Hi everyone,
I've just subscribed to this forum and am a Mum of two (including a toddler aged 18 months) hoping to get your advice and hear your experiences. Some background on me:
First seizure at 16yrs in 2000 - Fits the description of a complex partial according to my neurologist. Initially it was thought to be severe anxiety (a dissociation experience) and was treated with anti-depresssants for 6yrs (until aged 22 when I self-weaned off them). During those 6 years I only had about 2 episodes a year. Then around age 25 they began to increase to one every other month. I requested a CT and MRI scan that discovered a lesion in the occipital lobe (area affecting vision). The lesion has been monitored for 4 years now and found to be unchanging so my neurosurgeon is keeping an eye on it. It is likely causing the seizures but an operation to remove it would not be without risks to vision. Since then I saw my neurologist at RPA who diagnosed me and trialled me on various medications until settling on Tegratol 200mg twice daily in 2012. As long as I was on the medication I was fine but I only had to miss a dose or take it late and I would have a seizure. So they have certainly increased in frequency since the first one 14 years ago. I had Tegratol 200mg twice daily during my pregnancy late 2012 and my first baby was a healthy baby girl, above all her milestones. After her birth the seizures seem to stop responding and I increased to 300mg twice daily. My LFTs were abnormal and as the LFT levels which concerned my neurologist were increasing I was switched to Lamictal early 2014. I have been trialling various doses and am on 125/100 at the moment. I have had two breakthrough seizures in the past two days and we suspect I am pregnant (we can test in a couple of days) as we have been planning to have another child.
Regarding the seizure history, my seizure experience is unchanged over the past 14 years -
Sense of de ja vu comes over me lasting 4-5 seconds before progressing into a 15-20 sec spell of confusion, not knowing where I am, who I am with (don't even recognise my own husband or daughters but seem to understand they are important to me), what I was just doing. My heart races uncontrollably, I can still hear and see during the spell but the experience is so overwhelming I usually close my eyes or put my head in my hands. My hearing sense is heightened during the experience. After the 15-20 sec the spell passes and I am back to normal. Lately I have been able to hold them off for an extra 5 seconds by focusing on something (sensory grounding). I can talk during the episode, enough to tell my husband "its happening again". I can recall the whole event afterwards. There is no clear cause although I am a coffee drinker and a sleep deprived Mum who is under a bit of stress due to family tensions, all of which I'm sure doesn't help. I've recently cut caffeine (sticking to decaf) and am trying to improve my diet/exercise etc.
I have three questions I am hoping to get your advice on-
Q1. Does anyone have any experience going off Lamictal during first trimester pregnancy and returning to it in second trimester? Or does anyone know of any research of what is a "safe" dose during pregnancy?
I have done a lot of research on the effects of Lamictal regarding birth defects. While those taking Lamictal are only 1-2% more likely to have a baby with a birth defect than the general population, a woman taking Lamictal is 16 times more likely to have a baby with a cleft palate. (One study I read of 564 mothers, 9 were born with a cleft palate compared to approx. 1 in 1000 in the general population). The cleft palate is developed between wks 6 and 11 so I would only be required to be off for 5 weeks. I am currently not driving and would only go out with a family member or friend (until back on meds) so am not too concerned about doing this. While the experience of the seizures are scary, they are at worst an inconvenience that I can bear for a month or so.
Regarding the safe dose question, studies indicate more birth defects are prevalent in those on higher Lamictal doses but I can't find what dose level they are referring to as "high".
Q2. What are the foods to eat/not to eat to avoid seizures? I see many people on the forum saying they have been seizure free following a change in diet but when I click the link to there blog it always says "No posts". This information as well as any other advice on preventing seizures would be really appreciated especially for me to implement during the 5 weeks off meds.
Q3. Does anyone have a similar experience of complex partials for 14 + years that progressed into something more serious? What are the side effects on health of living with them without medicating? (Apart from the anxiety they cause and the inconvenience of not driving).
Thanks in advance to you all for your help, I am so happy and relieved to have discovered this forum and see that I am not alone!
I've just subscribed to this forum and am a Mum of two (including a toddler aged 18 months) hoping to get your advice and hear your experiences. Some background on me:
First seizure at 16yrs in 2000 - Fits the description of a complex partial according to my neurologist. Initially it was thought to be severe anxiety (a dissociation experience) and was treated with anti-depresssants for 6yrs (until aged 22 when I self-weaned off them). During those 6 years I only had about 2 episodes a year. Then around age 25 they began to increase to one every other month. I requested a CT and MRI scan that discovered a lesion in the occipital lobe (area affecting vision). The lesion has been monitored for 4 years now and found to be unchanging so my neurosurgeon is keeping an eye on it. It is likely causing the seizures but an operation to remove it would not be without risks to vision. Since then I saw my neurologist at RPA who diagnosed me and trialled me on various medications until settling on Tegratol 200mg twice daily in 2012. As long as I was on the medication I was fine but I only had to miss a dose or take it late and I would have a seizure. So they have certainly increased in frequency since the first one 14 years ago. I had Tegratol 200mg twice daily during my pregnancy late 2012 and my first baby was a healthy baby girl, above all her milestones. After her birth the seizures seem to stop responding and I increased to 300mg twice daily. My LFTs were abnormal and as the LFT levels which concerned my neurologist were increasing I was switched to Lamictal early 2014. I have been trialling various doses and am on 125/100 at the moment. I have had two breakthrough seizures in the past two days and we suspect I am pregnant (we can test in a couple of days) as we have been planning to have another child.
Regarding the seizure history, my seizure experience is unchanged over the past 14 years -
Sense of de ja vu comes over me lasting 4-5 seconds before progressing into a 15-20 sec spell of confusion, not knowing where I am, who I am with (don't even recognise my own husband or daughters but seem to understand they are important to me), what I was just doing. My heart races uncontrollably, I can still hear and see during the spell but the experience is so overwhelming I usually close my eyes or put my head in my hands. My hearing sense is heightened during the experience. After the 15-20 sec the spell passes and I am back to normal. Lately I have been able to hold them off for an extra 5 seconds by focusing on something (sensory grounding). I can talk during the episode, enough to tell my husband "its happening again". I can recall the whole event afterwards. There is no clear cause although I am a coffee drinker and a sleep deprived Mum who is under a bit of stress due to family tensions, all of which I'm sure doesn't help. I've recently cut caffeine (sticking to decaf) and am trying to improve my diet/exercise etc.
I have three questions I am hoping to get your advice on-
Q1. Does anyone have any experience going off Lamictal during first trimester pregnancy and returning to it in second trimester? Or does anyone know of any research of what is a "safe" dose during pregnancy?
I have done a lot of research on the effects of Lamictal regarding birth defects. While those taking Lamictal are only 1-2% more likely to have a baby with a birth defect than the general population, a woman taking Lamictal is 16 times more likely to have a baby with a cleft palate. (One study I read of 564 mothers, 9 were born with a cleft palate compared to approx. 1 in 1000 in the general population). The cleft palate is developed between wks 6 and 11 so I would only be required to be off for 5 weeks. I am currently not driving and would only go out with a family member or friend (until back on meds) so am not too concerned about doing this. While the experience of the seizures are scary, they are at worst an inconvenience that I can bear for a month or so.
Regarding the safe dose question, studies indicate more birth defects are prevalent in those on higher Lamictal doses but I can't find what dose level they are referring to as "high".
Q2. What are the foods to eat/not to eat to avoid seizures? I see many people on the forum saying they have been seizure free following a change in diet but when I click the link to there blog it always says "No posts". This information as well as any other advice on preventing seizures would be really appreciated especially for me to implement during the 5 weeks off meds.
Q3. Does anyone have a similar experience of complex partials for 14 + years that progressed into something more serious? What are the side effects on health of living with them without medicating? (Apart from the anxiety they cause and the inconvenience of not driving).
Thanks in advance to you all for your help, I am so happy and relieved to have discovered this forum and see that I am not alone!