There is no perfect diet for narcolepsy, just like there is no perfect pill for it. But food is an important part of my narcolepsy symptom management. So how you can find out what is the best narcolepsy diet for you?
While I don’t believe there is any specific diet that works for everyone, there is a lot of evidence that the ketogenic diet is good for narcolepsy. But we are still all unique individuals. I believe some of this could be due to our metabolic types. Some people have a harder time processing carbs than others, and those are generally the people who benefit from keto. It makes sense that some of them would have narcolepsy, but that not everyone with narcolepsy has this same metabolic type.
You have to experiment and find out what works for you. If you feel you are sleepier after eating carbs, the ketogenic diet (keto) is a great place to start looking. Especially if you are looking for drastic results. If you don’t know where to begin, I recommend the facebook group, Madcap Keto for Narcolepsy. It’s a supportive community and has the information to get started from square one. You will appreciate the support, as the ketogenic diet is not for the faint of heart.
Accept that you can change
I have shared my own experience with keto in the past and even a controversial break-up story. Many have been asking me for updates since that article because I did in the end return to a low carb lifestyle, not because of my energy levels but because I couldn’t fit into my clothes! There wasn’t any other diet for narcolepsy that I wanted to try, so I continued with keto…. for a while.
It’s important to accept that no matter what lifestyle we choose to follow, we are allowed to change it. It doesn’t have to be for life, and if it feels like a life sentence it may be time for an update.
I have been struggling to write my follow-up because I’m constantly adjusting and re-evaluating! But here is what’s true at this moment in time.
Introducing More Healthy Carbs
Over the past few years, I have been introducing more and more healthy carbs into my diet. At first, that was mostly lentils or dal, as I have naturally returned to eating vegetarian. I was a vegetarian from around age 12 until I started keto at 24. It is my preferred way of eating. But this time it’s completely different than before. I still do not regularly eat any of the processed carbs I ate before going keto. I stay away from gluten, corn, rice, bread, and pasta. But occasionally, if I’m really craving something, I know I can have it without “getting kicked out of ketosis.”
Low Carb Vegetarian
I found it tough to be keto and vegetarian, but when switching to low carb instead of keto, I had more options. I still eat a lot of eggs and dairy to get my protein. I’ve been eating mainly Indian dishes for a few years now. They have a variety of ingredients known to be anti-inflammatory and good for the immune system like ginger, garlic, and turmeric. I believe these also play in role in my health.
As I added in these carbohydrates, I was careful. I started with small quantities, watched my energy levels, and worked on the mindset behind eating carbohydrates that I had adopted in over four years of strict ketogenic eating. As a life coach, I knew I had to reprogram the beliefs that eating carbs would rob my energy. Otherwise, my subconscious mind and my conscious mind would be in two different places on their beliefs about food, which causes a lot of confusion. So, I retrained myself to believe that my body knows how to turn food into energy. Now, I don’t have to overthink food or count carbs.
When dal seemed to be okay, I introduced the tropical fruits that are lowest on the glycemic index. I started eating guava regularly, jack fruit, dragon fruit, all of them felt like an incredible indulgence after years of practically avoiding fruit like the plague. And I still felt great!
This is NOT to say that keto is not effective. I truly believe it healed my gut, and got me into the mindset that I CAN DO THINGS DOCTORS DON’T BELIEVE IN. I know the science behind keto is good, and I’m not telling anyone else to stop following it.
But I Am No Longer Following the Ketogenic Diet for Narcolepsy, even if I still keep an eye on my carb intake.
Everyone has their own path, and I believe keto was a HUGE step on my journey to thriving with narcolepsy. I feel like the ketogenic diet was a training for me in a way. Now I know how I want my body to feel, and I can listen to my body in a way I couldn’t before. I also look at portions completely differently after tracking for so many years, and I still can’t even dream of adding sugar to anything.
Now I am working on Intuitive Eating. It’s about eating what feels right, without any negative emotions like guilt or shame. When I was on keto, a lot of my thoughts were toxic, and I know that is on me. I felt so much shame and blame when I slipped off the path. And I honestly didn’t feel good about eating meat.
I originally accepted keto with a “food is medicine” attitude. The problem was I still had the belief “I need this medicine.” As a person who loves to have 100% freedom, it wasn’t fitting with my values. I found myself in so many situations in Asia where it was difficult to maintain my preferred diet. In group settings or tours, meals are often fixed and consist mostly of carbohydrates. I didn’t like the feeling of missing out or denying myself trying some new food because I was afraid of the side effects. So just like travel led me to stop taking medicine, it led me to stretch my imagination about what the best diet for narcolepsy might be.
Now, I can eat whatever I want as long as I feel good about it. It requires some self-awareness, and trust in my own intuition. If a meal is served with carbs and I feel like my body has no objection to it, then I eat it. If I feel that there is an emotion underneath, I wait a while. Sometimes it passes, and other times I forgo the carbs trusting that my body knows what is best.
Eating more whole foods
As I released my beliefs about being strictly keto, I began to fuel my body with more and more organic whole foods. I let go of all the “keto” products that I was attached to. When I stopped eating Quest bars and taking protein powders, I was amazed that once again I felt even better. The less processed food I ate, the better it got. I eventually stopped buying cream cheese, sugar-free products, and keto alternatives to things like ice cream to focus on whole healthy foods.
So is keto the best diet for narcolepsy?
I guess that is not for me to say, it’s up to you to decide. It certainly helped with mine for a number of years. However, if it isn’t right for you, that doesn’t mean diet can’t play a role in mitigating your symptoms. There is so much more to nutrition than just macros like fat, protein, and carbohydrates. You could try things like reducing your sugar intake, committing to less processed food, buying organic, or intuitively eating only what feels right in that moment.
You can decide what the best diet is for you, and it doesn’t have to be what everyone else is doing. Listen to your body and trust what you know about yourself. You are the expert on you!