A New Member with Questions

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Hello! I am a third grade teacher and just recently had a grand mal seizure a month and a half ago during my Christmas break. I had been seizure free without meds for 15 years. I started having petit mal seizures (absence seizures) when I was 7 or 8 and had my first grand mal when I was 11 until I was 13 or 14. My pediatric neurologist took me off my meds (Depakote) when I was about 16. I haven't had any problems until recently. I am back on meds (Levetiracetam) and haven't had anything else happen so far. My doctor had an MRI done(everything was normal) and an EEG. He told me that my EEG showed I had generalized epilepsy and told me he wanted to keep me on my meds. I guess my question is why would I go for 15 years with no seizures to suddenly having a seizure and being put back on meds. Has anyone had anything similar happen to them? I guess I am frustrated because I want to know why I had a seizure again after so many years without any.
 
Welcome to CWE! I know you're probably frustrated and have alof of questions as to why you could go so long without having any seizures and then out of the blue, seizures come back. Im a 30 year old female who was dx'd with epilepsy at 18 months old. Ive been on medications since then. So I cant relate as far as being taken off medications and not having any seizures. But in my childhood years I was having complex partial seizures and grand mal seizures. My last grand mal seizure was in 2000 or 2001. Since then, Ive been on medications and had my seizures pretty well under control. I went all those years with no grand mal seizures, but then last year when I had my first VEEG, I had simple partial seizures. Seizures Ive never had before. Once I saw what was going on, I started to ask questions to my dr, like why is it that I havnt had these kind of seizures before and now these are happening? My dr explained it to me like this.... as we grow, our brain changes. Sometimes our brains can outgrow the seizures, and sometimes the brain changes to form new seizures. For me, my dr believes I may have outgrown the grand mal seizures and now Im having simple partial seizures. But like any doctor, he cant tell me for sure. Ive gone from two seizure medications down to one. So thats always a good thing. Im taking Keppra XR. So far, things have been going good. I have to avoid any stresses or lack of sleep which for me, are two easy things that causes seizures to occur since going down to only one medication.

I'm sure there are alot of others on this board who can chime in too. I just wanted to let you know that everyone is different, some may quit having seizures and some have more than others. I hope the medication helps and your seizures are under control. :)
 
Hi 3rdgradeteach, welcome to CWE!

Epilepsy can be pretty mysterious and unpredictable. There's no way to know for sure why your seizures went into remission for so long, or why they came back. Generally, your seizure threshold isn't a fixed level -- it's different for different people, and at different times of their lives. The timing of your seizures might have to do with internal changes (hormones, metabolism, scarring on the brain, other age-related changes), or external ones (stress, environmental/dietary triggers), or some combination of both. It could be a cumulative effect building over time, or a sudden, short-term stressor.

Was there anything that happened over your Christmas break that might have been a factor? Fatigue? Unusual foods? More of something? Less of something? It's not always possible to pinpoint a trigger, but it can't hurt to look...

Best,
Nakamova
 
Hi 3rdgradeteach & welcome to the forum.

I had my 1st seizure when I was 9 months old & I took grandmal seizures quite regularly until I was 2 or 3. The doctors kept me on medications until I was about 7.

I went some of my childhood & all my teenage years seizure free & med free but in May 2002 when I was 24 I started taking seizures again which was out of the blue. I was taken to hospital after my Mum rang me & I wasn't making any sense. I had a grandmal seizure in hospital & the next day I was sent to a neurologist. The neurologist did an EEG which showed abnormal activity & he felt that I may have taken at less 3 grandmal seizures the day before (2 when I was at home on my own & the 3rd being the one in hospital). The neurologist then confirmed my epilepsy had returned & put me on Anti Epilepsy Meds.

After that my seizures continued but they were mainly auras & complex partial seizures. I had MRIs done which showed I had scarring on my left frontal temporal lobe & was diagnosed with left Front Temporal Lobe Epilepsy. My Neurologist tried me on 5 different epilepsy meds but none of the meds could completely control my seizures.

In November 2009 my Neurologist said there wasn't much more he could do & suggested that I think about having brain surgery & referred me to an epitiologist. I saw the epitiologist in June 2010 who felt I was a good candidate for surgery. I then had to have a series of different tests done to see if I was indeed a candidate for surgery. In November 2010 I was offered the chance to have brain surgery & in March 2011 I had a left side frontal lobe labotomy.

I haven't had a seizure since the surgery & am coming up to my 1 year seizure free anniversary.
The epitiologists, neurologists & the Neurosurgeon who did my surgery all believe the scarring on my brain was from the grandmal seizures I had as a baby but none of them can explain why I had gone 21 years without taking a seizure.

Our brain is a mysterious thing & unfortunately we don't always know what causes our seizures.
 
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When I started on this roller coaster ride with my daughter, I knew nothing about seizures. I have since learned that everyone has a seizure threshold. For some reason, those on this forum (and others) have a lowered threshold for multiple reasons. You were able to raise your threshold enough as to not have seizures for a number of years. Nakamova gave you some good examples as to what can lower a threshold.

I worry about a similar situation for my daughter who has been med free for about 3 yrs, and seizure free for a year now. Hormonal changes can shift things quickly for many women. Being very careful about nutritional needs has helped my daughter keep her threshold high.

Keeping a journal has been essential in helping me to discover ways to help Rebecca become seizure free.

Welcome to CWE I hope you find the support here to help you through this difficult time.
 
I completely agree with Robin about the journal. Since it was during a Christmas break, could stress have contributed to the seizure? That's a big factor for me.
Or, did a diet that was different from the norm contribute to it?
 
Thanks and question about being pregnant while on meds

Thank you for the quick responses. Since my intial post I have gotten info on my recent EEG and I have made a list of questions for my doctor. According to my EEG, my doctor said that I had a small abnormality so thats why he's keeping me on medicine. He also gave me some of the same reasons that you did for having a seizure after so many years. Its hard for me to figure out my trigger. As a teacher I tend to be under stress but at the time of my seizure I was out for Christmas so not sure if it was that. Also, I tend to be a healthy eater and I ate not so healthy fingerfoods at a Christmas event the night before. I had the seizure when I was 40 minutes into a P90X workout DVD. I work out a lot and had been doing P90X for a few months so not really sure if that caused it either. I have started to keep a daily log of my eating/workout activities so that if another one occurs maybe I can pinpoint the trigger. I also wonder if it was just a shift in my hormones as I age. I will turn 30 this year.
My husband and I have thought about trying to get pregnant with our first child later on this year. Just wondering if anyone felt uneasy about being on seizure medication while pregnant. How have your pregnancies been? My doctor said that I am on the safest medication but I would need to tell him before we plan to get pregnant I guess so he can up the folic acid.
 
I was taking Keppra and Carbatrol during all three of my pregnancies. All my children came out healthy and fine. But I would recommend going over this with a neurologist who will provide you better details about which drugs would be safe to go with, if you did get pregnant. :)
 
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