Improving Narcolepsy Triggers

Updated: Apr 4

Most people with narcolepsy (with or without cataplexy) have experienced different triggers in their lives that increase the severity of their symptoms. Things like work stress, confrontation and uncomfortable situations can all have the power to take our energy, motivation and focus away.

This can create serious issues in our personal and professional lives, adding to the list of life modifications that seem to constantly be stacking up.

So the question is, can we improve these triggers?

In my experience, these triggers can be improved greatly by understanding how our mind is communicating during these events and what it is trying to accomplish. These ideas may seem a little abstract to start but hang in there with me to the end to see the full picture.

In order to fully understand this, I will put it in an example of my old triggers.

One of my biggest triggers used to happen around larger groups of people that I didn’t know. Inside these groups I would always feel the need to be immediately accepted by everyone. If I wasn't the center of attention right off the bat, I could feel a sleep attack starting to set in.

When I didn’t feel like I was being accepted, my subconscious mind read the situation as "this situation may be threatening". It is important to note that oftentimes we are not aware of these thoughts or evaluations because they are below our conscious awareness.

If the subconscious mind thinks that there is even a chance the threat is real, it will active our stress response. During this stress response a different part of our brain, known as the amygdala is switched on. This is the “instinctive” part of the mind, and when it is activated it will shut off the logical thinking part of the brain, decreasing our ability to make rational decisions.

Looking at my situation from the outside, not being the center of attention is not a sign of danger or even a sign that I wasn't being accepted, but it was my mind's perception of the event. So, my stress response was not being activated because I was in a group of strangers. My stress response was activated because I perceived “not being the center of attention” as a sign that something was wrong. It is our perception of events that cause reactions, not the events themselves.

*Side Note

As some of you may know, stimulants give us energy by activating our stress response. So, individuals on stimulants are more susceptible to a heightened threat/ stress response. This can come from sleep deprivation as well…

Once our instinctive brain is in control, it’s job is to help us “eliminate” the perceived threat. It does this by one of the following;

1 - Preparing us to fight

2 - Preparing us to run away (or get out of the situation at all costs)

3 - Freeze (similar to an animal trying to avoid prey)

In my situation, my fatigue would set in quickly and force me to leave the situation to go somewhere to take a nap. From a social standpoint, this sucks… but subconsciously my brain had successfully “saved” me from the perceived threat by getting me to leave the situation, so it will evaluate this outcome as a positive result!

As this started to happen regularly in my life, I began to avoid all of these situations that caused symptoms. This is the logical response to an event that causes a negative outcome.

The problem was, the subconscious mind learns and creates patterns around our behavior. Here was the message I was sending to my brain by avoiding these situations.

1 - These situations are bad, you can see that by my threat response AND the fact that I left the situation (so it must be threatening)

2 - I actively avoid these situations because I do not like the outcome from these situations.

3 - The mind now believes these situations are dangerous. So it avoids these situations whenever possible and if placed in similar situations will repeat the same measures to get us out of the situation (aka cause a sleep attack).

The big issue is that this creates a pattern of avoidance. We are making a statement to do everything possible to avoid these situations or anything similar to these situations. This may seem positive in the short term but will typically push us further and further into isolation and away from the life we want to live.

When I was able to start seeing this pattern, I found it incredibly fascinating. While there was obviously some messaging mixed up, I could see that it was my perception of the event that I needed to work on. I needed to retrain my mind to understand that these situations were not threatening in order to fix my response to them.

The difficult part is our instinctive mind cannot be reasoned with through logical thinking. We cannot simply tell ourselves that everything is fine and to not attack us with fatigue. Our brain must learn through actual experience, but this is difficult when exposure to the experience causes us to have a sleep attack.

So here is how this can be done.

First we must learn how to communicate with the instinctive part of our brain. As discussed before, logical reasoning is not effective here, so we must change our strategy. During this threat response our breath will become quick and shallow, this is preparing the body for the threat.

To tell our threat response that there is no threat present we can slow our breathing down and take deeper breaths. Smooth & deep inhales will allow the response to subside and allow for our logical thinking to start to take back control of the situation.

Exposure to the situation is key to improving the trigger.

Depending on the severity of the trigger this can be done in a few different ways. Remember, always be safe during exposure treatments with others around to assist you and never enter a situation that can cause you harm. While these tactics can be effective, seeking out assistance from a professional therapist will provide the best results.

The first form of exposure is simply imagine yourself in the situation that causes the trigger. Try to be descriptive when you are imagining the different details of the situation, especially the thoughts/ images that cause a sense of fear. As you feel the threat response kicking in (increased heart rate, sweating, anxiety, desire to avoid ect) simply slow the image down in your mind and focus on slow and deep breaths until the feeling subsides.

This is the first step in teaching our subconscious mind that these situations are not a threat AND start to break the pattern of avoidance.

The next step is to go into a situation similar but not the same as the event that causes the response. For example, if you feel a response at work, see if you can go into work during off hours. Let yourself sit in the environment, feel any triggers that may be coming on and repeat the same sequence from above.

The final step can be the most challenging but is the most important. This is to go in and face the actual situation that is causing the trigger. The goal is to go into the situation, face the situation and show our subconscious mind that there isn't a threat here, so there is no need to cause symptoms or avoid the situation. This is the only way to start conquering the triggers in our lives.

This process is a challenging one and may take several sessions to start improving the effects. Most likely you will feel symptoms just thinking about doing the exercises. This is our avoidance response hijacking your thinking, but this is what we have to overcome to start taking back control of our lives again.

Start off small, with something that is mildly triggering and work your way up. Seeking out the help of a therapist can be very beneficial through this process. There is a weird stigma around seeking professional help but I know that personally it was beneficial for me and my personal growth.

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After living on stimulants for 8 years, I decided to drastically change my approach to living with Narcolepsy. After 2 years of living off medication and working on my health I have never felt better. I hope these articles help you get to a fulfilled & energized life. 

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