Hi from England!

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Katie123

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Hello everyone, I'm new here! I just got diagnosed last month, and as no one I know has epilepsy I'd really like to get to know other people who can answer my questions and stuff without feeling awkward or unsure. I'm 17 and I've got JME (at least they think I do, but knowing my doctors they might change their minds next week!), and I'm a bit nervous about facing a lifetime of dealing with it. I'm pretty ok about it, but it's been really reassuring reading stories of adults with epilepsy and how they deal with it, makes me feel a lot better!
I'm currently on lamotrigine which doesn't appear to be doing much good. :( I get absence seizures all the time which is really embarassing and unsettling because when I'm talking to people I just blank out and have no idea what's going on! And I get these twitches in my limbs and fingers all the time, which makes me feel really clumsy and awkward. It's quite nice to have an explanation for these things, as they've been happening to me for years, but at the same time it's bit scary, as I'm worried that it will get worse. I've never had a big seizure, so that's a worry of mine.
The meds are also making me really tired, and my headaches are getting even worse, is that common?
Sorry for writing so much! I'm really looking forward to getting to know other people. :)
 
Hi Katie123, welcome to CWE!

You haven't written too much! (If you check out the CWE archives, you'll see there's no length limit :)) I'm sorry the Lamictal is being problematic. Has it helped at all -- are your seizures reduced even slightly? I got the "Lamictal headache" when I first went on Lamictal, but it went away after a few months. I found that Tylenol, (acetaminophin) worked best on the headaches. Some of my other side effects (restless sleep, vivd nightmares, hair falling out) also went away after a few months.

Definitely keep notes on your seizures and on any med side effects -- if things aren't getting better, and are in fact getting worse, then contact your neurologist to talk about other treatment options. You might ask about taking a dietary approach -- the Modified Atkins Diet (MAD) has had a fair amount of success in treating absence seizures. (You can search for posts on MAD and other topics using the "Search" tab in the bar at the top).

Best,
Nakamova
 
Welcome Kate

I was born with my seizures (also partials) and have also had some pretty embarrassing moments. It's true you might eventually have a convulsive seizure but if it hasn't happened yet there's really no reason to worry about something that might not happen at all.

I've also been put on lamotrigine, very recently in fact & my seizures actually got worse. I'm going to stay on it 1 more week & ween myself off of it if I don't see results. All anti-epileptic drugs have the side-effects of clumsiness, forgetfulness, fatigue etc. I'd make sure you've stayed on it for a while because often your body just needs to get used to the drug for the side-effects to lessen. If not, then it's a matter of finding a drug that enhances your life rather than making things worse.
 
Hi Katie,

hello, and how do you do? It's very nice to meet you!

There are quite a number of us on lamotrigine (the generic) or Lamictal (the brand). I happen to be on Lamictal, due to the fact that my body can't process generic meds very well, with the exception of a few. (There's a variation in generics--between 80% to 120% of what the brand medication has for the.....required "recipe" (not the word I'm looking for, I've lost it somewhere)....

The potency is not the same because the generic manufacturer doesn't make it quite the same, if that makes any sense. The guarantee that there is no variation in the patented "recipe" from the brand name is not there in a generic. OK, I sort of got that out.........

It's possible that you might need to switch to the brand name, if you find that after a period of time that you're having some sort of success. If not, you may find that you need to switch to a completely different med totally.

There are plenty of other members whom I'm sure you can relate to, and we have quite a few in England for that matter. :) There's teenagers around as well. :)

Feel free to poke around in all of the nooks and crannies, I'm sure that you're going to find all sorts of good information to be had. Then feel free to ask questions to your hearts' content. We'll be happy to answer them for you, if we can. If we can't, we'll point you in the right direction to get the answer.

Take care!!

Meetz
:rock:
 
Since I was first diagnosed with epilepsy about 8 years ago I've been on so many different meds and dosages that I've lost count of. It's taken a good while now but my seizures are getting better. I'm still having them, on average 5 or so a month that usually aren't that bad at all. Which is great because when I first was diagnosed with epilepsy I would have at least 5 a week but usually more and they were bad ones.

After a have a seizure I will usually get a headache, sometimes little ones and sometimes full on migraines that will last for hours. I don't know if it could be a side effect of the medicine or as for me they are an after effect of a seizure.

As Nakamova said, keep track of how things are going on with you - a seizure diary.

The types of seizures that you are having are similar to mine. I'll blank out, drool, slur my speach, do goofy things or when I'm talking I'll know what I'm saying but it isn't what is actually coming out of my mouth. Don't get embarrassed or upset about it, I know that's hard to do. These things happen to alot of us so just know you're not the only one out there like that.

As far as having a big seizure, don't worry about something that might never happen. I tend to try to look at things in a positive way all the time. If it happens then it happens but I'm not going to pull my hair out waiting for it to happen.
 
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Wow, thank you everyone for such lovely responses! :) It's certainly nice to hear that the fatigue especially is common- it's bothering me slightly, but I'd rather have the absences gone and feel tired than the other way around. I'll start that seizure diary too, it will be useful for my next meeting with the doctors.
Thanks so much, you're all very welcoming. :)
 
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