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As far as I know, I haven't had a seizure in over a year. It took me 11 months to feel like myself again after the last one. Then I had 3 months of feeling really good. Now all of a sudden the side effects (brain fog, memory, exhaustion, depression, word recall, etc.) are back. I'm trying hard not to feel like I'm backtracking and to view it as all part of the package. For those of you whose seizures are under control, do your side effects come and go?
@A MyEpilepsyTeam Member
I have two areas of damaged brain tissue (scar tissue, to be exact) on the underside of my brain. I broke two basal bones (the bones that hold our brains up) when I fell and landed on the back on my head two times, eight years apart. You may believe that taking only taking one AED is the right thing to do, but it doesn't work for me. I NEED those other meds because I have extra symptoms and causes. Since you are NOT a doctor, you also can NOT make this diagnosis for everybody.
@A MyEpilepsyTeam Member
I have never been on only one AED (I've had epilepsy since I was 15 following a traumatic brain injury/TBI). Just after my 24th birthday (just over eight years and 2 months after my first TBI), I suffered a second TBI. I have two areas of scar tissue in my brain. Both cause seizures----nerve tissue can not be regenerated but your brain doesn't know this so it tries to heal it by sending electric shocks to damaged areas of itself. That is why I have seizures. I take three AED's and I have a VNS. I haven't had a grand mal or even a petit mal seizure since the VNS was implanted in the late 1990's. And my meds do a great job!!! Three or four days per year, I will have simple partials, clustered in one day (anywhere from 1 to 5 in a day). I keep a notebook with all of my seizure activity written down for my neurologist. If you keep your seizure activity written down for your doctor, then you will get A+ care. Your doctor will LOVE that you are being pro-active for him/her.
Hi Nicole, my rain fog comes and goes, moodiness comes and goes, tiredness is always there, ( although when I’m outside working with my sister I tend to overwork and pay for it later) word recall is always there, spelling words (which should be easy) is a pain, I constantly double and triple check, on conversation forgetting what I’m trying to say or forget a word or what something is called is a pain, memory loss is always there seems worse on some days, remember such simple things is a pain, then when someone helps you out, I’m like uggh I should have known that. Sometimes I feel like I’m stuttering trying to pronounce something because I know what it is, it just doesn’t come out.
It’s all a pain in the rear, and I think it’s the meds for so many years and so many different ones just wrecks your insides.
@ Stac- what surgery did you have? You probably told me but I can’t remember, I’m going in Tuesday the 21st for my first one, I’m hoping to lower my meds too
Sorry for the long babbling, hope all are doing well and seizure free,💜
I think it depends on how you are feeling. It only took me 50 years to finally accept that side effects will come and go. And for the first time in my life i had a chance to go 3 months without a seizure. It felt strange because there was always a time when i can feel side effects but i try not think about them. That's just the way meds work. Some are bad, some are not so bad.
Mine come and go once in awile still any how I gone over 2 years years yet with no seizures. The are just light feelings when something may come up and I just need to relax and get it off my mind.
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