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Lamictal
Thu, 08/23/2007 - 10:08Hi to all,
I could really do with some advice by any fellow lamictal or JME sufferers! I have had JME for about 15 years now and only once got my seizures under control for about 2 years just after my first diagnosis. I started off with just the myoclonic jerks which then went into Grand Mal. I used to have about 2 a year maximum, even when I started working overseas as a Holiday Rep with such a busy work life, social life and too much drinking and no increase in seizures. I was on Tegretol for about 10 years however never really got rid of the myoclonic jerks. Since the JME was re-diagnoised my neuro in Spain suggested moving to Lamictal which I did - however, at 33 I was still leading a heavy social life and working long hours and every 4 months or so now I have a Grand Mal even though the Myoclonics have gone. I have always had the attitude of à will live my life as I choose and not give up things´therefore never really gave up the drink just seemed to cut back more each year. However, the last Grand Mal I had in July has really knocked me for six and knocked my confidence. After going to the neuro he has now increased my Lamictal to 150g twice a day (total of 300mg) but since then I seem to have ´spells´during the morning and evening and I am not sure whether I am causing them by consistent worrying about having a fit on my own or whether the increase in Lamictal is causing different seizures. My neuro says that it is rare for seizure activity to change unless something major has changed ie brain scars, etc. I have stopped drinking, am eating properly and getting 7 to 8 hours sleep every night and feel worst than I did when I was having a few drinks a couple of times a week and also some late nights! Anyone had any experiences like this! So frustrated as since my husband works nights - every time I am on my own I seem to panic and then think I am having these seizures - then ringing my husband every other night for him to come home and watch me - obviously he can´t keep leaving work for me. He thinks I am paranoid and making myself ill which may be he is right as even though my fits have ALWAYS been the morning I am now paranoid they will appear at night and other times of the day. SOME ADVICE/HELP/EXPERIENCES WOULD REALLY HELP RIGHT NOW SO PLEASE, PLEASE, PLEASE ANSWER IF YOU CAN.
GOOD LUCK TO ALL WITH É !
Comments
Re: Lamictal
Submitted by Colina on Thu, 2007-08-23 - 12:35
Hi Jo Jo. I also take lamictal but with keppra as well so i'm not sure I can help you out with that, except to say that usualy an increase or addition is needed when you have break through seizures. I did however want to respond to a couple of things that may help. "My nuero says it is rare for seizure activity to change unless something major has changed ie brain scars etc." A couple of years ago I was refered to a wonderful epiletologist who has changed things for me in a great way, I have total confindence in him. He once told me, after I stated that they were just little seizures, just as our brains learn by repetition so do seizures. Meaning that by not having all seizures controled other parts of our brain will learn how to seize. Not long after I had a veeg and it showed that now not only are my seizures comming from the left, they are now comming from the right as well. My right temporal lobe learned from my left how to seize. Has your nuero ever pin pointed where your seizures are comming from? Calling husband to come home because you are scared? I have been there too and it was hard, he was not able to leave work when I needed him and that was often. I had 3 little ones at home that I was worried about too. You are not paranoid but afraid and in all fairness it is very difficult for those who do not have seizures to understand them. From my 26 years of experience with many meds and doctors my advice would be to find an epiletologist and get right to the bottom of this. Hope this helps a bit and that you can find some answers. Good luck and smiles your way.
Re: Lamictal
Submitted by scorpio on Thu, 2007-08-23 - 17:59
What are these ‘spells’ you say you are having? Lamictal can sometimes cause giddiness. I have experienced this myself though only when I was taking 400mg/d: now taking 200mg/d this no longer happens. The giddiness seemed to occur in the afternoon/evening so tiredness may have been a factor (overly twisting the neck – turning the neck round - appeared to trigger it). Certainly, a night's sleep was the only cure for it.
Chris
Re:
Submitted by Seruzies on Tue, 2007-08-28 - 15:11
Lamictal is the first anti-epileptic drug I have taken where I feel physical side effects. I actually feel like I have a "buzz" if you get my meaning. I have called my Neuro about it, but he says it's normal, and that I should adjust to it. It does make me tired too, only taking Dilantin did not. I never felt anything like this taking only Dilantin. I really don't like the "buzz", and if it doesn't get any better, I'm going to ask to be taken off of it. I know there are plenty of other drugs out there to try without the side effects. I would like to know anyone else's reactions to Lamictal.