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Break Through Seizures on Lamictal??

Hi 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??

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

Re: Break Through Seizures on Lamictal??

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??

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??

My 19 year old daughter is having an increase in seizures (partial complex) in the past 3 weeks since increasing her dose of Lamictal.  Her dose was increase from 450mg to 500mg per day.  She was having about 1 seizure per month, now she's had 12 in the past 3 weeks, along with dizziness and aura feelings most days.  It didn't make sense to me that she would have more seizures on a higher dose, but interesting to see that's it's happened to others. 

Re: Break Through Seizures on Lamictal??

I don't know if Lamictal is one of these drugs but sometimes an AED can lose its effectiveness.  For my daughter, Lamictal did cause an increase in seizures.  But it's hard to say if this is the case for you. 

Another thing that can lower the seizure threshold are other medications, whether they may be prescribed or over the counter.  Even some nutritional supplements can wreck havoc on seizure control.

Stress and lack of sleep are definitely factors for seizure breakthrough.  If you can document this with the previous seizures that you've had then you might be on the right track.

If you can't find a common denominator for these increase in seizures then I think it wouldn't be unwise to consider adding another AED to the regimen or replacing the Lamictal altogether.

And...one piece of advice.  If you can stay on the name brand medication for seizure control, do it.  There have been so many instances of seizure breakthrough while taking the generics.

~Karen

Re: Break Through Seizures on Lamictal??

I hope thats not true, about Lamictal loosing effectiveness. I was doing so good on 100mg twice a day. I was seizure free for more then 2 years, even started driving again.  Within those two years I had plenty of stress, and lack of sleep. There has been weeks where I went to sleep past 3am and woke up early.. Never a single seizure.. Now all of a sudden seems like Lamictal is not working. Maybe this is a relapse after my doctor tried to take me off Lamictal completely, I dunno.

And yes there's definitely a pattern in my seizures, they happen when Im extreemely tired/exhausted, or have been lacking sleep for a while. And they happen late at night, or in the morning shortly after waking up. During those times I try to be cautious and stay home.. But still I thought Lamictal would take care of it. Hopefully this increase of 50mg will help to keep me seizure free.

Re: Break Through Seizures on Lamictal??

I just posted today about my 18 year old son having more seizures on Lamictal after being controlled for so long.

He started out having 3 grand mals until he went on Lamictal 200 mg day.  He was fine for 1 1/2 years and then had a breakthrough.  They increased him to 400 mg day and he was fine for another 1  1/2 years--he even go his license.  Now, he is having complex partial seizures.  They increased him to 500 mg then 600 mg and he was having more.  Switched neuro and now they have dropped him back down to 500 mg of the extended release tablets.  He had a complex partial two weeks ago.  He is scheduled for a EEG monday at U.C.L.A., so hopefully we will get some answers.

The hardest part is dealing with depression.  He was doing so well.  Driving, going to college and playing high level soccer.  Now, he can't drive.  He has trouble with his memory so school is hard and the complex partials keep happening during a soccer game.

We are going to the Mayo clinic in January for a week stay.  Maybe more answers there. 

I wish I could give you some good advice, but I can't find anything on Lamictal causing breakthroughs.  It is so frustrating.  I want so badly to help him.

I wish you all the best.  If I find anything else out, I'll be sure to let you know.

 

Re: Break Through Seizures on Lamictal??

I have break through Seizures on Lamictal all the time. Lamictal has never worked well for me and everytime I bring up wanting to change meds to my Dr, my Father who drives me to my Dr's appts. because I can't drive has a fit, last time I checked, I'm the one with Epilepsy. My seizures are not well controlled and as a known side effect of Lamictal, I am losing my hair. I want to change meds period.

Re: Break Through Seizures on Lamictal??

 

Do you take more than one medication? I was taking Clobazam and Lamictal for years but my body got used to the Clobazam so I had to switch to Lamictal and Keppra.  I experience breakthrough seizures all the time. I also lose a fair amount of hair but I think it's a combo of medication and stress. I know that my seizures have gotten worse as I get older and they're a little harder to control.  If I were you, I would maybe stick it out for a couple of more weeks to see if the dosage increase is actually effective or asked to be switched to a different med.  I would also ask the doctor if he/she thought monotherapy is effective enough or if you need to have a combo of seizure meds (I hope that's not the case!).  Thinking of you,

 

Terri

Re: Break Through Seizures on Lamictal??

Hi everyone!,

I have had JME since I was 17 (in my 40s) now.  I'm also on Lamictal and take 800 mg/day.  I take the name brand because I was having breakthroughs on the generic brand.  Unfortunately the drug just doesn't seem to be controlling my seizures that well anymore.  Last Tuesday I had an upset stomach in the middle of the night and became very dehydrated because of it.  When I went back to bed my wife told me that I had a GM in my sleep.  I suspect that my medication didn't get absorbed because of my upset stomach but that still doesn't make me feel any better.  Has anyone else had this problem?

It seems that I'm too much on the edge.  I'm waiting for my epileptologist to get back to me with some ideas.  I'm concerned that if another drug is added that my cognitive abilities will be compromised.  Also, If I have an upset stomach in the future I'm concerned that I could be at risk for a seizure no matter how much mediciation I'm on.  The water that floods our small intestine when we have an upset stomach may flush out the medication preventing it from being absorbed.  Thoughts anyone?  I'll post again after my epileptologist gets back to me.  As you all know seizures are very difficult to deal with both emotionally and physically and I admire all of you for persevering.

Warmest regards,

Mark

Re: Break Through Seizures on Lamictal??

Mark.  I have TLE and, like you, take Lamictal, 200mg/d, rather less than the - what seems excessive to me - 800mg you take.  My epi is more or less controlled to the extent that I am now driving a car.  However, something I only discovered ten years or so ago, my seizures only occur when I am dehydrated.  Mild and infrequent at first, they disappear after a glass or two of water (a warning sign here, before any seizures occur, is a dark colour to one's urine).  There can be one or two mild 'aftershocks' but they are not significant.  A similar course of events takes place if I forget to take one of my twice-daily doses of the drug.

 As to your medication not being 'absorbed' you might not know but Lamictal has a longish half-life, around 30-35 hours, so the effects of dehydration are unlilely to be immediate - and that is my experience.  Which is fortunate in that it gives one time to do something about it.  Everyone is different in their reaction to different AEDs/their side-effects and maybe your upset stomach did set off a seizure or two, for whatever reason.  Still, it migth be worth monitoring any correlation between dehydration and your seizures, especially in the context of long-haul flights, arid climates, too much alcohol etc etc.  I hope things improve.

 Chris

Re: Break Through Seizures on Lamictal??

I've been on 250mg 3x/day.  I had been doing well until August when I started getting the bad simple partial szs, the kind that lead to the partial complex.  I have had no side-effects on Lamictal and it has been one of the best meds I've been on, and now this!  I also have the VNS which helped my simple partials.  I literally lived in them.  I could not count them, it was like counting how many times you're happy during the day - you can't.  Now I don't live in them.  I can count them - but ever since August, they have been coming very forcefully.

 

Dagmar

Re: Break Through Seizures on Lamictal??

I take Petit-mal seziures and Lamictal was my first drug and it started at 25mg, 50mg, 100mg,150mg and now 200mg.

They are trying to slowly take me off Lamictal now.

I was on it for 8 years I think and got put on to zonegran aswell because doctors told me I could develope Grand-mal seizures because I've been taking lamictal for so long.

I've had epilepsy since i was 8 im not 21 this year and still take abscences with two drugs, Zonegran was a new drug just out when I got it so maybe I was a test subject I dunno, But it just possibly is a side effect of your body getting used to the dosage if you read your leaflet it says side effects. When I first went onto lamictal I took more abscences than I did when i first started taking seizures.

 

Re: Break Through Seizures on Lamictal??

I take Petit-mal seziures and Lamictal was my first drug and it started at 25mg, 50mg, 100mg,150mg and now 200mg.

They are trying to slowly take me off Lamictal now.

I was on it for 8 years I think and got put on to zonegran aswell because doctors told me I could develope Grand-mal seizures because I've been taking lamictal for so long.

I've had epilepsy since i was 8 im not 21 this year and still take abscences with two drugs, Zonegran was a new drug just out when I got it so maybe I was a test subject I dunno, But it just possibly is a side effect of your body getting used to the dosage if you read your leaflet it says side effects. When I first went onto lamictal I took more abscences than I did when i first started taking seizures.

 

Re: Break Through Seizures on Lamictal??

I have complex partial seizure - used to be called temporal lobe disorder I guess.  I get an aura - facial twitching and a hand twitch on the right side.  My vision goes pink and I go into a blackout lasting any where from 30 secs to 3 minutes.  I pick my clothes, mumble, my eyes roll back in my head, and my right hand twitches a bit during the black out. I'm very confused after, drowsey and unsteady on my feet.  I am terrified I will lose my job.                                                                                                                                                         

I have been on generic lamictal for almost a year.  started it for bipolar disorder II but finally got to a neurologist 6 months ago after having untreated seizures since 1996.  (Apparently all doctors think if you have bipolar you must have anxiety attacks)  I was on 400 mg daily and was still having seizures.  The neuro left me on the same dose.  Then the vomiting started about 3 months ago (no I"m not pregnant, had several tests including blood work)   I vomit every morning, badly.  I self-reduced the meds down to 200 mg when the neuro wasn't listening, waited a few weeks and asked for a lamictal level.  It was good.  I got a lecture about not taking my meds, she won't switch me. 

 I get at least one break through a week.  It's affecting my job.  Just had one at work today and got sent home.  I am terrified I'll loose my job.  I'll have to talk to my neuro about the difference between generic and name label.  Are there any other medications anyone knows about that are good for the complex partial absence seizures?  

Re: Break Through Seizures on Lamictal??

Hey i  know exactly what your going through I was put on lamictal and during that time my seizures doubled it was every other week i was having to be rushed to the hospital. I just wasnt coming out of the seizures by myself plus i was having more grand mal seizures. My typical seizure is complex partial seizures so it was a very confusing time.

Re: Break Through Seizures on Lamictal??

Bottom line: everyone responds differently to different medications. What works for one person may not work well for another, and same goes for dosages. What one person finds works for their seizure type may not help another person's type of seizures. Find a neurologist you like and trust, and work with him/her together to find what works best for you.
Definitely read others' experiences, but educate yourself on the more objective information as well.

This site is a remarkable resource, and I would have been lost many times without it. It's this site that helped me learn what I just typed above :)