Hello to all, this is my first time posting. I am 34 years old and have had a seizure problem since I was 13, I had a seizure just after I was put on an antibiotic, I think arithromiason (poor spelling) I have only had seizures when I have been sleeping and since I was 13 they were basically under control I have always been on dilantin with very little side effects. I was seizure free for more then a year and my dr recommended weining off the meds. I was on 400mg then to 300 mg after a month no problem after another month went to 200mg and had a seizure while sleeping, very mild then was ok until I went down to 100mg after having a very stressful day at work and not sleeping the prevoius night I had 3 seizures in one night 2 pretty bad and 1 mild, i was still able to work with not much of a problem except sore tongue and slight head ache. I went back up to 400mg and have no problems. I am currently trying to get off dilantin and go to lamictal right now i am taking the dilantin and ramping up the lamictal. Anybody go through the same thing and how is the lamictal

Hi Corbo,

My son Jake's been off Dilantin for a few weeks now. Glad to see it go. Lots of issues for him, including toxic numbers a couple of different times.

Lamictal is supposed to be a really good drug for control. BUT!!! There is a really nasty rash (can be life threatening if not treated) that can show up in as many as 10% of users. This rash looks like measles and is called Steven Johnsons Syndrome.

Jake is going on it now and the Dr started him at very, very low levels (2 ml grams bid - he's 20 mths) and has been increasing it by about 5% each week. It will be the middle of Sept before he reaches theraputic range.

From what his neuro tells us - slow going on is the key! This allows the body to get adjusted to it over time. He said that this in not a drug that they EVER "Ramp" up quickly because of the rash. It's more likely to show up the faster you go and can take as long as 10 weeks before showing signs.

There are a couple of posts on this site about it in futher detail. Sorry, I can't give you detail on how it makes you feel. It's still a guessing game since Jake can't speak yet.

Good luck - and hugs for your search!

Lisa and Jake

Hi LisaGuthrie,

Thanks for your reply, I will call my dr about ramping up a the lamictal a little slower. I have been on dilantin for 20 years with no elevated levels whats an extra couple of months...

It must be very difficult for your son being so young I have two children myself (girl and boy 3 & 2) I am always concerned about them.

best of luck to you guys

Dan

Hi Dan,

Yes, call your dr to slow down the pace. This rash is serious business. If you are in question as to whether you have it or not, from what I've heard from other users is to get into a hot bath or shower. If it's "The Rash" it will spread very quickly from the heat of the water.

It is hard having a little guy go thru this. I would trade places in a heart beat. We still don't have complete control and he's on his 4th med since 10/26 last year. But, he is a true wonder. He takes it all so well. But then again I guess he doesn't know anything different. Seeing him toxic was the worst - the Dilantin really slowed him down developmentally. Without being able to speak I hate to think what side effects he may have been having with vision, coordination - etc.

Good luck on the Lamictal. So far so good for us! Hope it bring you help!

Lisa and Jake

Hello!

Welcome to the board...I was on Dilantin in the beginning and couldn't get used to it...felt like I was always "dragging"...switched to the Lamictal and loved it, although I developed a rash with it and had to switch to something else. Hopefully that won't be the case with you, I will keep my fingers crossed for you!

Amy http://www.healthboards.com/ubb/smile.gif

Hi Amy,

How are you feeling of late? Better then last week I'm hoping!

Things are going well, all things considered, on our home front. The kids are back in school. Jenny really seems to be loving it (so far).

We're in the process of moving our corporate office and I wont have access to my PC off and on for the next few days. Can't wait to get this done and over - what a mess...

Have a great day sweetie, tell the other girls I said hello if I don't get back!

(((Hugs)))

Lisa

Hi Amy,

Thank you for replying...

When you switched to the Lamictal did you start at a low dosage?

I am starting at 50mg once a day for two weeks
then 50 mg twice a day for two weeks
then up to 100 mg twice a day (hoping this will be enough) then I will ween off the dilantin...

Anybody else have luck or no luck with this??

Thanks,

Dan

Hi Dan,
I have been on Lamictal for almost a year now. I take it in combination with Carbatrol, although my Doc wants me to be on just Lamictal eventually. He did tell me about the dangers of getting the fatal rash, and was very conservative in getting me on it...slowly increasing it. I now take 300mg Carbatrol in AM, and 400mg in PM....and 200mg Lamictal in AM and 300mg in PM. As far as how I feel...like a million bucks compared to when I took Dilantin. Lowering the Carbatrol is helpful too. I really think Lamictal is a miracle drug...at least for me. Good luck with it. Be well, Kathy

Hi Kathy,

Thanks for the in put. I am so hoping that this one works for Jake. I don't want to have another failed med on the list. I've started research on the Ketoginic Diet just in case.

He's on the Lamictol as an add on to Trileptal. He's in a FDA study for the Trileptal and we can't increase it anymore without breaking protacal, the study ends in Dec. So we have a little time yet to wait it out and see.

I hope your right and this is the Miracle Drug for him as well http://www.healthboards.com/ubb/smile.gif

Lisa and Jake

Hi Kathy,
I do hope this lamictal will do the trick..the way I am ramping up is the way my doc feels will be safe..I hope he is right.

I hope you are able to drop the Carbatrol and be only on the lamictal. As for the side effects of dilantin, for me I have been on this for 21 years, my gums are fine, my memory I feel has not been effected and my energy level is as good as anybody. I have my own security company and work 60-80 hrs every week installing also 2 kids (can't take credit for the kids my wife has her hands full)..

However it is all relative I have no base line I have been on this for so long. A far as the long term effects, who knows????

I really do apprieciate your response. This board has been great, I was raised never to mention my situation to anybody, ever. It feels good to be able to chat about it. Thanks.

Dan

Hi guys,

Keep your fingers crossed for us. I was looking at Jake's med schedule and he has his biggest jump in dosage this weekend. He will go up 6 full ccs on Sunday. If we're going to see this rash it will be in the next 2 weeks I'm thinking.

So far it seems great. This is his cycle weekend - he has clusters every 10 to 15 days. And we haven't seen any eye twitching YET! It's like an aura I guess, he gets this little tick a couple of days before he goes into a cluster.

Dan, I hate that you couldn't talk about this growing up. I don't want that for Jake. I want him to understand it for what it is a medical condition that he's unable to control for himself.

Glad you found us! Everyone here's been great in helping me understand the human side of E. Dr's can tell you all day long what they "think" but, I wanted to learn from the source.

Congratulations on your business. Can't say that I would like the hours though http://www.healthboards.com/ubb/wink.gif

Keep us posted on your progress!

Lisa and Jake