Hello, I also have JME.
I'm a drinker as well, and while you and I are both dumb to drink, it happens.
First off, we shouldn't drink, it lowers the seizure threshold. We shouldn't drink at ALL.
That funny sensation? It sounds similar to a migraine, if it's just beginning. Some might call it an aura but since you're not having TC's, I'm leaning more towards thinking it's a migraine. JME and migraines have a link, they're beginning to find.
Also, people with JME tend to have UBER-UBER-UBER-UBER bad Hangovers. Mine last for 2-3 DAYS. Really wrecks the brain and a night after drinking is about the highest risk day of having a seizure or having a buttload of 'jerks.'
I've had the same sensation... does it kinda feel like someone's passing a magnet around your head? Like a sense of wind almost as it goes past? I really think it's connected to migraines.
In any case, I'll also add this bunch of a response to someone I JUST replied to on the boards... it's got good general JME information that smoe people with JME don't know - I'm just so messed up by jerks, I've researched myoclonus so much I'm becoming a friggin' epileptologist in absence of access to health care.
You're lucky - you've met a fellow JME sufferer here. I'm a 25 year old male, as well, with the EXACT same issue.
MY RESPONSES? In Bold.
So I've got some good advice.
I'll take it piece by piece.
Hi there,
I am 22 year old male and I was diagnosed with JME about a year ago, but have been having myoclonic seizures since I was about 14. I was prescribed some meds (epilim) but have not taken any as I only want to use meds/pills as a last resort or when/if it really starts impacting my life in a seriously negative way.
All my research shows that one of the best combos to treat Juvenile Myoclonic Epilepsy would be a one-two punch of Topamax and Klonopin. The Topamax is an anticonvulsant to help prevent generalized seizures and can also supposedly help myoclonics. Klonopin is a benzo that through all my research, seems to be the most effective and agreed upon way to stop myoclonic jerks. Myoclonic jerks(or seizures if they present with that activity in the brain), are akin to being electrocuted for a brief second. Like me, they affect you in your upper trunk(arms and shoulders.) I've tossed many a things, broken TV's, Computer Mice, Controllers, thrown food, spilled drinks in electronic, thrown myself to the ground.... I know what you're going through.
I have found that I get the large, large majority of my myoclonic seizures while playing video games while I am tired (in the morning mainly). It is not due to flashing lights as I do not play games with flashing lights and do not have light-flashing induced seizures, but
I believe it is more to do with the fact I am trying to concentrate and do specific actions quickly (I play fast-paced games).
This is called 'ACTION MYOCLONUS', it's a positive form of Myoclonus. It means, if you have even just the INTENTION to move(or act) in many ways, that THOUGHT alone will cause you to have a myoclonic seizure. As an avid gamer as well, I have somewhat bad news for you. Myoclonic Jerks are deeply aggravated by being 'tired', stressed or otherwise. There are 'bad times', you'll notice a lot more jerking. If you're continuously jerking, you NEED to stop. In JME, continuous 'shots' of myoclonic jerks, are a potential precursor to a TONIC CLONIC seizure(classic grand mal, on the floor and shaking seizure, which I've had.)
I was wondering what is causing the seizures! Is it the stress from playing the games at a fast-paced level, is it me trying to concentrate too hard in the morning, what is it about video-games that induce my seizures? After I have on while playing a game (lasts about 1 second) I also find I forget what exactly I was doing/about to do in the game! Is this normal for myoclonic seizures? My trail of thought kind of gets interupted and it takes me about 3 seconds to remember exactly what I was meant to be doing.
This is normal - keep in mind - you're brain is on 'overload.' Neurons are getting agitated in the brain and too many are flowing in and out, your brain is processing information faster then it's meant to and it sort of 'short circuits.' There is barely a difference between a myoclonic jerk and an electric shock - in terms of experience. So bear that in mind, your brain will kinda have to 'reboot' after a couple seconds.
Also, whats the best way to wake up 'properly'? Often when I wake up, even if I've slept early and a good 10 hours sleep, I will be prone to seizures and it will be very difficult for me to play video games without them happening to me.
Should I drink lots of coffee? Go for a walk? Not go on my computer for the first hour (this is hard
)?
AVOID COFFEE and CAFFEINE like the plague - they exacerbate myoclonic seizures CRAZILY. Lay off soda and coffee and 'energy drings.' Energy drinks will MESS you up after long enough. I would advise not going on a computer or doing ANYTHING that requires concentration for the first hour or so. For me? I can't play a board game of chess... I can't play the card game 'war'... I can't play games like Tetris or puzzle games for lengthy period of time (longer then 5 minutes)... I'd wonder if you have the same kind of limitations, doing some of those activities that require greater concentration. On days where the jerks are 'out of hand', just go lay down. Drop whatever you're doing and go lay down somewhere and close your eyes, taking deep breaths. The key to living around the jerks is to work with them.
What should I try before using meds as a last-resort? I have heard rumours that going on only fat-based/protein diet can reduce seizures and that there other techniques to reduce them without using meds. Can anyone recommend one for Myoclonic seizures?
I have heard that 5-HTP, Pirecitem(spell check, it's a euro med that can be bought online here in the states...), Magnesium and certain Adkins' like diets can help JME. I have tried most and none worked for me. I AM trying Magnesium Tablets(like 5 bucks at CVS ore Walgreens)... 1000 mg_2-4 tablets depending on pil strenngth) a day... and they make me a lil drowsy but I have noticed a lessening of myoclonics after about a week.
And lastly, is there a chance these seizures could 'evolve' into the more serious generalized ones? Is there a chance it get significantly better/worst?
It depends.
In my case, when I was about your age, 21-22, mine developed into Tonic Clonic(Grand Mal) seizures. But mine are very infrequent, only happening on average, 1 Tonic Clonic every 6 months or so. I think that's the case for most JME sufferers. But yes, epilepsy changes over time and mutates and other seizure patterns could present. Considering you have a lot of the same 'reactions' as me, if I was a betting man - I'd bet you'd have a few tonic clonics in your future... but you might be able to prevent that if you get on something like Topamax and/or Klonopin. You eally need to discuss that drug combination with your doctor, ASAP. It is widely documented as being a saving grace to being with Myoclonus.
Thanks in advance!
