Losing Weight as a Narcoleptic

Last updated: January 2022

Just 2 years ago, at the peak of my narcolepsy symptom severity, I was at my highest weight ever. My BMI put me in the “morbidly obese” category, and I knew something had to change. I could never feel satiated from food, and I often ate a great deal at night in an unconscious attempt to stay awake.

Finding the right narcolepsy treatment plan

When I started Wakix, my excessive daytime sleepiness was reduced, but I still felt the need to overeat at night. The bingeing urges were easier to fight, though. Because of this, once I was on the right treatment plan, I was able to start losing weight.

So far, it has taken me a year and a half to lose 80+ pounds. I only have 20 pounds to go before my BMI is in the healthy range! It’s crazy what treating your narcolepsy symptoms will do for your mental and physical health. I want to emphasize that none of this would have been possible for me with poorly treated narcolepsy or no treatment at all.

Including lifestyle changes

On top of a good treatment plan, I have integrated a few key lifestyle adjustments that have helped me to maintain weight loss with a chronic illness like narcolepsy. For me, these include:

  1. Getting in some exercise at least once per day – even if it’s only 5 minutes!!!
  2. One of the best ways to ensure that I accomplish my goals is to set small, achievable goals. This enables me to be able to stick to them even on “bad” days (which are more frequent than I would like). At the very least, if I’ve had a long day and realize that I’ve been sitting for most of it, I can lift my weights or do leg lifts for 5 minutes and still call it a success.

  3. Counting calories
  4. Using the MyFitnessPal app, I log every calorie that enters my mouth. At first, it was really hard to cut down my portion sizes and keep track of what I was eating. Once I got a scale and some more experience counting calories, it became like second nature. In the beginning, the most important thing for me was to keep myself completely accountable, even (and especially!) if it meant recording binges.

  5. Eating a high protein diet during the day
  6. For me, carbs are for nighttime ONLY. Protein drinks and protein bars eaten in the morning and midday help me stay satiated without getting the “crash” that sugar and carbohydrates result in. I save my fatty and carbohydrate-rich foods for the end of the day. This is also when I eat the bulk of my calories. Both of these strategies allow me to maintain a higher level of alertness during the day. I don’t know why it works for me, it just does!

Improving my treatment plan helped with weight loss

Overall, weight loss is a marathon rather than a sprint. It took an improved treatment plan for my narcolepsy for this to have ever been possible – I just want to make that clear.

Have you ever struggled with your weight due to your narcolepsy?

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