Diary of an Epileptic

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I would call your doc AND hit the ER. At this point you can be pretty sure that the Dilantin isn't for you, and it's time to try something else.
 
Nak's advice is good, but I have little room to talk since my solution was to just call my doctor. :/ Then again, I do have kind of a tiny excuse in that I don't really have much in the way of transportation, but if I'd REALLY wanted to go, I could have called the EMTs and made the VA pay for it, ;)
 
Damn. My lips are looking the same way as they did in that video I posted earlier in this thread. its like they are covered in tiny pin sized hives on and slightly around they lips. they are swollen and grossly enough, they are leaking a clearish yellow fluid. like honey. I have changed anything else in my surroundings *again* and havent eaten anything I havent eaten before *again* except my medication.

I tried to take the allergy pills at the first sign of it coming back. hoping it was like a food allergy I developed, but it didnt work. I am wondering if it would be worth it to use the epi-pen if it gets worse. where I couldnt breathe well like last time.

I hate the hospital. I always land my butt in there somewhow or another... I havent taken my dilantion last night because I am sure its that.
 
*hug* *comfort*


I swear they need to make a hypo-allergenic medicine *snicker*
 
This sucks Rae.. yeah it sounds like dilantin isn't working for you. Hopefully the neurologist can get you on something else quick.

I think we may have to learn neurofeedback ourselves Rae. As far as I know, there is only one person who practices it in Winnipeg, and it's for ADD only.

I'm surprised at this, it's not like we live in a small town.
 
I know! 60% of manitoba lives in Winnipeg and we dont have some of the things the small towns do. boo..

So as of last night I am on no AEDs. and its odd. i have a panicky feeling. but my face turning into quasimoto is not an option.
 
Rae,

I'm so sorry you're having an allergic reaction. I'm smack dab there with you. I've had an allergic rash to 4 meds now. Sighhh..

When I was off meds, it was tough at first, then after withdrawl it felt good for awhile. Good until I got so I couldn't stand the seizures any more. But I LOVED having my brain back!

I'm thinking of you. Hang in there. Your doc will get this all sorted out soon.
 
Oh my Rae...I hope your allergic reaaction is better and they come up with a better solution for an AED.
 
Well. I havent taken my dilantin since monday night, and I feel like im going crazy! i'm twitching and shaking and spacey. just kinda going about my day like a robot. BUT....since stopping the meds, my lips have not proceeded to get worse. they are really dry and "shriveled" but they are not oozing or hurting. its definitely the meds if it stopped dead in its tracks.

damn.
 
Oh, Rae. I'm with you, poor baby.

I just got rid of my allergy rash, so there's hope for you, too. Did the doc put you on any kind of steroid, antihistamine, etc.? The steroid cream, antihistamine combo stopped my outbreak in its tracks. They said if that didn't work it was going to be oral steroids.
 
Okay, so went to my neuro appt yesterday only to find out that they switched it to may 6th without telling me. grr. so I have another long while before I get on different meds. and although its nice to feel like me again, the simple partials are driving me nuts.
 
had another tonic clonic yesterday morning. i feel wiped. rashy/bruises thing is still there. doesnt look any worse, but not any better either. just one more day until I can go in and get it figured out.

I triggered myself by stress yesterday. fight with my parts man the day before got me going and then every little thing irritated me. people bugging about the wedding and social and shower etc. I jsut dont care about the little details.
 
Ooohhh Rae, sorry to hear about your t/c.

Do try to take it easy today & keep us updated on how your appointment goes tomorrow.
 
sure will.

I wish I could videotap my appointments so that I know im not missing anything.
 
I have a recording walkman with adjustable recording levels & clip on microphone that I take to such events.
 
Wish I had one. I have one on my cell phone but it only records about 5 minutes.
 
Second best way is if you can get someone to come with you and have them take notes -- it keeps the docs on their toes.
 
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