New epileptic and HORRIFIED - Epilepsy Message Board

tanaiah94 · 05-26-2008, 09:14 AM

Hi I had a tumor removed from my right frontal lobe nearly 3 years ago and then ended up with a staph infection. I now have epilepsy. I started off with Grand Mals, then started having them while conscious. I am frightened all the time.
I now will have an aura first then my face pulls down on one side, I start dribbling and biting my tongue. I stiffen up, cant control my limbs and make that ghastly noise when I cant breath and am frothing at the mouth. I hear my children screaming in fear and they run out of the room.
I haven't had a seizure for almost a year (I do have either panic attacks or auras though) I hate to go out on my own.
About 3 weeks ago I had the sensation of my face pulling down again, I rubbed it and it went away. I am now permitted to drive. What do you think? I am on Trileptal 600mg, Dilantin 350mg, Frisium 20mg, Rivotril 3mg and Aropax 10mg per day. I feel terrible all the time and am not sure whether I am having panic attacks, auras or am losing my mind due to all the pills. I have suffered severe anxiety all my life. I feel as though the world is not real. I have a very poor memory and get confused a lot. People think I am putting it on. I have also gained 10kilos, are any of my meds known for weight gain?
Please help

sanjada21 · 06-09-2008, 05:17 PM

Hi,
I have been epileptic all of my life pretty much. Altough your case of seizures sounds worse than mine, I can definetely relate to your fear, confusion, memory loss, and just feeling completely out of this world. I can tell you that a lot of it has to do with medication. No matter which one you're taking; they all WILL have side-effects. Some are worse than others, some are easier to handle. I was on Dilantin before, it did make me gain weight, but so did Tegretol, Mysolin, Depakote ER, and etc..So since I have had this since I was very young I have just now started to notice major side-effects catching up to me rather quickly and I am switching to a different medication since my seizures have been under control for seven years now. You might want to try to get in with a better neurologist possibly to try to get you on better meds. I also have had anxiety and panic attacks but I have been able to kick those with herbal supplements that you can get through a holistic doctor or your local vitamin store -I'm not sure if a place such as GNC carries anything for anxiety. Good luck. I hope you're able to find the right meds so you can get your life under control a bit better.

valeriedl · 06-10-2008, 09:05 AM

I can understand what you are going through. About 7 years ago I had a grand mal out of no where. I spent 6 weeks in the hospital, most of the time put under so that I wouldn't have sez and they could control things better.

When I was finally realised I realized that I had lost over 10 years of my memory. Even now I don't remember things. It could be as little as things that happend a month or two (or a year or two) or as bad as things that might have happened just last week.

I still am having sez but they aren't as bad. I usually only have the kind that you are talking about. I will get wierd feelings, my face will sag, I'll drool and mumble. Sometimes I can feel these comming on and sometimes I can't.

I know about the meds too. On ones I would sleep all day and not eat a thing. On others I would eat constantly. It would get to the point where I would wait for everyone to go to bed and then eat a half a gallon of ice cream, and I'm not exerating. I gained over 50lbs.

In my state you have to go 6 months with out having a sez and I havent made it that far. Actually I would be afraid to drive, but if you know when they are comming on, make sure you get off the road, pull over. If you keep going saying - oh I can make it home - you may not and end up hurting your self and maybe even someone else.

Talk to your dr and if you can even another one. Getting a second oppion never hurts.