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Break Through Seizures on Lamictal??
Fri, 06/19/2009 - 19:18Hi everyone. I have several questions and Im very confused right now, maybe someone can shed a light on this situation. Im 24, I had my first grand mal seizure 4 years ago. I was hospitalized because I hit my head and was knocked out for a day straight.. About half a year after, I had another seizure, in my sleep and was taken to the hospital as well. This time a resident neurologist prescribed Lamictal to me. He told me to build up, 25mg, then 50.. etc till I finally reached 100mg tablets, twice a day. Everything was perfect, 2 years I havent had a single seizure..
The Doctor and I have descided to try to lower the medication, or get rid of it completely, since my EEG and MRI's showed no problem, and no-one in my family has ever had seizures.. We began lowering the dose, and as soon as it got to 25mg, twice daily, I had another seizure.. Then we decided to go back to the dose I was taking, and I slowly began building up back to 100mg twice a day.. On my way up I had another seizure.. afterwards I stayed on 100mg twice a day, and everything was fine for about another 6-7 month.
Then I was moved to generic, lamotrigine, and I don't know if it was a coincidence or not, but I had another grand mal seizure.. My doctor moved me to Brand name Lamictal again, and got the autorization from my insurance so I get Lamictal, not generic.. He also bumped up my dosage to 100mg morning, and 150mg at night.
Everything was fine for another 5 months, then last week I had another seizure, right before I was about to go to bed.. I thought it was because I took my Lamictal a few hours later then I usually did. Then 3 days ago, I had another grand mal seizure, this time right after I woke up.. Now Im worried.. I have never had seizure so frequently. This time I was taken to a hospital. They put the EEG on my as soon as I arrived, and did not give me any Lamictal at all. I was on the EEG for 3 days,I was sleep deprived since the hospital kept me awake most of the night + I didnt take any lamictal while I was there, and still didnt have a single seizure.. After 3 days of testing, they said everything is fine and discharged me.
Now I do not understand, does this mean the Lamictal is not working for me anymore, or was this a break through seizure??? (To be honest I was kinda stressed and tired, and lacked some sleep this past week) But since I was on lamictal I though that wouldnt matter.. My neurologist is not telling me anything usefull, just bumped up my dose of Lamictal another 50 mg. Now its 150mg morning, 150mg at night.. I was pushing for 200mg twice a day, but he said they only increase little by litte, since too much of it might also increase seizures. But somehow I find it hard to believe that the extra 50mg will keep me safe.
Also what seemed weird is that, my aura before a seizure, is the same as a side effect of Lamictal.. I get really dizzy moments before a seizure happens..
Did anyone experience anything like this?? Does this mean my body is adapting to Lamictal and reducing it effect.. Im not really comfortable having a seizure every 3-4 months, and then having my dosage bumped up another 50mg.. If everything was fine before, even on 100mg twice a day.. Can someone shine some light on this situation??? I would appreciate it..
Comments
Re: Break Through Seizures on Lamictal??
Submitted by groundshaker on Sat, 2009-11-14 - 00:46
Lamictal flat out did not work for me, and stay away from the generic. My doctor told me that there is a wider potency range for the generic lamital. This medicine is also used for people who are bipolar, I think in that case the generic would be ok, but not for seizure control, you don't want to take any chances even though lamictal is the most expensive drug I've ever been on. They pushed me up to about 1400 mg a day on the lamictal until one day I went blind and lost my balance taking it. They have me on Kepra now and it seems to be doing better. When I was on the lamictal I had dizzy spells every day, I kept the faith every time my doctor raised my dosage, but it just didn't do the trick. The good thing about the drug however, is it does help your mood. When I was on lamictal I was a whole lot more calm and collected, now that I'm off the drug I've noticed a difference in my mood.
I also have one of those doctors that could care less about me if means him running late and not making it to tee time. Bug the piss out of him, until he is forced to deal with you. Those scrubs get paid a whole lot of money to do what they do, so make them pay attention to you. If you don't get results, move on to another doctor. Don't play games, let them know that you want answers.
Good luck to you.
Lamictal flat out did not work for me, and stay away from the generic. My doctor told me that there is a wider potency range for the generic lamital. This medicine is also used for people who are bipolar, I think in that case the generic would be ok, but not for seizure control, you don't want to take any chances even though lamictal is the most expensive drug I've ever been on. They pushed me up to about 1400 mg a day on the lamictal until one day I went blind and lost my balance taking it. They have me on Kepra now and it seems to be doing better. When I was on the lamictal I had dizzy spells every day, I kept the faith every time my doctor raised my dosage, but it just didn't do the trick. The good thing about the drug however, is it does help your mood. When I was on lamictal I was a whole lot more calm and collected, now that I'm off the drug I've noticed a difference in my mood.
I also have one of those doctors that could care less about me if means him running late and not making it to tee time. Bug the piss out of him, until he is forced to deal with you. Those scrubs get paid a whole lot of money to do what they do, so make them pay attention to you. If you don't get results, move on to another doctor. Don't play games, let them know that you want answers.
Good luck to you.
Re: Break Through Seizures on Lamictal??
Submitted by Hotwired05 on Wed, 2011-08-31 - 14:01
Just wanted to post a little update on the progress so far.. not sure if anyone will see it but ok. In 2 years some things changed, Im still on Lamictal and been having a breakthrough regularly every 6 months and they've been kicking up my lamictal dose by 100. Now Im at 400mg twice a day as of 2 days ago. The reason is that before I have this break through seizure, about a week or so before, I start getting these anxiety attacks like I'm about to have a seizure, I get looping thoughts like Im stuck in my head I keep thinking about stupid crap and Im like "
hmm is this right, is this here item the way its supposed to be and doing what it's supposed to and why am i even thinking about this" and then boom it's like a realize something is about to happen and I get a brief anxienty attack I try to sit down and then I reach for this "emergency" med they perscribed called Ativan (Lorazepam) 1mg and said to take it if I feel like Im about to go into a Grand Mal. So I do and I calm down fairly quick.
My brain slows down, I get really happy and also a little sleepy.My doctor said to take Ativan only as needed since it's highly addictive, and once you're addicted you cant get off without having a seizure or two :(
It doesn't happen often after my Lamical dose has been raised UNTIL it's that time again, 6-7 months passed and I have them more and more, at times I had to take 2 pills of Ativan cause one wouldn't do it. I called my doc, he explained that it's probably cause I'm getting older, my metabolism gets stronger and Lamictal become less effective, so they have to raise the dose to find the "sweet spot" I have no side effect to Lamictal at all. Right now they bumped me to 400 twice daily 2 days ago, and just today I had this spell right at work, on tablet of Ativan didnt help, I had to use 2.. and this happened several times..
I though it had something to do with my sleep, but not really.. sometimes these "spells" happen when I got a lot of sleep sometimes not, same with not getting enough sleep, sometimes happens in the office and sometimes doesn't...I am really really confused now, and scared I'm gonna have a seizure on my way home in the train or in the office. The last 2 I had were bad, I fell in the bathroom and hit my eye on the sink and last one I was on treadmill in the gym. I never went back to that gym, I was embarassed.. :( Now, just a thought of having a seizure in public makes me nerveous and uneasy, I'm scared of it actually but not like panic attack scared. A few days from now I have an appointment with my Neuro, should I push them to add another med since lamictal is getting less and less effective, like my body is getting used to it or has a resistance to it now? Or just keep going up on the dose till we can't go anymore??
Also does anyone know, I take syntroid for a thyroid problem, does changing the does of that down and them back up affect AEDs somehow?
Just wanted to post a little update on the progress so far.. not sure if anyone will see it but ok. In 2 years some things changed, Im still on Lamictal and been having a breakthrough regularly every 6 months and they've been kicking up my lamictal dose by 100. Now Im at 400mg twice a day as of 2 days ago. The reason is that before I have this break through seizure, about a week or so before, I start getting these anxiety attacks like I'm about to have a seizure, I get looping thoughts like Im stuck in my head I keep thinking about stupid crap and Im like "
hmm is this right, is this here item the way its supposed to be and doing what it's supposed to and why am i even thinking about this" and then boom it's like a realize something is about to happen and I get a brief anxienty attack I try to sit down and then I reach for this "emergency" med they perscribed called Ativan (Lorazepam) 1mg and said to take it if I feel like Im about to go into a Grand Mal. So I do and I calm down fairly quick.
My brain slows down, I get really happy and also a little sleepy.My doctor said to take Ativan only as needed since it's highly addictive, and once you're addicted you cant get off without having a seizure or two :(
It doesn't happen often after my Lamical dose has been raised UNTIL it's that time again, 6-7 months passed and I have them more and more, at times I had to take 2 pills of Ativan cause one wouldn't do it. I called my doc, he explained that it's probably cause I'm getting older, my metabolism gets stronger and Lamictal become less effective, so they have to raise the dose to find the "sweet spot" I have no side effect to Lamictal at all. Right now they bumped me to 400 twice daily 2 days ago, and just today I had this spell right at work, on tablet of Ativan didnt help, I had to use 2.. and this happened several times..
I though it had something to do with my sleep, but not really.. sometimes these "spells" happen when I got a lot of sleep sometimes not, same with not getting enough sleep, sometimes happens in the office and sometimes doesn't...I am really really confused now, and scared I'm gonna have a seizure on my way home in the train or in the office. The last 2 I had were bad, I fell in the bathroom and hit my eye on the sink and last one I was on treadmill in the gym. I never went back to that gym, I was embarassed.. :( Now, just a thought of having a seizure in public makes me nerveous and uneasy, I'm scared of it actually but not like panic attack scared. A few days from now I have an appointment with my Neuro, should I push them to add another med since lamictal is getting less and less effective, like my body is getting used to it or has a resistance to it now? Or just keep going up on the dose till we can't go anymore??
Also does anyone know, I take syntroid for a thyroid problem, does changing the does of that down and them back up affect AEDs somehow?
Re: Break Through Seizures on Lamictal??
Submitted by todmorrison on Sat, 2009-06-20 - 02:24
I too am on Lamictal and have been for about 3-4 years. I experienced the same type of issue, however it was related to another medication, Zonegran. My history of epilepsy is much like yours in that mine started in my mid-twenties with no prior history or family history of epilepsy. My neurologist started me on Zonegran and my seizures seemed to have been controlled at first, but who really knew since I had my first seizure at 24 and my second at 26. I then began to have seizures more frequently. Like your neuro, mine was quick to increase the dosage which actually began to increase the frequency and severity of my seizures. I spoke to several physicians regarding my neurologists desire to increase the dosage even though my seizures were increasing in frequency and was told by all that the common practice was to keep increasing the dosage until one is maxed out on the drug and then if the medication is still not effective to either add another one or start another one and taper off the one that is ineffective. Fortunately for me, my neurologist gave up his practice to focus solely on hospitalized patients which made me search for a new physician. My new neurologist started me on lamictal and stopped my zonegran. My seizures decreased rapidly after stopping the zonegran. So, long story short, I think that increasing or decreasing the dosage of your meds can equally increase your frequency and severity of seizures. Interestingly enough. I began taking the generic form of Lamictal and have also noticed an increase in the frequency of my seizures. I am seeing my neurologist in the next few weeks and will bring up this issue with her. I hope my ramblings help you.
Tod Morrison RN, BSN
I too am on Lamictal and have been for about 3-4 years. I experienced the same type of issue, however it was related to another medication, Zonegran. My history of epilepsy is much like yours in that mine started in my mid-twenties with no prior history or family history of epilepsy. My neurologist started me on Zonegran and my seizures seemed to have been controlled at first, but who really knew since I had my first seizure at 24 and my second at 26. I then began to have seizures more frequently. Like your neuro, mine was quick to increase the dosage which actually began to increase the frequency and severity of my seizures. I spoke to several physicians regarding my neurologists desire to increase the dosage even though my seizures were increasing in frequency and was told by all that the common practice was to keep increasing the dosage until one is maxed out on the drug and then if the medication is still not effective to either add another one or start another one and taper off the one that is ineffective. Fortunately for me, my neurologist gave up his practice to focus solely on hospitalized patients which made me search for a new physician. My new neurologist started me on lamictal and stopped my zonegran. My seizures decreased rapidly after stopping the zonegran. So, long story short, I think that increasing or decreasing the dosage of your meds can equally increase your frequency and severity of seizures. Interestingly enough. I began taking the generic form of Lamictal and have also noticed an increase in the frequency of my seizures. I am seeing my neurologist in the next few weeks and will bring up this issue with her. I hope my ramblings help you.
Tod Morrison RN, BSN