Narcolepsy, Periods, and Cramps… Oh My!
I have lived with narcolepsy since it onset in my junior year of college in 2016. The symptoms were extremely difficult to deal with in the beginning. My cataplexy was uncontrollable and severe; my daytime sleepiness was life-altering. While I have had improved symptoms since finding a treatment plan that works for me, my symptoms are still severe. Any type of fluctuation that affects my body also affects my narcolepsy.
For example, when I am sick, my narcolepsy symptoms are worse. When I am depressed, my narcolepsy symptoms are worse. When I’m on my period, my narcolepsy symptoms are worse! Additionally, having narcolepsy makes my periods more difficult to deal with and vice versa.
Exercising during my period hurts, so I avoid it
On normal days I try to go on at least 1 walk outside amongst the trees. Getting that extra sunshine in every day helps me be more alert and in a better mood. However, when I am on my period, my cramps are worsened by strenuous activity of any kind.
I’ve heard so many people say that exercise can help ease their cramps… it’s the opposite for me! As a result, I find myself missing moving my body when I am on my period, and my brain fog and fatigue are definitely worse.
My emotions swing wildly and worsen my narcolepsy symptoms
When I am on my period, I can be incredibly emotional. While I don’t find myself making bad decisions because of my emotions, I find that strong emotions can trigger my narcolepsy symptoms.
When I have high emotions, my cataplexy kicks in, and my face may start to droop and my knees may start to buckle. These mood swings can also trigger sleep attacks, depending on how upsetting and strong the emotions are.
Preventing period leaks interrupts my nighttime sleep
As a person with narcolepsy, I struggle to get restful sleep. When I am unable to get adequate sleep, my symptoms are much worse the next day, and it can take weeks to recover fully. I wish I were exaggerating, but I’m not. When I lose sleep due to having to get up at night while on my period to prevent leaks, it leaves me even more tired the next day.
These factors compound each other to make periods even worse with narcolepsy. I’ve been menstruating for 13 years and thought I had the hang of it. When my narcolepsy onset, my periods became even harder to deal with.
One way that I keep my period minimalistic is by using a reusable menstrual cup. I don’t have to worry about running out of period products, and having one less thing to worry about is incredibly helpful. Menstrual cups can be worn up to 12 hours long, saving me time and energy. I’m slowly learning how to menstruate again. So far, I have found that rest and relaxation are especially important for me during this time.
Do your periods make your narcolepsy symptoms worse, too?
How would you describe your relationship with your doctor?