Video Games and Myoclonic Seizures (No flashing lights)

[BobbieD]

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.

At the moment it just means I am going to spill my Tea and drop my food every now (and sometimes look a bit silly if I have one infront of friends) - this is something I can easily live with.

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).

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.

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 )?

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?

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?

Thanks in advance!

 

[AndrewIrish]

I gotcha.

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!

 

[BobbieD]

Thank you so much dude. I wasn't expecting such a good answer! Although I have seen experts I don't think anyone could have given me such good personalized/relevant answers!

I always assumed Caffeine was a really good idea as it would help 'wake me up' and thus reduce the seizures. One of the reasons I have 3 coffee's a day was because I thought it could help. Stupid me.

Its also good to finally know what precisely has been triggering the seizures. The way you described it as the thought of moving can trigger it seems to be a perfect description.

For now I am going to lay off the caffeine hardcore (I can drink decaf coffee as it is the taste of coffee I currently most enjoy, I don't really notice the 'wake-up' effects) and see what that does.

After a bit if things are still not better I will try the magnesium (but I don't like the fact it makes you a bit drowsy...I often feel a bit too tired/sleepy most of the time. Whether thats due to bad sleeping patterns, being on the computer too much, bad diet, bad weather making me sleepy, or me just being lazy is another question!) and the 5-HTP, Pirecitem combination. I will of course consult my Doctor before mixing and taking any drugs!

Worst case scenairo I will just have to lay off the games during the morning (which will be hard!). I guess I am just thankful it is not a more serious case of epilepsy or another serious illness!

I am convinced there is a method (or multiple) out there which can control the seizures without the need for any pills/medication. Deep-breathing, waking up slowly and taking it easy in the morning, going outside more, changing my diet and dropping the caffeine I hope can control it.

Thank you for the help and I hope one day I can pass down this info to someone similar. Best of luck dealing with the condition and its good to know there is another gamer in the same situation as me.

 

[BobbieD]

Also just to add when I was on holiday by the sea last week I only experienced one small seizure (which is quite rare in one week). I had no access to technology and spent about 30 - 60 mins sitting outside watching the sea in the morning.

The seizure I got was also after a night out of heavy alcohol drinking!

I have found holidays where I have little access to computers and am by the sea in the morning have resulted in much smaller amounts of seizures.

There is definitely something to be learnt from that

 

[AndrewIrish]

Also, word of advice...

Don't know if you've played these games but if you haven't, I suggest not ever doing so.

Star Wars: The Force Unleashed II, or any of the Total War: Medeival(Rome, Samurai games) - they're a murderer on me, lol.

 

[BobbieD]

Haha thanks....tried those games out but didn't really like em! I play much worst though. RTS games like SC2, AoE2 with around 200-300 APM (Actions Per Minute) are the ones that make me constantly throw my mouse off the table (if im playing in the morning).

 

[Chaz1]

"holiday by the sea"

and what is sea full of, yes minerals, magnesium being one..

would do no harm to get full mineral analysis done, if u could...just a thought....

and some EMF protection, like earthing equipment...just another thought....

 

[AndrewIrish]

yea, I've had to give up RTS games although I love em. Used to be an Age of Empires badass but then the jerks came...

 

[Danawar]

Thanks to all the above posts they are full of a lot of useful information and I hope others will find this with use of key words I feel epilepsy is one of those subjects that every talks about when things are not going well and then ceases communication when things are again going well leaving newcomers / recently diagnosed people depressed at the prognosis.

I was diagnosed with juvenile myoclonic epilepsy at the age of 18 at the time I played a lot of World of Warcraft using the refer a friend system with one of my friends, we did a lot of all-nighters levelling many characters up to max level. Because of the late nights this started to bring to my attention small jerks nothing to concerning but worth investigating with the doctor.

After being referred to a neurologist and taking various tests MRI/ECG I was diagnosed. I headed off to university some time after with a medication called Keppra (Levetiracetam) that was chosen because of concerns for the side effects of Epilim (Sodium Valproate). Unfortunately I felt it disagreed with me I became depressed and angry so stopped taking – these charecteritics were not confirmed I had no diary and there were a lot of other factors such as moving away from home and starting university with late nights and alcohol. I went back to my doctor as the jerks were still happing badly after nights out on the town and I didn’t want to take keppra I was then moved over to Epilim (Sodium Valproate). And tried that for a while and experienced weight gain and depression again over the next few years I occasionally tried taking Epilim but missed doses and really didn’t have my mind set on it.

As with the initial post on this page I to thought it would be better to just 'deal with it' rather than take any pills that have side effects which was OK for the most part (but not recommended in hindsight) until 2014-2015 by this time the twitches had become a lot substantial and I was playing games such as CSGO, DOTA 2 and Starcraft 2 out of these games Starcraft 2 was always the game that caused me to throw my mouse across the desk this raised for further concern. I think this was mostly caused by stress although the stress is not ongoing the stress spikes cause bad seizures to happen.

Towards the end of 2015 my weight was becoming an issue because I would drink 3-4 energy drinks a day which was definitely not good for my health I did this because I thought by waking myself up I would have less seizures. So I decided to gives these up and go cold turkey unfortunately this was not good at all this caused the seizures to become worse and acted as a cover up (It was good just not for the JME in short term). As a result I decided to book an appointment with the doctor and get back on the medication and try and get it sorted altogether.

Starting out on a very low dose of 400mg every evening the medication seemed not to work on x-mas day while walking to my partners parents’ house I had one of my biggest twitches yet it caused me to fall over and hurt my leg which was not pleasant. This was not the first time my seizures had knocked me to the ground but this time it was long enough that I couldn’t catch myself before hitting the ground.

Moving forward I lost a lot of confidence for being out and about which is not good luckily I work as a web application developer so I could still work and the fall only strengthening my case to continue taking and increasing my medication. Recently I have seen my neurologist and I have increased my elilim dose up to 400mg in the morning and 400mg in the evening.

As the does has gone up I find the seizures are not happening as much (I think) but the ones that are happening are small and the signal does not propagate to my body resulting in my limbs staying put. This makes me more confidence to be out and about.

As things go on I’ll try to keep coming back to this post and hope to hear back on how you guys are getting on now a days and would love to hear form any one with similar experiences – feel free to add me on skype: Danawar2

 

[seagull]

What about stopping vid games for month or two(there is life out there)and read a book then you know for sure.
Them games are are having problems for people....I say read a book but going for a walk or health club football so many things other than video games