Fight or Flight: A Narcoleptic's Reaction to Pain

Narcolepsy will rear its quirky little head at the most inconvenient times. It doesn’t care where we are or what we are doing.

If you have cataplexy, like I do, then you have an extra layer of security to worry about. When we have a sleep episode, we can generally position ourselves and people can usually tell we are just sleeping. We might be in an embarrassing position, but it is obvious we are resting. With cataplexy, however, there are added fears like having people doing CPR on you and not being able to tell them to stop. The chance of getting injured is also elevated.

A new, frustrating reaction

Over the years I have had some extensive medical procedures and surgeries. I have a high tolerance of pain, but my body is reacting in a way that is new to me.

When I give blood in the lab or receive a vaccination, I have no narcolepsy-related reaction. It has never been a problem for me to do these things. I had a condition when I was younger, and I went through years of being monitored by doctors. I gave blood at every doctor appointment and experienced many different types of medical tests. Going to the doctor has never been a source of anxiety for me. This is why the new reaction is frustrating.

I started to shake and sweat

When I am being examined by a doctor in a spot where there has been an injury or where there is pain, I will start to pass out cold. I turn white as a ghost and will need to lay down immediately. I become very confused and unable to talk.

The first time this happened was when I had an IUD removed and replaced. For those of you who do not know what I am referring to, it is an implanted birth control device that is good for a number of years depending on the brand. You must have the device taken out and replaced when it expires.¹

This was the second time I had my IUD replaced. I had been through the procedure before, and I knew what to expect. The doctor started to remove the original one, and my body started to shake, and I started to sweat profusely. They had to stop and let me relax my body, and every time she came close to me, I started shaking again. I was not in fear or feeling any conscious apprehension, so this reaction was confusing.

We ultimately got through it, and I brushed it off as an isolated incident. I assumed it had something to do with lack of sleep, or that I was more nervous than I thought.

New strategies for managing my reaction to pain

Over the next few years, it started to happen more frequently.

I now prepare in a different way for an appointment that deals with an injury, surgery, or healing. I make sure I do not go alone; this is the most important preparation I can make. My husband is aware of what happens, and he can usually tell I am going to have a reaction before it happens. He says I have a "tell," and it is in my eyes. I also make sure that I sit in a secure chair and not close to any edge while being examined.

I have it noted in my chart that this reaction happens. I have a few different doctors, and they are all aware of it. Each of them has seen this happen at least once.

The only explanation is that my narcolepsy is trying to protect me in a way that causes a fight-or-flight reaction. I’m fortunate to understand why it is happening, yet I wish it didn’t happen at all!