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smallfry89

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My name is Manny. Last Thursday I had my first seizure... or so I thought. I was sent to the ER via an ambulance, than sent to a neurologist. But first, I had an EEG. Two days ago (Tuesday), I had my neurologist appointment and was diagnosed with epilepsy. Not only did I have a seizure during my EEG and not know it, but it turns out I've been having them for years.

I am 22 now, and may have had epilepsy for well over 10 years. The subtle little signs were all in front of me and I had no clue. I've had bad deja vu for years now, and always had trouble in school. My parents just figured I had a minor learning diability, and that it was nothing that needed to be addressed.

Anyway, I am still very lethargic a week after my grand mal seizure. My speech is still slow and I am not walking normally. I also can't multitask for shit. If it weren't for autocorrect, etc, id be an awfully bad typer right now. I have been put on 500mg twice a day of Levetiracetam for the next two weeks, than I start taking 1000mg twice a day after two weeks. I have an MRI scheduled on Tuesday because I had a CT scan, and there were blurry spots so my neurologist is worried I may have tumors, or even brain damage.

In all honesty, I am a little scared. I know this won't kill me or anything, but I've never been on meds before. I can't work right now, and my doctors think I should apply for SSI.

But anyway, thank you for letting me vent, and I hope to post here often. :)
 
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Hey there and welcome to the site!

You're the same age as i was when i was diagnosed (four years ago now). Adjusting to meds can be difficult, and i'm still adjusting now. I also didn't know that i was having partial seizures until after i'd had a tonic clonic and partials showed up on the EEG.

Anyhoo, this is great site with a lot of friendly people on it. There's a wealth of knowledge and personal experience here.
 
Hi Manny, welcome to CWE!

A tonic-clonic (grand mal seizure) can take a toll on the body, so be very gentle with yourself until you recover. The Levetericetam is probably responsible for at least part of the way you're feeling, including the lethargy. That should change once you are at a stable dose for a while. That particular med can also potentially affect mood, so if you find yourself becoming unusually cranky or emotional, consider taking a B-complex vitamin with B6 -- it can help.

If you're able, try and keep a journal of what happened before, during and after your recent seizure. There might have been some particular set of circumstances or triggers that played a role in bringing it on. A journal can also help you gauge how you're feeling on the meds, and whether or not you're having side effects. If you're not sure of whether something is a side effect or not, write it down anyway.

I hope the MRI goes well, with no significant results -- let us know.

Best,
Nakamova
 
Welcome Manny!

This is a great place to have questions answered and to feel safe and unjudged.
Take it easy until you feel better.
Good luck with the MRI!

Tom
 
hey welcome! It can be hard at first to go through everything! i think i was the same as you as a young girl i always got light headed and strange feelings it was actually only this year i realised it could have been epilsey all along! I got diagnosed around 2004.

I hope you feel ok and we are here to talk if you ever need it! its great place to get advice!
 
Hi Manny,I'm the same as you.I'm 36,diagnosed with epilepsy at 33 but I can remember deja vu (auras) as a teenager,always 'fainting'-turns out they were complex partial seizures.probably had it my whole life,it was just was always put down as fainting??? Go figure.
 
Very sorry for my lack of posting. I've been sleeping lots because I'm still getting used to my meds. That, and my speech is still VERY slurred, I can't walk a straight line, and I'm still running into walls very often. Some of my facial muscles are also sort of limp now, so my Dr is worried there might be permanent brain damage. Not enough to be considered MR or anything, but enough to make life kinda diffucult. I have an appointment with my primary doctor on Friday, and he is going to be filling out the paperwork for me get SSI.

Things aren't great right now, but I guess they could always be worse
 
Thanks for sharing your story Manny. My daughter also had loads of DejaVu over the years, we thought nothing of it since I do too, (but I never had seizures,) and often at the same times, so maybe it's not brain-electrics, maybe we actually HAVE been there before?! Then she comes with this grandmal seizure out of the blue... like what you wrote, now we are seeing those subtle little signs, after the event.

Sorry to hear your recovery is so slow and frustrating, hope the MRI was clear and that things go well for you on Friday. Could the blurry spots on the CT have been bruising from your major seizure, that might resolve with time? I don't know much about these yet. All the best.
 
Again, sorry for the lack of posting in this thread. Kinda forgot about it lol.

But yeah, I know and get that there are a lot worse diseases out there than epilepsy, but this really through me for a loop. I'm still recovering from my last grand mal seizure from almost a month ago now. The MRI came up clean for tumors, etc (Thank God), but these meds are kicking my ass. I had another seizure the other day and was rushed to the ER. This one wasn't a grand mal, or the ones I have where I just kinda space out. I stayed conscious the whole time, but my arms and legs got real tense and stiff, my neck felt like someone was trying to stretch my head like a rubber band, and I couldn't talk. I had tunnel vision, so I was with it, but also not. My neurologist was the one who said we go to the hospital, and I went via ambulance.

My neurologist wouldn't take me any earlier than June 26th, but I feel like I need to be seen before than. I can no longer function properly, I've lost my job, and have been place on disability until november. After november, I know I still won't be able to work, so have no clue what ill do for money after that.

Sorry if I sounded all bitchy and whiney, I just had to vent. Thank you for anyone who took the time to read this.
 
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