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?
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! Wow I should ask my friends to do that =0
Thank you!
I have a medication that helps with that, but again the medication only reduce it, so I'm sure this will help me a lot!
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.
Gonna add a little to the other comment I just now posted. With Narcolepsy in itself somewhat to an extent, but especially when one has moderate/severe Cataplexy, there is an effect it has, and just in attempting to let one know of/about it, of intimidating, being something uncomfortable for the other to hear about.
Things that are not well understood or aren't simply understandable, and relate-able, become like a road block or major pot hole in the road; people may be very interested initially but at a point they lose that and it becomes daunting upon them.
This is really hard because it would seem like explaining the situation to others would typically be a beneficial thing to do, but the result is often sort of walking out, putting yourself upon, a plank; where either the person actually hears some bit of it and works to be accommodating (rather, just alert to, aware of) and/or becomes rather uncomfortable with you, most entirely, even resulting in distancing from you in the future.With Cataplexy, beyond Narcolepsy, the element of emotion being at play in the symptom/condition, in explaining how the symptom/condition works, it comes off as a mental matter; like I've said many times there's an issue in psychology/psychiatry to do with 'entirely ignoring the physical body organ systems' and this results in what I see as a confliction, to do with the triggering of Cataplexy.
The literal brain damage that results in the Hypothalamus when the disease develops is directly at play, but is not something being considered nor recognized, by hardly anyone when Cataplexy is on the table (so to speak).I'm not sure how that can be changed, I think there has to be deeper and clearer breakdowns of what is actually occurring, in the science ('the how' and 'the why'😉 as currently only the very top experts in the field recognize the broad complexity, and even they are still quite far from at all in touch with 'the what' being the actual living experience / reality of living with severe Cataplexy.
Like how 'muscle weakness' is still the most commonly way of doctors describing, asking or questioning about, discussing the symptom/condition; IMHO, it is just exacerbating the misunderstanding along with rampant confusion, as well as that confliction.Something eventually, somehow, will hopefully change the general population perspective of what the disease is, Cataplexy in itself is, IMHO even more difficult and complex to get across, or be understood in any way; I mentioned the terminology (muscle weakness) matter because I do think a simple change of how things are presented, asked about, discussed and/or described can make a huge difference (not sure about across the masses, but at least in the doctors offices, it would have an impact). For instance, using 'physical muscle interference' rather than 'muscle weakness' could be very helpful for certain to many, maybe most, people in comprehending better Cataplexy, and the large range it has.
Going back to the emotion triggering element, until there is something very clear regarding (I don't even know what/how it would be said, or exactly what) that line of events internally is [like I don't know, the muscular circuitry deep in the hypothalamus sporadically is cut off and effected from the excess blood flowing in that area, when there is a spike of emotion ?] the current issues will more likely than not remain, just as nasty as they are out there across the entire realm of medicine and the general population.
Hope that made some bit of sense; haven't really tried to word that before, but something along those lines is very much needed.Epileptic seizures, Epilepsy, seems to fall into a similar unknowns realm, but people are familiar and for the most part, at least in comparison maybe to Cataplexy, (I can't say this for absolute sure but) don't quite get the excess never ending judging, getting some bit of considerate respect.
Not sure if it's just the element of well if it's Narcolepsy then you are dealing with sleepiness, that plays into the endless judging, because well everyone sleeps and has their own perspective of it.As brutal as it can be, Catapelxy is fascinating, IMHO.
WOW thank you for sharing this! As always, your insights on living with narcolepsy are relatable and so true! I agree that many people that require disability (and who qualify for it!) are denied disability funds here in the US. It is a terrible system, unfortunately. And when people find out we have narcolepsy, they can easily get weirded out or judge us! Which isn't fair, because it is a neurological disease just like seizures or anything else like that. Being misunderstood and doubted about something as awful as narcolepsy feels absolutely TERRIBLE. If you'd like to read a related article that I wrote you can find it here: https://narcolepsy.sleep-disorders.net/living/social-stigma-blame You are NOT alone in this! Warmly, Tatiana (narcolepsy.sleep-disorders.net Team Member)
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.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 (narcolepsy.sleep-disorders.net Team Member)so happy that you have such a great partner and you both can add some humor into it.
I'm so sorry you were violated while having a cataplexy event. That's so awful 😔 I hope you feel safe now I'm your current situation my friend 🙏
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. 😂
How cool,
! I am just a clumsy and easily distracted person who coud use one! 😂 - Lori (Team Member) 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 (narcolepsy.sleep-disorders.net Team Member)
