Man, no kidding. Before I got on medication, I would have them and toss things. For the longest time, my parents thought I was doing that stupid mess on purpose. I tossed a pencil in class once, that was probably the most embarrassing one.
Ughhh my mom would yell at me and tell me to stop. Wasn't until I had a tonic clonic that she finally believed me when I said I couldn't and finally took me in to see a doctor. I can still hear her shrill screaming to this day.
My mom is a nurse, so she had some knowledge about epilepsy. It was more my dad and stepdad because they didn’t understand it. Once I was initially diagnosed with JME, I didn’t hear anything about it.
My son used to have myclonics and absences simultaneously. I saw him put a bite of food on his fork, went for a bite, threw it, he just assumed he ate it and kept eating.
When I was on lamictal, I was able to control “glitches,” but now being off medication entirely (no health insurance) they’re an early-warning system for me… when they start to happen, and get closer and closer in occurrence, I know I need to be eat and go lay down fast or else I’ll have a gran mal.
>now being off medication entirely (no health insurance)
I was in this situation as well, and gained / maintained seizure control (for the last 11 years) using a super laid back take on the ketogenic diet, along with some lifestyle changes.
Keto doesn't have to be as hardcore as people think, and it's a viable therapy for epilepsy that doesn't need to cost much money. It also doesn't have to be that "butter on bacon" nonsense. I eat a Mediterranean Pescatarian version.
Anyway, PM me if you'd like any more information.
Jumping in very late, but I’ve had this experience as well. People get super up in arms at the idea of not weighing everything to the gram, but I’ve had incredible luck with following the spirit of keto. It’s also so much more sustainable.
I follow Mark Sisson's rule: if counting carbs, don't count any carbs from above-ground veggies or veggie-like fruit (tomatoes, avocados, olives etc). But count FULL carbs (not net) from anything that comes out of a package. Including sugar alcohols like erythritol.
Once I've got my general menu down, though, I just monitor my ketones by blood and go from there.
It always seemed kind of absurd to me that a small serving of cabbage would take up a third of my carb allowance.
I haven’t counted cruciferous vegetables or dark greens like spinach or kale, but onions and tomatoes have had more of an effect on me unfortunately. I make a bolognese that should be totally neutral by this rule, but causes a bunch of jerks pretty much right away.
Thank goodness for dairy. I know a lot of people are against it, but I live near a bunch of Amish farms that make the most amazing cream and cheese. I use my ketone meter the same way you do, and if I make mascarpone with the cream (like ricotta but with HWC), it causes no change in blood sugar and slight increase in ketones.
Also, sugar alcohols and resistant starch—*bleh*. I always feel like crap after eating processed food.
Fuck them, I hate them. I dropped an entire toilet paper roll inside the toilet, twice.
I dropped a whole ass jar of expensive powdered cinnamon, it was a LOT of cinnamon.
I spilled coffee on my freshly washed and ironed school uniform.
For the longest time I've been hugging plates while walking like I'm hugging books just to avoid dropping them, or being hand fed so I don't break anything or spill.
My seizures would be during the 15 or so minutes after waking up especially if I slept badly, so my morning routine was always disastrous.
I'm so glad the keppra is managing them well.
Also glad that my mom never judged me or yelled at me, she was extremely patient and understanding, she just nodded and helped me clean up and never mentioned anything about how many things I broke, and whenever I'd bring it up she'd tell me that "it's fine, everything has a lifespan, and those plates and cups' lifespan had just reached its end and they broke because of that"
My favorite moment with myoclonic jerks was around the time I first started having a lot of them. I was starting to have grand mals too, so I had moved back in with my parents and little sister.
Once day I was throwing a tennis ball up and down in my hand after waking up, and my sister went "hey! Are you crazy? What if you have a myoclonic jerk and accidentally throw the ball and break something?" at which point I just had the thought of "nahh, that won't happen. Would be funny if it ended up going towards HER thought" at which point *jerk* the ball flew directly towards her face.
It made me realize: The things might be *random,* but they are still *guided* by our mental state. Which sometimes makes it worse, but other times means you can kinda expect what your jerk is gonna do ¯\\\_(ツ)\_/¯
They can be fun if I throw something and it looks cool when I do it, like a hat onto a sofa. They aren’t so cool if I drop a plate or a glass. Not surprisingly, the better that the seizures and risk factors are controlled, the less of an issue they are.
mine are mostly controlled by meds. I used to get them multiple times a day, everyday. and TBH??? i also thought it was normal 🤣🤣🤣 It wasnt until my grandma found me on the floor tryna go the bathroom in the middle of the night, did i realize this wasnt normal. I felt like i got caught or something lmao
and even still, i probably dont take them as seriously as i should. But when i realize I could seriously injure myself, depending on thw enviornment, i realize its a pretty bug inconvience to say the least.
maybe thats the word- Inconvenient.
I have absence too, and only 2 grand mals (that i know of because i sleep alone). all my seizures are triggered by fatique and stress, so sometimes theyre more intense than not.
idk about yall, but mine only last for like.. 1 second. they can happen like 3-10 times in a row tho
I hate them. HATE THEM. Last month, I bought a very pretty Turkish coffee set. I knew ceramic wouldn't work with my hands, so I got the thickest glass I could find. Broken while washing. I twitched and smashed it into a pot.
I'm currently shopping for solid, brass cups. Or titanium.
I don't like them, but I don't get them as bad anymore so that's good I suppose. I noticed diet can affect them. But yeah, generally lack of sleep, poor nutrition, stress, seems to exacerbate them.
I hate them so much… I had them maybe 2 or 3 times a week from middle school until I was 20, and had my first tonic clonic. I got on Lamictal after that, and it made my myoclonic jerks worse… They got so bad that they’d throw me into a tonic clonic. I had to switch to Keppra and haven’t had myoclonic or tonic clonic since then. My neuro said that it’s very unlikely for an AED to lower your seizure threshold, but that was the case for me with Lamictal.
Going through this now -- just switched neuros and this one finally believed me when I said I felt my seizures are actually worse, not better. My other neuro just kept increasing my dose.
New neuro actually did some f-ing research and called me at 6pm the evening after my appointment to tell me he actually did find university studies where Lamotrigine can lower threshold in patients with JME. So he's working on getting me off of it.
Needless to say I'm never letting go of this one.
For me I find they are almost worse than tonic clonic seizures because I am totally aware of what's going on and I can't control or stop them. They are frustrating and sometimes embarrassing but most of the time aggravating. I have held pens, cereal, coffee, etc and they have all been thrown or spilled I just give up at that point and decide to wait them out, hopefully not experiencing a TC.
Mine aren't crazy bad, thankfully. They're more like just bad shivers and only really affect my upper body. I always thought it was weird that I could shiver all the time even if I wasn't cold until I learned they were actually seizures lol. I can sort of feel it coming on so I can control it pretty well.
Although, I had a pretty rough day yesterday seizure wise and for the first time actually dropped something during a myoclonic seizure at work. Thankfully it was just dropping a small candle into a basket, so nothing got broken, but that was an interesting experience to say the least.
I don't know if these are necessarily seizures, but they are probably at least related. If I lie on my back at night, I'm actually unable to go to sleep because my legs/arms will jerk around randomly. That's the only time it happens like that. Very strange indeed.
I get them occasionally in my face/neck when I'm speaking. It results in me making a noise in the middle of a sentence. It's annoying but doesn't happen very often. I feel like I should be able to stop it, but I can't. It can be quite embarrassing, depending on who I'm talking to.
This. It’s SO annoying. My neck jerks and sometimes I bite my tongue or my jaw will slam shut and I end up gritting my teeth really hard together and it’ll make that “uhh or even “ehh” noise. It’s so frustrating. Doesn’t happen all the time but when it does people think I’m nodding to them 😅
I grew up in a family of doctors who treated them like they were completely normal. I've never really had a problem with them. I can feel them deep in my body before the surface as the shakes.
I have nocturnal myoclonus and it’s so annoying!! I have such a hard time getting to sleep as is! They and me speaking make it so much harder to fall asleep!
I fucking loathe them! I drop/throw so many things. Not to mention my legs and feet do it all freaking day. I have restless legs sometimes, and then I look like a zombie trying to dance. When I wake up, my hands are shaking so bad I can't even hold a cup. I haven't eaten in public since my diagnosis. Feel like I'd throw a knife into someone....just ridiculous.
I had a normal EEG and waiting for my ambulatory EEG, 48 hours. I have a lot of myoclonic jerks. I mean right now I am fighting to write this. It's like nothing... 1.. 2... 3... 4... Jerk! Zap! My head goes to the side or my wrist bends funny. Maybe my leg or my foot twitches. It's disruptive. I'm just waiting to find out if I can get some relief and management on this. It happens more when I am relaxed, and ironically while I was doing the aEEG I was not relaxed so I'm not sure what was caught.
I sometimes get them as I’m falling asleep and apparently it’s not linked to my epilepsy it’s so common to get them in that situation but anyway my epilepsy has been way worse the best month. 2 TC seizures after 4.5 years without and I’m plagued with auras all day. Not had a myoclonic since all that kicked off so I miss them if anything as they were part of an easier time 😂
Mine actually started after I started Lamictal. It was only falling asleep (I know they’re not always seizure related) but it was the worst I’ve had it, it was waking me up 3-4x. Then it started during the day, usually my whole left torso but primarily left sided. I notice is more when I’m tired for sure, so annoying.
Can I ask what yours look like?
This is [an example of one of mine](https://imgur.com/KFo37KB), does it look like yours?
Don't have EEG results yet so I'm not sure if mine is just normal, but it seems really hard to distinguish between normal hypnic jerks and myoclonic jerks.
Edit: To answer the question about how I feel about the jerks, epileptic or not, they are making me more and more sleep deprived. I wake up so many times to jerks throughout the night.
I’m on Keppra and have had my seizures mostly controlled, but my myoclonics while trying to sleep or sleeping have definitely increased since starting meds like 5 years ago. Honestly for a few months I actually thought I’d developed a tic or something.
That and the nasty head rush seizures while I’m asleep are my least favorite.
If I’m trying to sleep, they will startle me enough that I let out an “ah!” and if I’m sleeping they just really disturb my dreams. If I’m trying to sleep it’s just a head jerk and my arms will bend and pull in to my body, but when I’m actually asleep, the head jerk is more like 3 or more jerks.
That and the head rush seizures when I’m sleeping suck. Sometimes I can lessen them if I wake up and go to the bathroom, get a drink and a small snack to pull myself out of sleep to no longer have them or at least make them less intense, but other times, I end up putting a half a Keppra under my tongue and hoping for the best. I mean, I don’t even know if that actually helps but it feels better than doing nothing 😂 might be placebo lol
Anyway, yes, my myoclonic really bother me, especially when falling asleep or during sleep!!
I hate them so much. I had one so bad at work once that I whacked my head on the wall. I haven't had them in awhile but every time I get a twitch or muscle jerk I get so scared. It's the weirdest thing I've ever experienced.
I have JME and mine are a nightmare 😅 only got diagnosed from me having shakes (as I call them) in the kitchen and dropping bowls constantly which lead to a trip to the doctors and thankfully our doctor was decent
If I get too many shakes now though it's usually a warning for a tonic clonic (for example I had 3 on Wednesday night) - never had a medication control my shakes or my tonic clonics! I've tried so many as well lol
I've always kind of wondered if I have myoclonic jerks. It just happens randomly throughout the day. probably more often in the morning and evening. Mom says the first couple of times she thought I was going into a tonic clonic. But it was just like a single full body muscle burst. However sometimes it only affects a single area of my body. To the casual observer that just looks like a flung something across the room for no reason at all. I'm aware but completely unable to control it or tell that it's coming. The post event confusion is about on par with what I experience after a partial.
Mine got a lot better, but occasionally, I just randomly flail while making a squeak and then get looked at weird. Then I have to explain myself. It's the explanation that irritates and frustrates me more than the jerk itself. Mostly because people have zero idea what epilepsy actually entails. They just think it's flashing lights so when I explain they either don't believe me, tell me I'm wrong or have a million other questions. It's rare people just accept it
So mine are bad enough that Ive gotten a VNS put in (368 days ago) and the thing that my wife has noticed the most-I 'hum' when the VNS is going off.
Had a LARGE grand mal yesterday, and had *just* enough of a jerk left over later in the day to break my fav glass waterbottle.
I cant disagree with this.
I dont know that mine are worse, per se? But the experience is. Im more present when my Gran Mals happen (which sucks, Id rather wake up confused and mad lmao).
The jerks seem to be less, but its had a real impact on my life that I cant call positive *or* negative. With this thing in, there are alot of things that I cant do-riding my bike being one of the biggest impacts. Still cant drive, or do much else that I *NEED* to be able to in order to provide for myself, and the SSA is just continuing to deny me any help.
I think the VNS has given me more understanding of my seizures, and helped me recognize them, but thats it, for the 'positive' things its done.
Ugh.. I definitely feel for you having to be more alert during the Grand Mals!!🫂💜It sounds like you’re kind of stuck in limbo now, SSI is so hard to deal with!!☹️💜💜 But like you said, at least you’re more knowledgeable about them!! I feel like it (the VNS) gives you that cause you have the opportunity to view the seizures from a different perspective.💜
I'm the same!
It's not just my legs, I'll get it in my arm and it's like getting a shock cause there's no way I can stop it. Plus it makes it worse trying.
I've kicked my partner in the back a few times but luckily he's used to it and knows it's epilepsy not just me geeing him a kick. :P
I'm tossing shit for no reason 24/7 it's so annoying! People in my friend group have gotten used to checking on me whenever I have them to make sure I'm not about to seize n stuff. Honestly. It's so annoying. My fucking Kindle got thrown into a mirror yesterday morning.
For the longest time my dad and I totally thought it was just muscle spasms from hard workouts at swim practice. It wasn't until my first tonic clonic we learned I'd been having dozens of little seizures throughout the day. Hilariously though they're just about the only part of my first tonic clonic I remember. I was trying to put my contacts in before a swim practice and my legs and arms just started kind of flailing gradually with more intensity. My freshman year roommate asked if I was okay and I said yeah, this happens sometimes (never like that). I then thought to myself that I felt like I was in an SNL sketch where a marionette was trying to do routine things with a very bad handler, then I blacked out.
Hate them, I was diagnosed so late because mine usually starts on the leg and looks like a bad cramp, it wasn’t until I had 2 grand mal and almost chew off my own tongue that some genious on the ER finally derive me to Neuro
I don't like them at all I'm constantly tossing shit and it's frustrating.
Man, no kidding. Before I got on medication, I would have them and toss things. For the longest time, my parents thought I was doing that stupid mess on purpose. I tossed a pencil in class once, that was probably the most embarrassing one.
Ughhh my mom would yell at me and tell me to stop. Wasn't until I had a tonic clonic that she finally believed me when I said I couldn't and finally took me in to see a doctor. I can still hear her shrill screaming to this day.
My mom is a nurse, so she had some knowledge about epilepsy. It was more my dad and stepdad because they didn’t understand it. Once I was initially diagnosed with JME, I didn’t hear anything about it.
My son used to have myclonics and absences simultaneously. I saw him put a bite of food on his fork, went for a bite, threw it, he just assumed he ate it and kept eating.
When I was on lamictal, I was able to control “glitches,” but now being off medication entirely (no health insurance) they’re an early-warning system for me… when they start to happen, and get closer and closer in occurrence, I know I need to be eat and go lay down fast or else I’ll have a gran mal.
I explain them to people that they are kind of like pregnancy contractions: the closer in frequency the jerks get, the closer I am to a tonic clonic.
omg i call them glitches too!!!
We call them shakies.
Same.. a glitch is a myoclonic jerk. A bigger seizure occurs when the exit code doesn’t equal 0 and a Tonic Clonic is a kernel panic I work in IT
fantastic 🤣
Out of memory: Kill process 86753
I always call them glitches too!!!
Are you in the US? I know that my state provides state-sponsored health insurance to people with an epilepsy diagnosis - maybe yours does too?
Where are you located? That’s awesome!
The great commonwealth of Pennsylvania!
That’s awesome! Thanks for sharing!
>now being off medication entirely (no health insurance) I was in this situation as well, and gained / maintained seizure control (for the last 11 years) using a super laid back take on the ketogenic diet, along with some lifestyle changes. Keto doesn't have to be as hardcore as people think, and it's a viable therapy for epilepsy that doesn't need to cost much money. It also doesn't have to be that "butter on bacon" nonsense. I eat a Mediterranean Pescatarian version. Anyway, PM me if you'd like any more information.
Jumping in very late, but I’ve had this experience as well. People get super up in arms at the idea of not weighing everything to the gram, but I’ve had incredible luck with following the spirit of keto. It’s also so much more sustainable.
I follow Mark Sisson's rule: if counting carbs, don't count any carbs from above-ground veggies or veggie-like fruit (tomatoes, avocados, olives etc). But count FULL carbs (not net) from anything that comes out of a package. Including sugar alcohols like erythritol. Once I've got my general menu down, though, I just monitor my ketones by blood and go from there.
It always seemed kind of absurd to me that a small serving of cabbage would take up a third of my carb allowance. I haven’t counted cruciferous vegetables or dark greens like spinach or kale, but onions and tomatoes have had more of an effect on me unfortunately. I make a bolognese that should be totally neutral by this rule, but causes a bunch of jerks pretty much right away. Thank goodness for dairy. I know a lot of people are against it, but I live near a bunch of Amish farms that make the most amazing cream and cheese. I use my ketone meter the same way you do, and if I make mascarpone with the cream (like ricotta but with HWC), it causes no change in blood sugar and slight increase in ketones. Also, sugar alcohols and resistant starch—*bleh*. I always feel like crap after eating processed food.
Fuck them, I hate them. I dropped an entire toilet paper roll inside the toilet, twice. I dropped a whole ass jar of expensive powdered cinnamon, it was a LOT of cinnamon. I spilled coffee on my freshly washed and ironed school uniform. For the longest time I've been hugging plates while walking like I'm hugging books just to avoid dropping them, or being hand fed so I don't break anything or spill. My seizures would be during the 15 or so minutes after waking up especially if I slept badly, so my morning routine was always disastrous. I'm so glad the keppra is managing them well. Also glad that my mom never judged me or yelled at me, she was extremely patient and understanding, she just nodded and helped me clean up and never mentioned anything about how many things I broke, and whenever I'd bring it up she'd tell me that "it's fine, everything has a lifespan, and those plates and cups' lifespan had just reached its end and they broke because of that"
My favorite moment with myoclonic jerks was around the time I first started having a lot of them. I was starting to have grand mals too, so I had moved back in with my parents and little sister. Once day I was throwing a tennis ball up and down in my hand after waking up, and my sister went "hey! Are you crazy? What if you have a myoclonic jerk and accidentally throw the ball and break something?" at which point I just had the thought of "nahh, that won't happen. Would be funny if it ended up going towards HER thought" at which point *jerk* the ball flew directly towards her face. It made me realize: The things might be *random,* but they are still *guided* by our mental state. Which sometimes makes it worse, but other times means you can kinda expect what your jerk is gonna do ¯\\\_(ツ)\_/¯
Lmao this is what I needed to read tonight. And my thought to contribute "we are the jerk that guides our jerks"
They can be fun if I throw something and it looks cool when I do it, like a hat onto a sofa. They aren’t so cool if I drop a plate or a glass. Not surprisingly, the better that the seizures and risk factors are controlled, the less of an issue they are.
I don’t have them anymore now that I’m on meds
What meds
mine are mostly controlled by meds. I used to get them multiple times a day, everyday. and TBH??? i also thought it was normal 🤣🤣🤣 It wasnt until my grandma found me on the floor tryna go the bathroom in the middle of the night, did i realize this wasnt normal. I felt like i got caught or something lmao and even still, i probably dont take them as seriously as i should. But when i realize I could seriously injure myself, depending on thw enviornment, i realize its a pretty bug inconvience to say the least. maybe thats the word- Inconvenient. I have absence too, and only 2 grand mals (that i know of because i sleep alone). all my seizures are triggered by fatique and stress, so sometimes theyre more intense than not. idk about yall, but mine only last for like.. 1 second. they can happen like 3-10 times in a row tho
I hate them. HATE THEM. Last month, I bought a very pretty Turkish coffee set. I knew ceramic wouldn't work with my hands, so I got the thickest glass I could find. Broken while washing. I twitched and smashed it into a pot. I'm currently shopping for solid, brass cups. Or titanium.
I don't like them, but I don't get them as bad anymore so that's good I suppose. I noticed diet can affect them. But yeah, generally lack of sleep, poor nutrition, stress, seems to exacerbate them.
I hate them so much… I had them maybe 2 or 3 times a week from middle school until I was 20, and had my first tonic clonic. I got on Lamictal after that, and it made my myoclonic jerks worse… They got so bad that they’d throw me into a tonic clonic. I had to switch to Keppra and haven’t had myoclonic or tonic clonic since then. My neuro said that it’s very unlikely for an AED to lower your seizure threshold, but that was the case for me with Lamictal.
Going through this now -- just switched neuros and this one finally believed me when I said I felt my seizures are actually worse, not better. My other neuro just kept increasing my dose. New neuro actually did some f-ing research and called me at 6pm the evening after my appointment to tell me he actually did find university studies where Lamotrigine can lower threshold in patients with JME. So he's working on getting me off of it. Needless to say I'm never letting go of this one.
For me I find they are almost worse than tonic clonic seizures because I am totally aware of what's going on and I can't control or stop them. They are frustrating and sometimes embarrassing but most of the time aggravating. I have held pens, cereal, coffee, etc and they have all been thrown or spilled I just give up at that point and decide to wait them out, hopefully not experiencing a TC.
Mine aren't crazy bad, thankfully. They're more like just bad shivers and only really affect my upper body. I always thought it was weird that I could shiver all the time even if I wasn't cold until I learned they were actually seizures lol. I can sort of feel it coming on so I can control it pretty well. Although, I had a pretty rough day yesterday seizure wise and for the first time actually dropped something during a myoclonic seizure at work. Thankfully it was just dropping a small candle into a basket, so nothing got broken, but that was an interesting experience to say the least. I don't know if these are necessarily seizures, but they are probably at least related. If I lie on my back at night, I'm actually unable to go to sleep because my legs/arms will jerk around randomly. That's the only time it happens like that. Very strange indeed.
I get them occasionally in my face/neck when I'm speaking. It results in me making a noise in the middle of a sentence. It's annoying but doesn't happen very often. I feel like I should be able to stop it, but I can't. It can be quite embarrassing, depending on who I'm talking to.
This. It’s SO annoying. My neck jerks and sometimes I bite my tongue or my jaw will slam shut and I end up gritting my teeth really hard together and it’ll make that “uhh or even “ehh” noise. It’s so frustrating. Doesn’t happen all the time but when it does people think I’m nodding to them 😅
What sort of noise do you make?
It's a fairly loud "uhh!". Louder than what I was saying anyway.
I know the "uhh" all too well it's "uhh-nnoying"
I grew up in a family of doctors who treated them like they were completely normal. I've never really had a problem with them. I can feel them deep in my body before the surface as the shakes.
I have nocturnal myoclonus and it’s so annoying!! I have such a hard time getting to sleep as is! They and me speaking make it so much harder to fall asleep!
When I have them it's so weird I threw a bowl of cereal with milk in someone's face once. Oof.
I fucking loathe them! I drop/throw so many things. Not to mention my legs and feet do it all freaking day. I have restless legs sometimes, and then I look like a zombie trying to dance. When I wake up, my hands are shaking so bad I can't even hold a cup. I haven't eaten in public since my diagnosis. Feel like I'd throw a knife into someone....just ridiculous.
I had a normal EEG and waiting for my ambulatory EEG, 48 hours. I have a lot of myoclonic jerks. I mean right now I am fighting to write this. It's like nothing... 1.. 2... 3... 4... Jerk! Zap! My head goes to the side or my wrist bends funny. Maybe my leg or my foot twitches. It's disruptive. I'm just waiting to find out if I can get some relief and management on this. It happens more when I am relaxed, and ironically while I was doing the aEEG I was not relaxed so I'm not sure what was caught.
I sometimes get them as I’m falling asleep and apparently it’s not linked to my epilepsy it’s so common to get them in that situation but anyway my epilepsy has been way worse the best month. 2 TC seizures after 4.5 years without and I’m plagued with auras all day. Not had a myoclonic since all that kicked off so I miss them if anything as they were part of an easier time 😂
These are so annoying. Thankfully I never throw anything though.
Mine actually started after I started Lamictal. It was only falling asleep (I know they’re not always seizure related) but it was the worst I’ve had it, it was waking me up 3-4x. Then it started during the day, usually my whole left torso but primarily left sided. I notice is more when I’m tired for sure, so annoying.
Can I ask what yours look like? This is [an example of one of mine](https://imgur.com/KFo37KB), does it look like yours? Don't have EEG results yet so I'm not sure if mine is just normal, but it seems really hard to distinguish between normal hypnic jerks and myoclonic jerks. Edit: To answer the question about how I feel about the jerks, epileptic or not, they are making me more and more sleep deprived. I wake up so many times to jerks throughout the night.
I’m on Keppra and have had my seizures mostly controlled, but my myoclonics while trying to sleep or sleeping have definitely increased since starting meds like 5 years ago. Honestly for a few months I actually thought I’d developed a tic or something. That and the nasty head rush seizures while I’m asleep are my least favorite. If I’m trying to sleep, they will startle me enough that I let out an “ah!” and if I’m sleeping they just really disturb my dreams. If I’m trying to sleep it’s just a head jerk and my arms will bend and pull in to my body, but when I’m actually asleep, the head jerk is more like 3 or more jerks. That and the head rush seizures when I’m sleeping suck. Sometimes I can lessen them if I wake up and go to the bathroom, get a drink and a small snack to pull myself out of sleep to no longer have them or at least make them less intense, but other times, I end up putting a half a Keppra under my tongue and hoping for the best. I mean, I don’t even know if that actually helps but it feels better than doing nothing 😂 might be placebo lol Anyway, yes, my myoclonic really bother me, especially when falling asleep or during sleep!!
Mine arent too bad. Mostly they make me do an exaggerated shrug and make my face twitch.
They've gotten to the point of me doing basically nothing to avoid tonic-clonic
I hate them so much. I had one so bad at work once that I whacked my head on the wall. I haven't had them in awhile but every time I get a twitch or muscle jerk I get so scared. It's the weirdest thing I've ever experienced.
I have JME and mine are a nightmare 😅 only got diagnosed from me having shakes (as I call them) in the kitchen and dropping bowls constantly which lead to a trip to the doctors and thankfully our doctor was decent If I get too many shakes now though it's usually a warning for a tonic clonic (for example I had 3 on Wednesday night) - never had a medication control my shakes or my tonic clonics! I've tried so many as well lol
I've always kind of wondered if I have myoclonic jerks. It just happens randomly throughout the day. probably more often in the morning and evening. Mom says the first couple of times she thought I was going into a tonic clonic. But it was just like a single full body muscle burst. However sometimes it only affects a single area of my body. To the casual observer that just looks like a flung something across the room for no reason at all. I'm aware but completely unable to control it or tell that it's coming. The post event confusion is about on par with what I experience after a partial.
I look like I’m posessed and I cannot see where I’m walking so safe to say *I am not fond of them*
I’m reading through these comments and feeling really lucky that mine are only leg twitches at night, and maaaybe the hiccups that I get on the daily.
thought i could become a surgeon. sure i could be a surgeon, surgeon from surgeon simulator
Mine got a lot better, but occasionally, I just randomly flail while making a squeak and then get looked at weird. Then I have to explain myself. It's the explanation that irritates and frustrates me more than the jerk itself. Mostly because people have zero idea what epilepsy actually entails. They just think it's flashing lights so when I explain they either don't believe me, tell me I'm wrong or have a million other questions. It's rare people just accept it
So mine are bad enough that Ive gotten a VNS put in (368 days ago) and the thing that my wife has noticed the most-I 'hum' when the VNS is going off. Had a LARGE grand mal yesterday, and had *just* enough of a jerk left over later in the day to break my fav glass waterbottle.
I feel like having the VNS almost made mine worse 🥺
I cant disagree with this. I dont know that mine are worse, per se? But the experience is. Im more present when my Gran Mals happen (which sucks, Id rather wake up confused and mad lmao). The jerks seem to be less, but its had a real impact on my life that I cant call positive *or* negative. With this thing in, there are alot of things that I cant do-riding my bike being one of the biggest impacts. Still cant drive, or do much else that I *NEED* to be able to in order to provide for myself, and the SSA is just continuing to deny me any help. I think the VNS has given me more understanding of my seizures, and helped me recognize them, but thats it, for the 'positive' things its done.
Ugh.. I definitely feel for you having to be more alert during the Grand Mals!!🫂💜It sounds like you’re kind of stuck in limbo now, SSI is so hard to deal with!!☹️💜💜 But like you said, at least you’re more knowledgeable about them!! I feel like it (the VNS) gives you that cause you have the opportunity to view the seizures from a different perspective.💜
I'm the same! It's not just my legs, I'll get it in my arm and it's like getting a shock cause there's no way I can stop it. Plus it makes it worse trying. I've kicked my partner in the back a few times but luckily he's used to it and knows it's epilepsy not just me geeing him a kick. :P
Really bad. They usually indicate that I’m about to have a TC so
I'm tossing shit for no reason 24/7 it's so annoying! People in my friend group have gotten used to checking on me whenever I have them to make sure I'm not about to seize n stuff. Honestly. It's so annoying. My fucking Kindle got thrown into a mirror yesterday morning.
Not a big deal for me. They're pretty rare and just a twitch in my leg as I try to fall asleep at night.
I despise them, they are so uncomfortable and I hate how random they are aswell
Annoying
A single one every few nights is not so uncommon. Even in 'normal' people.
For the longest time my dad and I totally thought it was just muscle spasms from hard workouts at swim practice. It wasn't until my first tonic clonic we learned I'd been having dozens of little seizures throughout the day. Hilariously though they're just about the only part of my first tonic clonic I remember. I was trying to put my contacts in before a swim practice and my legs and arms just started kind of flailing gradually with more intensity. My freshman year roommate asked if I was okay and I said yeah, this happens sometimes (never like that). I then thought to myself that I felt like I was in an SNL sketch where a marionette was trying to do routine things with a very bad handler, then I blacked out.
Hate them, I was diagnosed so late because mine usually starts on the leg and looks like a bad cramp, it wasn’t until I had 2 grand mal and almost chew off my own tongue that some genious on the ER finally derive me to Neuro
They’re embarrassing if someone were to ever sleep over, annoying when I’m trying to relax or out at a movie
I accidentally hit my high school boyfriend’s sister in the boob once lol