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[sassi]

So far, that's the diagnosis I have since my MRI and EEG came back crystal clear. It's mildly frustrating not to have an answer but it meant the topamax was working. Until yesterday and I'm still feeling the effects. I feel like I've been run over and decided I get up and run a marathon. My head hurts and I'm sick of it. Here's my background:

Last year, I went to a party and got extremely drunk (around July of 2012) and smoked pot (it was more than likely laced with something else) and had a grand mal seizure. I hallucinated as I came down from everything (probably lasted hours, I was "okay" around 4 am) and was out of sorts for the next couple of days. Prior to this I was on Welbutrin (very short period of time) and I don't remember that day at all, I just remember thinking my dad had crawled out of an air vent (this was in 2007 or 2008).

In January of 2013 I woke up from a nap and didn't know who I was. I could move around and everything and it came back to me but I was off for the rest of the day. In February of 2013 I was at work and ringing in an order and I had a black-out spell (didn't fall down) and came to but didn't know what was going on, what order I had to ring in the other, if I had already done it, what I needed to bring out first, and for the rest of the day I was off and had a killer headache. That whole table was messed up too. I got an appointment with a Neurologist for May and I had another black-out shortly before the appointment in April of 2013.

I got put on Topamirate (generic for Topamax) and my MRI and a sleep deprived EEG came back clear. I've had movements in my body (jerks) that are unexplainable and that are sometimes accompanied by a tingle in my head and followed by extreme tiredness and feeling out of sorts so my doctor is ordering an ambulatory EEG.

Yesterday (8/23/2013) I had a seizure after going out for a couple drinks with a friend. I apparently was capable of driving her home and getting myself home (judging from text records) but I don't remember anything after that except feeling nauseated and going to the shower (I always go to shower if I feel sick when people are close to coming home). After that I have no clue other than needing to get help. The random things I'm remembering are disjointed and don't make sense and my dad tells me I told him I didn't know whether or not I was in reality or not. I remember feeling like everything was super fuzzy and wild and I was told I couldn't remember anything about myself, not even my name. I was also told I kept saying "It's not 2012" for a while, and that I screamed the entire way to the hospital when my dad told me I drove home. I was also told I spoke to my brother. Trying to remember these things makes my head hurt. Last night it was at an 8 all night, today it's been hovering at around a 4 or 5.

I also apparently smoked pot some time during the day as well but I don't remember it? I've smoked pot before and it's not had a negative effect (it's calmed me) and I don't drink that much. So I don't know if it was a combination of all of that. The night before, judging from my journal, I had just come off of a crappy night's sleep so that probably didn't help.

I ended up at the hospital, I vaguely remember getting my dad but I don't remember him as my dad. Everything that I "remember" is told to me. I'm now back at square one and I hope this EEG shows something, I need some sort of answer.

^^^ That is me. So far, I'm not anything other than altered mental status because they can't catch it. My head says otherwise right now, it still feels like it's crazy and that I could just collapse into sleep at any moment. My jaw hurts really bad too, like I was clenching it. I don't remember tasting blood, but I don't remember a whole lot of anything other than shaking while I was at the hospital (tics or jerks).

That was my stupid moment of the year and it scared me so bad... I feel pretty ashamed over the whole episode too. But hi, I'm Sassi, nice to meet you! I promise I'm not this stupid about my life all the time.

 

[dejavudu]

It's been a little while since your post, but I hope you're getting some answers. Nice to meet you!

 

[sassi]

Nice to meet you to! I've yet to get any answers but I'm about to start pounding on the door of another doctor because this is just getting ridiculous. Between near going fisticuffs with the nurse over the phone to just wanting to scream at someone I can't get any answer. Plus she hasn't bothered to call me about the EEG which is ridiculous as well. I'm getting my parents in on it, finally, since it appears I can't get it done on my own (which is mildly frustrating in and of itself).

I'm hoping that I can get some answers soon before something happens that shouldn't happen. Doctors can be so frustrating! I just don't understand it. I really just want some answers and it can't be that hard to just sit down with your patient and try to figure something out or go up on the meds. I don't particularly want to go up on the meds but I also don't want these things to keep happening.

Life get easier, will ya!

 

[AnniesDizzy]

Wow Sassi, I could relate to so much of what you say. I've never smoked pot and I don't drink but other than that I can really relate.

I hope that you get some answers. It is frustrating when the tests don't show anything. Let us know what you find out.

 

[qtowngirl]

welcome sassi, good place to be

first thing to bear in mind... a 'clear' mri or eeg doesn't mean a whole lot when it comes to epilepsy. many many people have seizures with 'clear' results all the time. very much sounds like some sort of seizure you're going through. for ex, my mri's were clear for 8 years, was told my epilepsy reason was unknown, as 70 per cent of those with e are categorized. two years ago one different radiologist found a lesion, which was eventually diagnosed as being there since i was in the womb, known as cortical dysplasia.
taking care of ourselves and seeking answers is a lifelong requirement with epilepsy, so, if you're diagnosed know you can count on us for help/advice/sources for learning etc. if it turns out it's not e, good news.
the most important thing, initially and always, is being pro-active. which sounds like you are that's great. push doctors for appointments, results, more testing if you're feeling different, this is OUR life, and unfortunately a good chunk of neuros have a lazy attitude. well, we show them
you and i share a very similar beginning, my first grand mal happened in 2003 two days after i partied, a very long booze and cocaine night. at emergency they figured that was the reason and lightly said, 'take it easy from now on.' two months later i had another one, while sober and working. was sent to a neuro and he said the first one was a coincidence. seizure threshold had been taken down mostly due to the things i ingested, but grand mals start when they're gonna start, and even if i hadn't drank it would have only been a matter of time, would have happened either way.
in 2004 i started having simple partials after a few tokes and had to quit weed altogether. when younger i also had a few when having a drink or two, to the point i had to leave the pub, night over. hell really. i feel ya completely girl.
i would suggest having nothing for awhile and see what happens. the best thing to do is look after ourselves and avoid triggers. all the luck and keep us posted