This topic contains 34 replies, has 7 voices, and was last updated by Sleepy RBD 2 weeks, 2 days ago. This post has been viewed 741 times
- November 27, 2018 at 7:47 am #8364
Good morning! I’ve been thinking about asking this for some time and thought that maybe the question would generate a discussion that would perhaps also be helpful to others.
For those of you who have cataplexy, have you found that once a particular situation, experience, person, etc. triggers it that you are more likely to be triggered by a similar situation in the future? For me, it’s like having a heightened sensitivity, being on guard, or maybe just a greater awareness of the possibility. I just can’t seem to trust this crazy body like I used to be able to do. Things can change in a second…
@sk8aplexy @ferret As always, many thanks in advance… 🙂
I tagged you because I wanted to let you know that I could definitely relate to your reply in July under the topic of Having a Hard Time (rant). (I also thought that you might be willing to offer your opinion and perspective here.) Triggers and symptoms have seemed to increase for me, as well. I’m not trying to be discouraging either, but it just is what it is…
On a positive note, I’m glad to hear that you are still teaching. Keep fighting and trying to enjoy and experience the things that help to keep you going!November 27, 2018 at 8:06 am #8369
Yes, once a trigger always a trigger. You put it on a mental list and that’s how you become really good at protecting yourself in the split seconds before the cataplexy hits.
I love a one liner both making one and being on the receiving end. I literally dissolve into a puddle. Any sudden unexpected noise… like a car backfiring or a firecracker going off (frequent in Mexico). Any sudden unexpected anything… like a bucket of water thrown out a door onto the sidewalk where my next steps will be or turning around and someone is right there where they shouldn’t be. Grief.
Now, on the cannabis oil since December 2nd, 2014, they are all rare events for me. I count my blessings and take nothing for granted.November 27, 2018 at 10:03 am #8371
Thank you for your response and the examples! The “any sudden unexpected anything” trigger unfortunately nails it for me, too. That’s what makes it even more challenging because one never knows when such will occur. I think that may also contribute to the difficulty in others being able to understand. I can appear to be functional and “fine” one moment and the next…well, I’m not. The thing that stopped me from posting about this topic the other day was a very loud sonic boom that shook the house. Although I was sitting when it occurred, my upper body was down for the count in an immediate reaction.
For years, I would travel on my own and now I have to question it. About a year and a half ago my body decided to start reacting to airport situations. Since then, it’s almost predictable. I guess the day and the circumstances of the first appearance were what one might describe as the “perfect storm” for an event to occur. Fortunately since that day (except for my return flight on that trip), my husband has gone with me. I’ve had to make some necessary changes in my expectations and preparations* in order to keep going, but I also remember to “count my blessings and take nothing for granted”. I know how quickly things in life can change.
*Since I now request wheelchair assistance and wear my medical alert bracelet as precautionary measures when showing up for flights, I will say that when I stroll into the airport or up to curbside check in with my rolling bag by my side I have received numerous skeptical looks and the question as to when I might need help. For example, on our flight home last month while I was checking in at the counter, the airline employee had just asked me when or if I still needed assistance. I managed to get out something like, “Yes, probably right away” as my body gave way and I lost my grip on the counter. Fortunately, the guy with the wheelchair arrived at that moment and made an amazing catch. My husband made some comment like, “Great catch!” I agreed and we were on our way…
Thank you for your encouragement and for sharing the journey!
Any suggestions or ideas are always greatly appreciated.
Edit: I wanted to add that I really can’t blame others for their skeptical looks or questions. After all, I am quite the mix of what seem to be contradictions in what I can or can’t accomplish in any given moment. I guess one can somewhat expect such things when dealing with an invisible illness. Therefore, I remain truly grateful for the functional times, experiences, and ability to adapt and keep going. Moving forward…November 27, 2018 at 1:11 pm #8373
“Any sudden unexpected noise”…as you were saying…Here’s another example…
It’s one of those cold days which means an exercise inside day for me. I had just finished the warm up stretching part of an exercise video when my husband came down to haul off an old loveseat from our sunroom. I was moving on to the next part of the routine when while trying to dismantle the loveseat, he suddenly dropped it on the deck outside. You probably already know where this story ends…The loud noise of the loveseat hitting the deck resulted in me being on the floor similar to what you described above.
I decided while I was trying to recuperate that I would go ahead and add this example. It just all goes along with the continuing story in the daily life of one who has cataplexy. Here’s hoping for no loud booms as I try again later today. 🙂November 27, 2018 at 2:08 pm #8376
Your hubby’s comment “nice catch” would have had me down for the second time in as many minutes. Mine used to say things like that all the time. We were both smart asses being smart asses but he was my rock and reacted to my triggers very quickly. I really miss him but am learning to be confident on my own again. So, I made an error on the date I start taking the cannabis oil. It was 2014 not 2015… because my hubby passed away on September 22nd, 2015. It was he that encouraged me to try the oil and it was he who noticed the effect on my cataplexy within two weeks. After nine months, I think he thought it was safe to let go.
Life goes on.November 27, 2018 at 4:51 pm #8378
Tears and hugs coming your way…I’m so sorry to hear about your husband. I can’t begin to imagine your loss and pain. My hubby and I have been married for a long time and I can’t even think about what my life would be like without him. We have been through a lot of life together and he has always stood by me and continues to do so. He also makes me laugh and can send me down with some smart remark or crazy comment in a heartbeat.
I’m glad to hear that you are learning to be confident on your own again and to know that your husband was able to see how cannabis oil was helpful to you before he passed away. I can’t even imagine…
Many thanks again for sharing this journey and information with me and the others who might one day come upon the forum and also find it helpful along their way…November 27, 2018 at 6:32 pm #8381
Look how much you have also shared with others. It’s a journey and, like a good story, is best shared. How I wish a forum or any means of communication had been available to me when I was diagnosed. I was scared.
This forum, because it is anonymous if you so choose, means you can bare your soul and ask questions. Somebody may have an answer but, more importantly, you will have unburdened yourself by simply asking the question.
Chin up! Don’t ever give up!November 28, 2018 at 10:22 am #8391
A few years ago, I would have never thought that I would be as active as I have become on speaking out, even anonymously, on a forum of any kind. It’s probably hard to imagine from some of the things that I have written, but I’m normally a rather private individual. (lol)
Recognizing the value of the information on the forums (the old NN ones and now these), I finally decided to take the plunge, start asking questions and be a part of getting the story out there. I was also motivated after learning about my grandmother’s sleep issues and wanted to be a part of telling the story that wasn’t “talked about much” in her lifetime.
On a positive note, I was able to complete my exercise video and post on the forum this morning without any sonic booms, other loud noises, or “any unexpected anything” to derail my efforts. It can all change in a moment, but so far… 🙂November 28, 2018 at 11:11 am #8396
@ferret, I’m so sorry to hear about your husband.
@sleepy-rbd, my main triggers are when I get REALLY mad, really nervous, and super excited. I don’t have laughter as a trigger and I have PTSD so thank goodness I don’t have loud booms as a trigger or I’d be hopeless.
I try to control my anger, I mean who likes to be angry anyway right? But I remember one day not long ago, my husband was really digging into me about something. I mean people complain about women being naggy, he was really grating me and I couldn’t for anything inside of me void him out. My patience was wearing thin and I asked him to please give me some space for a minute because I could feel myself starting to get angry and I shut the kitchen doors. But he came through and kept going. I had a teapot of boiling water and at that second I watched as I lost control of my hands and legs and the teapot went falling as I simultaneously went straight to the ground. Thankfully, minimal water splashed onto me and it was a cooler day here in the south, so I had pants on and not a dress or shorts, but it was a day, that’s for sure.
When I used to go to school on campus and had to take exams, people would get a laugh as faithfully every single time it would get a chuckle when my pencil would fly out of my hand when I lost use. And I had to do all of my speeches for my public speaking class from home on video.
I know what you mean about people looking at you differently because of invisible illness. Sometimes I have to use the wheelchair cart in the supermarket and I get snickers or sneers from people as if I’m just being lazy, and my anxiety spikes because then I often think the workers are going to tell me I have to return it to the front, so I’m always sure to wear my medical bracelet too along with bringing my health medical card in my purse.
JNovember 28, 2018 at 11:36 am #8404
I’m there with you @tinyelephants. I’m reading your post and wondering about the other emotions that come with or precede anger. Frustration, indignation, outrage at injustice. imho, they all go hand in hand as cataplexy triggers.
You are lucky that you didn’t seriously injure yourself and I sincerely hope that your husband gives you space, in the future, when you need it.
For me, cataplexy would escalate at my inability to speak during an episode. Feeling helpless is frustrating beyond belief.November 28, 2018 at 12:59 pm #8407
Thanks @ferret, I think I really scared him with the teapot episode. He’s seen me drop before but never with anything that could hurt me. I think we’re both really grateful it didn’t end in a trip to the hospital.
I do get the inability to speak for several moments in my episodes of cataplexy, although it feels like forever. I’m not sure if this is normal but I also get the inability to move my neck, it’s like I can only move my eyes for those moments. It is frightening.November 28, 2018 at 1:38 pm #8410
I’m also glad to hear that you are okay. My strongest triggers used to be feeling frustrated, being caught off guard, or feeling overwhelmed. Those things would cause weak knees or send me down before anything else would. Since my cataplexy responses became more sensitive, I seem to respond to a broader range of triggers in a more severe way than in the past. I have no idea the reason for that or if there is one, except for it just happened. I also think as @ferret said that sometimes those emotions can “all go hand in hand as cataplexy triggers.”
“Feeling helpless is (definitely) frustrating beyond belief.” I think that breaking the cycle once it starts is at times harder than what others might realize and also very frustrating which probably just adds to the whole situation. (Insert heavy sigh.) For me, this is especially true with cataplexy caused by what one might consider a negative emotion. I guess it’s because I am already in a _______(fill in the blank…frustrated, overwhelmed, aggravated, etc.) state of mind and then it just goes from there. I think it was Sk8te who talked about trying to learn to be comfortable with that feeling of paralysis. I try to remember that when I’m stuck and unable to respond while hoping that things won’t escalate even more. It’s not easy…
I don’t stutter unless cataplexy is involved and there are also times that I can’t get the words that I’m thinking or trying to say out at all. I have learned the hard way that if I start stuttering or am having trouble talking, it’s not a good idea to try walking.
All of those things can be quite frustrating and scary.November 28, 2018 at 2:01 pm #8414
Here’s a tip for you both.
Try (as sk8aplexy has often stated) to relax, take deep breaths and get your equilibrium back.
Do NOT do as I have done (when angry) to try and have the last word when you can finally speak. Telling someone to F off will send you back into cataplexy. The proud feeling of satisfaction is just that strong an emotion.November 29, 2018 at 8:41 am #8416
Thank you for the reminders and the tip.
I have learned (and am still learning) so much from you guys that I really am getting better at trying to just go with it all. Fighting cataplexy, as (I think) @sk8aplexy has also pointed out, is just futile anyway.
I try to remember to acknowledge and accept it all for what it is, do what I can to be proactive especially in terms of lifestyle choices*, and keep moving forward while counting my blessings and taking nothing for granted, as you mentioned above. 🙂
(*also tagging @natdoc on that one)January 12, 2019 at 5:58 am #8796
My cataplexy is very well managed by Xyrem but before laughter and anger were triggers for me as well as sometimes having no trigger. Now it takes intense prolonged laughter to be an issue and anger can sometimes cause it but it is more limited to weak cataplexy that I can feel is there and may affect my face and eyes but not really a head dropping/fall risk concern.
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