Diet and Narcolepsy

I realize this won’t exactly pertain to most of my readers, but on the off chance someone could find it in a search and be helped, I am posting it anyway. The rest of us could use this story as a reminder of the power of our diet!

As some of you know, my husband has narcolepsy. I realize most people’s knowledge of narcolepsy is limited to a silly scene from a movie. But, it is something my husband has struggled with for many years.  He has sleep apnea and cataplexy also.

He so struggled with his condition that when we got married he didn’t want to have kids because it is possibly genetic. I responded with, “I’m sure glad your parents had you!” Point made. He’s such a good father, and our kids are amazing, I’m glad he changed his mind on that. 

Up until recently his doctor has told him that he had the most severe case of narcolepsy he’d ever seen (he is a sleep disorder specialist). My husband, even while on medications, was prone to multiple naps daily, the sudden, uncontrollable urge to sleep (needing to pull over while driving even and take a nap), and episodes of cataplexy. Basically cataplexy is when he had a sudden surge of emotion, happy, angry, or even someone telling a funny joke, he would lose all muscle control, so he basically fell over and his muscles became stiff and he couldn’t move although he is awake and alert in his mind and can hear what is going on around him, he appears to be out cold. This used to happen to him on a daily, sometimes multiple times, basis. He had many other minor symptoms, but as you can imagine this was a pretty life altering condition.

The first thing that changed his life was the medication Xyrem. This medication helped a lot. If you have narcolepsy and don’t take that, check with your doctor. 

The second thing that has made a world of difference is he changed his diet. I had noticed from simply observing his reactions after he ate certain foods that sugar and most carbs had a profound effect on him. After eating a carb heavy meal or sugary treat, he would immediately have to nap. Like borderline coma nap.  Sugar and carbs also seemed to overall worsen his condition. Finally after 8 years of marriage he decided I just might be right (can I have that in writing dear?).

Last January he gave up sugar (he was a mtn dew addict) and most carbs (especially the unhealthy processed ones). He eats meats, dairy, eggs, nuts, beans, fruits, vegetables, and occasionally oatmeal with protein powder. He does not eat starchy vegetables like corn and potatoes, sugar, or wheat of any kind. He tends to limit higher sugar fruits like tropical fruits and he also doesn’t drink alcohol. First thing that happened was he lost 35 pounds in like two months. Can you say jealous? The next thing that happened was more amazing than that: there was a night and day change in his narcolepsy symptoms. He is alert and awake all day and hasn’t suffered a cataplexy episode in months. He is a new person! I don’t think I could stress enough how amazing this is. We’re not sure what it is about the foods he is avoiding, whether it’s a gluten related thing, or insulin, or what, but the difference is profound. Regardless of the why, the results he has seen has made my little carb/sugar addict hubby swear these things off. Hooray!

The lesson I have learned here is that a healthy diet is so important to everyone. Whether we have a medical condition or not we need to pay attention to how foods are making us feel, how we are reacting to them. One of my current goals is to pay more attention. It’s amazing how we can all just trudge along feeling like crap and never realize it’s related to what we’re eating. Through simply paying attention we can find what works for us as individuals, in our diets and our workouts. I think doing this and not just what everyone else preaches is more important than anything.

Now, I just gotta convince him how much better he’d feel from a little cardio and weights…oh dear….

I am just a blogger, not a doctor, trainer, or any sort of professional. What you read here are my personal experiences and opinions. Of course, always consult your doctor before trying a diet, supplement, or new workout program.