How to treat Narcolepsy

 

 

Back in 2010, I had a strange problem. I was a 20-year-old active college student who was exhausted. ALL. THE. TIME. Beyond the standard binge drinking a classic American college student did, I had no other reason to be so lethargic all the time. This experience led me to schedule a standard sleep study. Which then led to another, then another. At first, I was diagnosed with sleep apnea. Then after a quick tonsillectomy, they discovered….I still had a sleeping issue. My 5th and final sleep study revealed that I had narcolepsy. That experience led me on a journey to figure out how to treat Narcolepsy.

 

I was ultimately diagnosed with Narcolepsy in June 2012. What proceeded that diagnosis was a period of turmoil and a series of trial and error with different treatments. This article includes treatment options, a synopsis of my journey with treatment, and how I answer the question “how to treat narcolepsy”.

 

How to treat Narcolepsy

Western Medicine Guidelines on 

How to treat Narcolepsy

 

Definition

What do I mean by western medicine? I define western medicine as a system in which medical professionals (doctors, nurses, etc.) treat symptoms and diseases using medication, surgery, or radiation. I’ve also heard this school of medicine labeled as “conventional medicine” or “mainstream medicine”.

 

Narcolepsy Medication

 

My relationship to stimulants is anything short of a love story. Since my teenage years, even caffeine seemed to have an abnormally strong effect on me.  Trying Modafinil was not fun, to say the least.

*Sidenote: Everyone’s journey with medication will be different.  I’ve interacted with dozens of people online who have said that medication has been their saving grace. Please don’t take my story as personal instruction.

From a western medicine standpoint medication tends to be the most heavily emphasize the form of treatment.  Medications for narcolepsy tend to fall into two buckets. They would be; medications for narcolepsy without cataplexy or medications for narcolepsy with cataplexy.

 

Let’s break down the former category.

The two most common medications for narcolepsy without cataplexy:

  1. Nuvigil
  2. Provigil

 

How to Treat Narcolepsy with medication

 

They are both brand names of the drug Modafinil.

 

The most common medication for narcolepsy with cataplexy:

Xyrem

For a more detailed list of medications used to treat narcolepsy check out my exhaustive medication post or if you’re looking for non-medication treatment for narcolepsy, visit my narcolepsy natural treatment options page. 

Another form of treatment in western medicine would be a regimented sleep schedule. This was the second heaviest emphasized form of treatment from my doctor, after medication. I would say that beyond diet this has been the second most impactful form of treatment for my narcolepsy.

 

Regimented Sleep Schedule

 

A regimented sleep schedule is simply adhering to the same time period, every day, for when you are asleep, awake, and taking naps.  For me, personally, it looks like me getting up at 5 a.m. every single M-F and going to sleep around 9 p.m. On the weekends I wake up at 7 a.m. and fall asleep around 10 p.m. Luckily after implementing a change in diet I haven’t really felt the need to take power naps during the day.

 

Daily power naps

 

Another form of treatment for narcolepsy would be daily power naps.  I define power naps as quick moments of rest lasting no longer than 20 minutes.  If the duration of the nap is longer than 20 minutes, it typically makes it harder to reset back to a normal level of wakefulness. The objective is to trick your body that you’re fully rested so that the effects of EDS can wear off, without slipping into deeper levels of sleep.

 

Moderating Caffeine Intake

 

Moderating caffeine with Narcolepsy

 

Another form of treatment is to moderate caffeine intake.  The reason being is that people with narcolepsy are incredibly sensitive to caffeine.  Yes, we get that quick bump of energy but it’s quickly followed by a short and sharp crash.  Seeing that our bodies have lost the ability to regulate the sleep-wake cycle naturally they tend to be working from a “balance beam” standpoint.  A sharp rise in cortisol can be followed by an immediate fall in cortisol in order to balance it out. My sleep specialist recommended that I avoid caffeine altogether.  I personally keep my caffeine intake to a minimal amount of below 100 mg daily and make sure that I do not consume it after 11 a.m. Yes, I do cheat sometimes. Sometimes there are days where I will pound a 5-hour Energy or workout supplement to make it through the hump of the day. In a perfect world, caffeine is something ingested on a very minimal basis and always always always before 11 a.m.

 

Diet as a form of treatment

 

My sleep specialist touched upon changing my diet to a low sugar based diet but didn’t give me explicit details. I have found that eating a narcolepsy diet has been HANDS DOWN the most effective form of treatment for my narcolepsy. Diet does two major things as a form of treatment; it removes toxic/taxing forms of food from your body and it adds nourishing foods to your body.

 

My diet for Narcolepsy

 

I personally adhere to the ketogenic diet.  Or at least that’s what I aim for lol, I’m not perfect and by no means am I the king of discipline. I give in to cravings from time to time.  But this is the pattern of foods I eat on a regular basis.

 

Interested in learning more about the Ketogenic diet? Enter your email below and have my ebook sent straight to you:

 

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Intermittent Fasting for Narcolepsy

 

On top of the ketogenic diet, I also practice intermittent fasting.

 

Intermittent fasting is simply eating all of your meals within a certain time period during the day.  The typical window is 8 hours of consumption and 16 hours of fasting. So for 2/3 of your day, you’re not eating.  I personally practice this by only eating from 10 a.m. to 6 p.m. I have a very early lunch around 10 am and a second meal around 5:30 to 6 p.m. With plenty of snacks in between!

 

With this schedule, I’m sleeping for the majority of my fasting and don’t have to worry about cravings.

 

Recommended Diets

 

There are three diets that would highly recommend for people with narcolepsy.  I go more in-depth on each diet in my diet ebook, but below are links to recommended books on each diet.

 

The Ketogenic Diet

The Slow Carb Diet

The Whole 30

 

I found that the best solution is to stick to the one that makes you feel the most energized.

 

*Sidenote: It would be a great idea to consult with a nutritionist before drastically changing your diet. Everyone has different caloric needs, food allergies, and access to food. I would never assume a “one size fits all” solution.

 

Regimented Schedule

 

I touched upon this in the intro but I’ll go a bit more in-depth.  The idea behind regimented schedules as a form of treatment is that people with narcolepsy have lost the ability to regulate sleep on their own.  You must be constantly sending your body signals of when it’s appropriate to be awake and when it’s appropriate to be asleep — consistency is key.  Part of that process is aided by keeping to the same schedule day after day after day. I get up at 5 a.m. and go to sleep around 9 every Monday through Friday.  My weekends have a slight variation. I get up at 6 or 7 a.m. and fall asleep around 10 pm Saturday and Sunday. I highly recommend a regimented schedule as a form of treatment.

 

Most important tasks need to be done during a time of maximum alertness

 

Here’s another hack to help deal with narcolepsy. My alertness tends to vary throughout the day. So I try to structure my most important tasks to coincide with my peak alert periods. For example, I have a client facing role at my job.  My peak moments of the day are from 9 a.m. to 2 p.m. I try to book 80% of my meetings with clients within this window. I shy away from scheduling a client meeting during the second half of the day in order to prevent meeting with them during a time where the chance of experience EDS is higher.

 

Blue Light therapy for Narcolepsy

 

Another important way I structure my day is making sure that I don’t use a backlight screen at least 1 hour before bed.  The reason being is that this blue light stimulates your retinas and signals your body to be awake making it much harder to fall asleep at night.

 

Source: Harvard Article Link

 

I personally lock my phone away in the kitchen safe because I’m not perfect with self-control. Or, if you still want to use your phone into the wee hours, try purchasing a product that helps with the blue light emission.  

 

Light exposure

 

Another way of how to treat narcolepsy is using light exposure to your advantage.  I just talked about avoiding harsh artificial blue light at night but you can use it in first thing in the morning to stimulate wakefulness. It’s how I “start my engine” in the morning.  I use this behemoth of a lamp first thing when I wake up in the morning. It’s yet another signal to my brain that we must be awake now.

 

My personal hacks for working a desk job

 

The dreaded desk job.  First I ran away from it. I thought that I can’t work one with my narcolepsy for the rest of my life. I wrote that opportunity off.   Then I learned to live in accordance with this disease instead of fighting it. Below are my personal hacks for dealing with the desk job

 

Standing Desk Solutions

 

When I can I’ll work standing up.  Luckily we have a standing bar at my office job, but If your employer is willing, you can get them to pay for a standing desk. Here are some highly rated desks online:

 

Executive Office Solutions Portable Adjustable Aluminum Laptop Desk

 Carpet Wheel Mobile Stand Up Desk Height Adjustable Home Office Desk With Standing and Seating

ApexDesk Elite Series 60″ W Electric Height Adjustable Standing Desk

 

Dealing with employers

 

If you are a United States citizen, legally you are entitled to the Equal Opportunity Act.  This means that the employer must provide you with reasonable accommodations for your job. That’s certainly a subjective term, but comforting to know you have some legal protection. Here’s my article that covers this more in-depth. 

 

Product Hacks

 

Below are the two products I use the most at work to sustain my energy levels throughout the day.

 

UV light

The UV light I already talked about, but just to recap; I use it throughout the day to keep my body/brain stimulated. The UV light acts as a signal to let my brain know it’s time to stay awake.

MCT Oil

MCT Oil is a quick boost of healthy fats that make the transition from burning sugar to fat much easier.

 

Alternative Treatments

 

I’ve written an article on alternative treatments for narcolepsy, but here’s a summary of my top three alternative treatments.

 

  1. Cryotherapy

 

Want to put yourself in a chamber below -200 Fahrenheit degrees for fun? Why not? Here’s the skinny on cryotherapy.

 

I have found that cryotherapy has been amazing for my energy levels. It also curbs the effects of inflammation. If you have the chance I highly recommend trying this out as a form of treatment.  It’s a bit on the expensive side, but if you can swing it, do it.

 

2.) Stress Reduction

 

Everyone who has narcolepsy can attest to the effects of stress on your EDS.  Any time that I was incredibly stressed out or overwhelmed my narcolepsy would dial up to 11.  Below are my top forms of treatment for stress reduction.

 

Meditation

 

I personally practice Vipassana. I highly recommend using these two apps to first try it out: calm & headspace.

 

https://www.headspace.com/headspace-meditation-app

https://www.calm.com/

 

On top of meditation, I found that both psychotherapy and acupuncture to be great stress reducers as well.

For a full list of alternative treatments for narcolepsy check out this article.

 

3.) Supplements

 

Below are the supplements I take on a regular basis.

Fish Oil (for brain health)

Udo’s choice oil (for brain health)

Daily Greens (for general micronutrient consumption)

 

In case of emergency supplements

 

Sometimes when I know I have a long drive coming up, or there’s a client meeting and need to be alert for, I cheat with this pre-workout supplement. It is the perfect balance between crisp mental performance and mild jitters. Instead of tired but wired,  you’re just wired. It’s good in a pinch. I would not recommend using this every day, but when you need it, it’s there for you.

 

Thanks for reading! I hope that helped give you some direction.

-Peter

 

 

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