Break Through Seizures on Lamictal??

CDC funded page

Not a CDC funded Page

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

Hello everyone, My mother had

Submitted by PaulaRejas on Sat, 2018-03-10 - 17:06

Hello everyone, My mother had her first seizure at 52 yrs old, 6 months later she had her 2nd one and so was diagnosed with grand Mal seizures and put on a regimen, she started out with Keppra at the hospital 500mg which her neurologist said was crazy they'd put her on such a high dose right away. So I don't know why he wouldn't just reduce the dosage (but now reading how dosages can cause you a seizure, maybe that's why), anyways instead he switched her to one that starts with a C ... I can't remember the name and she developed an allergic reaction by the 3rd week, so was finally put on lamotrigine generic. She has been on it for 4 weeks now and everything seems fine so far. I am in nursing school and I'm learning a lot, like telling your patients what side effects to look out for, what labs should be performed etc and I can tell you all from the training I'm getting to real life primary doctors, nurses, specialists no one gives a craap to actually tell you these things. They are trained to just follow protocol and cover their assess. You are are guinea pig to them unless u actually manage to score a humanitarian, compassionate health care provider. My advice to anyone struggling to get the right dosage, be mindful that the only person that really cares about you, is yourself. It's hard to remember things by memory, keep a diary of what you ate, how you slept, was the weather too warm, did u drink enough water, were you under a lot of stress, etc Try to figure out your own body, you know it best. Our bodies like consistency, they respond better and when it's all over the place, especially affecting your nervous system (and all these things affect your CNS) something is bound to happen. The brain is probably the least understood organ in our bodies so doctors are really just following protocol when they raise your dosage , be mindful that your liver and kidneys are affected by these strong medication and you could develop cirrhosis or even need dialysis in the long run and since it's a lifelong condition, you should monitor these regularly and not just blindly accept higher and higher dosages. If you are not happy with your neurologist, get a new one. Ps: her primary said he recommended my mom to start taking calcium, didn't say why and I failed to ask why with all the other info I got, and I just learned in school that people on some AED(definitely lamotrigine) hAve a higher incidence to develop osteoporosis, so now we have to worry about that too

Hello everyone, My mother had her first seizure at 52 yrs old, 6 months later she had her 2nd one and so was diagnosed with grand Mal seizures and put on a regimen, she started out with Keppra at the hospital 500mg which her neurologist said was crazy they'd put her on such a high dose right away. So I don't know why he wouldn't just reduce the dosage (but now reading how dosages can cause you a seizure, maybe that's why), anyways instead he switched her to one that starts with a C ... I can't remember the name and she developed an allergic reaction by the 3rd week, so was finally put on lamotrigine generic. She has been on it for 4 weeks now and everything seems fine so far. I am in nursing school and I'm learning a lot, like telling your patients what side effects to look out for, what labs should be performed etc and I can tell you all from the training I'm getting to real life primary doctors, nurses, specialists no one gives a craap to actually tell you these things. They are trained to just follow protocol and cover their assess. You are are guinea pig to them unless u actually manage to score a humanitarian, compassionate health care provider. My advice to anyone struggling to get the right dosage, be mindful that the only person that really cares about you, is yourself. It's hard to remember things by memory, keep a diary of what you ate, how you slept, was the weather too warm, did u drink enough water, were you under a lot of stress, etc Try to figure out your own body, you know it best. Our bodies like consistency, they respond better and when it's all over the place, especially affecting your nervous system (and all these things affect your CNS) something is bound to happen. The brain is probably the least understood organ in our bodies so doctors are really just following protocol when they raise your dosage , be mindful that your liver and kidneys are affected by these strong medication and you could develop cirrhosis or even need dialysis in the long run and since it's a lifelong condition, you should monitor these regularly and not just blindly accept higher and higher dosages. If you are not happy with your neurologist, get a new one. Ps: her primary said he recommended my mom to start taking calcium, didn't say why and I failed to ask why with all the other info I got, and I just learned in school that people on some AED(definitely lamotrigine) hAve a higher incidence to develop osteoporosis, so now we have to worry about that too 

Hello everyone, My mother had her first seizure at 52 yrs old, 6 months later she had her 2nd one and so was diagnosed with grand Mal seizures and put on a regimen, she started out with Keppra at the hospital 500mg which her neurologist said was crazy they'd put her on such a high dose right away. So I don't know why he wouldn't just reduce the dosage (but now reading how dosages can cause you a seizure, maybe that's why), anyways instead he switched her to one that starts with a C ... I can't remember the name and she developed an allergic reaction by the 3rd week, so was finally put on lamotrigine generic. She has been on it for 4 weeks now and everything seems fine so far. I am in nursing school and I'm learning a lot, like telling your patients what side effects to look out for, what labs should be performed etc and I can tell you all from the training I'm getting to real life primary doctors, nurses, specialists no one gives a craap to actually tell you these things. They are trained to just follow protocol and cover their assess. You are are guinea pig to them unless u actually manage to score a humanitarian, compassionate health care provider. My advice to anyone struggling to get the right dosage, be mindful that the only person that really cares about you, is yourself. It's hard to remember things by memory, keep a diary of what you ate, how you slept, was the weather too warm, did u drink enough water, were you under a lot of stress, etc Try to figure out your own body, you know it best. Our bodies like consistency, they respond better and when it's all over the place, especially affecting your nervous system (and all these things affect your CNS) something is bound to happen. The brain is probably the least understood organ in our bodies so doctors are really just following protocol when they raise your dosage , be mindful that your liver and kidneys are affected by these strong medication and you could develop cirrhosis or even need dialysis in the long run and since it's a lifelong condition, you should monitor these regularly and not just blindly accept higher and higher dosages. If you are not happy with your neurologist, get a new one. Ps: her primary said he recommended my mom to start taking calcium, didn't say why and I failed to ask why with all the other info I got, and I just learned in school that people on some AED(definitely lamotrigine) hAve a higher incidence to develop osteoporosis, so now we have to worry about that too

I have had good seizure

Submitted by maryl on Sun, 2018-07-01 - 11:14

I have had good seizure control for my grand mal seizure with lamotrigine and have had a few breakthrough seizures, but at the time I was exhausted . I started off on Teva brand but found out recently that the company discontinued making it and I had to switch to another brand. This has caused some mood swings and nausea, but I think I will get used to it. I take 200 mg morning and night. Previously I was on Tegratol and put up with some nasty side effects. This drug worked much better with fewer mood swings. I would like to reduce lamotrigine and use medical marijuana, which would have far fewer side effects. It is hard to find a neurologist to help with that option. Thanks for sharing experiences. It really helps to connect with people out there.