Inside My Unmedicated Narcoleptic Life
Have you ever wondered what it might be like to have narcolepsy and be unmedicated? I have always said, that there is no wrong or right way in how we manage our narcolepsy symptoms, with or without meds. One is not better than the other.
Our stories and circumstances are all different and unique. This is simply my story. Here is a glimpse inside my unmedicated narcoleptic life.
Embracing the natural life
I am admittedly a bit of a granola mom. You might find me at home, huffing my essential oils, drinking my homemade bone broth, or composting in my backyard. We don’t have over-the-counter meds in our home except for some expired Benedryl.
This year, when we purchased a new home that came with an artisan well, I promptly bought water test strips, so I could constantly test my chlorine and fluoride-free water. If there was ever a candidate for wanting to take on narcolepsy, naturally, it was me.
Diagnosed with narcolepsy
I was 30 when I got my first symptom of narcolepsy. So I lived 30 years WITHOUT a single narcolepsy symptom. I still remember what it feels like to have full days worth of energy. I was diagnosed with narcolepsy with cataplexy when I was 32, and told my only option was a lifetime of meds. I immediately said no.
The leap from not even taking over-the-counter meds to daily prescription meds was too far for me to leap. Plus, I had already had some success in reducing my cataplexy and wanted to keep trying. So I started a journey that I am still on to this day.
Focusing on the possibilities
When I told my doctor I wanted to pursue lifestyle changes and natural options, he informed me that it was impossible. Reducing symptoms could only be done with meds. Apparently I am a bit of a rebel as well, because being told that I couldn’t accomplish my goal, was fuel to my fire.
So at 32, with 4 kids, and a supportive hubby, I started pursuing natural ways to relieve my symptoms. Some days it was 2 steps forward. Some days it was 2 steps back. Other days it was 1 step forward and 3 steps back. I failed more than I succeeded. But slowly, I started noticing changes.
So what did I do? I focused on the possible.
The overall health of my body, specifically my gut, brain health, and promoting quality sleep, were all things I could do.
A look into my daily habits
At first, I ignored the simple habits of life, telling myself that I needed something more dramatic to overcome my symptoms. I quickly realized that those daily, healthy habits are critical. Not because I have narcolepsy, but because I am human. So you will often find me guzzling water, eating my vegetables, at Crossfit moving my body, and doing everything I can to reduce and manage stress. These things may not seem important, but think what would happen to your body if you stopped drinking water?
I also focused on brain health by keeping my gut healthy, taking quality supplements with omegas, maintaining sleep schedules, and making sure I eat adequate amounts of protein. I limit alcohol and restrict sugar.
To sleep better at night, I watch what I eat at night, stay off bluescreens at night, take supplements, and have a super strict bedtime.
How am I doing now?
As far as my symptoms go...
- I used to have 25-35 cataplexy attacks a day. Now I have 2-3 a week.
- I used to have horrifying sleep paralysis 3-4 times a week. Now I only have it 2-3 times a month.
I still struggle with excessive daytime sleepiness, but find that when I stay low carb, I can overcome more of that.
There are, of course, other things that have led to my success, and I will continue to share those as we go along. But daily, healthy choices are a huge part of my success.
Again, there is no wrong or right way. What’s important to me, is that people with narcolepsy know that it is possible to be unmedicated and maintain or reduce symptoms, if that is something you want to try.
Do you feel that your doctor understands narcolepsy?