AndrewIrish
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This is a reply in another thread but it's so lengthy I think it constitutes it's own thread alone.. (just had a myoclonic jerk actually... effected both arms and chest...)
(Started as a response to my jerks being very violent and effrecting my whole body...a tonic or clonic seizure was proposed as what's actually happening... this post is kind of me going and researching and then editing the post in real time and me working through what's going on, making notes.... maybe you guys can add your opinion?)
My seizure is kind of like a 'drop seizure'... not in that I just crumple to the ground but rather I would be knocked to the ground by my body jerking and doing a quick convulsion.... but I have had my 'mega myoclonic jerks' a couple times and fallen to the ground.... but usually I'm just laying about the house when they happen... you're right... I've thought those were ust 'bad bad jerks' for years... they're not... I'm having tonic seizures almost everyday then... this makes me requestion if I even have juvenile myoclonic epilepsy at all now...
"Tonic seizures involve increased muscle tone or stiffness. Depending on how quickly the seizure starts and how long it lasts, tonic seizures may be a gradual movement or a massive jerk. "
You just helped me so much... lol...
"Epileptic spasm (which include infantile spasms) consist of a sudden forward flexion of the upper body followed by stiffening. Often the arms are flung out as the knees are pulled up and the body bends forward. Less often, the head can be thrown back as the body and legs stiffen in a straight-out position, or movements can be more subtle and limited to the neck or other body parts. Each seizure lasts only a second or two but they usually occur in clusters. "
I also might be having these 'spasms', because they really are usually only one second or two, often in a string of 3 or 4 within a couple of minutes... I'm a big computer nerd and often what hgappens is I have what I thought was a 'jerk' but it looks like I smashed my computer mouse into the table or threw it and my body just feels rocked, like I'd gotten electrocuted for a brief second... they're very violent and full body... my breathing does get stopped... but they're only one or two seconds... I think I'm either having these tonic seizures or these 'spasms'.... I haven't heard much about epileptic 'spasms'... has anyone else?
Doing research as I edit the post, lol...
"Epileptic spasms, infantile spasms, juvenile spasms, West syndrome or West's syndrome[1] is an uncommon to rare epileptic disorder in infants, children and adults. It is named after the English physician, William James West (1793–184, who first described it in an article published in The Lancet in 1841.[2] The original case actually described his own son, James Edwin West (1840–1860).[3] Other names for it are "Generalized Flexion Epilepsy", "Infantile Epileptic Encephalopathy", "Infantile Myoclonic Encephalopathy", "jackknife convulsions", "Massive Myoclonia" and "Salaam spasms"."
'Massive Myoclonia' - I think I just hit the dead ringer... I labeled it 'Mega Jerks'... lol... it's also Ironic because it's named after a Guy with the last name of 'West' and my last name is 'East', lol. That fits the bill to a perfect tea... now if I was walking around when this happened as well, I'd still fall to the ground... I'm having a bunch of epileptic spasms I think... anyone know about 'em?
"The epileptic seizures which can be observed in infants with West syndrome fall into three categories, collectively known as infantile spasms. Typically, the following triad of attack types appears; while the three types usually appear simultaneously, they also can occur independently of each other:
Lightning attacks: Sudden, severe myoclonic convulsions of the entire body or several parts of the body in split seconds, and the legs in particular are bent (flexor muscle convulsions here are generally more severe than extensor ones)."
...okay... learning more... that's aperfect explanation of what's going on...
Now here's the tricky part... as far as I can discern these typically happen in babies... very little on them in Adults...
still editing and researching, lol....
As best I can tell, I'm having Lightning Attacks as in West's Syndrome but very typically thats restricted to Infants under 12 months old... and I didn't have it as a baby... though I was a premature birth by 2 months... but the prognosis in even that if it's continued to adulthood (even had I been undiagnosed), doesn't fit my situation... I don't have Down's Syndrome... don't think I'm Autistic... I consider myself a fairly intelligent feller so not much in overall cognitive decline... I can't figure myself out! I fit the bill easily as a 'tonic seizure' but those last 10 or 20 seconds.. mine last 1 or 2.... it's just a MASSIVE full body jerk... one I'd fall down from.. or not really fall but thrown... like I'm hit by an invisible force that tosses me backwards...that's what happens when im standing... like I'd just been hit with a 'Hyuken' in a Street Fighter.... it may still be just a 'myoclonic jerk' because I've read in some sources the jerks CAN affect the entire body... but good lord, I'm having the King Baddy of Myoclonic Jerks then... anyone got an opinion so I can check one of these 3 off the list? If it were 'spasms' it would be insanely rare and almost unheard of, as far as I can tell... it could be jerks, but the violence and full body act to it plus they seem to have a traditional 'trigger' makes me question if they're simple myoclonus... it fits the bill as a 'tonic seizure' but the duration doesn't match up... 1-3 seconds as opposed to 10-30.... opinions?
Found a video on youtube... https://www.youtube.com/watch?v=vjnzFZ0wrJU
If that's mislabeled as a tonic seizure, I dunno... but that's not what's happening to me... imagine a drummer in a rock band doing his solo and smacking the plates... that's kind of what it looks like when I'm in a chair... it'll look like I just went hog-out and tried to do some drumming.... i dunno... maybe it is myoclonic jerks and they're more violent 'cuz I'm a bigger guy and have more muscle mass... they just hurt more maybe now because of my shoulder being broken from the tonic clonic I had a month ago...
but then though it's from a prospective on the ground... this video labeled as a 'tonic seizure' POV video fits the bill when I've been thrown to the ground, plus it's weird 'cuz my name is Andy... surreal... I've had this happen several times... and like this guy, gimme a few seconds to shake my cobwebs, i'm not post-ictal... i pick myself up and keep on a chugging...
https://www.youtube.com/watch?v=tfzctJGzvO4
Okay... the more I look on youtube the more I'm convinced it's not a 'tonic seizure'... these look like a slow, 'stretching out' and stiffening of muscles... that's not what's happening to me... mine are more like myoclonic jerks because my body actually convulses... it's a spasm... as if I'd been shocked... yea, I'm scratching 'tonic seizure' off the list...
I'd say it's an infantile spasm if I wasn't an infant... so I'm back to my original idea, I guess... just some damn strong myoclonic jerks...
I looked into just 'clonic' seizures... videos I saw lasted too long, my 'mega jerks' are only a few seconds long... 1-3 seconds... sometimes a few in a row... usually when they happen in a series, that leads into a tonic clonic seizure.... I saw this and found it kind of itneresting.... " Sometimes tonic-clonic seizures start with jerking alone. These are called clonic-tonic-clonic seizures! These seizures tend to last for a few seconds to a minute."
Which would make sense but myoclonus can also be the prescursor to a TC...
"How can I tell if someone is having a myoclonic seizure?
These seizures can be easily overlooked because they are so brief and appear as extra normal movements. These seizures can be mistaken for tics, tremors or clumsiness." -
Mine can't be overlooked... it's not your normal slight jerk or movement, mine are violent as all hell and noisy... sweeping things around me, banging into things, jumping off the ground... mine 'jerks' don't go unnoticed...
I think I need some kind of marriage term for a very violent myoclonic jerk and a super brief clonic seizure... because I think that's what's happening...
I found a video of what it looks like when I'm having them....
https://www.youtube.com/watch?v=cob8d1Vz9zY
It kinda fits the bill of me having them and feeling like I'm 'going into' a TC... kinda like she is but it never quite gets there... it's just like... 'revving up'... that video is what I'm going through... that's what happens to me almost everyday... she labeled it a 'myoclonic jerk/seizure' and that's what I've called them...but good lord that doesn't look like a myoclonic jerk to me and it's what I'm having and it doesn't feel like your standard 'jerk'... yea, this final video is exactly hwat I go through... there's even even a debate in it's comments on wether it's myoclonic or tonic or clonic... but it's nice to finally SEE what I'm going through when they extreme whenn I've had little sleep or am under stress... yea, final video hit it on the head...
If someone can explain to me what's actually going on in this last video, I'll know what exactly to call what's happening to me...
(Started as a response to my jerks being very violent and effrecting my whole body...a tonic or clonic seizure was proposed as what's actually happening... this post is kind of me going and researching and then editing the post in real time and me working through what's going on, making notes.... maybe you guys can add your opinion?)
My seizure is kind of like a 'drop seizure'... not in that I just crumple to the ground but rather I would be knocked to the ground by my body jerking and doing a quick convulsion.... but I have had my 'mega myoclonic jerks' a couple times and fallen to the ground.... but usually I'm just laying about the house when they happen... you're right... I've thought those were ust 'bad bad jerks' for years... they're not... I'm having tonic seizures almost everyday then... this makes me requestion if I even have juvenile myoclonic epilepsy at all now...
"Tonic seizures involve increased muscle tone or stiffness. Depending on how quickly the seizure starts and how long it lasts, tonic seizures may be a gradual movement or a massive jerk. "
You just helped me so much... lol...
"Epileptic spasm (which include infantile spasms) consist of a sudden forward flexion of the upper body followed by stiffening. Often the arms are flung out as the knees are pulled up and the body bends forward. Less often, the head can be thrown back as the body and legs stiffen in a straight-out position, or movements can be more subtle and limited to the neck or other body parts. Each seizure lasts only a second or two but they usually occur in clusters. "
I also might be having these 'spasms', because they really are usually only one second or two, often in a string of 3 or 4 within a couple of minutes... I'm a big computer nerd and often what hgappens is I have what I thought was a 'jerk' but it looks like I smashed my computer mouse into the table or threw it and my body just feels rocked, like I'd gotten electrocuted for a brief second... they're very violent and full body... my breathing does get stopped... but they're only one or two seconds... I think I'm either having these tonic seizures or these 'spasms'.... I haven't heard much about epileptic 'spasms'... has anyone else?
Doing research as I edit the post, lol...
"Epileptic spasms, infantile spasms, juvenile spasms, West syndrome or West's syndrome[1] is an uncommon to rare epileptic disorder in infants, children and adults. It is named after the English physician, William James West (1793–184, who first described it in an article published in The Lancet in 1841.[2] The original case actually described his own son, James Edwin West (1840–1860).[3] Other names for it are "Generalized Flexion Epilepsy", "Infantile Epileptic Encephalopathy", "Infantile Myoclonic Encephalopathy", "jackknife convulsions", "Massive Myoclonia" and "Salaam spasms"."
'Massive Myoclonia' - I think I just hit the dead ringer... I labeled it 'Mega Jerks'... lol... it's also Ironic because it's named after a Guy with the last name of 'West' and my last name is 'East', lol. That fits the bill to a perfect tea... now if I was walking around when this happened as well, I'd still fall to the ground... I'm having a bunch of epileptic spasms I think... anyone know about 'em?
"The epileptic seizures which can be observed in infants with West syndrome fall into three categories, collectively known as infantile spasms. Typically, the following triad of attack types appears; while the three types usually appear simultaneously, they also can occur independently of each other:
Lightning attacks: Sudden, severe myoclonic convulsions of the entire body or several parts of the body in split seconds, and the legs in particular are bent (flexor muscle convulsions here are generally more severe than extensor ones)."
...okay... learning more... that's aperfect explanation of what's going on...
Now here's the tricky part... as far as I can discern these typically happen in babies... very little on them in Adults...
still editing and researching, lol....
As best I can tell, I'm having Lightning Attacks as in West's Syndrome but very typically thats restricted to Infants under 12 months old... and I didn't have it as a baby... though I was a premature birth by 2 months... but the prognosis in even that if it's continued to adulthood (even had I been undiagnosed), doesn't fit my situation... I don't have Down's Syndrome... don't think I'm Autistic... I consider myself a fairly intelligent feller so not much in overall cognitive decline... I can't figure myself out! I fit the bill easily as a 'tonic seizure' but those last 10 or 20 seconds.. mine last 1 or 2.... it's just a MASSIVE full body jerk... one I'd fall down from.. or not really fall but thrown... like I'm hit by an invisible force that tosses me backwards...that's what happens when im standing... like I'd just been hit with a 'Hyuken' in a Street Fighter.... it may still be just a 'myoclonic jerk' because I've read in some sources the jerks CAN affect the entire body... but good lord, I'm having the King Baddy of Myoclonic Jerks then... anyone got an opinion so I can check one of these 3 off the list? If it were 'spasms' it would be insanely rare and almost unheard of, as far as I can tell... it could be jerks, but the violence and full body act to it plus they seem to have a traditional 'trigger' makes me question if they're simple myoclonus... it fits the bill as a 'tonic seizure' but the duration doesn't match up... 1-3 seconds as opposed to 10-30.... opinions?
Found a video on youtube... https://www.youtube.com/watch?v=vjnzFZ0wrJU
If that's mislabeled as a tonic seizure, I dunno... but that's not what's happening to me... imagine a drummer in a rock band doing his solo and smacking the plates... that's kind of what it looks like when I'm in a chair... it'll look like I just went hog-out and tried to do some drumming.... i dunno... maybe it is myoclonic jerks and they're more violent 'cuz I'm a bigger guy and have more muscle mass... they just hurt more maybe now because of my shoulder being broken from the tonic clonic I had a month ago...
but then though it's from a prospective on the ground... this video labeled as a 'tonic seizure' POV video fits the bill when I've been thrown to the ground, plus it's weird 'cuz my name is Andy... surreal... I've had this happen several times... and like this guy, gimme a few seconds to shake my cobwebs, i'm not post-ictal... i pick myself up and keep on a chugging...
https://www.youtube.com/watch?v=tfzctJGzvO4
Okay... the more I look on youtube the more I'm convinced it's not a 'tonic seizure'... these look like a slow, 'stretching out' and stiffening of muscles... that's not what's happening to me... mine are more like myoclonic jerks because my body actually convulses... it's a spasm... as if I'd been shocked... yea, I'm scratching 'tonic seizure' off the list...
I'd say it's an infantile spasm if I wasn't an infant... so I'm back to my original idea, I guess... just some damn strong myoclonic jerks...
I looked into just 'clonic' seizures... videos I saw lasted too long, my 'mega jerks' are only a few seconds long... 1-3 seconds... sometimes a few in a row... usually when they happen in a series, that leads into a tonic clonic seizure.... I saw this and found it kind of itneresting.... " Sometimes tonic-clonic seizures start with jerking alone. These are called clonic-tonic-clonic seizures! These seizures tend to last for a few seconds to a minute."
Which would make sense but myoclonus can also be the prescursor to a TC...
"How can I tell if someone is having a myoclonic seizure?
These seizures can be easily overlooked because they are so brief and appear as extra normal movements. These seizures can be mistaken for tics, tremors or clumsiness." -
Mine can't be overlooked... it's not your normal slight jerk or movement, mine are violent as all hell and noisy... sweeping things around me, banging into things, jumping off the ground... mine 'jerks' don't go unnoticed...
I think I need some kind of marriage term for a very violent myoclonic jerk and a super brief clonic seizure... because I think that's what's happening...
I found a video of what it looks like when I'm having them....
https://www.youtube.com/watch?v=cob8d1Vz9zY
It kinda fits the bill of me having them and feeling like I'm 'going into' a TC... kinda like she is but it never quite gets there... it's just like... 'revving up'... that video is what I'm going through... that's what happens to me almost everyday... she labeled it a 'myoclonic jerk/seizure' and that's what I've called them...but good lord that doesn't look like a myoclonic jerk to me and it's what I'm having and it doesn't feel like your standard 'jerk'... yea, this final video is exactly hwat I go through... there's even even a debate in it's comments on wether it's myoclonic or tonic or clonic... but it's nice to finally SEE what I'm going through when they extreme whenn I've had little sleep or am under stress... yea, final video hit it on the head...
If someone can explain to me what's actually going on in this last video, I'll know what exactly to call what's happening to me...
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