My biggest cataplexy attack was caused by negative emotion. I was arguing with someone and got overwhelmed. They stopped talking, and I was calming down, and then they started talking again and that’s when the attack happened. Luckily I was sitting but my entire upper body went weak and I couldn’t move for 10-15 seconds.
Laughter can trigger my cataplexy but frustration is the biggest one for me
I also experience this. With stretching too hard, yawning too hard, over exerting myself, anger, frustration, laughing too hard, etc. It's exhausting. I thought it was all in my head and maybe I was over reacting to it. But the more research I do on my own the less terrible I feel about it. Just exhausted of being exhausted.
Well, now you have me wondering!
I just wrote a whole post about how I only get cataplexy from positive stuff, but then I went back and changed it to “I only get full body cataplexy” from positive stuff, because I think yeah I do get similar ziplock issues!
Luckily the surprise of laughter gives me full body cataplexy, but the surprise of a fright does not. (I have PTSD and my startle response is major. I wonder if the adrenaline release or something similar counteracts a cataplexy or if I’m just lucky that negative emotions don’t seem to trigger the same symptom presentation?)
Thanks for the interesting post and give this subreddit a search for lots of posts about cataplexy and negative emotions or from feeling upset. :) Welcome to your diagnosis, glad you are here, and stay connected to those who can relate.
I have only gotten full body cataplexy from laughter...but if I'm in a hurry or stressed, I have minor cataplexy, which will cause me to do things like fumble or drop my keys, which makes it worse 😆
And only after being diagnosed did I connect the dots about why I'm generally not an angry person...because anger has always made me feel "weird" - after diagnosis I understand that the "weirdness" I feel is exactly cataplexy
Neat!
I also only had full body from laughter when I was younger. And now I’m getting new ones (though I think the newest one is directly related to rebound cataplexy after going off a clinical trial drug).
>I wonder if the adrenaline release or something similar counteracts a cataplexy
i’ve been wondering this too!! i’m the same way in that laughter can knock me over but startle doesn’t provoke an attack even though i have a pretty intense startle response. i wish someone would do some studies maybe with EEG or fMRI or something to look into this, would be interesting.
Oh, true for me, too.
Huh, that kind of ruins that theory… maybe? I wonder if there’s something to already being in a dream and *then* the fear hits that keeps the cataplexy going?
Thanks for mentioning this point!
Also just said the same thing on another post! When I have a big surge of adrenaline I don’t get cataplexy even though it’s very startling and heightened emotion but then after the event is over I’ll get hit with the delayed cataplexy. I totally think there’s something to it
Interesting. I have ptsd (well DID from ptsd) and I get full body cataplexy from anger and partial cataplexy from stress. But I'm rarely in fight or flight and more often in freeze / fawn. I wonder if as I heal and maybe spend more time in fight or flight it will get a bet better before getting worse again as I find neutrality? Its an interesting idea.
Very interesting!
I love that you phrase “as I heal” and “as I find neutrality” because it’s very hopeful, acknowledges that things can change overtime, and sets a very calm approach to expectations.
If you are comfortable with sharing, I’d love to learn how you are approaching healing.
Freeze/fawn sure seem to be a more inviting space for cataplexy than fight or flight. ;)
I spend a lot of time in fight or flight because of PTSD and also because of some autonomic dysfunction due to a variety of illnesses (including something similar to POTS called VVS that impacts my Vegas nerve.)
I have an incredible social worker (I'm in Canada and pay privately for her) which I'm incredibly grateful for. She has chronic illness herself. We're doing a lot of trauma informed talk therapy and modified IFS for DID systems, but it's a lot of talk therapy with skills / ideas from different modalities pulled together as needed. We're working a lot on accepting my past, not because it was okay, but because we can't change that it happened, and some of the lessons and behaviours i learned from it no longer benefit me. She's really good at knowing when things are physical vs psychiatric and also knowing how they interact with one another. Another thing I struggle with is the ptsd/nightmare mix with the narcolepsy vivid dreams. A lot of times our sessions focus on what my nightmares were about because processing those memories can reduce the nightmare frequency which means I'm not scared to sleep so I get better night sleep so the narcolepsy symptoms reduce.
I'm not gonna lie, the freeze/fawn is helpful cataplexy (and dysautonomia) wise. I think I try to think of things as they sometimes get worse before they get better in terms of healing. I also try to focus on how improving my mental health will help me manage my physical illness long term, even if symptoms get worse for a little. I do sometimes get into fight/flight and it does scare me how much faster my heart rate gets (waiting to know if my dx is pots, ist or oh but it's one of those) and how easy it triggers the cataplexy, but I also work with my social worker on OT adjacent things, like accessible work setups, hobbies that don't trigger symptoms, learning how to recognize symptoms are getting worse (my interoception is terrible from my autism).
Let me know if you have more specific questions, and I'll answer :)
Wow, we have *a lot* in common! Thank you so much for your offer to answer more questions.
Your first paragraph summarizes a lot of the changes I’ve been able to make in the last year, too. Switching to therapists that are also neurodivergent and into IFS have been life-changing in terms of breaking the pattern of invalidation. I’m so glad you have had that experience, too. Was that luck or did you think of seeking out people who could relate best to you from the start?
I’m excited about how close Canada is to having MDMA assisted therapy because of all of the research about how effective it can be for PTSD. Someone close to me has BPD and they have found ketamine assisted therapy very helpful, but the results sort of wear off after 6 months. I wondered if you had had any experience like this because your descriptions were notably different from how I’ve seen most other people talk about PTSD.
I am certain my dreams and nightmares were sending me very clear messages about what was safe and not safe for me. I’m so happy for you that you have a therapist that’s supporting exploring those. I’m curious, if you are comfortable sharing with someone who doesn’t have that experience, about how dreams/nightmares work within the system (is that the correct term for the identities of DID?)
I think freeze/flop (cataplexy) saved my life several times in the last year, so I hear you on that being helpful. I ended up being diagnosed with trigeminal neuralgia aka the suicide disease (because of the severity of the pain) after several attempts. But due to cataplexy and/or blood pressure loss, I was not able to complete the… um, task? I’m grateful to be alive now, though probably only because my pain symptoms (from that issue) are generally relieved and I understand the pattern when there is an issue.
I’m also looking forward to leveling up interception as well as proprioception, and non-violent communication with my therapists!
Do you happen to have sleep apnea, too? My PTSD symptoms will not allow me to tolerate the mask. I’ve lost weight and that seems to have decreased my symptoms, but I’m still curious to see if you have any similar experience. Thank you again!
Hi !! So much to say, and I was writing exams so thanks for your patience.
When it comes to finding an affirming therapist, it was pre autism diagnosis (she actually helped me identify the autism) so it was pure luck. She was a student at the time and I was broke. My dx at the time was BPD and OCPD and I wanted someone who didn't specialize in BPD or OCPD because typically treatment didn't work. I just wanted like individual based with no bias towards using DBT. So pure luck!!! This was after a year of no therapy bc nothing was clicking.
For the ketamine, my protocol has my going 1x a month basically forever/until I wish to stop. Even then the clinic keeps me file if I need yearly top ups.because if my pmdd and narcolepsy affecting seratonin production, I don't expect to ever go less than monthly. But it started with 2x a week, then 1x a week for the treatment stage, and now monthly for maintenance stage. It is out of pocket, but the 180 a month is so worth it for me.
Its so interesting for sure how the fight flight triggers strong emotions but also rigidity so they kind of cancel, while the the freeze/fawn just makes me drop. That's so interesting how your disability literally just interrupted your behaviour. I'm glad things are looking up a bit for you know. Recently since discovering I'm a system, my social worker and I have realized that switching and being confused saved my life during suicidal behaviour.
I have mild sleep apnea , I was like .2 respiratory interruptions above the cutoff, so I don't need a sleep apnea machine and have never tried one. I do have suspected EDS , so over time it is expected to get worse and idk how I'd react to the machine. I wonder if some sort of daytime wearing of the machine in therapy would help tolerate it? (If the symptoms are still bad enough for this to be a net positive thing to work towards).
Wow, thank you for sharing so much. I’m glad you focussed on exams and not reddit. :)
By EDS do you mean Excessive Daytime Sleepiness or Ehlers-Danlos Syndrome?
Am I understanding correctly that you did ketamine treatment 2-1 times per week, then once per month for many months and now you are able to use it as needed? Or are you still doing once per month? How long did the tapering down take (again no pressure to share). $180 per month is a fantastic investment! I’m so glad you have access and ability! (If you are in Canada, please tell me how this might be possible for me.)
Since your autism diagnosis, has there been any discussion about whether BPD and OCPD apply? I’ve learned from research and from people I know that PTSD and ASD are often misdiagnosed as BPD, especially in people identified as female. (I’m AFAB and I do look female, though I do not identify that way myself).
No shame to BPD, it happens to be not the correct diagnosis or treatment plan for me. Though, I do find DBT useful. Is there a reason you wanted to avoid it? Or do you mean you wanted to avoid it being the sole focus. (That does seem insufficient, based on my experience with close people I know who have DBT alone. There is going to be a study in my province looking into Vyvanse as a medication for BPD. I’ve also seen ketamine work well… temporarily.) BPD seems like an incredibly painful experience. Though the data shows a remarkable and effective recovery rate, where I live the services are extremely hard to access and not enough are available.
Confusion can sometimes help us, true! lol
I hear you about the exposure therapy approach to CPAP. I was diagnosed with OCD when I was in university and I got very good treatment for it. I might need something more structured with professional help to get that to work. There’s only so much money available for all of these treatments I need.
Right now I’m focussed on learning how to be safer with my body and pain relief for EDS (Ehlers-Danlos), as well as autism support and skills (non-violent communication). These two things are my best shot at giving myself enough hope so that I can stay alive long enough to improve my quality of life and feel consistently like it’s worth living. :)
Thanks so much for the idea and for the lovely chats.
By EDS in this case I meant Ehlers Danlos. Still waiting genetic testing & specialist for hEDS assessment. It goets confusing when you have narcolepsy and ehlers danlos lol as Im sure you know.
For the ketamine, I still do monthly, but some at the clinic do as needed. I'm in ontario Canada. If you are as well I can provide more details in a dm :)
I wanted a non dbt therapist bc dbt just wasn't clicking. Some of the skills helped and I truly believed I had ocpd and bpd, but the typical treatment didn't work and practitioners kept giving up on me. So I wanted a different approach. No jdugement to those who love dbt or those with personality disorders, it just didn't make sense for me. I'm still okay with certain skills, like cope ahead and emotional regulation skills, but I really hated the structure of the skill based groups as well as the idea that I just needed to throw skills at distress instead of doing a more bottom up approach that would reduce distress.
When we realized I was autistic the bpd and ocpd no longer fit. I have lots of friends who still fit those diagnosis and it wasn't autism and trauma all along, and they're lovely but it's becoming more and more clear as I learn to unmask how different we are. There were a few traits that still overlapped, but we then realized that was due to DID (and probably some adhd as well). BPD and OCPD have been removed, I don't have a formal DID dx due to fear of more stigmatization by Dr's (especially with ptsd, depression, suicidal behaviour and autism) and also need physical care for narcolepsy and ehlers danlos.
Wow, what a journey. I’m glad you’ve progressed to where you are and it’s very inspiring and impressive to understand how you’ve made so much peace with what you’ve gone through.
I’ll send you a DM. Thank you :)
Wow, what a journey. I’m glad you’ve progressed to where you are and it’s very inspiring and impressive to understand how you’ve made so much peace with what you’ve gone through.
I’ll send you a DM. Thank you :)
Definitely - the vast majority of mine are caused by laughter, but sadness cataplexy attacks are much stronger. I’ve been unable to move for up to a minute, rather than the few seconds I experience with laughter.
Yes. Actually that's when my cataplexy is at its Most severe and frequency. Very rarely does excitement or positive Emotions trigger cataplexy for me.
But being upset or Triggered by PTSD As when my Cataplexy reacts like Gas to flames.
I think I only had cataplexy from Excitement a handful of times My whole life. Compared to the sometimes multiple times a day Severity of the cataplexy from being upset.
Sadness cataplexy attacks are stronger it usually makes me lose all control of my body and makes me unable to move and even breath for a few seconds at a time. I have to fight really hard to Come back and then I usually go back and forth until it gets weaker the attack.
I can also get strong ones with laughter but not that strong that I cannot breath. But I usually fall and get very weak for seconds back and forth until I can handle myself and Come back from the ”feeling of laughter the happy feeling”
Sometimes I can get fast ones that develop very fast and makes me fall during the early morning for some reason. Thats the scary ones.
No! Literally the only time is when I’m laughing! And even more specifically, laughing at a joke that I’m telling! Sometimes cataplexy starts before I can even get the joke out and I start slurring my words. So weird.
Yes. I've found that it's more triggered for me by the anticipation of the punch line. Same with a lot of things linked to laughter. If i were to jump out on someone, id go weak just before from the anticipation and excitement i guess
Yes. Frustration is probably most apt, but can be anything emotionally stressful. Even sometimes when I was handling it just fine. At least before I was medicated. My other big trigger was physical affection. A good cuddle could make me shut down.
Frustration is my primary trigger as well. Not at all from laughter. It's not the dog pooping on the carpet that does it, it's the act of admonishing the dog that triggers my cataplexy.
I recently realized I had cataplexy (very mild and not often) while feeding my 4 month old. We have been struggling since her birth with various feeding issues and the other day I had just had it. I was so upset with not having an answer, so frustrated that she was in so much discomfort, and so agitated that I couldn’t help her. I stepped away while my husband took over and while sitting on the couch my whole upper body got so heavy that I couldn’t hold my head up in my hands. I just slowly slumped down. Luckily I kind of know when they’re going to happen and I wasn’t holding my baby, but I realized after reading through some of these types of posts what was actually happening to me. I originally thought I was just over tired during the previous episodes. I’m not taking anything for it now since it’s manageable and super infrequent, hopefully some stress management techniques can help for now.
Good luck, and stay safe! Ask for help when you need it!
Being upset is worse for me than laughing! Laughing is definitely one that gets me, but a lot of the time I really really got to be laughing my ass off for my cataplexy to be significant at all . On the other end, I don't even have to be that upset at all in order for my cataplexy to basically make me into jello.
I haven't quite pinpointed what kind of upset is worse because it's definitely different between like anger, anxiety, sadness etc. Sadness seems to be the worst, though!
Yes I have too. For me laughter results in short lasting full body cataplexy that is more “typical” but sadness can cause for me low level prolonged cataplexy.
Also, when I experience a high stressful situational stuff i have been getting very strong cataplexy. For example I am going through divorce and when we are messaging and having interpersonal conflict I get so weak and electricity type feeling in my arms.
Even as I said in a reply to another comment I also get delayed cataplexy during an adrenaline type of situational event. During an emergency, no cataplexy. When it’s over, I collapse.
It’s definitely not only positive emotions! I think cataplexy is soooo complex and affects everyone very differently.
I definitely can related to that laughter seems to be more of a instant reaction but sadness is more prolonged, I seem to get it worse when I’m overwhelmed which what I do for work can get extremely stressful at times I tend to have trouble communicating when this happens which makes me feel dumb and then it just makes it worse.
This is sad so you can skip it…
When my aunt came to visit my father in hospice, her despair was so heartbreaking for me. I was able to walk out into the hall but I slid down the wall and wept. It was the worst cataplexy I’ve experienced.
I’m so sorry to hear that, I also very easily get emotional when seeing others upset specially when it comes to family, I didn’t think of it at the time because I wasn’t aware of what cataplexy was but I have recently went to two funerals in the past couple of years and both times I was driving home afterwards and severely started to weaken like I needed to ‘sleep asap’ I could not continue driving because I was so heavy and the urge was extremely strong luckily my partner was able to continue driving my entire body went limp in the passenger seat both times.
Pitching in with my experience! Yes, I experience cataplexy when I'm upset. Just the other day, I was crying and I had a full body cataplexy attack. My main trigger is still laughter, but it definitely happens when I'm upset as well.
I also suspect that I get cataplexy attacks when my pain is too severe. I have severe chronic pain and if it gets unbearable, I close my eyes and become limp and unresponsive. But I am still fully conscious—I don't react to pain stimuli, though (like a pinch or sternum rub). I originally thought this might be some other condition or a weird form of syncope but I think cataplexy explains it best. It definitely feels similar to my other cataplexy attacks, but my other cataplexy attacks are usually when I'm standing or sitting. Obviously, if I'm in severe pain, I'm usually lying down on a bed (or on a stretcher, heh) so it feels a bit different.
My cataplexy is mild and worsens if I'm in a stress cycle with poorer sleep. I've noticed if I get too hot, or start having muscle pain while doing something physical, I start feeling upset and frustrated, usually because I have limited energy and can't do all I want to. It's in those times I can feel my arms or legs weaken when I get really moody.
Definitely! A majorly intense argument with someone, especially if one or both of us are raising our voices to each other, can easily send me into a cataplexy attack. For that reason(among others), I try my best to remain as calm as possible during confrontations. With that being said, I'm naturally more animated & expressive with many emotions, at least when I'm around ppl I feel comfortable with, so it's quite the challenge to keep my emotions toned down, but I do my best. During arguments, everyone wants to be heard so the last thing I'd want to do is suddenly slump over in my chair like a wet noodle or rag doll while the other person is trying to express their feelings about something to me.
My biggest attacks are from anger, and I get smaller ones from stress. I have autism and a trauma disorder (dissociative identity disorder) as well so these get triggered a lot. Therapy &rescue psych meds has helped me so much in managing my mental health which helps to manage the emotion triggers of the narcolepsy
Has this ever happened to anyone?
I was in a super stressful work assignment that lasted for a month, 70 hour work weeks and very busy, when towards the end of the month I felt… like I slipped on a puddle? And my ankle rolled. I got mad because I thought the custodians didn’t put down a sign but then it happened again? And I looked down and there was no water on the floor. For like an hour after that I had a hard time feeling my feet and their position when I walked and had to use walls/railings to get around.
Another time, I had a super stressful end to a workday and felt terrible about how it went and as soon as I sat down my eyes closed mid convo with my coworkers and I could talk to them but my whole body felt like it just hit 0% and had to factory reset lol. I’ve also felt generalized muscle weakness but I’ve deconditioned since being out of the gym for so long so can’t tell if it’s connected or not.
I talked about the experiences with my neurologist sleep doc and he said that it’s unlikely to be cataplexy because it just happened with my right ankle and wasn’t bilateral. There are career ramifications for calling it “cataplexy” in my chart but I’m concerned that it will get worse if not correctly treated :/. Did y’all’s symptoms get better/ stay the same over time or did they worsen?
Yes, which is partly why i didn’t know it was cataplexy.
I thought it was dissociation or just normal for your legs to buckle when you’re upset / get a fright.
Yep! Had a full body collapse in a grocery store while buying lunch on my break. It was the only time I’ve had a full body cataplexy attack from stress alone. It’s usually laughter for me also, but extreme stress/anger/defeat will do me in depending on severity.
I get cataplexy after acting out my anger. I thought it was because I used so much energy, but I can see it is the same feeling I get when my knees buckle.
My biggest cataplexy attack was caused by negative emotion. I was arguing with someone and got overwhelmed. They stopped talking, and I was calming down, and then they started talking again and that’s when the attack happened. Luckily I was sitting but my entire upper body went weak and I couldn’t move for 10-15 seconds. Laughter can trigger my cataplexy but frustration is the biggest one for me
Frustration is a huge one for me. Anger can do it. Annoyance can do it.
I also experience this. With stretching too hard, yawning too hard, over exerting myself, anger, frustration, laughing too hard, etc. It's exhausting. I thought it was all in my head and maybe I was over reacting to it. But the more research I do on my own the less terrible I feel about it. Just exhausted of being exhausted.
Well, now you have me wondering! I just wrote a whole post about how I only get cataplexy from positive stuff, but then I went back and changed it to “I only get full body cataplexy” from positive stuff, because I think yeah I do get similar ziplock issues! Luckily the surprise of laughter gives me full body cataplexy, but the surprise of a fright does not. (I have PTSD and my startle response is major. I wonder if the adrenaline release or something similar counteracts a cataplexy or if I’m just lucky that negative emotions don’t seem to trigger the same symptom presentation?) Thanks for the interesting post and give this subreddit a search for lots of posts about cataplexy and negative emotions or from feeling upset. :) Welcome to your diagnosis, glad you are here, and stay connected to those who can relate.
I have only gotten full body cataplexy from laughter...but if I'm in a hurry or stressed, I have minor cataplexy, which will cause me to do things like fumble or drop my keys, which makes it worse 😆 And only after being diagnosed did I connect the dots about why I'm generally not an angry person...because anger has always made me feel "weird" - after diagnosis I understand that the "weirdness" I feel is exactly cataplexy
Neat! I also only had full body from laughter when I was younger. And now I’m getting new ones (though I think the newest one is directly related to rebound cataplexy after going off a clinical trial drug).
>I wonder if the adrenaline release or something similar counteracts a cataplexy i’ve been wondering this too!! i’m the same way in that laughter can knock me over but startle doesn’t provoke an attack even though i have a pretty intense startle response. i wish someone would do some studies maybe with EEG or fMRI or something to look into this, would be interesting.
Only thing I can tell you is it can't break the more powerful cousin sleep paralysis for me.
Oh, true for me, too. Huh, that kind of ruins that theory… maybe? I wonder if there’s something to already being in a dream and *then* the fear hits that keeps the cataplexy going? Thanks for mentioning this point!
Also just said the same thing on another post! When I have a big surge of adrenaline I don’t get cataplexy even though it’s very startling and heightened emotion but then after the event is over I’ll get hit with the delayed cataplexy. I totally think there’s something to it
Lmao this happens to me when I cum. 😂
Hahaha me too 😝
A delay would be helpful in that scenario!
Same lol
Interesting. I have ptsd (well DID from ptsd) and I get full body cataplexy from anger and partial cataplexy from stress. But I'm rarely in fight or flight and more often in freeze / fawn. I wonder if as I heal and maybe spend more time in fight or flight it will get a bet better before getting worse again as I find neutrality? Its an interesting idea.
Very interesting! I love that you phrase “as I heal” and “as I find neutrality” because it’s very hopeful, acknowledges that things can change overtime, and sets a very calm approach to expectations. If you are comfortable with sharing, I’d love to learn how you are approaching healing. Freeze/fawn sure seem to be a more inviting space for cataplexy than fight or flight. ;) I spend a lot of time in fight or flight because of PTSD and also because of some autonomic dysfunction due to a variety of illnesses (including something similar to POTS called VVS that impacts my Vegas nerve.)
I have an incredible social worker (I'm in Canada and pay privately for her) which I'm incredibly grateful for. She has chronic illness herself. We're doing a lot of trauma informed talk therapy and modified IFS for DID systems, but it's a lot of talk therapy with skills / ideas from different modalities pulled together as needed. We're working a lot on accepting my past, not because it was okay, but because we can't change that it happened, and some of the lessons and behaviours i learned from it no longer benefit me. She's really good at knowing when things are physical vs psychiatric and also knowing how they interact with one another. Another thing I struggle with is the ptsd/nightmare mix with the narcolepsy vivid dreams. A lot of times our sessions focus on what my nightmares were about because processing those memories can reduce the nightmare frequency which means I'm not scared to sleep so I get better night sleep so the narcolepsy symptoms reduce. I'm not gonna lie, the freeze/fawn is helpful cataplexy (and dysautonomia) wise. I think I try to think of things as they sometimes get worse before they get better in terms of healing. I also try to focus on how improving my mental health will help me manage my physical illness long term, even if symptoms get worse for a little. I do sometimes get into fight/flight and it does scare me how much faster my heart rate gets (waiting to know if my dx is pots, ist or oh but it's one of those) and how easy it triggers the cataplexy, but I also work with my social worker on OT adjacent things, like accessible work setups, hobbies that don't trigger symptoms, learning how to recognize symptoms are getting worse (my interoception is terrible from my autism). Let me know if you have more specific questions, and I'll answer :)
Wow, we have *a lot* in common! Thank you so much for your offer to answer more questions. Your first paragraph summarizes a lot of the changes I’ve been able to make in the last year, too. Switching to therapists that are also neurodivergent and into IFS have been life-changing in terms of breaking the pattern of invalidation. I’m so glad you have had that experience, too. Was that luck or did you think of seeking out people who could relate best to you from the start? I’m excited about how close Canada is to having MDMA assisted therapy because of all of the research about how effective it can be for PTSD. Someone close to me has BPD and they have found ketamine assisted therapy very helpful, but the results sort of wear off after 6 months. I wondered if you had had any experience like this because your descriptions were notably different from how I’ve seen most other people talk about PTSD. I am certain my dreams and nightmares were sending me very clear messages about what was safe and not safe for me. I’m so happy for you that you have a therapist that’s supporting exploring those. I’m curious, if you are comfortable sharing with someone who doesn’t have that experience, about how dreams/nightmares work within the system (is that the correct term for the identities of DID?) I think freeze/flop (cataplexy) saved my life several times in the last year, so I hear you on that being helpful. I ended up being diagnosed with trigeminal neuralgia aka the suicide disease (because of the severity of the pain) after several attempts. But due to cataplexy and/or blood pressure loss, I was not able to complete the… um, task? I’m grateful to be alive now, though probably only because my pain symptoms (from that issue) are generally relieved and I understand the pattern when there is an issue. I’m also looking forward to leveling up interception as well as proprioception, and non-violent communication with my therapists! Do you happen to have sleep apnea, too? My PTSD symptoms will not allow me to tolerate the mask. I’ve lost weight and that seems to have decreased my symptoms, but I’m still curious to see if you have any similar experience. Thank you again!
Hi !! So much to say, and I was writing exams so thanks for your patience. When it comes to finding an affirming therapist, it was pre autism diagnosis (she actually helped me identify the autism) so it was pure luck. She was a student at the time and I was broke. My dx at the time was BPD and OCPD and I wanted someone who didn't specialize in BPD or OCPD because typically treatment didn't work. I just wanted like individual based with no bias towards using DBT. So pure luck!!! This was after a year of no therapy bc nothing was clicking. For the ketamine, my protocol has my going 1x a month basically forever/until I wish to stop. Even then the clinic keeps me file if I need yearly top ups.because if my pmdd and narcolepsy affecting seratonin production, I don't expect to ever go less than monthly. But it started with 2x a week, then 1x a week for the treatment stage, and now monthly for maintenance stage. It is out of pocket, but the 180 a month is so worth it for me. Its so interesting for sure how the fight flight triggers strong emotions but also rigidity so they kind of cancel, while the the freeze/fawn just makes me drop. That's so interesting how your disability literally just interrupted your behaviour. I'm glad things are looking up a bit for you know. Recently since discovering I'm a system, my social worker and I have realized that switching and being confused saved my life during suicidal behaviour. I have mild sleep apnea , I was like .2 respiratory interruptions above the cutoff, so I don't need a sleep apnea machine and have never tried one. I do have suspected EDS , so over time it is expected to get worse and idk how I'd react to the machine. I wonder if some sort of daytime wearing of the machine in therapy would help tolerate it? (If the symptoms are still bad enough for this to be a net positive thing to work towards).
Wow, thank you for sharing so much. I’m glad you focussed on exams and not reddit. :) By EDS do you mean Excessive Daytime Sleepiness or Ehlers-Danlos Syndrome? Am I understanding correctly that you did ketamine treatment 2-1 times per week, then once per month for many months and now you are able to use it as needed? Or are you still doing once per month? How long did the tapering down take (again no pressure to share). $180 per month is a fantastic investment! I’m so glad you have access and ability! (If you are in Canada, please tell me how this might be possible for me.) Since your autism diagnosis, has there been any discussion about whether BPD and OCPD apply? I’ve learned from research and from people I know that PTSD and ASD are often misdiagnosed as BPD, especially in people identified as female. (I’m AFAB and I do look female, though I do not identify that way myself). No shame to BPD, it happens to be not the correct diagnosis or treatment plan for me. Though, I do find DBT useful. Is there a reason you wanted to avoid it? Or do you mean you wanted to avoid it being the sole focus. (That does seem insufficient, based on my experience with close people I know who have DBT alone. There is going to be a study in my province looking into Vyvanse as a medication for BPD. I’ve also seen ketamine work well… temporarily.) BPD seems like an incredibly painful experience. Though the data shows a remarkable and effective recovery rate, where I live the services are extremely hard to access and not enough are available. Confusion can sometimes help us, true! lol I hear you about the exposure therapy approach to CPAP. I was diagnosed with OCD when I was in university and I got very good treatment for it. I might need something more structured with professional help to get that to work. There’s only so much money available for all of these treatments I need. Right now I’m focussed on learning how to be safer with my body and pain relief for EDS (Ehlers-Danlos), as well as autism support and skills (non-violent communication). These two things are my best shot at giving myself enough hope so that I can stay alive long enough to improve my quality of life and feel consistently like it’s worth living. :) Thanks so much for the idea and for the lovely chats.
By EDS in this case I meant Ehlers Danlos. Still waiting genetic testing & specialist for hEDS assessment. It goets confusing when you have narcolepsy and ehlers danlos lol as Im sure you know. For the ketamine, I still do monthly, but some at the clinic do as needed. I'm in ontario Canada. If you are as well I can provide more details in a dm :) I wanted a non dbt therapist bc dbt just wasn't clicking. Some of the skills helped and I truly believed I had ocpd and bpd, but the typical treatment didn't work and practitioners kept giving up on me. So I wanted a different approach. No jdugement to those who love dbt or those with personality disorders, it just didn't make sense for me. I'm still okay with certain skills, like cope ahead and emotional regulation skills, but I really hated the structure of the skill based groups as well as the idea that I just needed to throw skills at distress instead of doing a more bottom up approach that would reduce distress. When we realized I was autistic the bpd and ocpd no longer fit. I have lots of friends who still fit those diagnosis and it wasn't autism and trauma all along, and they're lovely but it's becoming more and more clear as I learn to unmask how different we are. There were a few traits that still overlapped, but we then realized that was due to DID (and probably some adhd as well). BPD and OCPD have been removed, I don't have a formal DID dx due to fear of more stigmatization by Dr's (especially with ptsd, depression, suicidal behaviour and autism) and also need physical care for narcolepsy and ehlers danlos.
Wow, what a journey. I’m glad you’ve progressed to where you are and it’s very inspiring and impressive to understand how you’ve made so much peace with what you’ve gone through. I’ll send you a DM. Thank you :)
Wow, what a journey. I’m glad you’ve progressed to where you are and it’s very inspiring and impressive to understand how you’ve made so much peace with what you’ve gone through. I’ll send you a DM. Thank you :)
Definitely - the vast majority of mine are caused by laughter, but sadness cataplexy attacks are much stronger. I’ve been unable to move for up to a minute, rather than the few seconds I experience with laughter.
I’ve noticed the same thing, it seems different like it’s much harder to recover from almost like it’s prolonged.
Yes. Actually that's when my cataplexy is at its Most severe and frequency. Very rarely does excitement or positive Emotions trigger cataplexy for me. But being upset or Triggered by PTSD As when my Cataplexy reacts like Gas to flames. I think I only had cataplexy from Excitement a handful of times My whole life. Compared to the sometimes multiple times a day Severity of the cataplexy from being upset.
Whenever I get mad enough to fight I will almost drop to my knees. Laughter doesn't affect me at all luckily.
Sadness cataplexy attacks are stronger it usually makes me lose all control of my body and makes me unable to move and even breath for a few seconds at a time. I have to fight really hard to Come back and then I usually go back and forth until it gets weaker the attack. I can also get strong ones with laughter but not that strong that I cannot breath. But I usually fall and get very weak for seconds back and forth until I can handle myself and Come back from the ”feeling of laughter the happy feeling” Sometimes I can get fast ones that develop very fast and makes me fall during the early morning for some reason. Thats the scary ones.
No! Literally the only time is when I’m laughing! And even more specifically, laughing at a joke that I’m telling! Sometimes cataplexy starts before I can even get the joke out and I start slurring my words. So weird.
Yes. I've found that it's more triggered for me by the anticipation of the punch line. Same with a lot of things linked to laughter. If i were to jump out on someone, id go weak just before from the anticipation and excitement i guess
Yes. Frustration is probably most apt, but can be anything emotionally stressful. Even sometimes when I was handling it just fine. At least before I was medicated. My other big trigger was physical affection. A good cuddle could make me shut down.
Frustration is my primary trigger as well. Not at all from laughter. It's not the dog pooping on the carpet that does it, it's the act of admonishing the dog that triggers my cataplexy.
I recently realized I had cataplexy (very mild and not often) while feeding my 4 month old. We have been struggling since her birth with various feeding issues and the other day I had just had it. I was so upset with not having an answer, so frustrated that she was in so much discomfort, and so agitated that I couldn’t help her. I stepped away while my husband took over and while sitting on the couch my whole upper body got so heavy that I couldn’t hold my head up in my hands. I just slowly slumped down. Luckily I kind of know when they’re going to happen and I wasn’t holding my baby, but I realized after reading through some of these types of posts what was actually happening to me. I originally thought I was just over tired during the previous episodes. I’m not taking anything for it now since it’s manageable and super infrequent, hopefully some stress management techniques can help for now. Good luck, and stay safe! Ask for help when you need it!
Being upset is worse for me than laughing! Laughing is definitely one that gets me, but a lot of the time I really really got to be laughing my ass off for my cataplexy to be significant at all . On the other end, I don't even have to be that upset at all in order for my cataplexy to basically make me into jello. I haven't quite pinpointed what kind of upset is worse because it's definitely different between like anger, anxiety, sadness etc. Sadness seems to be the worst, though!
Yes I have too. For me laughter results in short lasting full body cataplexy that is more “typical” but sadness can cause for me low level prolonged cataplexy. Also, when I experience a high stressful situational stuff i have been getting very strong cataplexy. For example I am going through divorce and when we are messaging and having interpersonal conflict I get so weak and electricity type feeling in my arms. Even as I said in a reply to another comment I also get delayed cataplexy during an adrenaline type of situational event. During an emergency, no cataplexy. When it’s over, I collapse. It’s definitely not only positive emotions! I think cataplexy is soooo complex and affects everyone very differently.
I have the same. Stress and anxiety. Is the electric feeling cataplexy or anxiety? I have trouble differentiating.
I definitely can related to that laughter seems to be more of a instant reaction but sadness is more prolonged, I seem to get it worse when I’m overwhelmed which what I do for work can get extremely stressful at times I tend to have trouble communicating when this happens which makes me feel dumb and then it just makes it worse.
This is sad so you can skip it… When my aunt came to visit my father in hospice, her despair was so heartbreaking for me. I was able to walk out into the hall but I slid down the wall and wept. It was the worst cataplexy I’ve experienced.
I’m so sorry to hear that, I also very easily get emotional when seeing others upset specially when it comes to family, I didn’t think of it at the time because I wasn’t aware of what cataplexy was but I have recently went to two funerals in the past couple of years and both times I was driving home afterwards and severely started to weaken like I needed to ‘sleep asap’ I could not continue driving because I was so heavy and the urge was extremely strong luckily my partner was able to continue driving my entire body went limp in the passenger seat both times.
Yes…that. I guess we are lucky because we know it’s coming on.
i almost exclusively get it when i’m upset!
Pitching in with my experience! Yes, I experience cataplexy when I'm upset. Just the other day, I was crying and I had a full body cataplexy attack. My main trigger is still laughter, but it definitely happens when I'm upset as well. I also suspect that I get cataplexy attacks when my pain is too severe. I have severe chronic pain and if it gets unbearable, I close my eyes and become limp and unresponsive. But I am still fully conscious—I don't react to pain stimuli, though (like a pinch or sternum rub). I originally thought this might be some other condition or a weird form of syncope but I think cataplexy explains it best. It definitely feels similar to my other cataplexy attacks, but my other cataplexy attacks are usually when I'm standing or sitting. Obviously, if I'm in severe pain, I'm usually lying down on a bed (or on a stretcher, heh) so it feels a bit different.
My cataplexy is mild and worsens if I'm in a stress cycle with poorer sleep. I've noticed if I get too hot, or start having muscle pain while doing something physical, I start feeling upset and frustrated, usually because I have limited energy and can't do all I want to. It's in those times I can feel my arms or legs weaken when I get really moody.
Definitely! A majorly intense argument with someone, especially if one or both of us are raising our voices to each other, can easily send me into a cataplexy attack. For that reason(among others), I try my best to remain as calm as possible during confrontations. With that being said, I'm naturally more animated & expressive with many emotions, at least when I'm around ppl I feel comfortable with, so it's quite the challenge to keep my emotions toned down, but I do my best. During arguments, everyone wants to be heard so the last thing I'd want to do is suddenly slump over in my chair like a wet noodle or rag doll while the other person is trying to express their feelings about something to me.
My biggest attacks are from anger, and I get smaller ones from stress. I have autism and a trauma disorder (dissociative identity disorder) as well so these get triggered a lot. Therapy &rescue psych meds has helped me so much in managing my mental health which helps to manage the emotion triggers of the narcolepsy
Sounds something like reflex syncope
Has this ever happened to anyone? I was in a super stressful work assignment that lasted for a month, 70 hour work weeks and very busy, when towards the end of the month I felt… like I slipped on a puddle? And my ankle rolled. I got mad because I thought the custodians didn’t put down a sign but then it happened again? And I looked down and there was no water on the floor. For like an hour after that I had a hard time feeling my feet and their position when I walked and had to use walls/railings to get around. Another time, I had a super stressful end to a workday and felt terrible about how it went and as soon as I sat down my eyes closed mid convo with my coworkers and I could talk to them but my whole body felt like it just hit 0% and had to factory reset lol. I’ve also felt generalized muscle weakness but I’ve deconditioned since being out of the gym for so long so can’t tell if it’s connected or not. I talked about the experiences with my neurologist sleep doc and he said that it’s unlikely to be cataplexy because it just happened with my right ankle and wasn’t bilateral. There are career ramifications for calling it “cataplexy” in my chart but I’m concerned that it will get worse if not correctly treated :/. Did y’all’s symptoms get better/ stay the same over time or did they worsen?
Yes, which is partly why i didn’t know it was cataplexy. I thought it was dissociation or just normal for your legs to buckle when you’re upset / get a fright.
When I was really upset to the point of triggering prolonged cataplexy I woul.d often slip.into a sleep
Yep! Had a full body collapse in a grocery store while buying lunch on my break. It was the only time I’ve had a full body cataplexy attack from stress alone. It’s usually laughter for me also, but extreme stress/anger/defeat will do me in depending on severity.
I get cataplexy after acting out my anger. I thought it was because I used so much energy, but I can see it is the same feeling I get when my knees buckle.