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What’s helpful during cataplexy attacks?

Cataplexy attacks can be outwardly shocking to observe. They can also be dangerous for those of us who experience them.
When I have full-body cataplexy attacks the people around me tend to start to panic. I then feel the need to comfort them – but am barely able to keep my head up, let alone speak!
For me, it’s helpful for the people around me to stay calm. Cataplexy is just a more dangerous version of a sneeze for me… something that I cannot control, but it doesn’t hurt me (unless I hurt myself from falling). You wouldn’t panic over someone sneezing, would you?
When the people around me stay calm, the experience is less stressful and embarrassing.
It can also be helpful when people grab things out of my hands that I am going to drop, or help lower me to the ground so I don’t fall hard from my cataplexy attack.
What is helpful for you when you are having a cataplexy attack?

  1. My boyfriend is quite the comedian. When he makes a joke that he knows will make me fall over, he prepares to catch me.

    If I'm holding a glass of water or plate or anything else that shouldn't fall, he'll grab the item out of my hands when I first start slumping. He's gotten very good at recognizing it. He'll also guide my head away from any objects or corners as I fall, and scooch me over the carpet or to a nearby chair if I'm on a hard surface.

    Sometimes my neck and torso will slump into a position where my neck is at a painful angle or it's hard to breathe. He helps reposition me in that circumstance.

    I also have PTSD and startle easily. If he's walking behind me and I'm focused on something else, he will exaggerate the loudness of his footsteps as he approaches so I'm not surprised.

    His attitude is just great. Some people will stop making jokes around me if I have cataplexy, but he just makes more. He says it's great feedback and the true test of comedy when I fall to the floor from laughing so hard at a joke he's made, as opposed to remaining upright while chuckling or smiling.

    On a less positive note, I was sexually assaulted once by someone else when I was having cataplexy. Like someone mentioned above, it helps to have a person make sure to cover you up to keep you decent. I'd appreciate it if the helper told me that they would touch me first and that they weren't going to harm me, because sometimes I can't open my eyes. If it happened in a public area, it would also be nice if they could stand guard to protect me from potential criminals until I were back on my feet.

    1. What a difficult journey you have had, . Sadly, you are not alone. Others have posted here that they have been sexually assualt during an episode of cataplexy and, as a former crime reporter, I know of far too many women whose rape allegations have been ignored only to have the suspect go on to rape or hurt someone else. You would think you'd have been safe with someone who understood your illness, but it sounds like that person was a predator disguised as a friend. You shouldn't have to protect yourself. It just shouldn't happen. Karma is real though and I hope both assailants experience it to its fullest. Don't worry about bringing anyone down. This stuff happens and people need to know about it. With more awareness, maybe friends and family of those with narcolpesy will better understand how important it is to offer that safety. It really warms my heart to know that you have your boyfriend at your side and that he is so incredibly supportive. Seven years is a wonderfully long time. Thanks for your honesty and for sharing your story here. I am sure that's not easy, but it could be so valuable to someone else. Hugs! - Lori (Team Member)

    2. Thank you so much for sharing. I love to hear about supportive people like your boyfriend when it comes to handling cataplexy attacks! It can feel embarrassing when friends act weird after I have a cataplexy attack... I'm usually fine after an attack, and yeah, it's annoying to have cataplexy after hearing a good joke, sure, but it's not super painful and I LOVE to laugh. So I love hearing about your relationship and the fact that your boyfriend stays humorous even through the cataplexy attacks! You sound like a great match!
      I wanted to say that I am so sorry you were sexually assaulted during a cataplexy attack. That is awful. Sexual assault is more common in our community than we'd like to admit. Our symptoms can make us more vulnerable to these kinds of attacks. I hope you are able to heal from this experience. Please know that you aren't alone in this, my friend. Warmest regards, Tatiana ( Team Member)

  2. I'd never thought about how I'd face an increased risk of fall injuries in the future. I saw this product once that's a casual vest you wear. It has airbags in it that inflate like a life preserver when triggered as well as sensors that detect when you're falling. It seems like a great way to "preserve" your independence. 😂

    1. How cool, ! I am just a clumsy and easily distracted person who coud use one! 😂 - Lori (Team Member)

    2. This would be a great solution for people suffering from severe cataplexy! I remember how difficult it was to stay upright and able to breathe, unobstructed, during bad cataplexy attacks where I ended up falling... not fun at all. Thanks for sharing with us! Warmly, Tatiana ( Team Member)

  3. I always tell my friends to make sure my skirt or dress (if I’m wearing one) is covering everything when I fall lol cause it actually makes me panic more if I’m exposed in that already really vulnerable moment.

    1. That's awesome that you communicate that with your friends! Nothing like that piece of mind! Best, Allison (Team Member)

    2. This is a great comment, here! Thanks so much for sharing! I'd love to write an article including all of these great suggestions for supporting people during cataplexy attacks. There are so many important points (including this one). Warmly, Tatiana ( Team Member)

  4. Same! It's like domino's if people panic. I try to make sure at least one person I'm with knows what to do. Same things as you: lower me to the ground if possible, take things out of my hands, remove my glasses if I'm on my face, "crowd control". If it least a little longer, I like my person to rub my back or tell me calm things.

    1. That is so smart to ensure that someone knows and understands what to do, . Thanks for joining in here. Best wishes. - Lori (Team Member)

    2. These are great ideas on how we can allow people to support us while experiencing cataplexy! Thanks so much for sharing. I've been caught while falling due to cataplexy, but never really comforted... I feel like that would help so much! Warmly, Tatiana ( Team Member)

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