5 Things You Can Do NOW to Manage Narcolepsy

Can Narcolepsy be cured?

Of course we know at this point, that is not possible.  But there are so many different narcolepsy treatments available, we don’t have to give up.  Everyone has to find the narcolepsy treatment options that work for them! Some people choose to treat narcolepsy naturally.  There are ways for us to mitigate our symptoms without taking narcolepsy medication. We want to beat the brain fog, fight fatigue, and take back control over how we feel.  This list is about short-term goals!  Try one or more of them NOW!

Learn what works for you!

Any and all tips or advice I offer are things that work for SOME people. We all have to pick and choose what is good for us and create our own recipe for success!

Be willing to change.

It may be a change in mindset or a change in diet but there are changes you can make that will help you feel better. Do it for yourself!  Ask yourself, “What am I willing to sacrifice to feel better?” You may have to consider options that in the past you said you would never do in order to manage narcolepsy.  Remember that progress is made my stepping outside of your comfort zone!

Please don’t give up!

There is a never-ending source of information about non-traditional treatments for narcolepsy at your fingertips. Use it and the community to search endlessly for ways to feel better! As you peel away the layers of sleepiness, you will become more and more awake and able to learn new things.  The more you learn, the more ideas you can try out! Here is a suggested list of what you may want to start with.

alarm clock next to bed for sleep hygiene
Image by 1388843 from Pixabay

1. Master proper sleep hygiene.

This is important for human beings in general but it is even more important for people with narcolepsy.  These tips can help reduce some of the excessive daytime sleepiness associated with narcolepsy.  Maybe it is not the same for everyone but these are the key points I see resonating in the narcolepsy community:

  1. Try to establish a formal sleep schedule, shoot for the same number of hours of sleep each night and try to go to bed and get up at the same time
  2. Use your bed only for sleep and get up after your alarm goes off in the morning
  3. Don’t use stimulants like caffeine or electronics with bright lights like TV or your cell phone before bed
  4. Try to take short naps, only 20-30 minutes

2. Delete negative messages or influences from your life!

Positive thinking or optimism is a must. You have to know you CAN deal with what you have.  That may require you to ask for help, or take things off your plate.  You have to decide that YOU are in control and can find a way to live well. Surround yourself with positive messages, practice positive affirmations, and follow hashtags or pages with positive messages. Research shows that we are constantly comparing ourselves to what we see on social media, so the best thing to do may be to delete it! But if that is not an option, make it a positive space for yourself!

3. Cut out sources of stress

And find ways to manage your stress. In my case this involves reiki, tapping, and just taking time out for myself to create art or read a book. In order to make that time, sometimes we have to remove things from our plate. I used to try to go to the gym regularly until I accepted that I didn’t enjoy it at all and it left me physically too depleted to enjoy my evening. Instead, I do short little yoga practices at home.  Maybe you have the opposite experience, so do what works for you! Cut out what drains you and commit to things that help you feel energized!

Image by 1388843 from Pixabay

4. Be grateful.

Something as simple as keeping a gratitude journal is being analyzed scientifically and in this study even delves specifically into people with neuro-muscular  disease.  Although it is not Narcolepsy, it certainly is a challenging thing to deal with and those individuals appear to benefit most from the exercise. You can also take a few minutes each day to savor the positive things around you. There are so many ways to do this! You may take photos of natural beauty you see around you or sit and listen to some birds in the park, whatever it is, take a few moments to enjoy your life. Later, reflect on the things that make you happy by replaying those moments in your head.

two women laying on old car laughing
Image by Free-Photos from Pixabay

5. Meditate or be mindful.

These tools have allowed me to quiet my mind, feel more centered and in control of myself, and even get better quality sleep!  Dawn from Going Beyond Coping has made an amazing adapted method if you are intimidated by mindfulness practices this could be the answer for you!  This paper shows that mind wandering makes us feel bad and concludes that average people mind wander 46.9% of the time! As a person with narcolepsy, I wonder if mine was even worse before discovering mindfulness techniques.  The physical and mental health benefits of meditation are real and long lasting!  It can increase grey matter in the brain, improve memory, and help you feel more socially connected!

red heart drawn on white paper with pastels in box
Photo by kaboompics via Pixabay

Each one of these chips away at the layers of sleepiness and fog that we walk through every day.  You can drop what you are doing and try any of them right now. They may not be formally recognized narcolepsy treatments, but I believe all of them help to relieve the stress that exacerbates our symptoms. Anyone you know that is not happy tends to be tired, so it makes sense that as people with narcolepsy we also have to work toward happiness to reduce our fatigue.

Research about Mindfulness and Happiness

These studies were presented to me in a free course I am taking on CourseRA called The Science of Well-Being at Yale University . If you are a lover of learning, I highly recommend the course!

  1. Vogel et al. (2014). Social comparison, social media, and self-esteem. Psychology of Popular Media Culture, 3(4), 206-222.
  2. Jose et al. (2012). Does savoring increase happiness? A daily diary study. The Journal of Positive Psychology, 7(3), 176-187.
  3. Killingsworth & Gilbert (2010).A wandering mind is an unhappy mind. Science, 330(6006), 932–932.
  4. Mason et al. (2007).Wandering minds: The default network and stimulus-independent thought. Science,315(5810), 393–395.
  5. Brewer et al. (2011).Meditation experience is associated with differences in default mode network activity and connectivity. Proceedings of the National Academy of Sciences of the United States of America, 108(50), 20254-20259.
  6. Fredrickson et al. (2008).Open hearts build lives: positive emotions, induced through loving-kindness meditation, build consequential personal resources. Journal of personality and social psychology, 95(5), 1045-1062.
  7. Hölzel et al. (2011).Mindfulness practice leads to increases in regional brain gray matter density. Psychiatry Research: Neuroimaging, 191(1), 36-43.
  8. Mrazek et al. (2013).Mindfulness training improves working memory capacity and GRE performance while reducing mind wandering. Psychological science, 24(5), 776-781.
  9. Hutcherson et al. (2008).Loving-kindness meditation increases social connectedness. Emotion, 8(5), 720.

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