Diary of an Epileptic

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Okay. BAD weekend. *there was another word I was going to use for that but decided that it would be best to keep it an understatement* I had a seizure, friday, saturday, and sunday. Skipped work monday cuz I felt terrible, but had a nagging feeling to come in today, turns out my controller is away.

I hurt alot. like straight to the bones. Hot shower and hot baths dont work. the friday seizure wasnt too bad. I could barely even call it a seizure. does 30 seconds count??? it wasnt violent either.

Saturdays was in the back seat of our car driving home from brandon to dunrea. We had supper at his sisters new apartment. She made some Curry Vindaloo and it was great. but She used flour to thicken it. and that didnt react so well with me. She felt so bad because she had planned the entire meal gluten free for me, and then when it wasnt thick enough, she put in white flour and forgot.

Within half an hour of eating it I felt odd. It was snowing colours in her living room. like the left over visual of a camera flash. I had some myoclonics and a few staring spells. They *Jacquie, Jeremy her boyfriend, Scott and Chad* were all telling me I looked really realy bad. I was sweating and really warm to the touch, so instead of going to a movie after, we went back to his parents place. its about a 45-1 hour drive back there, so layed down in the back seat.

Chad then said that I started making funny noises and when he checked on me I was just starting into a Tonic Clonic. This was the first one Scott got to see up close and personal. No adults, and he had to do all the work while Chad drove to find a place to pull over. I had a big tonic cry, kicked my legs out into the car door and had somehow twisted the seat belt around my neck. I chewed my tongue enough to make it bleed pretty bad, and Scott had to dodge my jerks to get the seatbelt away from my neck.

It lasted about 4 minutes. a long one hasnt happened in so long. then I slept for about 10 minutes and when I woke up I had no idea where I was and wanted to leave. But then calmed down and stared out the baack windsheild completely facing it at the stars and the road until I fell asleep again.

Chad said that when he got home, Scott said he would collect the stuff and Chad could collet me. then we got inside, Scott was in the washroom, I went pee and came out he was gone!!! I felt terrible after Chad told me that I had a nasty violent seizure in front of him, I think I terrified him really bad.

I couldnt look at him the next morning. I hid. I am so embarrased and upset at myself. I know how he must feel. It would be like the same as me feeling for him after his accident. I just couldnt talk or look at him. he didnt either as far as I could tell from my quick glances.

The seizure sunday was short, probably from teh stress of being around Scott.

I still feel terrible
 
Superbig hugs Rae. It sounds like you had a rough weekend.

Aw, I can't imagine what it's like for you. all I know is that you shouldn't feel embarassed (easier said than done). It's not your fault.

At least the other two were milder, and you know that gluten is a major trigger for you When you and Chad come to visit, I'll definitely make gluten-free food for you. I know how! I can even try my hand at baking, although, chances are I'll buy gluten-free baked goods, since my last experiments were... solid. In a bad way.
 
lol solid as in Hockey puck?

Lol and I wont make you cook different for me. Hell I wont make you cook for me at all. I have no problem going out and getting things to do it myself if nned be. its actually a little expensive to eat without gluten.... boo
 
I pride myslef on my specialty cooking! I love being challenged to make tastey gluten-free meals (or milk-free, or nut free, or all three free. I've done it!). If you come here, and we get together in the evening, I'll make us all gluten-free dinner and send you home with the recipe if you like it.


Yes... hockey puck... murder weapon.. whatever... lol
 
Sorry for the sucky weekend Rae. I hope you feel better/bounce back soon. It does look like this fingers gluten as a culprit, so there's that.
 
Home in time for a tonic clonic!

There is no scream button on here?
 
I hear you Rae, button or no. :(

Where are you at on meds right now?
 
*inserts scream button* oh wait, that was the "start WWIII" button. oops. sorry. :(

*comfort Rae*
 
Nak, not sure I follow?

I'm not taking lamictal. havent for a month now. and Im at 300mg of Dilantin for that month, and he didnt tell me to increase at all.

Does anyone know if that should be higher?
 
I was just curious if you were at your full dose of Dilantin, or if you were going any higher. If you're still having T-Cs, maybe your does needs to be higher.
 
Maybe? hard to tell I guess.

I was told to just start at 300mg and not work up to it. and I've been on it for a month...

I have noticed alot of side effects though. but they are tolerable for now.
 
alot of side effects noted on Dilantin so far.
I have Iffy control with it, but also noticable hair loss. *way more than Lamictal and it seems to be getting worse not better* sensitive teeth. breakouts, my lips are starting to go numb/sore so it makes me think they are going all owie again. which makes me think that it wasnt frost bite in the first palce, but it was the meds. I cant sleep very well anymore. even though I tried to up myself to 30mg of melatonin and I get really sleepy, but I just cant fall asleep. I have no dreams anymore. at least that I remember. I have a "sticky" feeling in my throat. like I always need to clear it, but nothing there to clear. and I have muscle aches. There are a few more, but I dont remember them at the moment.

I also have dime size splotchies on my bodie. very very sporadicly placed and it looks like a healed burn. but I havent burnded myslef.
 
Oh Rae, I think you and AEDs just don't mix!

Get a neurofeedback machine ASAP...
 
I think your right. I want the neurofeedback machine. but not until after I am done with all my wedding stuff. I want to stay out of debt *just barely as it is* for now, so buying right now isnt the best, and I can't find anyone who practices neurofeedback for epilepsy in winnipeg. I am doing better back on GF though. just gotta stick with it....
 
Blech. Stoopid meds :(

At least the gluten-free seems to help. It's a start!
 
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