I haven't been given meds yet. I was diagnosed this year in July. I've had symptoms of narcolepsy and cataplexy since I was ten. I'm 22 now, will be 23 in January. I tried to get medicaid once I was diagnosed but they said it was a disability case. I was denied twice and now I have to go before the judge to see if I get approval but I have to wait 18 months for that. I don't have enough money to pay for meds. I haven't been able to work. I've fallen asleep in job interviews..on phone & in person
You did a wonderful job explaining this disease. I hope Xyrem works for you. The great thing about Xyrem is that it will control cataplexy long after the drug is eliminated from the body. We don't know why. I run a sleep evaluation center and can tell you that only about 50-60% of people tolerate the drug; but, when it works it is life-changing. Good luck.
My experience with Xyrem hasn't been positive. I found I had some packed away recently and tried it. It just feels toxic. Same as before - as if my body has a hard time eliminating it (I started having a lot of side effects last time & don't want to push it.). I've actually had some success with Klonopin. I never anticipated a benzo would benefit me, but it certainly has.
Sorry to hear about that. Unfortunately Klonopin doesn't affect cataplexy. This may not be too bad for some, since cataplexy is not an all-or-none phenomenon. Most narcoleptics have some degree of cataplexy or even none. In the world of sleep medicine, Klonopin is the benzo of choice for many disorders like REM behavior disorder, sleep maintenance insomnia, or even periodic limb movement disorder. It just seems to work much better than others. I'm glad its working for you.
Definite bummer that I react badly to the meds that cut the cataplexy, but I'm glad the Klonopin is working, too! I haven't had nearly the drop off in effectiveness that I've had with other treatments, either. The only other thing I can say that I've seen results sans side effects with is biofeedback, but even that occasionally triggers migraine storms.
If it wasn't for the cataplexy I'd be a much more functional person.
That's interesting. Are you talking about neurobiofeedback (using EEG)? There are some docs in my community using this but I can't seem to find any credible literature (studies) on the subject. I have not heard of this being used for cataplexy, but perhaps I should look into this more.
Yes, using EEG. I was mostly using it to help sustain consciousness. I saw a positive trend over time. When seated trying to remain focused on the audio/visual stimuli I had progressively quicker drops in delta waves. At a time where I was trying to recover from bad responses to medication it was the most gentle avenue.
My grandpa has exactly what you have. He hates it. He'll be in the middle of a conversation And if he feels any emotion he will just fall asleep for like a minute. He can't drive because he's already gotten into 2 wrecks.
I am only 18, and was diagnosed a year and 3 months ago with severe Narcolepsy and Cataplexy. It is hard every day to deal with, but I try to bring more positive feelings into my life to help me fight it. A lot of times, I dont feel like anyone does or could understand what it feels like to have different "episodes" occur, but seeing this video made me feel less alone.
Glad you were able to find some empathy on the matter. It really is impossible to describe the experience of having narcolepsy in any concise manner, so it isn't something you can simply summarize for someone else and have them understand. Eventually, though, when you have come to understand enough about it yourself you'll meet new people who you can inform and they will know you and what you deal with. It's the relationships from before diagnosis that give rise to frustration ...
No. I feel bad for people if they seem to have narcolepsy like symptoms related to immunizations, but as far as I can tell it's a familial/genetic trait I have inherited.
I have the terrible 2 and you tell it so well. Would love to chat. I'm from Sydney Australia and I still drive and work and would love to see if I could help. I can also beat an attack......,.,..,. Rarely but it cam be done. It feels like trying to move a house to move a muscle but it can be done. bluewaterhuntingbear@live.com is my email. Hope to hear from you. That's one attack I can predict and look forward too. Cheers bear
I'm honestly not much for chat. Messaging a little here on Youtube is fine with me, though. I do understand what you mean by "beating" an attack. My resistance is fairly high - meaning I can balance my response to a trigger to keep some modicum of control ... but there are times where the burn and fatigue are just too much. My cataplexy has intensified over the years, too. Very perceptibly.
oh my goodness I can so relate! fellow narc. I do the not being able to find the awesome word I just had thing ALLLLLLL THE TIME. lol really annoying. enjoyed hearing your story!! version 2.0 is on my playlist somewhere as well.
Thank you... Not even the doctors I have been to have been able to explain it as you have in this video. Thank you...I also pray that there is a cure or something to help Cataplexy.... Because I have it and I too am supper sensitive and defensive about it.
How beautiful u r. I do not have narcolepsy so I can not relate. I have been interested about it lately for some reason. U might also want to try looking into some natural herbs that might help. I don't normally make comments on utube but felt the need to say something here. Then again, perhaps u r perfect just the way u r. If u need to sleep, then sleep. Enjoy ur dreams while u r awake and enjoy ur sleep while u sleep.
@nololtoday First off, this just seems like an inhumane prison sentence within your own body. I can't imagine not being able to hug or kiss affectionately. I have a cousin that has been put on psychotropic medications and I can't tell you how, literally, insane it has made her. If these drugs aren't working for you, can you get off of them and try something that is more DNA and nerve focused? Prolonged exposure to Solfeggio tones and/or acupuncture? Something that treats down to the DNA.
@nololtoday So, when people do street drugs, eventually the effect is that receptors will stop reacting to dopamine due to over stimulation. The brain starts to protect itself as if feeling good were an allergy. Have you ever heard of any treatments that may urge you to just laugh your ass off, over and over and over, or have someone hug and/or kiss you to the point that the brain will stop being receptive to the chemical attack that makes you cataplexic? You know, just burn out the receptors.
I think you have a LOT of misconceptions about what cataplexy is and how it works. Who the hell would willfully subject themselves to torture for a goal of being perpetually unable to feel positive emotional responses? Cataplexy isn't really any fun but dulling the already reflexively reserved emotional responses even further would lead to such severe depression. I can't imagine the survival rate for your little theory would be very high.
@nololtoday Emotions cause the brain to paralyze the body as if it were sleeping. I know. What I was going at was a therapeutic method of combating the brains urge to paralyze the body through repeated therapy. Like in the treatment of phobias. Thus, a person being able to feel emotion and sidestep a programmed response by the brain. I said nothing about neuroscience, deadening nerve endings or suppressing emotion. Sounds like your disease has left you short of patients and understanding. Love.
Repeatedly triggering a cataplectic response only stresses the brain & body to the point of exhaustion. Like I said in my previous reply, individuals with cataplexy are already reflexively emotionally reserved. To further inhibit emotions would result in severe depression, which is already an issue for many. The feasibility of deadening the sleep paralysis response in the wakeful state is unlikely and presents the possibility of disrupting normal sleep paralysis.
@nololtoday Well, I hope there is some hope on the horizon for a cure. I don't like to see any humans suffer any ailments, especially the ones that affect emotion and human interaction. Best wishes. Take care.
@snowrider76 The comparison of phobias (a perceived problem) with cataplexy (a reflex) is completely irrelevant. There is no theraputic way to combat it because it isn't caused from our perception but rather the physical part of the emotions themselves rather than the cognitive behavioral therapy that seems to be what you are trying to describe.
You did a great job describing it and it feels better knowing that other people can relate. I was diagnosed 2 years ago with narcolepsy w/ cataplexy. Every day i feel like im slowing losing my grip with reality, and like you mentioned, the insomnia really is counter-productive. I wish you the best of luck with the condition and hope you find a healthy balance to still keep you in a functional state, which is something i am trying to find before its too late.
Augh! Losing touch with reality! I've been having major problems with this off & on. A bit more as of late. I made it to my bedroom door this morning while still believing the hallucination I was having. It was like I opened up the door to reality & snapped out of it. It genuinely frightens me.
Hey I liked your video- I can def relate- I was diagnosed with narcolepsy and cataplexy in 2002 when I was 15, and it was a pretty crazy time for me- you have def done the best job explaining the issues than anyone, plus you are the first person I have ever come across that has the same problems... I would like to ask you a few questions- over email possibly?
eh there ,i to have narcolepsy with my share of cataplexy too,it has now put me out of work and contributed to my marriage break down.i understand fully what your going through .very hard for those who live a normal life to understand.hey but it could always be worse eh.stay positive.
I was diagnose with narcolepsy in '01, but had since 1995. My nickname in middle school and high school was "sleepy head", eventually I got used to it. The cataplexy really affected my life. Every time I experience high emotion especially laughter I would loose controls of some muscles, even my tongue, so some times it make me look like a retard. I dream a lot, probably 75% of the night, during daytime I can go into rem sleep like in 5 minutes. Some times I fall sleep standing up .
Sleepyhead isn't so bad ... I hope they didn't call you lazy. That always makes me so angry. I fall asleep standing up sometimes - I've been caught snoring :( It scares me if I'm walking somewhere & I start drifting off. Ahhhh
This may sound overly simplistic and/or cheesy, but I think the triggering of narcolepsy depends also on the emotional environment. I am in a long-distance relationship (therefore commuting a lot), and I discovered the severity of my symptoms is strongly correlated to which of my two "lives" I am in. I am not saying this is the answer to all problems, but finding a person who can support you can make a big difference from my experience. Also, if you live in us, Europe is better wrt insurance.
All I can say is EDUCATE YOURSELF. I know it's hard to find reliable information on the condition and all the worthwhile reads tend to be on the technical side but it's good for you :)
Trying to find someone to support me sounds like a nightmare scenario. Having family & friends to provide emotional support is great, but I've had very little of that. Family finds the disorder inconvenient to deal with so I rely on friends who are at the very least respectful of the challenges.
You are absolutely right about finding the correct information. I think I was somehow carried away and my message came out a bit awkward. I was not suggesting to become dependent on somebody...that would make matters worse. I was not referring to the "spoon-feeding" type of support, but to the fact of having people around who understand what the problem is and who can at least create a positive atmosphere. Anyway, I wish you all the best, hope the new treatment helps!
No problem, I sometimes get hyper, when I want to share my "wisdom" with everyone - I apologize for this. I also understand the struggle with the family (my parents are still convinced that I am just lazy; however, study/work brought me to a different country, so I am not constantly fed non-constructive criticism anymore). That was my main point I guess...once the overarching insecurity/guilt is attenuated somehow, there are better chances of striking a balance.
I don't see why you'd apologize for wanting to share insight - It's a satisfying way of blowing off steam after grinning & bearing so much. It's wonderful your life has brought you somewhere that allows you some space to sort things out :D
Thanks for the good words :). Now, I am not suggesting to run away on the other side of the globe :). I also wanted to ask if you notice any change in the symptoms during the evening. Take care ;).
Oh, I found a way to pace myself with people - probably overly aggressively but moving far far away wouldn't be necessary ... though I probably wouldn't be opposed hehe.
My symptoms seem to let up in the evening. I've read that this is a relatively shared experience amongst us. It can probably be compared to / attributed to delayed sleep phase syndrome (DSPS). Narcolepsy - MOTHER OF ALL SLEEP DISORDERS hehehehe
Do you experience the full drop cataplexy? I do sometimes but 95% of the time it's partial confined to my face/lips/jaw ( I drool and can't talk and my head drops).
I completely agree with being in this space/time continuum! It's like living 2 different lives and getting the two confused. SUX.
I appreciate all your views and just how 'reachable' you are....honest and sincere. Thanks.
Yeah, I drop. Like you say it's about 5% of the time. It's the main reason I tend to isolate myself - that shit's scary as hell when it hits fast. The facical/arms/legs only attacks are always so much easier to deal with but still I'm worried that I won't be able to stop the trigger & get it back under control.
Yes, that's correct -- a half-dozen or so times in my life. Once when a fly-ball was coming to me in the field, I was excited that the ball was actually coming to me, then PLOP, on the ground, I lost all muscular control - but only for maybe -what- 30 seconds? Another time when I was young and offered a ride on the back of a cycle, again, PLOP. Then a couple of times when my step son made me angry, PLOP. Like you, I probably have become a bit dulled in my personality - it's standard...
Weird. I wouldn't think that just a few instances would be that effective of a conditioning device. It took quite a few good spills over the course of many years to make significant change in my behavior. Most of it wasn't even attacks that resulted in a fall to the ground - just the aura of a cataplexy attack is an uncomfortable sensation and a sort of a threat of greater things to come if the emotions aren't curbed. I dropped something yesterday because my hand stopped working :/
I have cataplexy without the narcolepsy -- I go through spells of it. Once in my teens, once when I was in my 30's or so - I forget exactly. Just plop! Down I go. When I would get excited or angry.
I haven't been given meds yet. I was diagnosed this year in July. I've had symptoms of narcolepsy and cataplexy since I was ten. I'm 22 now, will be 23 in January. I tried to get medicaid once I was diagnosed but they said it was a disability case. I was denied twice and now I have to go before the judge to see if I get approval but I have to wait 18 months for that. I don't have enough money to pay for meds. I haven't been able to work. I've fallen asleep in job interviews..on phone & in person
iBJaz 2 months ago
Thanks a lot for the video, it allowed me to relate to somebody with these things I couldn't answer before.
JayNhuyenCooking 2 months ago
You did a wonderful job explaining this disease. I hope Xyrem works for you. The great thing about Xyrem is that it will control cataplexy long after the drug is eliminated from the body. We don't know why. I run a sleep evaluation center and can tell you that only about 50-60% of people tolerate the drug; but, when it works it is life-changing. Good luck.
David
DavesTreeFarm 2 months ago
@DavesTreeFarm
My experience with Xyrem hasn't been positive. I found I had some packed away recently and tried it. It just feels toxic. Same as before - as if my body has a hard time eliminating it (I started having a lot of side effects last time & don't want to push it.). I've actually had some success with Klonopin. I never anticipated a benzo would benefit me, but it certainly has.
nololtoday 2 months ago
@nololtoday
Sorry to hear about that. Unfortunately Klonopin doesn't affect cataplexy. This may not be too bad for some, since cataplexy is not an all-or-none phenomenon. Most narcoleptics have some degree of cataplexy or even none. In the world of sleep medicine, Klonopin is the benzo of choice for many disorders like REM behavior disorder, sleep maintenance insomnia, or even periodic limb movement disorder. It just seems to work much better than others. I'm glad its working for you.
DavesTreeFarm 2 months ago
@DavesTreeFarm
Definite bummer that I react badly to the meds that cut the cataplexy, but I'm glad the Klonopin is working, too! I haven't had nearly the drop off in effectiveness that I've had with other treatments, either. The only other thing I can say that I've seen results sans side effects with is biofeedback, but even that occasionally triggers migraine storms.
If it wasn't for the cataplexy I'd be a much more functional person.
nololtoday 2 months ago
@nololtoday
That's interesting. Are you talking about neurobiofeedback (using EEG)? There are some docs in my community using this but I can't seem to find any credible literature (studies) on the subject. I have not heard of this being used for cataplexy, but perhaps I should look into this more.
DavesTreeFarm 2 months ago
@DavesTreeFarm
Yes, using EEG. I was mostly using it to help sustain consciousness. I saw a positive trend over time. When seated trying to remain focused on the audio/visual stimuli I had progressively quicker drops in delta waves. At a time where I was trying to recover from bad responses to medication it was the most gentle avenue.
nololtoday 2 months ago
My grandpa has exactly what you have. He hates it. He'll be in the middle of a conversation And if he feels any emotion he will just fall asleep for like a minute. He can't drive because he's already gotten into 2 wrecks.
AMBERSINGSS16 3 months ago
@AMBERSINGSS16
That's awful. If it's any consolation to him I've fallen asleep mid sentence talking to my grandma & she's 80.
nololtoday 2 months ago
I am only 18, and was diagnosed a year and 3 months ago with severe Narcolepsy and Cataplexy. It is hard every day to deal with, but I try to bring more positive feelings into my life to help me fight it. A lot of times, I dont feel like anyone does or could understand what it feels like to have different "episodes" occur, but seeing this video made me feel less alone.
lillbaby7 3 months ago
@lillbaby7
Glad you were able to find some empathy on the matter. It really is impossible to describe the experience of having narcolepsy in any concise manner, so it isn't something you can simply summarize for someone else and have them understand. Eventually, though, when you have come to understand enough about it yourself you'll meet new people who you can inform and they will know you and what you deal with. It's the relationships from before diagnosis that give rise to frustration ...
nololtoday 2 months ago
CURIOUS....Did your condition appear around or shortly after any type of immunization? If so please let me know asap. Thanks.
aceshigh8881 3 months ago
@aceshigh8881
No. I feel bad for people if they seem to have narcolepsy like symptoms related to immunizations, but as far as I can tell it's a familial/genetic trait I have inherited.
nololtoday 2 months ago
I have the terrible 2 and you tell it so well. Would love to chat. I'm from Sydney Australia and I still drive and work and would love to see if I could help. I can also beat an attack......,.,..,. Rarely but it cam be done. It feels like trying to move a house to move a muscle but it can be done. bluewaterhuntingbear@live.com is my email. Hope to hear from you. That's one attack I can predict and look forward too. Cheers bear
bubbachee 3 months ago
@bubbachee
I'm honestly not much for chat. Messaging a little here on Youtube is fine with me, though. I do understand what you mean by "beating" an attack. My resistance is fairly high - meaning I can balance my response to a trigger to keep some modicum of control ... but there are times where the burn and fatigue are just too much. My cataplexy has intensified over the years, too. Very perceptibly.
nololtoday 2 months ago
oh my goodness I can so relate! fellow narc. I do the not being able to find the awesome word I just had thing ALLLLLLL THE TIME. lol really annoying. enjoyed hearing your story!! version 2.0 is on my playlist somewhere as well.
jessicakeysrobertson 3 months ago
Thank you... Not even the doctors I have been to have been able to explain it as you have in this video. Thank you...I also pray that there is a cure or something to help Cataplexy.... Because I have it and I too am supper sensitive and defensive about it.
yayie1 5 months ago
thank you for this
kimgattuso 5 months ago
U have this to I cant take a nap purring the day or i get catalepsy bad.
BrittLovesGlam 5 months ago
HOT !!
00belief00 6 months ago
This has been flagged as spam show
I very much admire ur courage. Its ok to sleep.
TheMacocko 6 months ago
This has been flagged as spam show
How beautiful u r. I do not have narcolepsy so I can not relate. I have been interested about it lately for some reason. U might also want to try looking into some natural herbs that might help. I don't normally make comments on utube but felt the need to say something here. Then again, perhaps u r perfect just the way u r. If u need to sleep, then sleep. Enjoy ur dreams while u r awake and enjoy ur sleep while u sleep.
TheMacocko 6 months ago
Did you mean Disorienting?
Thank you for an incredibly enlightening video.
zimago 6 months ago
@nololtoday First off, this just seems like an inhumane prison sentence within your own body. I can't imagine not being able to hug or kiss affectionately. I have a cousin that has been put on psychotropic medications and I can't tell you how, literally, insane it has made her. If these drugs aren't working for you, can you get off of them and try something that is more DNA and nerve focused? Prolonged exposure to Solfeggio tones and/or acupuncture? Something that treats down to the DNA.
snowrider76 9 months ago
@nololtoday So, when people do street drugs, eventually the effect is that receptors will stop reacting to dopamine due to over stimulation. The brain starts to protect itself as if feeling good were an allergy. Have you ever heard of any treatments that may urge you to just laugh your ass off, over and over and over, or have someone hug and/or kiss you to the point that the brain will stop being receptive to the chemical attack that makes you cataplexic? You know, just burn out the receptors.
snowrider76 9 months ago
@snowrider76
I think you have a LOT of misconceptions about what cataplexy is and how it works. Who the hell would willfully subject themselves to torture for a goal of being perpetually unable to feel positive emotional responses? Cataplexy isn't really any fun but dulling the already reflexively reserved emotional responses even further would lead to such severe depression. I can't imagine the survival rate for your little theory would be very high.
nololtoday 9 months ago
@nololtoday Emotions cause the brain to paralyze the body as if it were sleeping. I know. What I was going at was a therapeutic method of combating the brains urge to paralyze the body through repeated therapy. Like in the treatment of phobias. Thus, a person being able to feel emotion and sidestep a programmed response by the brain. I said nothing about neuroscience, deadening nerve endings or suppressing emotion. Sounds like your disease has left you short of patients and understanding. Love.
snowrider76 9 months ago
@snowrider76
Repeatedly triggering a cataplectic response only stresses the brain & body to the point of exhaustion. Like I said in my previous reply, individuals with cataplexy are already reflexively emotionally reserved. To further inhibit emotions would result in severe depression, which is already an issue for many. The feasibility of deadening the sleep paralysis response in the wakeful state is unlikely and presents the possibility of disrupting normal sleep paralysis.
nololtoday 9 months ago
@nololtoday Well, I hope there is some hope on the horizon for a cure. I don't like to see any humans suffer any ailments, especially the ones that affect emotion and human interaction. Best wishes. Take care.
snowrider76 9 months ago
@snowrider76 The comparison of phobias (a perceived problem) with cataplexy (a reflex) is completely irrelevant. There is no theraputic way to combat it because it isn't caused from our perception but rather the physical part of the emotions themselves rather than the cognitive behavioral therapy that seems to be what you are trying to describe.
IIxIIxArchAngelIIxII 9 months ago
You did a great job describing it and it feels better knowing that other people can relate. I was diagnosed 2 years ago with narcolepsy w/ cataplexy. Every day i feel like im slowing losing my grip with reality, and like you mentioned, the insomnia really is counter-productive. I wish you the best of luck with the condition and hope you find a healthy balance to still keep you in a functional state, which is something i am trying to find before its too late.
IIxIIxArchAngelIIxII 9 months ago
@IIxIIxArchAngelIIxII
Augh! Losing touch with reality! I've been having major problems with this off & on. A bit more as of late. I made it to my bedroom door this morning while still believing the hallucination I was having. It was like I opened up the door to reality & snapped out of it. It genuinely frightens me.
nololtoday 9 months ago
I can relate fellow narcoleptics & cataplextics. Nice to know that others can relate.
pint1998 10 months ago
@pint1998
hi 5! haha :D
nololtoday 10 months ago
Hey I liked your video- I can def relate- I was diagnosed with narcolepsy and cataplexy in 2002 when I was 15, and it was a pretty crazy time for me- you have def done the best job explaining the issues than anyone, plus you are the first person I have ever come across that has the same problems... I would like to ask you a few questions- over email possibly?
Curantos1 11 months ago
@Curantos1
Hey, thanks! If you want to send me a msg here on youtube that's fine with me :)
nololtoday 11 months ago
eh there ,i to have narcolepsy with my share of cataplexy too,it has now put me out of work and contributed to my marriage break down.i understand fully what your going through .very hard for those who live a normal life to understand.hey but it could always be worse eh.stay positive.
TheBuster087 1 year ago
@TheBuster087
Could DEFINITELY be worse. Gotta keep reminding myself :)
nololtoday 1 year ago
I was diagnose with narcolepsy in '01, but had since 1995. My nickname in middle school and high school was "sleepy head", eventually I got used to it. The cataplexy really affected my life. Every time I experience high emotion especially laughter I would loose controls of some muscles, even my tongue, so some times it make me look like a retard. I dream a lot, probably 75% of the night, during daytime I can go into rem sleep like in 5 minutes. Some times I fall sleep standing up .
jalmanzafau 1 year ago
@jalmanzafau
Sleepyhead isn't so bad ... I hope they didn't call you lazy. That always makes me so angry. I fall asleep standing up sometimes - I've been caught snoring :( It scares me if I'm walking somewhere & I start drifting off. Ahhhh
nololtoday 1 year ago
This may sound overly simplistic and/or cheesy, but I think the triggering of narcolepsy depends also on the emotional environment. I am in a long-distance relationship (therefore commuting a lot), and I discovered the severity of my symptoms is strongly correlated to which of my two "lives" I am in. I am not saying this is the answer to all problems, but finding a person who can support you can make a big difference from my experience. Also, if you live in us, Europe is better wrt insurance.
arbeglarotcev 1 year ago
@arbeglarotcev
All I can say is EDUCATE YOURSELF. I know it's hard to find reliable information on the condition and all the worthwhile reads tend to be on the technical side but it's good for you :)
Trying to find someone to support me sounds like a nightmare scenario. Having family & friends to provide emotional support is great, but I've had very little of that. Family finds the disorder inconvenient to deal with so I rely on friends who are at the very least respectful of the challenges.
nololtoday 1 year ago
@nololtoday
You are absolutely right about finding the correct information. I think I was somehow carried away and my message came out a bit awkward. I was not suggesting to become dependent on somebody...that would make matters worse. I was not referring to the "spoon-feeding" type of support, but to the fact of having people around who understand what the problem is and who can at least create a positive atmosphere. Anyway, I wish you all the best, hope the new treatment helps!
arbeglarotcev 1 year ago
@arbeglarotcev
Yeah I wasn't sure which you meant so I just commented on those 2 variations :P
I still haven't gone back to Xyrem ... Been dreading getting my hopes up :-/
All the best to you as well :D Keep your head up :)
nololtoday 1 year ago
@nololtoday
No problem, I sometimes get hyper, when I want to share my "wisdom" with everyone - I apologize for this. I also understand the struggle with the family (my parents are still convinced that I am just lazy; however, study/work brought me to a different country, so I am not constantly fed non-constructive criticism anymore). That was my main point I guess...once the overarching insecurity/guilt is attenuated somehow, there are better chances of striking a balance.
arbeglarotcev 1 year ago
@arbeglarotcev
I don't see why you'd apologize for wanting to share insight - It's a satisfying way of blowing off steam after grinning & bearing so much. It's wonderful your life has brought you somewhere that allows you some space to sort things out :D
nololtoday 1 year ago
@nololtoday
Thanks for the good words :). Now, I am not suggesting to run away on the other side of the globe :). I also wanted to ask if you notice any change in the symptoms during the evening. Take care ;).
arbeglarotcev 1 year ago
@arbeglarotcev
Oh, I found a way to pace myself with people - probably overly aggressively but moving far far away wouldn't be necessary ... though I probably wouldn't be opposed hehe.
My symptoms seem to let up in the evening. I've read that this is a relatively shared experience amongst us. It can probably be compared to / attributed to delayed sleep phase syndrome (DSPS). Narcolepsy - MOTHER OF ALL SLEEP DISORDERS hehehehe
nololtoday 1 year ago
Do you experience the full drop cataplexy? I do sometimes but 95% of the time it's partial confined to my face/lips/jaw ( I drool and can't talk and my head drops).
I completely agree with being in this space/time continuum! It's like living 2 different lives and getting the two confused. SUX.
I appreciate all your views and just how 'reachable' you are....honest and sincere. Thanks.
xiola23 1 year ago
@xiola23
Yeah, I drop. Like you say it's about 5% of the time. It's the main reason I tend to isolate myself - that shit's scary as hell when it hits fast. The facical/arms/legs only attacks are always so much easier to deal with but still I'm worried that I won't be able to stop the trigger & get it back under control.
:)
nololtoday 1 year ago
Yes, that's correct -- a half-dozen or so times in my life. Once when a fly-ball was coming to me in the field, I was excited that the ball was actually coming to me, then PLOP, on the ground, I lost all muscular control - but only for maybe -what- 30 seconds? Another time when I was young and offered a ride on the back of a cycle, again, PLOP. Then a couple of times when my step son made me angry, PLOP. Like you, I probably have become a bit dulled in my personality - it's standard...
KuznVinny 1 year ago
@KuznVinny
Weird. I wouldn't think that just a few instances would be that effective of a conditioning device. It took quite a few good spills over the course of many years to make significant change in my behavior. Most of it wasn't even attacks that resulted in a fall to the ground - just the aura of a cataplexy attack is an uncomfortable sensation and a sort of a threat of greater things to come if the emotions aren't curbed. I dropped something yesterday because my hand stopped working :/
nololtoday 1 year ago
I have cataplexy without the narcolepsy -- I go through spells of it. Once in my teens, once when I was in my 30's or so - I forget exactly. Just plop! Down I go. When I would get excited or angry.
KuznVinny 1 year ago
@KuznVinny
Well at least it sounds like you've barely ever experienced it :)
nololtoday 1 year ago
6:45 ... I was trying to remember "disorienting."
hahahaha
nololtoday 1 year ago