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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. Hello, this is my first post, I have a lot to offer and hope the forum is okay with long responses!

    Just going to mention that I created a book recently that has an entire section that I devoted to being about living with severe Cataplexy, I go into what is my own breakdown to do with there being a deeper level to Cataplexy, than the direct triggering emotion factor.
    Essentially, that breakdown has to do with the role of Hypocretin/Orexin, being the regulation of semi autonomous core body functions which dysfunctional REM/broken sleep patterns is only one of; one's psychological and physical body systems are all at play in Cataplexy, though specific things such as: stress and anxiety, energy levels related to exhaustion being physical, mental, and/or be it social, as well as excessive sleepiness being far beyond the normal one has.
    All of that can directly influence Cataplexy and has to do with how come at times it can trigger from near nothing while other times it may not trigger at all in the exact scenario/circumstances/situation.
    It helps to understand how much, frequent and wide, the symptom/condition fluctuates, directly to and with one's psychological and also physical body systems, all of which at this point I think of as core body functions related back to the lack or total loss of Hypocretin/Orexin, leading to it becoming basically haywire, issue/matter: psychological (vigilance, mood, happiness, depression, excitement, surprise, anger, irritation/frustration, appetite, stress, anger, etc.) and physical body systems (central nervous, neurologic, endocrine, respiratory, metabolism, muscular, skeletal, etc.)...

    For me, the biggest improvements with what was for a decade (my 20's) regular frequent occurring severe (collapsing into complete temporary muscle paralysis) Cataplexy, was learning about the medical literature, the ongoing research, the terminology around the disease and sleep medicine somewhat too, interacting with others on message boards offering and receiving both perspective along with experiences.
    Over time, growing more familiar with the condition/symptom in both how it physically (inner sensations also, I describe as inner wave like sensations rushing through a section of or the entire body, also inner flickering of muscles, some say inner tingling, some don't seem to pick up on and note such) effects the person and what their common triggers are, along with over time becoming/growing more comfortable with having the condition/symptom, acceptance.
    With that, even without it this happens subconsciously when the symptom progresses beyond a minimal or moderate extent, one can begin to recognize what are their own limitations and boundaries, to do with the symptom; and on that note, so few recognize the depths that the symptom/condition alone (separate from all the rest of the broken sleep patterns/dysfunctional REM core symptoms of the disease, as well as effects that breach so far beyond sleep) can breach, the true gravity that living with this symptom/condition has, especially when it is beyond minimal-moderate, which is actually what near to most people with Cataplexy are dealing with.
    'Less than 10% (likely under 5-7%) of those with Cataplexy (Type 1), live with regular frequent occurring severe (collapsing) Cataplexy, over a long duration (~6 months) of time.'
    Stat I heard presented, by doctor presenters, around 2016/2017 at a Narcolepsy Network annual conference; it's a very telling stat into maybe how come there is such little interest, actual real focus into the symptom/condition.
    Back around 2012 I attended a Wake Up Narcolepsy event discussion group with Dr. Emmanuel Mignot, he said the following which was so validating for me because I had yet to hear a doctor say anything along such lines, though I'd for years even fully unaware of the term Cataplexy (or any of the science, yet) been tuned into the dissipation of my muscles during pleasant interactions; what he said is huge though: "a person can be in an ongoing state of minimal Cataplexy, while fully unaware of it," he added that during the interactions with him, he could both see it and audibly hear it, happening while the person had no idea of it.
    There's so much to still be recognized and discovered in regards to the symptom.

    Lifestyle adjustments/adaptations for me, have really regressed the Cataplexy since age 30 (~14 years ago), I have to live in a peculiar way, I'm very isolated, not involved or participant in much, I have to be neurotic around lifestyle, everything from diet, mindset, behavior and environment. The more that I can manage to optimize my overall health balance, through what are appropriate and healthy steps/methods/measures, for what is my own unique individual psychological and physical body systems makeup, the more directly in a beneficial/positive manner/way, the symptoms of the disease have been effected.

    It's a fascinating symptom/condition, to say the least, that goes for Narcolepsy as well but man the stereotype around that term, brings all of us with the disease, down heavily.

    1. Thanks for sharing. I hope you feel a little.better now you let all that out. I do hope your bother gets help soon and a diagnosis. I feel your pain with isolation. It's very thin line with trying to fit in and getting overwhelmed. It is very tricky finding the balance. Please keep trying. Maybe start with one big activity a month. Then two a month. See how you feel. I have had to the my self last year it's ok to miss out on things. If I do not feel safe to attend. When I do make it out. I tell myself well done. Maybe you can give that a try.
      Kerly team member

    2. Hi . I hope you can find a career path that makes you happy, taps into your creativity and allows you flexibility. Very often, people find a way if they just keep doing what they love most. I also hope you eventually form a circle of friends who empathize with your health issue and make you feel safe. Thank goodness for the digital age. Social media and online jobs have helped so many people remain connected and employed despite disabling conditions.Warmest of wishes. - Lori (Team Member)

  2. 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)

  3. 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)

  4. 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)

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