More Than Just Tired

Narcolepsy is so much more than just being tired. A lot of people with narcolepsy have to take medication to help them get the deep sleep they need. There are a couple of different medications, such as Xyrem, Xywav, and baclofen.

I take Xyrem. I have been on Xyrem for a little under 2 years now.

Xyrem side effects and keeping a routine

I have had to give up or change a lot of things because of Xyrem and the side effects I deal with. For me, the biggest side effect I have is excessive sweating.

I no longer go out with friends and I no longer stay up late because, with Xyrem and even just narcolepsy in general, it is important to take medication at roughly the same time and go to bed at roughly the same time every day.

What Xyrem feels like

Last week I experienced something that I had only heard other people experienced. About an hour or 2 after I took my first dose of Xyrem, I got up to go to the bathroom.

For those of you who don’t take Xyrem, when people with narcolepsy take this medication, it basically sedates them, so they get the sleep they need to be rested.

When I got up, I was half asleep and slipped on my dog’s bed that is on the side of my bed, and I face-planted on my ottoman at the foot of my bed.

Pain in my chin and neck

When this happened, my chin hurt immediately, but I didn’t think I had any marks. I went to the bathroom and went back to bed with not a huge amount of pain. When I woke up that morning, I had severe pain in my chin and neck. This is what I looked like:

Advocate Tara O'Connor showing bruises and scrapes on her chin and neck

I had no idea that my face looked like this until I woke up and looked in the mirror. I had to go out in public and see friends and family that same day and multiple days after. I had to explain what happened to so many people. Luckily, we still had to wear masks, so I didn't have to explain when I went into stores or appointments.

Bruises and scraps

My chin and neck were in a lot of pain for at least the next 5 days. A day or 2 after this happened, bruises started to show up along with the scraps I got. Three days after this had happened, this is what I looked like.

Advocate Tara O'Connor showing bruises and scrapes on her chin and neck 5 days after a fall

It is so tough having things like this happen and having to explain myself to everyone and tell them what happened. The night after this happened, I ran into the wall in my room right next to the door around the same time I tripped the first time.

Other people experience this too

Luckily I didn’t get any visible bruises and just a sore forehead that still hurts to this day. For me, this was a new thing even though I heard so many others that have had something like this happen to them.

I am writing this article because I want people who do not have narcolepsy to know that it is so much more than just being tired. I am also writing this because I want people with narcolepsy who have experienced something like this to know that they aren’t alone.

Has anything like this happened to you before? Feel free to share your experiences and stories in the comments below!

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