What’s helpful during cataplexy attacks?

I have had Cataplexy for 23 years now. It has progressively worsened over the years. It has gone from neck muscles giving out and knee buckling to very severe Cataplexy. The thing that I find the most helpful when I am having an episode is to educate at least one or more people in groups hang out with. Also I have started wearing a medical alert bracelet in the last five years. I asked my cousin who is a paramedic what i should put on the bracelet. My bracelet reads: Cataplexy: alert but cannot respond. Roll on side. See medical info. I have my medical info in my phone. Rolling me on my side allows me to breathe a bit better. The combination of Xwav and Effexor XR have been a big life saver for me. It allows me to live a productive life. Without these medications I would be in almost a constant state of Cataplexy and probably have to be hospitalized. Joy is a choice that I choose everyday!

So happy that you have a partner who understands you! I swear my husband knew my triggers better than I did. I've now had cataplexy for 38 years. There are a few seconds where you can move to protect yourself... grab a chair or a table or back up against a wall and slide down it. My friends all know that putting their hand over my hand, on my arm or on my shoulder tends to de-escalate the cataplexy or short circuit its duration. I love to laugh but a one liner with an unexpected twist can put me on the floor. Laugh safely!

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.

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.