Lamotrigine/Lamictal

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JaneC

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My daughter had her long-awaited appointment with a neurologist today and he has decided to try her on the above. Naturally, I find the possible side-effects scary as hell. Anybody care to share their experiences of this drug? Thanks so much.
 
me ? was on 200 mg and it kept me awake too much now i am down to 50mg a day but will probably stop it because i am happy with tegretol and nothing has changed from lamotrigine except lack of sleep and very dry mouth
 
I tried it in April of 2011 and within days, I was having an allergic reaction. My glands in my neck got swollen and sore. I was taken off of it after two weeks and everything went back to normal. I am allergic to sulfa medications, but I did ask the drs nurse prior to taking this, if that was a concern, since some others told me they thought the lamictal and sulfa was connected, but she said no. Then starting it, I started to feel different, which lead to feeling even worse. For me, it didnt work. But that doesnt mean it wont work for your daughter.
 
Thanks everybody, especially Nakamova for the links. I appreciate we will need to wait and see how she reacts as an individual. There's lots that concerns me - eg fatigue and possible concentration problems when she has an important year of school ahead. I suppose there's not point in worrying until we see what happens, but I'm finding it hard.
 
Hi Jane,
Rash the first day, swollen eyes and lips; was taken off until all that cleared, then back on at half the dose to start (12.5mgx2). Over the past 10.5 months I have experienced what my E nurse calls the 'honeymoon phase,' which is that it worked great in the beginning as it lessened my partials quite well, but then they came back after my first stressful event and now other than a few good stretches I'm back where I was before I started. I have also had two grand mals on it (one in conjunction with tegretol and topamax and one just with tegretol).
One of the main side effects for me is my hair, within a month of starting it my hair (very long) turned into a rat's nest every morning, washed or not, and it splits, breaks, and every day when I comb it out I have at least one handful of it in the sink. I also started gaining weight when the dose was doubled after the first grand mal.
So yeah, I'm not the biggest advocate, however that doesn't mean the 'phase' happens to everyone. Like Nak said she's done well with it, as have others. I've also been going through a massive life-changing event most of this year so I know for a fact the stress is counteracting the meds as well.
 
I've tolerated it fine. The few side effects i had went away after 3 months. One I still enjoy is the vivid dreams- I like those, lol.
 
For me it was added as a third medication and it really helped a lot. I got a super itchy scalp for about a month after I first started taking it, but that went away. The only major side effect I have now is that if I take my meds without enough food I get double vision.
 
Thanks for your input ladies, sounds like a very mixed bag of reactions, which I know is to be expected. Just wish we could get on with it now the decision has been made but still waiting for the meds. The wheels of our NHS grind exceedingly slow.

The good news is my daughter seems about more like herself, less anxious, just for getting the neurology appointment out of the way and a plan agreed. Hope everybody is well today x
 
this is a drug i wanted to try! i still do becuse tegretol and keppra make me soooo tired i would love to feel abit of energy again... but for some reason they wont let me on it!

all meds are diff for everyone, just see how it goes, make her keep a dairy of how she feels each day! its the best way to remember!
 
My daughter takes 200 mg of lamictal. She has slight dizziness upon standing but she tells me it has lessened a lot from when she first started the med. she is not worried by it. She has small acne near the side of her chin but she is not bothered by it. I was worried about any affects it may have on Paige with her thinking. She is starting high school in the fall. She has always been a good student and did not want to see her struggle. I don't know how old your daughter is but one thing I did at the end of last year shortly after diagnosis was to set up a 504 plan. This will provide Paige the supports she may need - elevator use if she's dizzy, extra time to complete work since bedtime is a non-negotiable and if she is not done she will not stay up to get it done, staff trained... Lots more in the plan. I am a teacher, too, so was able to advocate for her. It's important to have the 504 in place sooner rather than later. Message me if you have questions.
 
Thanks for the diary tip Hand of Blood. I'm sorry they won't let you have the drug you want - maybe it isn't suitable for the type of epilepsy you have? From what I've read it might still make you tired anyway.

Chop, thanks, unfortunately we're in Scotland. I have been researching on the internet what the school might have to do to help my daughter without any great success - it's holiday here at the moment but I will be in touch with them as soon as they go back.

It's a big year for Rosie too, the one where her exams will decide her options as far as university goes, so possible concentration problems etc are a big concern.

I hope everything works out well when your daughter goes to high school x
 
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