So, I’ve got a theory about stopping the ketogenic diet. It is a theory that I am ready to test out; my mind is more powerful than my body. You see, my whole life I’ve worked to try to fix my body, trying to do things to it to make it better, to change it. For as long as I can remember, I have fought with my body. Today I’ve decided to surrender.
My parents and I searched for something to explain my insurmountable sleepiness and lack of energy. When I was about 13 years old, I was diagnosed with narcolepsy. Narcolepsy is a neurological disorder that disturbs the sleep-wake cycle. But little did I know, its more than just feeling sleepy. I took that diagnosis and wrapped it around me like a security blanket. It was the explanation for why I felt so awful, and it became my identity.
Year after year, we tried treatment options to improve my wakefulness, none of them worked. Deep down, maybe I didn’t want them to work. Perhaps I didn’t believe they would work. I don’t know how I felt or what I believed. I was just a kid. But looking back I know I couldn’t imagine feeling any better, so it would have been difficult to allow myself to.
I felt like I had been dealt a bad hand in life, but I kept doing what I believed I was supposed to be doing anyway. When I graduated from college, I got a real job. I realized I was functioning in life. Eventually, I started to believe I could do more. However, I began getting some debilitating headaches. The doctor called them cluster headaches because they came out of nowhere and were so intense there was no possible way to function when they were around. Now I think of this as the signal my body was sending me that it was time to do more to feel better.
I finally got some decent treatment for narcolepsy as a result of those headaches. I started taking Xyrem that is a quite controversial medication, and there are a lot of requirements you have to meet to take it.
You cannot under any circumstance, drink alcohol, and you cannot eat for 2 hours before taking the medication. Many more rules require a training DVD and phone calls from the company that you have to complete before the drug is delivered. There is a fancy measuring tool, individual cups, and a titration schedule to adapt to the medication.
All of these steps, I think, helped me believe that the treatment was going to work. It had to work, or why would so many people put up with all of these limitations and various side effects.
Did it work?
It did work for me. I slept like I had never slept before, and it felt amazing! In the mornings, after the hangover feeling wore off, I would feel like a new person! I could make it through whole days without feeling sleep attacks in the corners of my mind and without the brain fog!
I lost a lot of weight, food was repulsive to me, but I had to choke it down. However, my life was a million times better than it had been without it. Once the doctor wanted to lower my dose due to weight loss. I cried because I believed I wouldn’t feel right without my full prescription. I thought the medicine was crucial for my survival.
After about a year of restorative sleep, I began to believe I wanted more for my life. I started looking at getting jobs abroad. Unfortunately, my medication was illegal in many countries. Luckily, it wasn’t illegal in Spain, and soon enough I was packed up to head there. I took a lot of the medication with me with the expectation that I would be able to get more once I established a doctor there.
However, that wasn’t the case. The doctor only wanted to prescribe me a stimulant and recommended some lifestyle changes. I tried it because I was happy, and I believed this Spanish doctor must know so much more than the American doctors. And it worked.
Starting the Keto Diet
The keto diet was AMAZING. I immediately had to start cutting back on the medication I was taking because it was way too much on my new eating regiment, the ketogenic diet. I gained muscle and felt more fit and healthy than ever before. Eventually, I was only taking the Xyrem because it seemed like a crime to throw away this precious liquid that had a value of about $3,000 a bottle.
For the last four years, I believed in the keto diet. I never would have thought of stopping the ketogenic diet! It became my lifestyle. Avoiding sugar, rice, and noodles was the easy part. A 12-year vegetarian, I began eating meat. I have been terrified of the side effects of “messing up” on the diet. I am living my dream, traveling the world, and working online. The only negative is how difficult it can sometimes be to follow the way of eating (WOE), and I miss out on experiences because I am so afraid even to try one bite of rice, noodles, or anything containing gluten.
Do I need keto?
But now I am starting to call it all into question again. Did the keto diet work for me because I needed it to, and believed that it would? Does eating carbs make me feel sleepy because I believe that it will? I have done a few random tests of this over the past months, and it seems like its possible my body doesn’t need keto, but my belief system has a hard time with change.
As of today, I am changing my beliefs. I believe I can eat a balanced, healthy diet, and feel even better than I did on keto. I will feel better because I will have more variety in my diet, I will be able to try new foods that I have denied myself, and I will continuously be saying YES instead of NO. Now, I’m not going to return to eating processed crap all the time. And I’m not going to eat whole loaves of bread. I plan to start with rice and some more carb heavy natural foods like chickpeas and sweet potatoes. I will cut back fat, but I won’t be afraid of it.
Stopping the Ketogenic Diet
I think I am ready for this because, throughout this process, I have learned self-control. Stopping the ketogenic diet is a tough decision, but I have to see what happens. I have learned to understand the value of fresh ingredients, and I have a much better understanding of nutrition than I did before going keto. But more than anything, I have learned to shift my belief systems. I am learning to believe that my body is fantastic, but my mind is even better. I think that I can be even happier and healthier than I am now by saying “yes” more and saying “no” less.
So here is my farewell to keto. It’s been great!
Disclaimer: I, by no means, want to discount the value of the keto diet! If you haven’t tried it and you are stuck, I highly recommend it, and I suggest starting with Madcap Narcolepsy’s program.
If you want to learn more about how to shift your mindset to improve your life, sign up for a free life coaching consultation call!
4 thoughts on “Breaking up with Keto – Stopping the Ketogenic Diet”
As a narcoleptics who is also a big fan of keto I was looking forward to this post. I was disappointed to hear another person simplifying so many things. Firstly, carbs ARE actually a problem for narcoleptics because our bodies are always thinking we need to hang onto sources of energy for later (even if it’s not actually the care).
Biggest thing I wish you had looked into is the link between hypocretin/orexin levels and sleepiness AND obesity. Turns out studies she the less you have the more prone to obesity you are and us narcoleptics have next to none. After all it is the killing off of this that is what causes our symptoms.
I like hearing about how diet helps but I think you are in the edge of sounding like one of those people who tries to tell narcoleptics just to eat less, sleep more, excercise at this time etc etc and we will be “cured”.
I eat keto and take xyrem and take stimulants during the day and still cannot work part time so I think your sweeping statements are very limited to cases of mild narcolepsy like yours.
I am curious, do you get cataplexy?
Hi Kristin, I’m sorry to hear that you are not experiencing relief with both keto and Xyrem. I hope you will continue trying new things and speaking up about what is important to you!
Thanks for calling my attention to this post! I do not want to come off as someone who believes people with narcolepsy should “eat less, sleep more, exercise at this time etc etc and we will be cured.” That is not my goal at all. I aim to be a resource for people who are willing to try ANYTHING to empower themselves and take control of their lives. I think everyone has their own journey to go on to find out what works for them. This post from 2018 was just a part of the journey. For me, emotional healing was a HUGE chunk of what needed to be healed to feel better.
I do not think there is such thing as a “case of mild narcolepsy like yours”. I believe we all have ups and downs throughout our life. Right now, I’m grateful to be doing really well. I talk about it to give hope to those who might be feeling hopeless. I have 20+ years of experience with narcolepsy and for at least 15 of them, it consumed my entire life.
When it comes to the science of keto, I understand enough of it to take care of myself, but I refer anyone interested to someone I consider an expert, http://madcapnarcolepsy.com/introducing-the-madcap-diet-for-narcolepsy-diet-basics-series/
The truth is, I should do an update after these old posts. This break up was back in December 2018, and if my memory serves me well, it lasted maybe 3 months. I still do keto and I encourage anyone willing to try it to REDUCE symptoms. I do not see it as a cure. This breakup caused more of a mindset shift than anything else. I no longer see eating keto as a restriction, and rather an expression of self-love. I eat well because I deserve it. I would love to discuss further with you, feel free to email me if you want to set up a time to chat on Zoom. email@example.com
I do have mild cataplexy, but it is mostly handled by mindfulness, breathing, emotional awareness/ healing, and managing fatigue. It happens from time to time but no longer affects my quality of life.
I hope this answers your questions! Sending lots of love and light your way!
I don’t have narcolepsy but hypotonia. There are studies that keto creates hydroxy butyrate which is a similar compound to GHB. Their Also studying its effects on orexin and It increases it as well as BDNF. All this is fantastic for sleep disorders. It’s helped me sleep much deeper and better -my heart anginas gone -I wake up at 6am ok and not hung over. If left to sleep now without an alarm clock I only stay asleep fir 7 hours vs 13 keeps hard. I’m in Germany and traveling around Europe not getting ti chow down on gelato and Italian and fresh food sucks. But at least I can enjoy my time here because I’m not sleeping so much and foggy headed. I saw your comment that you went back to keto. I’d love to read an update on how your doing.
Thanks for sharing and commenting, Melissa! Yes the scientific studies on the ketogenic diet are pretty amazing! I’m so glad it is helping you so much!
I can definitely relate to travelling and not experiencing all of the typical famous foods, but feeling its worth it. I went to Italy without eating pasta, gelato, and got yelled at by a chef for only eating the cheese and toppings off of his famous pizza haha!
As far as my update, I have been flip-flopping, to be honest. I am not sure why but my body seems to need carbs these past weeks and I’m trying to listen to my body. So far it is not impacting my sleep and I’m learning to accept that my body may need different things at different times.
That being said, I’m eating the natural carbs, not the processed foods I would have eaten pre-keto. Meaning whole oats, sweet potatoes, fruit, a little rice, that previously were complete “no way” for me. I still support keto as a great way to heal the gut and support a more energetic lifestyle! Just trying to be honest and transparent here! 😀
I will always encourage individuals to listen to their own body. We are all only the experts on ourselves. You are the expert on you, so you know what supports you best!