnarcolepsy.com/diet-for-narcolepsy-a-science-y-view-from-30000-feet-part-2-carbohydrate-control/
Part 3: The Gut Connection https://madcapnarcolepsy.com/diet-for-narcolepsy-a-science-y-view-from-30000-feet-part-3-the-gut-connection/
Feel free to ask questions, I’m happy to assist.