hey this is my first post so ill give a brief intro before asking my question. Im 23 from canada was diagnosed with juvenile myoclonic epilepsy in grade 12. from what i understand the term "juvenile" is used to describe forms of epilepsy that may possibly be outgrown; perhaps my diagnosis should be changed as its been five years without improvement. If i had to put a number on it i would say i have had around fifty seizures. I have been on numerous medications currently taking 1g of epival daily. My fits have only ever come on in the mornings within 45 minutes or so of waking; almost always when I have had a lack of sleep. also prior to having a fit i will have momentary loss of control in my hands and trembling on and off from my shoulders down. these symptoms "warning signs" last sometimes for 20 minutes or longer before a fit ensues sometimes less; occasionally ill lay back down when i feel these " warning signs" coming on and they will pass and ill be lucky enough to get on with my day. Lately I`ve found that the momentary loss of control in my hands has been occurring during other times of the day typically when im engaged in an activity requiring a lot of manual dexterity lately when im playing guitar for example. When i approach my physicians with these symptoms they give me no explanation and seem somewhat dumbfounded as if they've never heard of such a thing. Im curious to see if anyone else has these symptoms or "warning signs."
Uncommon Symptoms?
- Thread starter Josh
- Start date
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
epileric
Veteran
- Messages
- 4,499
- Reaction score
- 1
- Points
- 163
Welcome Josh:
We're getting a few Canadians on this site. I've lived all over BC but am in Ottawa now.
Your symptoms don't sound too uncommon. You say the warning signs last 20 minutes or longer. Is that your estimate or has someone else ever timed them for you? I ask because when my seizures start my sense of time is GONE. When I was a young kid my neurologist asked me how long my seizures were so I told him about an hour each. When I saw the look of surprise on his face I said "well maybe 2 hours" at which point my mom said 30-45 seconds. I've found that as I get older my sense of time isn't as distorted but can never accurately judge how long a seizure was.
Also, what you described of losing control of your hands even when you feel you don't have a seizure could itself be seizures.
Meanwhile, make yourself at home here, if you want to check out anything specific use the "search" option at the top of the page (3rd from the right). You also might be interested in Spebers Auditorium if you play guitar. I own guitars but I'm reluctant to say I play.
We're getting a few Canadians on this site. I've lived all over BC but am in Ottawa now.
Your symptoms don't sound too uncommon. You say the warning signs last 20 minutes or longer. Is that your estimate or has someone else ever timed them for you? I ask because when my seizures start my sense of time is GONE. When I was a young kid my neurologist asked me how long my seizures were so I told him about an hour each. When I saw the look of surprise on his face I said "well maybe 2 hours" at which point my mom said 30-45 seconds. I've found that as I get older my sense of time isn't as distorted but can never accurately judge how long a seizure was.
Also, what you described of losing control of your hands even when you feel you don't have a seizure could itself be seizures.
Meanwhile, make yourself at home here, if you want to check out anything specific use the "search" option at the top of the page (3rd from the right). You also might be interested in Spebers Auditorium if you play guitar. I own guitars but I'm reluctant to say I play.
I think my estimate is accurate since I am lucid during the period when the warning signs occur. i could`nt estimate the actual time of a fit however since i blackout during this period; i have never had someone time it either usually people are too busy freaking out wondering what to do lol. thanks for the quick reply i live in vernon BC btw 
epileric
Veteran
- Messages
- 4,499
- Reaction score
- 1
- Points
- 163
I liked the town of Vernon. I was only there for a year & a half though and wouldn't have minded staying longer. Was it Polson Park that had the waterfalls in the middle of town? I used to go there to study or read.
Do try to get someone to time and watch a seizure. I felt very lucid and apparently wasn't and it may be the same with you. I had one of my smaller seizures where nobody can tell the difference while I was a teachers aid. Right after the teacher nodded to me as if to ask if I wanted to start. It wasn't until later did I realize that she knew exactly when my seizure was over. When I asked how she knew she said that my head was pulled to the side in a jerking movement. I knew I did that as a kid but never knew I still did. When I told my mom she said that I never stopped doing that during my seizures. People are very reluctant to tell you (or at least me) what happened & those that aren't don't understand that I really am not there.
I also just found out from a neuro-psychologist that I may have seizures that I'm not even aware of. That kind of blew my mind. I still don't know if I do or not but it might explain why I have no recollection of somethings.
Do try to get someone to time and watch a seizure. I felt very lucid and apparently wasn't and it may be the same with you. I had one of my smaller seizures where nobody can tell the difference while I was a teachers aid. Right after the teacher nodded to me as if to ask if I wanted to start. It wasn't until later did I realize that she knew exactly when my seizure was over. When I asked how she knew she said that my head was pulled to the side in a jerking movement. I knew I did that as a kid but never knew I still did. When I told my mom she said that I never stopped doing that during my seizures. People are very reluctant to tell you (or at least me) what happened & those that aren't don't understand that I really am not there.
I also just found out from a neuro-psychologist that I may have seizures that I'm not even aware of. That kind of blew my mind. I still don't know if I do or not but it might explain why I have no recollection of somethings.
- Messages
- 17,355
- Reaction score
- 756
- Points
- 263
Hi Josh, welcome to CWE!
Shaking and trembling of hands arms is a fairly common side effect of Epival, so you might want to check with your doc about re-evaluating your dosage or trying a new med altogether.
Best,
Nakamova
Shaking and trembling of hands arms is a fairly common side effect of Epival, so you might want to check with your doc about re-evaluating your dosage or trying a new med altogether.
Best,
Nakamova
- Messages
- 68
- Reaction score
- 0
- Points
- 31
Hi Josh,
I also have JME, I was diagnosed when I was 8. From what I understand, the hand control or lack thereof is common for people with JME. Until recently, both my hands would be shaky in the mornings, but my right one would twitch quite violently sometimes. If I was stressed or worried later in the day the hand would twitch and I'd blink a lot. It's good that you can recognise those things as warning signs and give yourself a rest. A month or so ago (when I discovered this site, BEST thing I have ever done, for several reasons) I started to reduce my meds - I was taking 1000mg daily of Epilim (Sodium Valproate, as is Epival). I haven't had a tonic clonic in 5 years, which is why I'm ditching Epilim - and interestingly (for me), my mind is clearer, I have more energy, and the shakes/twitching is all but gone...
Sooooo... the symptoms you describe would seem to be typical of JME. And as Epileric said, those twitches/jerks/shakes could be seizures themselves. I was told that mine are.
I also have JME, I was diagnosed when I was 8. From what I understand, the hand control or lack thereof is common for people with JME. Until recently, both my hands would be shaky in the mornings, but my right one would twitch quite violently sometimes. If I was stressed or worried later in the day the hand would twitch and I'd blink a lot. It's good that you can recognise those things as warning signs and give yourself a rest. A month or so ago (when I discovered this site, BEST thing I have ever done, for several reasons) I started to reduce my meds - I was taking 1000mg daily of Epilim (Sodium Valproate, as is Epival). I haven't had a tonic clonic in 5 years, which is why I'm ditching Epilim - and interestingly (for me), my mind is clearer, I have more energy, and the shakes/twitching is all but gone...
Sooooo... the symptoms you describe would seem to be typical of JME. And as Epileric said, those twitches/jerks/shakes could be seizures themselves. I was told that mine are.
Hey,
When I was 13 I was diagnosed with JME. For so long we thought I was just clumsy as I was FOREVER dropping cereal bowls after I'd woken up in the morning! And then if I got tired I'd start with the jerks, loss of hand control, all over again. But your "warning signs" and generally symptoms seem to be exactly the same as what I had - I'd definitely see about getting your medication upped or even changed as you shouldn't be having them at all realistically!
I'm unsure as to whether you're saying you're having full seizures (tonic clonics) or just the myoclonic jerks though, you've lost me a bit
I myself never outgrew JME, and it developed into a fuller form when I switched from Lamictal (wasn't working) to Keppra - within a month I'd started having tonic clonic seizures. A lot of people do grow out of JME completely after a few years on medication past their puberty so I've been told!
When I was 13 I was diagnosed with JME. For so long we thought I was just clumsy as I was FOREVER dropping cereal bowls after I'd woken up in the morning! And then if I got tired I'd start with the jerks, loss of hand control, all over again. But your "warning signs" and generally symptoms seem to be exactly the same as what I had - I'd definitely see about getting your medication upped or even changed as you shouldn't be having them at all realistically!
I'm unsure as to whether you're saying you're having full seizures (tonic clonics) or just the myoclonic jerks though, you've lost me a bit
I myself never outgrew JME, and it developed into a fuller form when I switched from Lamictal (wasn't working) to Keppra - within a month I'd started having tonic clonic seizures. A lot of people do grow out of JME completely after a few years on medication past their puberty so I've been told!