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Does Anyone Have Less Severe Cataplexy And Could Explain What It Is Like?

A MyNarcolepsyTeam Member asked a question 💭
Boston, MA

I have read into cataplexy and there seem to be more major attacks (falling over and things like that) and more minor attacks (drooping of the face was mentioned). If anyone has the more minor attacks, would you mind trying to describe what it is like? I tried looking on the internet but there is nothing from an actual person with cataplexy's point of view.

The reason I'm asking: I tend to worry about things so it could definitely be my imagination but I have noticed when I find something… read more

February 28, 2021
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A MyNarcolepsyTeam Member

I do have very heavy eye lids when I experience cataplexy. Feels as if there are weights hanging on my eyelids. Sometimes it is only one eye. This is the most frequent form I have. I also experience slurred speech. I randomly drop things. I no longer use glass cups or plates.

February 28, 2021
A MyNarcolepsyTeam Member

I have these minor attacks ..when I'm in a good laugh my legs buckle I don't fall it just kinda feels like I'm bouncing a little, sometimes my face feels like it's drooping, kinda distorted, I know it's noticeable becuz of the look on some people faces,thank God it's over quick...

April 4, 2021
A MyNarcolepsyTeam Member

For many years I had mild cataplexy and my experience was when I was either laughing or angry I would feel like my knees were going to buckle under me and I would kind of sway and catch myself so it looked like I was having a difficult time walking in a straight line. I cannot tell you how many times I was asked over the years if I had been drinking or if I was drunk. I now take Xyrem for the cataplexy. It's very expensive and a very strong drug that requires special instruction and is only availed at one pharmacy in the United States but it does work if you can follow a routine and take it correctly.

March 24, 2021
A MyNarcolepsyTeam Member

My cataplexy started with a slight buckling of the knees when I was annoyed or found something very funny. Now it triggers a controlled collapse kneeling position or lying down. I try to lie down because when I’m able to relax completely I recover more quickly.

October 1, 2022
A MyNarcolepsyTeam Member

I have had cataplexy most of my life - I am 74. It comes on when I am laughing. I feel my face start to go limp first, then my legs. I start bouncing and finally collapse slowly to the floor. If it is a really strong one, I will almost lose consciousness and at times start crying. Then I will feel very weak for a time.
I also still have sleep paralysis but none of these symptoms as much as when I was younger. Occasionally, I will find myself on the floor and assume I fell asleep but all of these are worse when I am very tired and/or stressed. They never took my license because I will pull off the road and sleep when I feel a sleep episode coming on. I feel a kind of buzzing in my head and it feels like a door slams shut on my brain for a second. Then, I know I must sleep even for just a few minutes. When I worked, I went to a dark quiet place to sleep on breaks and had a friend wake me when break ended. Even 5 minutes sleep would refresh me enough to go back to work most of the time. I tried drugs early on but didn't like the side effects so I just compensated in whatever way I could. The sleep paralysis was the worst part of it. I read a lot of Poe as a teen. I think he had narcolepsy and he feared being buried alive. As a teen, i told my Mom my fear and she said that couldn't happen now because they embalm you before they bury you to insure that you are dead!

January 4, 2022

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