I have 6 diseases, a month ago we started testing for #7. We thought it was MS. Imagine my surprise when, last week, my Neurologist tells me that the tests came back saying I have Epilepsy. She's very low key and downplays everything normally. She said my EEG was "severely abnormal" and "very, very abnormal". I was so stunned that I had to ask her five times if she was sure I had it and, "So you're saying that I have Epilepsy." FIVE TIMES. I'm still shell shocked about it.

I turn 48 in May and have never had outright seizures before that people would notice. I can remember as early as my 20's having this "tense, tense up more tense way up and POP!" thing happen. At the pop! I'd give one giant shake like a dog after a bath. Then I'd have to lay down as I was super tired. That was it. I'd had EEGS for other things (hey you don't get diagnosed with 6 diseases and not have EEGs, lol) but none were this in depth. The dr. said that tense, tense POP thing were seizures. Also the symptoms that I'd been having lately with waves of "exhaustion" hitting me and partial face numbness (have you ever had your nose go numb? it's totally weird) and losing the ability to speak clearly. Those were seizures.

So last Wednesday, after I got the news, I was prescribed (generic) Kepra. I started taking it that day. 500mg 2x a day (12 hours apart). I was ok until I woke up Saturday where I just felt "off". I knew a seizure was coming. But I was thinking, "tense, tense POP!" A few times that day I even went into my master bedroom, where my husband was working on his computer, to lay down where he was in case it happened. Nothing happened.

Saturday night/Sunday a.m - 2am to be exact, I woke up having a massive grand mal seizure. The kind of seizure you think of when you think of epilepsy. I even had scratched up and down both arms, really hurt my neck (I have Syringomyelia in my cervical spinal cord so I have to be super careful with my neck) and just freaked out. I called and left my dr. a msg. asking if the Kepra can cause seizures when you first start taking it. I also called my pharmacist and asked him. He said, "no".

The dr. called back 1st thing this morning and said that you can still have seizures when you first start taking the medicine but it doesn't cause it. AND, apparently the type of seizures that I had been having all along are capable of turning into grand mal seizures. So now, when I have a seizure, it will be a grand mal. The switch has been flipped. I'm very sad about this.

I was also informed that my driving privileges are being revoked for 3 months. In the State of Arizona, if you black out (or have your consciousness altered by a seizure), you lose your driving privileges for 3 months. They HAVE to report you to the DPS. So now I've lost my freedom to drive. That freedom meant everything to me. Even with all these crappy diseases and all this pain, I was still able to come and go as I pleased. But now even that's been taken from me.

I'm wondering if anyone can share experiences of taking Kepra - specifically generic Kepra - and can tell me it gets better. I have an 11 year old son that I home school and I really don't want our lives turned upside down any more than it is with me being sick. I work really hard to seem "normal" and to serve others so that my focus is not on myself. I would like to continue with that. If I focus on me, then it's bad. I want to still be able to help others and show my son that we should always help those in need so that we don't wallow in self pity.

Any words of wisdom? Thanks in advance.

First, I would call your neuro and find out more specifics about the seizures?

Have you been diagnosed with a specific disorder or will that be determined?

Is there a specific cause, has it been determined as idiopathic or symptomatic?

These may be helpful in determining medications that would be more helpful.