Lamictal / Lamotrigine experience?

[greggipod]

Hello everyone!

I just got the green light from my neurologist to start the transition to my 4th seizure med, Lamictal, tomorrow after having been on Dilantin, Keppra, and Topamax.

I am curious to hear from others who've taken Lamictal (for seizure OR bipolar II) about your experiences--starting dosing, side effects, successes, drawbacks, and/or anything else you'd like to add.

Thanks for your help,
Greg

 

[momof3boys]

My dr tried me on Lamictal in April of 2011. I was on it for two weeks and had to be taken off of it due to an allergic reaction. I started to get sores around my jaw and chin area, which got worse as the dose got higher, they started to crack open and bleed. Then came the glands in my neck area, where swelled up and got so tender. My dr thought it was a sinus infection and told me to go to my primary care dr. So I did and they ran tests, said I had no infection and once they found out I had started the Lamictal, the drs said I was having a allergic reaction and to contact my neurologist ASAP. My neurologist took me off of it and within days I was so much better. But just because it didnt work for me, doesnt mean it wont work for you! Good Luck!

 

[matlock]

Hi Greg,
I just started on it myself last week, I'm at 25mgs in the morning and at night thus far, on my way up to 50mg both times (100mg/day.) I don't know how that stacks up as far as the dosage amount. I really don't have anything else to compare it to but so far I have been getting really tired about an hour and a half after taking it; work was kind of tough on account of it but I didn't get busted zonking out at my desk luckily. But no rashes or any of the worst-case scenario situations I've been seeing.
I hope this helps you out a little - I guess looking over it what I can't really tell you is if it's going to give me good control since it's not like I have had very frequent occurances in the first place.

Matt

 

[Nakamova]

I'm on a relatively small dose of Lamictal (150mg), but it has controlled my seizures for almost 4 years now (knock on wood). No problems tapering on to it. I had some side effects at first that went away after a few months: it gave me a speedy, extra-perky feeling -- not necessarily a bad thing during the day, but at night it made for really poor restless sleep with vivid dreams/nightmares. My hair fell out at first, and I had some very mild but persistent headaches. Those side effects disappeared; the ones that stuck around: Very dry eyes and mouth, especially overnight and first thing in the morning; some acne on my chin; and blurry vision on and off throughout the day (I do a lot of squinting now at middle distance stuff).

Here's a great site for Lamictal comments and ratings. It includes info about how long someone has been on it and their dose, in addition to comments: http://www.askapatient.com/viewrating.asp?drug=20241&name=lamictal

 

[Endless]

Hi, Greg,

Everybody is different in how they react (or don't react) to Lamictal. I like it a lot better than Keppra, Topamax, and Trileptal. I had tried those in the past.

I had a rash with Lamictal, but it was treated and watched by a dermatologist and it went away. I have severe insomnia on Lamictal, and my hair has slowly thinned out until I have a lot less of it. I use sleeping pills and tons of product in my hair to overcome those two.

I've found that for me, Lamictal doesn't mess with my moods or my ability to think as much as the other AEDs did. My moods are pretty even, and my ability to think, remember, and reason is not as horrible as it was, especially on Topamax. Topamax was awful for me as was Trileptal. Serious confusion and brain-fog, and depression. I won't go back to Topamax, ever. I was told that for people who need a really sharp mind for work or other reasons Lamictal is the drug of choice.

It took me forever to ramp up on Lamictal. For that reason some people are kept on their old AED while they get up to their full lamictal dose. I tend to react to a lot of drugs so we took it really slow. I increased it about 25mg every 2 weeks. I'm on 350mg now and my seizures were under control, until gabapentin and diamox were removed. Seizures again. I think the gabapentin and/or Diamox were helping with seizure control. Also some of the confusion is back - I have no idea why.

Another thing I like about the lamictal is that it is long-acting. It has a long half-life. That means I can either be late or miss a dose and not have as extreme a reaction as I did on some of the other drugs. Some other people, though, can't be late with their lamictal or it's bad news.

I'm hoping Lamictal will be the "magic" drug for you. Keep us posted, okay?

 

[qtowngirl]

Hey Greg!
My experience with it has been pretty good so far (6 mos.) but was a bit of a rough start. Started at 25mg and after one day had the rash, woke up with it on my arms and some on my face and chest, and my eyelids were swollen. Doc really resisted the idea that it was the meds after just one dose and tried suggesting I had possibly eaten something bad, etc... but I knew I hadn't and hadn't done anything out of the ordinary... other than start an AED!! So she took me off them for three days until I healed, then tried again. And it happened again. This time as it proved I was right (but really wanted to give this drug a try, had already tried carbamazepine and topamax and from what she'd told me about it it sounded likeable), she kept me on it but only at 12.5mg (25mg/day) for three weeks, then started the normal ramp-up process.
And it's been working great! Rash didn't come back, partials have been cut down considerably (except in times of high stress), and the only side effect I can honestly say I've noticed is with my hair. I'm not losing it but it seems to be reacting- tangles to the point that it's so knotted I have to break it off and pull the knots out, no amount of conditioner helps. My only silver lining is that I have a lot of hair so it's not noticeable, it is however painful and time-consuming to brush. But... whatever!!
As Endless said too, a bit of a mood helper, can help keep things on an even keel. Though I still get depressed it's not as bad as before, and my neuro had even said when suggesting it that as well as a good seizure drug it works as a mood stabilizer. Hence the bi-polar med I guess.
GOOD LUCK TO YOU... and yeah keep us posted. Being a drug guinea pig sure ain't fun and as lamictal is a goodie I'll keep my fingers crossed for you!!

 

[greggipod]

Thank you all so much for your stories!

So far I've taken my first two 25mg doses with no side effects so far (YA BETTER KNOCK KNOCK KNOCK ON WOOD!!!) I will continue 25mg twice daily for 2 weeks, then dose up to 50mg for 2 weeks while on my full dose of Topamax before I visit my neuro to discuss further up dosing/weaning.

I REALLY want Lamictal to work as it will be my 4th AED in the last year after Dilantin, Keppra, and Topamax. Also, I'm currently being treated for MDD and GAD, but I have an overwhelming feeling that I more closely fall into the Bipolar II category--something that I will be discussing with my psychiatrist next week, so I'm hopeful that Lamictal wil be helpful as a mood stabilizer for me as well.

Thanks again for all your well-wishes and support!!!

XOXO
Greg

 

[alivenwell]

I'm on 400mg. It was gradually tapered up. I've had excellent seizure control with Lamictal. I take brand name only. It does make a difference.

 

[Electra]

I take Lamotrigne and just started 150mg X2 per day and find it good. No big seizures. My Neuro believes it's the best drug to take. Seizures seem to be controlled. Fingers crossed.

 

[lsuder0184]

Hey,

I've been taking lamictal for about 12 years. Originally it was as polytherapy (I think that is what it is called) as a booster for epilim 1000mg per day (200mg lamictal) now I am only on 200mg epilim and up to 300mg lamictal. I've never had a problem with lamictal, only epilim. I wouldn't want to change to any other med! Having said that, what I have read about lamictal is that it is unpredictable - some people have lots of problems, some have none at all!