Hello :)

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

D

DorCountyGirl

New
Messages
6
Reaction score
0
Points
0
Hi all! I was just Diagnosed in March 2010 after a sudden seizure while at home. After two EEG's (One normal & one sleep deprived) it was confirmed I have abnormal brain waves and have been prescribed Carbatrol. Luckily I only had the one full on seizure but have had a few questionable things happen along the way too.

I question if anyone else experiences the few issues I have had since the seizure. The biggest thing is I sometimes have "twitches", they are usually just small in my fingers, hands, feet, probably barely noticeable to anyone else.

The other issue only happens every now and again. My vision blinks. It makes it look like the lights blink, almost as if there was a storm and the electric blinks for a second. This happens a lot when I am in a stare.

These things aren't major & I know I am def lucky to have only had one major siezure at this point.

Nice to meet you all : ).

P.S. - The 6 month drivers lic. suspension really sucked after the seizure too!! Been there!
 
Hi DorCountyGirl!!

Sorry to hear that you had the seizure! I am on Carbatrol too, as well as other stuff. I have not had the eye blink thing, but I do occasionally "see" things out of the corner of my eye that aren't really there. Freaky! Most of my seizure activity is at night.

Best of luck to you!!! :hello:
 
Hi Huskymom! There has been one time I thought I had an episode at night, I woke up blankets everywhere, had dried saliva all around my mouth & face (which is not usual for me), and was very tired and very sore. It's hard to tell if it was really anything, I would have thought I would have woken up my fiance' but didn't. Something just didn't feel right though, and it hasn't happened since.
 
Welcome to the club

I'm also on Carbatrol except it's called carbamazapine here in Canada. I occasionally get strange visual effects that I assume are from the medication. Seeing spots is one of them. I have noticed that if I get these effects it's before I eat but after taking my morning meds so I wonder if it has to do with metabolizing the meds. I do get other strange visuals but because they're so rare & they're early in the morning when I'm half-asleep I can't remember them.


What kind of seizures do you have?
 
Nice to meet you Epileric :shake:. That could be what it is, although I have had it in the afternoon too during meetings my employer has frequently, also right after I have woke up before. The seizure I had in March was a tonic/clonic. I haven't had any more tonic/clonic but there have been several times where I feel like something almost happened. I lost all color in my face and felt very weird. My diagnosis process included an MRI, 2 EEG's, CT Scan, & also all sorts of cardiac things just to check that out.

They put me on Dilantin first but I put on at least 10 pounds within the first few weeks. I haven't had any more weight gain or problems being on carbetrol though.

Do either of you have any muscel twitches?
 
Nice to meet you too

I occasionally have muscle twitches but more often the twitch isn't really in the muscle but in my brain, like I'll reach for something then stop & think do I need this then decide yes then decide no. Finally I do whatever needs to be done but it's more like my thoughts are a music record that has a scratch in it.

Also realize that just because you're getting certain effects in the afternoon or eve doesn't mean that they're not side-effects (doesn't mean they are either really).

I was on dilantin as a kid and didn't have any weight problems but was really spaced out & could sleep like a log.
 
After my seizure, whether it be from the seizure or the meds, my memory was terrible. It really still isn't great, but has got a lot better. One thing I really have got bad about is making quick decisions for whatever reason. Any more my fiance literally almost has to make some decisions for me when I can't get it together and decide (i.e. what to eat at a resturaunt)

As far as the medicine making me sleep, I def did a lot of sleeping and was very out of it when I was just getting used to it. Now I don't really notice it making me drowsy, but I can definately tell when I forget my dose before bed because I don't sleep as well and I dream all night long. (I try not to forget my meds... but it has happened along the way trying to get a schedule)
 
I had muscle twitching when I went off of trileptal. It was mostly in my legs. I think the only person who could notice them was me, or maybe if someone put their hands on my legs and felt for it. It was very uncomfortable and distracting.

I gained weight on some of the drugs I've been on, too. Hard to get back off!
 
So what do you guys think the odds are of having one tonic/clonic and never having another again?? (Wincing as I ask)

I am terrified of having another... My fiance' witnessed the last & he did not do well with it. He didn't do well with it at all. Actually I am not sure what was worse to deal with, learning I had epilepsy.. or his anxiety. He is still suffering & it has been 7 months now. :sad:
 
One recent study that followed patients for an average of 8 years found that only 33 percent of people have a second seizure within 4 years after an initial seizure. People who did not have a second seizure within that time remained seizure-free for the rest of the study. For people who did have a second seizure, the risk of a third seizure was about 73 percent on average by the end of 4 years.
Click to expand...

However... if you had an abnormal EEG, and it showed a generalized spike-and-wave pattern, the risk of recurrence goes up. Similarly if you have a sibling with seizure history.
 
Thanks Nakamova, that makes me feel somewhat better. Neither Epilepsy or any seizure history run in my family so that's a plus. Both of my EEG's showed abnormal activity though.

My worst thing now is that sometimes I feel "weird" and I don't know for sure what it is. Ughh, I guess it is just the fear of the unknown.
 
You must log in or register to reply here.
Back
Top Bottom