Hi, i'm new here and have an issue

[theormos]

Hi, my name is Alex. I'm 16 and I have JME, juvenile myoclonic epilepsy.

It started last summer with extremely violent shakes in the mornings causing me to drop things and occasionally fall. Then I went to a friends house for the weekend and I had my first seizure. Immediately we saw a neurologist and I was diagnosed. Since then I've found some of my triggers, including stress, sleep deprivation, and flashing lights. I've had a little over ten myoclonic seizures and am on Keppra.

I hate to start my history here on a bad note but this past week has been hell for me. Saturday night my dad told me that he never wanted to see me again. Being the teenager I am I got upset, I've cried myself to sleep since then and since I have myoclonic epilepsy the stress and sleep deprivation have been causing some issues. My body shakes almost all day and waves of pain starting in my head wash over my body. I don't know what to do because I can't calm down and I don't want a seizure. :-(

 

[rory]

Hey Alex
Sorry to hear about your shit week, do you live with your dad? i hope you have a safe place to go. all the things you mentioned plus the stress of your situation and the stress of not wanting a seizure can bring on seizures and auras etc. can you call your neurologists office or your gp's. the pain thing and the shakes dont sound right, though if the shakes are part of your symptoms it could be your epilepsy acting up. you may needs something to calm you down and get you through the stress, your neuro or gpp could prescribe something, i usually get xanax or clonazepam but you may be a bit young for benzos, im not sure. you should defintely get in touch with one or both of them.
i hope things get better, i really do. i hope you have a support network, friends etc. people here are great and can help lift your spirits, try the padded room its great to rant in, it can be really helpful actually writing/typing whats bothering you and just giving out.
also just a side note about keppra, are you having side effects? i was on keppra for 6 months and found it did not help when i was in a bad mood, i had to come off it due to severe depression issues and am now on trileptal which i love, you are on an okay dose of keppra though.
anyway, chin up dude, things do get better, im living proof of it.
Rory

 

[qtowngirl]

welcome theormos,
you've come to the right place, you'll see. plenty of hugs here, you'll literally feel it through your screen. ask any question, look for plenty of advice, or like rory said, rant away. there's only one topic not allowed here, and you'll find that in the new members info. other than that, give 'er. lotsa love.
as for your dad, up to you but i'd leave. the more that negativity is in your life the harder it will be to keep the stress/seizures low. you sound fairly mature and don't need him if that's how he's laying it down. i moved out when i was 16 (mother drinking) and it was one of the best things i did for myself. flourished.
i realize tho that you need help, what's the situation with your mom, older siblings maybe, aunts/uncles?

 

[Nakamova]

Hey, thermos, welcome!

I'm so sorry to hear about ALL the stress you're dealing with -- the seizures and your dad. Since you know this stress is triggering, definitely make it a priority to ask for help. Are there friends or family you can turn to? A counselor from your school? Can you talk to your regular doctor or neurologist? They may be able to suggest resources to help. It can help to vent -- feel free to do that here! -- and to write things down. As Rory mentioned, keep close track of your moods, because Keppra can sometimes make people go a little haywire. If you find that happening, try taking a B6 vitamin supplement to help. Another thing that might help with the shaking is a magnesium supplement. (Both are available over the counter at the drugstore). Taken before bedtime, the magnesium may also help you get to sleep.

Hang in there!
Best,
Nakamova