How to Treat Narcolepsy

There are a million resources out there that will tell you how to treat narcolepsy medically including various stimulants, or other medications like Baclofen, or Xyrem. There are also some new medications being tested that sound promising, but I don’t have any personal experience with those.

For some people, when they receive the right combination of medications, their narcolepsy is managed well and they go on with their life, which is amazing.  But for many of us, the medications alone don’t give us the results we desire. Physically our bodies are all different and mentally we are all in different places as well. So, it makes sense we all need different things to treat narcolepsy symptoms.

Listen to your doctor

First and foremost, you should follow the instructions given to you by your doctor.  Your doctor is a medical professional. If you feel your doctor is not giving you the support you need, please seek a second opinion or a third. You must advocate for yourself.

I treat narcolepsy naturally

In my case, after more than 10 years of trial and error, I choose not to see a physician. However, I am not a proponent of the lifestyle and I won’t push for anyone to be medication free. For me, it was about the life I want to live traveling that motivated me to pursue natural options.  

Why am I here?

I’m here because I believe we all can use some tweaks to improve the quality of our lives. Every individual is different and has their own path. My idea is not to sell you on any one method, but to give you a comprehensive list of what I have seen working for other people with narcolepsy all in one place.  Hopefully, you will be inspired to try one or more of them and get positive results. 

I am not an expert on many of these things, but I will link to the resources that I am aware of.

I know this isn’t a comprehensive list of EVERYTHING someone might want to try, so please leave a comment below if you have something I should add.  In my mind, these recommendations can be broken down into four groups.

• Mindset – manage what goes on inside your mind 
• Community – find people who understand and learn how to communicate about your condition
• Lifestyle – manage daily life including stress and your sleep-wake cycle
• Nutrition/Diet– decide what to put into your body and when

Mindset changes to treat narcolepsy 

1. Practice self-compassion and self-love.  Continuously build yourself up instead of tearing yourself down.
2. Reduce negative energy in your surroundings.  This could include negative people, negative media, or negative co-workers. Do whatever you have to do to stay in a positive space.
3. Question your own beliefs about yourself and who you are. Often we pick up beliefs that we are lazy, unmotivated, or not capable when we are dealing with narcolepsy symptoms. Removing these negative beliefs can feel like a huge relief.
4. Give yourself permission to rest. Listen to your body and trust what it tells you about what it needs.
5. Practice gratitude. Be grateful every day. It’s too easy to focus on the negative aspects of life, practice gratitude and feel your energy increasing.
6. Keep a positive mindset. Whatever that means for you, if it means looking for the bright side of things or using positive affirmations, try to keep your focus light.
7. Work on acceptance.  Defining who you are as a person regardless of your symptoms of narcolepsy and accepting yourself in your current state are key.
8. Keep an open mind. What happened yesterday doesn’t have to be what happens today, be open to new possibilities, new opportunities, and new outcomes.  Learn to question what you believe about yourself and about narcolepsy. 
9. Increase your self-awareness. Understanding yourself and your emotions can help manage cataplexy triggers, as well as anxiety and stress.
10. Manage stress! Use whatever tools you have available to decrease your stress and anxiety and keep your mind a positive space. For me, this includes acupressure, reiki, and EFT. But this may include using exercise, yoga, mindfulness, meditation, writing, or whatever makes you feel at peace. Stress makes anyone tired so for people with narcolepsy it is especially important that we take care of managing it.

Find Your Narcolepsy Community

1. Find a community.  Look for support groups in your city or find one online. There are lots of Facebook groups, however, be selective and find ones with positive messages that won’t further drag you down.  I can personally recommend Positively Narcolepsy, Narcolepsy Naturally and Madcap Narcolepsy that is specifically for dietary adjustments.
2. Ask for accommodations. Don’t be ashamed to ask for help. If you are in school or want to study again, ask for accommodations. If you are working, ask for nap time at work or whatever it is you need to work better (standing desk, extra coffee breaks, space to do some yoga moves midday). Know that you can offer your best work when you take care of yourself first.

   

3. Don’t hide your narcolepsy from others. Share with them so that you will feel less isolated and alone. Communicate your social needs with those around you. Let your friends know that when you are unable to go out late at night that doesn’t mean they should stop inviting you. Maybe even write them a letter.
4. Let go of fear. Don’t let the worry and fear of what might happen to hold you back.  You are perfect exactly the way you are and you don’t have to explain yourself to anyone. If you have cataplexy, educate those around you about what to expect, and how you wish to be treated in such cases so you can relax and enjoy yourself.  
5. Speak up. If you are ready to share your story, I highly recommend it!  Raising awareness and speaking up about narcolepsy is a hugely empowering experience. I did this through the Rising Voices of Narcolepsy program and they are accepting application now through April 15, 2019.  I was not expecting the program to change my life in so many ways! The first thing I published was a story about my nightmares, and I never thought I would be brave enough to do it!

Lifestyle Changes to Treat Narcolepsy

Sleep Time Lifestyle Changes

1. Take short naps. It may seem obvious but many people are resistant to incorporating naps into their daily routine.  Taking naps is not lazy. In fact, it is one of the most productive things we can do to manage our symptoms. These can be regularly scheduled at the time when you tend to feel the sleepiest.
2. Relax before bed.  Do relaxing activities, take a warm bath, and make sure your sleep space is cool and comfortable. 
3. Maintain a regular sleep schedule.  Going to bed and waking up at the same time every day, even on the weekend can help send your body the message that its time to sleep.  The better you sleep, the better you will feel the next day, even though we know it will not be the same as healthy restorative sleep.
4. Try not to snooze your alarm.  Once you fall back to sleep you enter into a sleep cycle that is naturally about 90 minutes. So, when your alarm goes off again, it’s interrupted and you start your day in a state of brain fog.
5. Use binaural beats.  I use these for getting to sleep or sleeping soundly both during naps and overnight if there is a particular reason I need extra assistance sleeping (outside noise, extra stress, etc). These recordings can help you relax and get your body into sleep mode.
6. Practice meditation before sleeping.  Using meditation to put your energetic thoughts to rest and clear your mind for restful sleep is a powerful tool.
7. Learn lucid dreaming.  Lucid dreaming allows you to control your dream or dissociate inside the dream state. This can decrease the negative emotional effects of hypnogogic and hypnopompic hallucinations. If you can enter a state of lucidity, when you wake up you can be 100% sure it was just a dream, and let it go. It can also be lots of fun. 
8. Aromatherapy. Find scents like lavender, bergamot, ylang ylang, or jasmine that help you release stress and sleep better!
9. Yoga nidra. You can use a youtube video like this one or search for “yoga nidra” and try different ones until you find the perfect one for you!

Awake Time Lifestyle Changes

1. Accept help! Consider different options like hiring someone to clean or cook if you can.  Also, service animals are becoming more and more common for support.
2. Use light exposure. UV rays first thing in the morning either from the sun or a UV light send signals to your brain that it is time to wake up. This can help prevent you from snoozing your alarm or going back to bed. 
3. Exercise daily.  Experts recommend at least 20 minutes per day at least 4 or 5 hours before bedtime. Many swear this is their key tactic to treat narcolepsy. I am not an intense workout fan so my personal favorites are walking and relaxing yoga youtube videos. 

   

4. Never stop learning. Often difficulty concentrating and as a result, learning, is one of the most debilitating symptoms of narcolepsy. If you are passionate about something, break it into small bites and just study it. Studying increases the neural connections in our brain so even if it is one word of a language you love when you work to remember that word you are improving your brain function. Don’t beat yourself up when you forget, just keep working at it. 
5. Practice cold therapy.  The Wim Hof method is quite fascinating and is helping me regulate my body temperature.  He claims it has many more benefits like boosting the immune system. Let’s see! I have only been using it for a little over a week.  I’m interested to see the long term benefits to treat narcolepsy and hear how you all feel about it!
6. Breathe. Using simple breathing techniques can help us increase blood flow to the brain and the rest of the body. I mentioned the Wim Hof method before, and there are many others I like here. 

Diet and/or Supplements to Treat Narcolepsy

1. Follow your doctors’ recommended regimens to treat narcolepsy. If you see more than one doctor for more than one condition, please make sure they understand each treatment you are on and how they affect each other. This includes supplements you are taking and the dietary changes you make.
2. Avoid large heavy meals right before bedtime. Eating close to bedtime can make it harder for anyone to sleep. For me personally, it increases my chances of having hypnogogic and hypnopompic hallucinations.
3. Avoid caffeine, alcohol, and smoking before bed.  They can interfere with natural sleep cycles and lead to lower quality sleep.
4. Practice Intermittent Fasting.  This can help increase your focus while you are fasting and possibly be used for weight loss if desired.
5. Try supplements. There are many that I list here but the most common ones that I personally recommend are MCT Oil, Magnesium, LC-M, and multivitamins.  

   

6. Change your diet.  Reducing sugar, carbs, and other processed foods can have a huge impact on energy levels.  The ketogenic diet is a great option to treat narcolepsy but is best if supervised by a physician, especially if you take Xyrem. If you want to pursue this, I recommend the MadCap Narcolepsy website and facebook group for support.
7. Eliminate food allergies.  Actually, allergies can be tested medically but it may be expensive and there are often things we are not allergic to but are intolerant to.  You may start with an elimination diet to see if you have food triggers. Many people find that eliminating gluten has a profound effect on their level of sleepiness.  This is not the same as having celiacs so it cannot be tested medically.

One Step At a Time

Please do not try to change everything at once.  It will be too overwhelming. Look at the list and see what you might already be doing. Evaluate how and why it works for you.  That may lead you to be drawn to another option that you haven’t considered. Start with small steps.

As humans, we are resistant to change. You have conditioned yourself to stay where you are.  But since you created these habits, you can also change them. Your mind is powerful, so set the intention and follow-through.  

Contact me!

In the future, I hope to add more links and resources to this list of ways to treat narcolepsy. So if you have recommendations, please comment below and I will continue to add.