Concussion + Epilepsy = Great First Semester at University

[EmStone3]

Hi Everyone!
My name is Emily, I'm from Nova Scotia (Canada) and just recently found out this December that I have Juvenile Myoclonic Epilepsy.

Background:

I'm 21 and have played competitive hockey and soccer and experienced my 5th major concussion this September playing varsity rugby. My Athletic Advisor at my university said should never play dynamic sports again... funfunfun...So I basically started drinking the next week to pass the time (not recommended after concussions at all...)

I've had instantaneous jerks/twitches after heavy drinking for a couple years, and didnt think much of it and attributed it to 'the hangover'...but i decided to get it checked out after falling on multiple occasions due to extreme jerks.
The docs recommended a neurologist/EEG and what do you know? Found out I had epilepsy. For treatment I have to take a pill in the morning and at night, and never drink alcohol because that it the main thing that lowers my threshold.

I have never experienced a tonic clonic/grande mal seizure... Does anyone know if it is just a waiting game or if I could possibly live my life seizure free?

Might i add how wonderful i think it is that there is a forum for people with epilepsy allowing everybody to share its marvelous. Thanks so much.

 

[Nakamova]

Hi EmStone3, welcome to CWE!

You've found a great forum! The members here are a terrific source of wisdom, empathy and support.

What med are you on, and does it control your JME? Any side effects? If it's smooth sailing for you, then that bodes well for continuing to be seizure-free while medicated. There's no way to know whether you can ever be seizure-free off meds -- it's a different story for each person.

Best,
Nakamova

 

[epileric]

Welcome Emily

Nice to have another Canadian here.

I was born with my seizures & never had a tonic/clonic until I was 18 & decided that partial seizures weren't so bad so I'm going to stop my meds. Woops.

That doesn't mean you will get T/Cs but it doesn't mean you won't. Everybodys seizures are unique to them. It is common for seizures to change as time passes. Many people here have mentioned things happening with their seizures that never happened before. Even mine have evolved from when I was a kid.

Meanwhile, make yourself at home, check the site out & if you think of any more questions then feel free to ask.

 

[valeriedl]

You said you were in college and I know not drinking is hard to do when everyone around you is having a blast getting drunk, but it's something you have to realize that you just won't beable to do, espically with the meds.

I will have a drink every so often. Usually when my husband go out for a fancy dinner or something like that. But this only happens every few months, and it's only a small drink, a glass of wine or something like that.

I've never had any problems but everyone is different. I deffently wouldn't suggest that you go out and get drunk all the time, that's not good.

 

[EmStone3]

Nakamova: Hello! The med Im on is Apo-Levetiracetam. The doctor said it could make me emotional haha and she was right.... i can cry at any moment. My family understands but Im not sure if my ups and downs are going to be taken well by my roomies next week when im back at uni... i may see if there is a different med i could take? or do they all make you extremely emotional/irritable?

Epileric: Hows she goin' eh? ...just kidding. gotta keep up with the maritime stereotypes righttt? and are the meds just too much of a hassle *slash* bad side effects that they arent worth it? I think I should stay on mine for a bit and see how things pan out. Thanks for the info!

Valeriedl: "drunk" isnt even on my radar anymore, it isn't worth it at all. Thanks for sharing the same view as me because its hard to convince students/team mates that you 'can't drink'. Ive had too many embarrassing stories of falling in public the morning after to justify it.
I have test-drove the single glass of wine concept and it seems lovely

 

[irish71]

I have Juvenile Myoclonic too, and I'm in my first year of college. It SUCKS. I also am scared to drink because when I'm hungover, my myoclonic jerks go haywire. (When I do decide to drink, I make sure it's not enough to make me hungover AND plan to take it easy the next day.)

ANYWAY...I was diagnosed in 8th grade. I had never been medicated before and had the jerks for most of that year, and didn't get a grand mal until around finals (after which I was diagnosed and medicated). So a grand mal could very well happen at any time. I'm on Lamictal and it causes a number of side effects, including depression :/ However it's worth it. If you stop taking it or miss a dose or 2, you are at HIGH risk for even more jerks and grand mals (unfortunately, this has happened to me :/)

You prolly hate myoclonic as much as I do but you'll learn to cope over time. Without seizures, the worst part is remembering to take the meds!

Stress from college/school work is a major seizure provoker btw.

 

[corsch]

Hi Everyone!
My name is Emily, I'm from Nova Scotia (Canada) and just recently found out this December that I have Juvenile Myoclonic Epilepsy.

Background:

I'm 21 and have played competitive hockey and soccer and experienced my 5th major concussion this September playing varsity rugby. My Athletic Advisor at my university said should never play dynamic sports again... funfunfun...So I basically started drinking the next week to pass the time (not recommended after concussions at all...)

I've had instantaneous jerks/twitches after heavy drinking for a couple years, and didnt think much of it and attributed it to 'the hangover'...but i decided to get it checked out after falling on multiple occasions due to extreme jerks.
The docs recommended a neurologist/EEG and what do you know? Found out I had epilepsy. For treatment I have to take a pill in the morning and at night, and never drink alcohol because that it the main thing that lowers my threshold.

I have never experienced a tonic clonic/grande mal seizure... Does anyone know if it is just a waiting game or if I could possibly live my life seizure free?

Might i add how wonderful i think it is that there is a forum for people with epilepsy allowing everybody to share its marvelous. Thanks so much.

Welcome to the crowd! Because you're on medicine you probably won't have a tonic clonic seizure, and you DON'T want to. They suck!

You might want to start taking Vitamin B6 because I've read that it'll help with some of the side effects. Plus, after a few weeks the side effects might diminish (that was how it was for me).

As far as drinking goes, I looked up online and for me at least, the 1 drink = 6 isn't true. I had a few drinks and I didn't feel any more tipsy than I normally do I also didn't have a seizure or any other side effects even on the next day. I also wasn't SMASHED drunk, just happy . Also, if you do plain on drinking, make sure the medicine is in your system for 2 hours so you're at solid state and be sure to have B6 handy as I have read that taking it before and after drinking helps with the hang-over (we're more susceptible to it due to the medication)

Keppra (levitieracetam) has kept me seizure free for a month, this includes twitches, absence seizures and tonic clonic seizures.

I hope everything works out!

 

[Rae1889]

Hi Emily!
they told me I have (had) JME, but I think its TLE. They also told me i have pseudo-seizures, psychogenic seizures, etc etc. and keep flopping back and forth between answers.

Nice to see another canadian in here. Couple questions for you. Did they do an EEG or MRI etc? I am asking because seizures can be trigged by alcohol withdrawl, and you mentioned that they happened after nights of heavy drinking. Keppra can not only make you emotional but enraged as well so be careful about that.

 

[EmStone3]

Irish: Thanks for the info and yes... im in my 4th year now, so being around all my friends who are basically celebrating life via alcohol (while i cant) just plain sucks. I LOVE being social but some days seems "worse" than others and I kind of avoid my friends... I sometimes find it hard to carry on a normal conversation (probably concussion related though). If people go out to the bar I usually dress up and go for probs 20 mins max just get some laughs in then head back home... the flashing dancefloor lights are probs not the best thing to be around...

Corsch: Thanks for the vitamin B6 and drinking advice Is Keppra the commercial name for Apo-Levetiracetam?

Rae: Hello back! I'll take a peek at temporal lobe epilepsy online to inform myself on that topic. I had an EEG and a CT scan done, and the doctors ive seen have been pretty general and said that alcohol reduces my seizure threshold which causes me to jerk the next morning - Im having a more specific neurologist in Halifax look at me on the 20th and Ill throw you a msg if he says anything otherwise (alcohol, temporal lob epilepsy, etc.)

 

[huskymom]

Emily,

Hey dare! Welcome to the party! Sorry to hear about your social issues with not drinking and trying to fit in with the crowd. I try to stay away from any drinking at all. My mind is hard enough to focus, I don't need the added "help"!

You are about ready to graduate! Enjoy the college time you have left :hello:

 

[EmStone3]

Thank you husky mom! will do

 

[corsch]

Corsch: Thanks for the vitamin B6 and drinking advice Is Keppra the commercial name for Apo-Levetiracetam?

Keppra is indeed the brand name levetiracetam. As far as B6 goes, it's only what i've read so I'm not sure if it'll work.

 

[Endless]

Hey, Em!

Welcome to the forum! I'm sorry you can't drink to celebrate with your friends. The ones that don't understand sometimes unintentionally pressure the people around them to drink, which isn't fair.

Do you have O'Douls non-alcoholic beer in Canada? In the states we can get it by the case at Costco wholesale and most of the bars have it. It's what I drink when I'm out with friends. It doesn't taste too bad, considering it is alcohol-free. And it looks like regular beer in the glass - no one knows. Because I know you can act crazy without the alcohol, right?

 

[EmStone3]

Im a big beer fan and Ive tried Becks Non Alcoholic beer.... not to fond of the taste though. i think ill shop around and see if there is any decent ones out there, and ill look into O'Douls.
Its true about the unintentional pressure, I usually just tell the truth and say Im not drinking buttt I know i did lie once and said i was drinking vodka water. And yes... who needs alcohol to dance and be outgoing really? yesterday I grabbed my mom and force-waltzed with her around the kitchen singing 'aint no mountain high' hahaha she wasnt too pleased


"if we weren't all crazy, we would go insane." - Jimmy Buffett

 

[Endless]

If you find something better than o'douls, will you let me know? I'd be very interested!

 

[Nakamova]

Friends of mine go for Clausthaler. Haven't tried it myself.

 

[EmStone3]

Thanks Nakamova, and I definitely will Endless! Em, the "designated non-alcoholic beer tester" Stone

 

[Endless]

Thank you!!!!

Hmmmm... now to find it! I found it on the internet, but shipping was just as expensive as a six-pack.

 

[EmStone3]

Im studying for delayed exams right now, but when im back at Uni Ill do some mad searching. It'll be a distraction from writing papers!
And my older brothers are pretty sweet and owe me for doing their christmas shopping for them, sooo I may be able to recruit them for the paying process

 

[valeriedl]

You could always make a "mixed drink". Coke with nothing mixed in with it. No one will know unless they actually take a drink of it.

My friends would laugh because when I did drink it would mellow me out. I get going pretty good not drinking now, people have thought I've drank a six pack the way I was acting. They call it a "contact buzz". It's great too cause I don't have a hangover the next morning and feel like crap the next day.

You don't need to have alcohol in order to have fun!