Continue meds during pregnancy?? Are SP seizures manageable without meds??

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. I'm still trying to work out how to find a post once I've written it so forgive me if I'm doubling up!!

Some background on me:

First seizure at 16yrs in 2000. 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. Neurologist thought they were Complex Partial seizures but an experienced forum member said they sound like Simple Partials. I would agree with her. 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 simple partials for 14 + years that then went on to progress into more serious seizures? 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!
 
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I can only answer question number three really, kinda as I have only ever taken keppra as well as now topamax.
My story is similar to yours. In 2002, when I was 15, I was diagnosed with a dissociative disorder and put on endless antidepressant and antipsychotic medications for my out of body experiences, blackouts, spaciness, etc. I'd had them since I was five. First at 12 the doctor said they were migraine, when I started having OBE they sent me to the psych field.
So I spend the next ten years being bounced around there on countless medications. All in all twenty years having simple partial, complex partial, and absent seizures until late 2011 when I had a tonic clonic. My complex partials became more frequent as did my absent which led me out of the psych field and into the EEG room where I got the epilepsy diagnosis in 2012 when I was 25. 20 years undiagnosed. From our understanding I developed epilepsy from a head injury in an accident when I was five and was worsened from a concussion in 2010 that led to the event of 2011. Lots of details. So to get to the point. As much as I -hate- the medication, allowing the seizures to be uncontrolled for so long allowed them to continue to progress. Instead of getting a few simples a month, a couple complex a year and one absent every five gears its been numerous dimples and complexes daily but thankfully the medication has been able to hold off the big episodes for two years now where I was having 2+ a year of those.
 

mary1

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I took medication for 40 years and about 6 years ago decided not to take meds. My neurologist insisted they would get worse if I went off meds. Since mine are not severe, I chose to go off meds. So far, they have not gotten worse. Not driving s a real inconvenience, but side effects from meds. Are worse as far as I am concerned.


It is an individual choice, and maybe if I had grand mal epilepsy, I would think differently, but m e are complex partial.
 

Mumoftwo

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Simple Partials Progressing to Complex and Tonic Clonic

I can only answer question number three really, kinda as I have only ever taken keppra as well as now topamax.
My story is similar to yours. In 2002, when I was 15, I was diagnosed with a dissociative disorder and put on endless antidepressant and antipsychotic medications for my out of body experiences, blackouts, spaciness, etc. I'd had them since I was five. First at 12 the doctor said they were migraine, when I started having OBE they sent me to the psych field.
So I spend the next ten years being bounced around there on countless medications. All in all twenty years having simple partial, complex partial, and absent seizures until late 2011 when I had a tonic clonic. My complex partials became more frequent as did my absent which led me out of the psych field and into the EEG room where I got the epilepsy diagnosis in 2012 when I was 25. 20 years undiagnosed. From our understanding I developed epilepsy from a head injury in an accident when I was five and was worsened from a concussion in 2010 that led to the event of 2011. Lots of details. So to get to the point. As much as I -hate- the medication, allowing the seizures to be uncontrolled for so long allowed them to continue to progress. Instead of getting a few simples a month, a couple complex a year and one absent every five gears its been numerous dimples and complexes daily but thankfully the medication has been able to hold off the big episodes for two years now where I was having 2+ a year of those.
Thank you very much for sharing your story and shedding some insight on the possible path of progression. I will definitely take your advice on board. I wonder if you know if anyone else has had seizure severity progress in spite of taking medication??
 

Mumoftwo

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I took medication for 40 years and about 6 years ago decided not to take meds. My neurologist insisted they would get worse if I went off meds. Since mine are not severe, I chose to go off meds. So far, they have not gotten worse. Not driving s a real inconvenience, but side effects from meds. Are worse as far as I am concerned.


It is an individual choice, and maybe if I had grand mal epilepsy, I would think differently, but m e are complex partial.
Thanks Mary for your reply! I'm glad to hear that it is possible that seizures such as complex partial may not progress even without taking meds. May I ask how often you get them and what happens with your experience of them? Also did they start out as simple partials and progress to complex partials (CP) or have they always been the same experience as a CP?
 

mary1

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Thanks Mary for your reply! I'm glad to hear that it is possible that seizures such as complex partial may not progress even without taking meds. May I ask how often you get them and what happens with your experience of them? Also did they start out as simple partials and progress to complex partials (CP) or have they always been the same experience as a CP?
Dear Momoftwo: The last seizure I had was about 6 weeks ago. I am aware of them 90 percent of the time but since I have refractory seizures (a epileptologist told me about refractory seizures about 5 years ago as I had never heard of them. I thought I was always aware of them). If I do get them and am unaware, I still react the same way for about 3 minutes I am confused and then I am fine.

I am reading a book by Dr. Perlmutter called "Grain Brain." He is a famous neurologist in Naples, Florida. I've renewed his book at the Library about 6 times as I really think he makes a lot of sense. He advocates no grains or glutton for brain disorders including Epilepsy, and I am all for trying natural things. Good luck and God Bless!
 

epileric

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Mumoftwo, do be careful if you go off of your meds. I was born with partial seizures and have been on medications since I was 4 or 5 years old.

When I was 18 I decided I could do without my meds & that was when I had my first convulsion. Please remember that even though you just have partial seizures, that is what you are having with the medication that may be keeping them from getting worse. Personally, I would think a convulsion when pregnant would have more possible repercussions than if you weren't. I would suggest talking to your neurologist first and finding out what the possible repercussions are.

mary1, talk to a dietitian or someone with training in biology & the effects of food. I've read many reviews that talk about Grain Brain & Wheat Belly and nobody with the proper training has said anything very positive about the book. This doctor explains point by point why the book is not accurate. The Smoke and Mirrors behind Wheat Belly and Grain Brain

The book suggest a diet high in meat & eggs which have been shown in more than one study to produce a gas known as TMAO that will cause atherosclerosis.
CONCLUSIONS:

The production of TMAO from dietary phosphatidylcholine is dependent on metabolism by the intestinal microbiota. Increased TMAO levels are associated with an increased risk of incident major adverse cardiovascular events. (Funded by the National Institutes of Health and others.).
http://www.ncbi.nlm.nih.gov/pubmed/23614584

Omnivorous human subjects produced more TMAO than did vegans or vegetarians following ingestion of L-carnitine through a microbiota-dependent mechanism. The presence of specific bacterial taxa in human feces was associated with both plasma TMAO concentration and dietary status. Plasma L-carnitine levels in subjects undergoing cardiac evaluation (n = 2,595) predicted increased risks for both prevalent cardiovascular disease (CVD) and incident major adverse cardiac events (myocardial infarction, stroke or death), but only among subjects with concurrently high TMAO levels.

http://www.ncbi.nlm.nih.gov/pubmed/23563705
 
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