tell me why u stole my life

[sbncmo]

dzivko,

I can kind of understand how you feel. I started having problems with depression as a young child, crying a lot. I started going to college & while I was still 18 I started having memory problems. I would be going to class & forget how to get there & how to get back to my dorm, so I just stood there for several minutes until I remembered. It continued to get worse over the years - I'd be driving & couldn't remember how to get home. I don't know how many near accidents I had.

I eventually had a nervous breakdown & was hospitlized for several weeks with a diagnosis of bipolar II. But things kept happening, like I would lose consciousness while driving or while talking to others, so my neurologist/psych ran an eeg & said I had a seizure disorder, but didn't explain what that meant & since he didn't say anything more, I didn't think it was that serious (The meds I was taking treated both bipolr & seizures). But things kept getting worse & 2 more eeg's still showed seizure activity, but still no explaination. It got so bad when I was driving, I never knew where I was or where to go & I tried to fake it by asking people in the car "What's the best way to get there?"

Then I got a new neurologist/psych. At first he said I wasn't having seizures if I wasn't losing consiousness, despite the previous eeg's. But he ran the 24-hr eeg & in the meantime I did a LOT of research. When I went back, he said I had tremendous seizure activity. I then went on to describe to him each type & name of seizure I have & he confirmed them all. Now here's the kicker - my mom knew I had grand mal & absence seizures starting at 1 year old & lasting into lower grade school, but she never told me until this past year after my current neurologist/psych re-confirmed the previous doctors diagnosis. (It would have been a lot simpler if the 1st doctor had simply said I have epilepsy)

So, like you, I went most of my life wondering what was wrong with me. Even tho I had been given a diagnosis several years ago, it wasn't explained to me. It scares me now to think that I was putting peoples lives in danger all the time when I was driving. But now I understand what is going on. My family & friends understand & are ready to jump in to help at a moments notice if it is possible for them, if they are not already obligated with something else. I'm thankful for my family & friends. They truly love me & want to help in any way. Yes, We know who our best friends are.

Shelia

[mia3769]

[sbncmo]

Thanks Mia. I know that was a lot to read, but it gave a basic history of what I've gone thru with my ep. It hasn't been easy. And the doctor not explaining certainly made things more difficult.

One of the scariest times I had was when I had my son (about 10) & my nephew (about 4) in the car & I lost consciousness. When I came to, I was on the opposite side of the road, the shoulder really, about to go into the lake. That scared the "wee-water" out of me. I don't think I drove for several weeks after that. That may have been one of the event leading to an eeg testing. Another time, I whipped right in front of a semi to get to an exit ramp thinking I'd missed my turn. Some really close calls.

I've stopped driving on my own several times before because of not feeling safe & now that I'm not allowed, I actually feel a little relieved. Frustrated often because I have to rely on others so much, but I try to show my appreciation by buying lunch if I'm able or at least an ice cream, or just have them come in & visit over ice tea.

Interesting how we both feel the frustration of the ep & we both pick the humming bird. I've found watching birds & my cats to be very soothing.

I saw all the anti-epileptic drug's you are on - some are pretty strong stuff. WOW! Talk about a drug cocktail! But I was in exactly the same spot 15 years ago. And then the other meds you take. My husband calls me a pharmacy! But I got off one yesterday & hope not to have it replace & will be off another one in a week. I take Vimpat, but I'm allergic to the others you take.

I don't know how much research you have done as far as meds & ep. I try to keep up-to-date, but I had one slip by me. I was in the ER in severe pain & the doctor kept giving me shots of morphine (I'm allergic to all the Rx pain meds, yippee, huh?). After I got home, I looked up morphine & epileptics are not supposed to received morphine. Maybe the ER doc thought the risk was worth trying it. Anyway, just something to keep in mind.

You have the tonic clonic's. That's enough, I know, 'cause I have them too. Do you have any other types of seizures? My neurologist & epileptologist have confirmed me with 10 different types of seizures and I can only take anti-epileptic drug's to treat the simple & complex partial seizures. I can't take anything for the tonic clonic's, myoclonic, tonic, atonic or occuclonus. It's unusual to have both tonic & atonic. What can I say? I'd an oddball.

Well, Mia, I hope your seizures start settling down soon. I've had 2 tonic clonic's in less than a month as well, so I know this has been a difficult time for you. I'm thinking about you. I'll keep an eye out for a post from you.

Shelia