Hello, new here, advice needed!!

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Mumoftwo

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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!
 
welcome momoftwo :)

i can't help on the lamictal/pregnancy stuff nor the food, but did raise my eyes at Q3 and that your neurologist says complex is what they are. going literally by your explanation of these seizures (deja vu etc.), i strongly advise looking for a second doctor. or at the very least have them look further into epilepsy so they can learn. unfortunately neuros are not trained enough in seizures to always know the answer.

if you stay alert and can fully remember afterwards what happened, that could not be a complex partial. to be aware that your heart is racing, to say a few words, to purposely focus on something to try and shorten the experience... these are all classic of a simple partial seizure.
with complex partials one is not aware of almost anything taking place (from something simple like heart racing to serious such as hands being placed on a hot stove burner). nor can they make actions on their own free will, and most of all there is no remembrance afterward of what took place. one possibility is that it's a simple-turned-complex which needs to be identified as such, not just overall called 'complex.' if this is the case your memory would only be of the feelings and events during the simple (when it turns complex, memory ends).

i can help you in any way you need, just pm me if you like. affectionately known as cwe's 'simple partial queen,' i'm well in-the-know (by book and first-hand) what partial seizures all entail. hugs for now, nat.

ps- we've been on the same drugs and i also had a lesion.
 
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I can't give you any advice of pregnancy and meds but I might be able to answer a few of your questions.

It does sound like you are having simple partials because you aren't blacking out. During these many of the same things happen to me. They also happen when I'm coming out of a complex partial, which is when I'm coming out of a simple partial. One major thing is knowing who people are or where I am. I know that I know who the people I'm with should be there and I know that I should be where ever I am but can't think of the names of either of them.

One of the foods that I stay away from is any thing with caffeine in it. Too much will almost always cause me to have a seizure. This happens with many other people too. I'd look at your meds and make and see if there's any type of food that you shouldn't eat. With one of my meds I can't eat grapefruit.

It's nice to meet you and I know you will get a lot of help here, I sure have!
 
Thank-you!!

welcome momoftwo :)

i can't help on the lamictal/pregnancy stuff nor the food, but did raise my eyes at Q3 and that your neurologist says complex is what they are. going literally by your explanation of these seizures (deja vu etc.), i strongly advise looking for a second doctor. or at the very least have them look further into epilepsy so they can learn. unfortunately neuros are not trained enough in seizures to always know the answer.

if you stay alert and can fully remember afterwards what happened, that could not be a complex partial. to be aware that your heart is racing, to say a few words, to purposely focus on something to try and shorten the experience... these are all classic of a simple partial seizure.
with complex partials one is not aware of almost anything taking place (from something simple like heart racing to serious such as hands being placed on a hot stove burner). nor can they make actions on their own free will, and most of all there is no remembrance afterward of what took place. one possibility is that it's a simple-turned-complex which needs to be identified as such, not just overall called 'complex.' if this is the case your memory would only be of the feelings and events during the simple (when it turns complex, memory ends).

i can help you in any way you need, just pm me if you like. affectionately known as cwe's 'simple partial queen,' i'm well in-the-know (by book and first-hand) what partial seizures all entail. hugs for now, nat.

ps- we've been on the same drugs and i also had a lesion.


Thank-you for your quick reply! I actually agree with you about them being Simple Partials. Do you know if they usually progress on to last longer than 15-20 seconds or to go on to be be Complex Partials or even more serious?
 
Thank-you!!

I can't give you any advice of pregnancy and meds but I might be able to answer a few of your questions.

It does sound like you are having simple partials because you aren't blacking out. During these many of the same things happen to me. They also happen when I'm coming out of a complex partial, which is when I'm coming out of a simple partial. One major thing is knowing who people are or where I am. I know that I know who the people I'm with should be there and I know that I should be where ever I am but can't think of the names of either of them.

One of the foods that I stay away from is any thing with caffeine in it. Too much will almost always cause me to have a seizure. This happens with many other people too. I'd look at your meds and make and see if there's any type of food that you shouldn't eat. With one of my meds I can't eat grapefruit.

It's nice to meet you and I know you will get a lot of help here, I sure have!


Thank-you for your reply. It's so great to hear from others that experience the same things I do. I sometimes feel like I'm going crazy! And they can happen in the most awkward of places. Like walking down the street with a pram or at the dinner table of a restaurant when out with friends! What do you do when they come on? eg. breathing, self-talk to get you through it? Also, could I ask what you meant by "They also happen when I'm coming out of a complex partial, which is when I'm coming out of a simple partial". Do you have both happen at the same time?
 
During and after a seizure I'm asked simple questions to answer. Questions that I should be able to answer right away without having to think about. Like what's my name, where do I live, what is the person's name who is asking me the questions, my telephone number, what are the pets name, my mom's maiden name and things like that.

My simple partials usually last around 5 minutes or a little longer, everyone's seizure last different spans of time though. Some people's may last longer, some shorter.

When I'm having a simple partial I'm completely aware of what's going on. But when I'm asked these questions I have to think about the answer. It's right there on the tip of my tongue but it might take as long as 30 seconds to get out.

Sometimes before a complex partial I'll have a simple partial so I'll have all these things happen then I'll black out.

My complex partials on average last at around 10 minutes but everyone's last different amounts of time. When I'm having a complex partial I'll black out during it and when I'm asked these questions I'll have no clue that I'm even being asked them. When I start to come out of it I know that I'm being asked these questions but have no clue what the answer is. As you said I know that the place I'm at is a normal place and the person who is asking me these questions is someone I know but I have no idea where or who they are.

I'll be asked these questions over and over and when I'm able to answer them in a normal amount of time then we know that I'm out of the seizure.

I may have a seizure in the grocery store. If it's a simple complex I'll usually know where I am, it takes me a little while to figure it out, and I may not be able to figure out why I went there. To buy groceries - duh...

If I have a complex partial in public, say the grocery store again, and start to come out of it I have no clue where I am and if it's someone who works in the store asking me any type of question I have no clue who he is and don't understand a thing he's saying. When I start to come out of a complex I may start to realize that I'm in the store but that's generally all. It takes me a little longer to come completely to than it is if I'm at home. It might take as long as a half and hour before I figure out what's going on but I know that I'm not having an actual seizure that whole time.
 
During and after a seizure I'm asked simple questions to answer. Questions that I should be able to answer right away without having to think about. Like what's my name, where do I live, what is the person's name who is asking me the questions, my telephone number, what are the pets name, my mom's maiden name and things like that.

My simple partials usually last around 5 minutes or a little longer, everyone's seizure last different spans of time though. Some people's may last longer, some shorter.

When I'm having a simple partial I'm completely aware of what's going on. But when I'm asked these questions I have to think about the answer. It's right there on the tip of my tongue but it might take as long as 30 seconds to get out.

Sometimes before a complex partial I'll have a simple partial so I'll have all these things happen then I'll black out.

My complex partials on average last at around 10 minutes but everyone's last different amounts of time. When I'm having a complex partial I'll black out during it and when I'm asked these questions I'll have no clue that I'm even being asked them. When I start to come out of it I know that I'm being asked these questions but have no clue what the answer is. As you said I know that the place I'm at is a normal place and the person who is asking me these questions is someone I know but I have no idea where or who they are.

I'll be asked these questions over and over and when I'm able to answer them in a normal amount of time then we know that I'm out of the seizure.

I may have a seizure in the grocery store. If it's a simple complex I'll usually know where I am, it takes me a little while to figure it out, and I may not be able to figure out why I went there. To buy groceries - duh...

If I have a complex partial in public, say the grocery store again, and start to come out of it I have no clue where I am and if it's someone who works in the store asking me any type of question I have no clue who he is and don't understand a thing he's saying. When I start to come out of a complex I may start to realize that I'm in the store but that's generally all. It takes me a little longer to come completely to than it is if I'm at home. It might take as long as a half and hour before I figure out what's going on but I know that I'm not having an actual seizure that whole time.
Thankyou very much for explaining your experience! I feel so much better listening to others stories being so similar to mine.. Not so alone anymore!! Will keep you in my prayers :) Take care.
 
Hi Mumoftwo,

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".

Since there's a wide variation in Lamictal therapeutic response and toxicity, there's no standardized "safe" dose. Just to make it more complicated, Lamictal clearance rates often speed up during pregnancy (due to increased estrogen), so a dose may need to be increased to compensate.

This study: http://www.ncbi.nlm.nih.gov/pubmed/18448870 suggests that the rate of Lamictal-related cleft-palate birth defects is 2.3%. But it sounds like you want the risk at zero :) , in which case the safest dose is no dose at all. Given that you don't have convulsive seizures or loss of consciousness, then there's a strong possibility that you could indeed go med-free for some or all of your pregnancy. The most important thing is that you neuro and your OB/GYN are on the same page, and that you check in with them frequently during the pregnancy. (You should also discuss with them whether to be on Lamictal during breastfeeding.)

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.
This is also highly-individualized I'm afraid -- each person responds differently and can have different triggers. Many triggers aren't even food-related. Do you keep a seizure-diary, or have you in the past? That's a good way to look for patterns or possible triggers. Generally speaking, it's a good idea to avoid stimulants like caffeine or alcohol, as well as certain cold medications. Some people are sensitive to aspartame or msg. Some have found that gluten is problematic. The diets that have helped children and some adults to reduce their seizures are low-carb-high-fat. You can read a bit about that here: http://www.atkinsforseizures.com/images/LancetNeurologyKD.pdf
 
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