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Old 11-17-2008, 12:45 PM
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Question Lucii - does anyone take lamictal??


hi my names lucy.. im 19 years old.. i have only had 2 seizures and my last one was a year ago.. however im gettin every side effect goin with my tablets.. my doctor wont change them though because they are working.. but event my joints are becomin affected now.. i cant walk without my ankles burnin n i cant lift things at work because my wrists twinge.. in my side effects it says painful joints.. i also get ulcers in my mouth and i cant eat for days.. is anyone else takin lamictal?? if so please wb xxx
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Old 11-17-2008, 01:13 PM
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Hi Lucy

I take Lamictal and have done for about 8years, I take 225mg twice a day. I am very lucky in that I do not really suffer from bad side effects, I get tired mid afternoon and a bit of dizziness now and again but nothing severe.

What dosage are you on?
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Old 11-17-2008, 01:15 PM
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im onli on 50mg twice a day.. ive been on them a year now.. do u suffer from memory loss too?? And i too suffer from dizzyness and tiredness..
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Old 11-17-2008, 01:24 PM
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I don't really get memory loss, but I sometimes get stumped for words when I am put under pressure.

I seem to be tolerant to quite a high dose of Lamictal, I am one of the lucky ones. Have you spoken to your neurologist about your side effects?
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Old 11-17-2008, 01:27 PM
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yea but he said he doesnt want to change them because they are working.. i must be really dependant on them though because if i dont take them i get really agitated and twitchy.. if i have an alcoholic drink i get really bad headaches so i dont drink anymore.. im on a lower dosage than you i bet you think im jus bein stupid.
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Old 11-17-2008, 01:34 PM
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Hey no way man, no-one on here is stoopid. Everybody reacts differently to there meds it doesn't depend on the dosage.

Though I am a bit naughty as I drink alcohol on my meds and I pay for it the next day, but as I have seizures everyday anyway it makes no difference to me.

I always notice if I don't take my meds, so it just shows they are trying to do there job.

Sorry to hear you get such bad side effects, but if you really are uncomfortable living with them then I am sure your doctor should listen to you
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Old 11-17-2008, 01:41 PM
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Thanks hun.. im not due to see him till october though and i dont know how to get in touch with him.. besides in a year there on about weavin me off my medication as my epilepsy is not severe.. it does affect my uni though as i was wantin to learn how to drive.. no point just in case i have a seizure behind the wheel its not fair on others is it?? so do u work then if your seizures are like everyday?
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Old 11-17-2008, 01:50 PM
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Yes, I work, I have a full time high pressure job, which this week has changed to a management position (stress and E go well together hehe) I had a drop seizure at work about 3 weeks ago but luckily nobody saw me. So I just picked myself up and brushed myself off and carried on as if nothing had happened. Away from this forum I do not really talk about my E, so I keep it locked in the vault at work.

I have several absence seizures everyday, but I am used to them. Last night I had a seizure of some description in bed, where my body went rigid from my head to my toes, but I was conscious the whole time. hmmm.

I know what its like watching everyone learn to drive around you when you're restricted (it really suxass), I've been there, I'm still there.
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Old 11-17-2008, 02:00 PM
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Even though ive only had two seizures.. neither one has been one where i can jus get up ive ad to be in hospital both times.. i do realise epilepsy effects people in different ways.. like some people get warnings and know when they are going to happen but if your like me i dont get any warning so i dont know when one is goin to come.. this makes me worry tho sumtyms like when i become really dizzy or agitated i scare myself into thinkin im goin to have a seizure with no1 around me.. will i come round??

managers at work say i shouldnt go on ladders etc but if im by myself i find it petty that i have to get sumbody to get one item down for me when its a 2 minute job n i can do it myself so i use them anyways..

this is a personal question but do you have a partner and if yer how do they cope with your epilepsy?
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Old 11-17-2008, 02:13 PM
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I am currently single, but my last BF was brilliant with my epilepsy, he knew before we went out for the first time. Our first date was a dream for me as he has a motorbike and I am not allowed my licence, I would be a harley chick through my own choice. My seizures truly didn't bother him at all, unfortunately things didn't work out, tho I wish they did, I haven't given up :o)

I don't have t/c's (grand mal) seizures. So I do not know anything about them.

The absences I have last about 30 seconds and I have about 50 a day, I completely lose consciousness and they can be embarrassing. I sometimes get larger seizures in bed and I have had 3 drop seizures at work, 2 have been on the stairs. Due to nearly no one knowing about me E at work I have to keep myself safe, I work for a large manufacturing company that takes safety very seriously, so I am constantly watching for dangers. I also have no idea when a seizure is going to happen. 1 minute I can be walking along quite happily the next I am laying face first on the stairs.
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Old 11-17-2008, 02:16 PM
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Hi Lucii! Welcome to CWE. As you can see, a friendly group. Hmmmm, if I were you, I'd demand to see my neurologist. The side effects aren't doing you any good. I understand that he doesn't want to change your meds because they're obviously working, but there has to be a way to cut back the side effects. Anyway, feel free to wander the site, ask questions, chime in, and vent in the padded room when necessary.
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Old 11-17-2008, 03:30 PM
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Sorry but it makes no sense to trade one problem for another. You need to find something that is going to work with you better. From my understanding, the dose you are taking isn't even a therapeutic dose. I could be wrong. Perhaps something less damaging would help. Have you considered making nutritional changes? You might find that you can reduce your meds with a supportive doctor, to the point of not needing them.. Just a thought.
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Old 11-21-2008, 07:08 AM
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Hi Lucii, welcome to the forum.

Doctors generally won't even consider stopping an anti-epileptic drug until seizures have been controlled for over two years (see Stopping drugs when seizures have been controlled for years). You can increase your chances with this by getting proactive (I highly recommend neurofeedback).

If you get a skin rash with Lamictal, notify your neurologist at once - it can lead to a deadly condition called Stevens-Johnson syndrome.
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Old 11-21-2008, 07:53 AM
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I'd switch neurologists. Lamictal was so painful for me that I had to sleep in a chair - it hurt to bad to lay down and was difficult to get back up

if you aren't on government medical assistance, you can maybe encourage him to switch by telling him "i'm in so much pain from this medicine that I find myself skipping doses just so I can perform my daily tasks." if you are on government assistance, don't say that because it will take away your benefits

Also look into other medicines and tell him what you want to try. Your best bet would probably be to bring up Keppra or tegretol.
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Old 11-21-2008, 05:09 PM
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I had any problems with Lamictal. I'm currently taking 300MG twice daily. Sorry to hear some people are having some problems with it.
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Old 11-21-2008, 05:17 PM
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My granddaughter takes Lamictal, 25 mg. 2x per day. When she was on a higher dose, we noticed some behavior problems. The doctor we had at the time didn't want to lower her dosage because she wasn't having any seizures and he told us that none of his other patients had this side effect. I immediately found another doctor and discussed my concerns with her. She reduced her dosage and the behavior problems decreased and she still has been seizure free on this lower dosage. I would suggest that you look for a doctor that will listen to you.
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Old 11-22-2008, 02:29 AM
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I'm just now starting on Lamictal, so I haven't
really gotten anywhere just yet, but so far, it's
too early for me to post anything on this yet!
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Old 11-22-2008, 08:55 PM
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Our daughter was diagnosed at 11 yrs old jsut about 17 months ago. She has been on Lamictal alone or as part of a cocktail for a significant amount of that time. She currently takes 425 mg as part of a cocktail, with no side affects. She was on a higher dose with vision issues a couple months back. I did learn of several patients having the symptoms you have shared about..
I wish some of these Dr would hear the patients out on issues like this more often. I am too new to all this to offer much help. I do wish you much luck though...
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Old 11-22-2008, 09:55 PM
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My son takes 150 2 x a day lamctal. HE does well on it. It did take several months to get past the tiredness and what he called... getting used to it. He says its fine now.
My daughter just started lamictal a few weeks ago and is only on 75mg a day. SHe had a rash Monday night and I rushed her to the ER. They said she was fine but to watch her. It seemed to go away the next day and she is now on 50 mg 2 times a day. Her myoclonics seemd to half, but are still present. THey want her on 75 mg 2 x a day, I think. We shall see with her. I hear it 6 mos before you can stop worrying about the rash. I also was told lamictal works well with genetic E.

I wish you well.

joan*
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Old 11-24-2008, 09:35 PM
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I've had excellent control with a higher dosage of Lamictal. I only take brand name.

I was wondering if you took generic or brand name. Some people claim they get break through seizures when switching from generic to brand; brand to generic; or from one generic company to another generic company.

Maybe you're eligible for a seizure assistance dog. They claim dogs and some cats are able to detect seizures ahead of time. I'm not sure if they smell something different or if they notice different mannerisms or behavior prior to a seizure. It might be something you'd want to look into. If hearing impaired people can have a hearing dog, we should be able to find a seizure assistance dog.

We have other posts about them:

Sz alert dogs
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