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Seizures caused brain damage personality changes

Mon, 11/24/2008 - 12:15
Here is my background (important for the question)-
I was diagnosed with complex seizures about a 1.5 years ago. At that time I was having many per week. I was started on Lamictal which I took for about 8 months- it controlled my seizures very well. I stopped taking my meds because of repeated kidney issues (which my neuro refused to acknowledge were related). I stopped seeing the neuro and stopped taking the Lamictal.
At first I did just fine without my meds. Two months into being med free I started having the complex seizures again. I figured that the seizures were less disturbing than the meds...besides I had a strong aura so I felt safe enough. Then the grand mals came out of the blue.
I have NEVER experience anything more horrible. My entire body hurt for days, and my eyes ached so bad. I felt like I was in a fog for a day or two. I still didn't go to the neuro at first..I knew she would report me and I was only having them at night when my husband was home. He isn't so good at describing things. At first he was saying that I had a seizure and then was twitchy for about 30 minutes (normal for me). Turns out that I was having a few GM in a row.
After about two months I realized that I was having trouble finding simple everyday words- spelling became horrible. My mind wasn't crisp anymore...even simple tasks were more difficult. I felt like I had list 30+ points on my IQ. I ended up in the ER after my husband refused to take the rages that followed the seizures for a day or two after...I went from nice to a raging bit%h.
My new neuro started the Lamictal again. She upping the meds up to 400 mg and I am feeling pretty good. I let her know my concerns, my mental clarity, and crispness is still gone. I feel stupid now. She said that I probably have brain damage. She said that happens when people stop meds and seizures generalize. I asked if over time it will get better. All she would say is that if I stopped the seizures it wouldn't get worse.
Anyone else with mild brain damage from seizures? If so can you tell me why, and if it has gotten better or worse with time?
Thanks- Trisha

Comments

Re: Seizures caused brain damage personality changes

Submitted by rikk on Tue, 2008-11-25 - 19:43
meds can cause problems with thought, anger/rage, and other changes that include short term memory problems.  What the neuro is telling you is true.  the seizures can cause brain damage.  By the story you relate it started with complex partial.  the thing about that is that it will usually generalize across the frontal lobes of the brain.  that is one area that effects, impulse control, emotions(not the only one) and short term memory.  All of these things can equal personally changes.  the idea that it is just your meds is difficult.  the worst of what has happened occured after you had stopped the meds for a while.  the meds i take are the infamous...keppra, lamictal.  max doses of both.  side effect changes in behavior because of toxic keppra.  keppra rage.(something i was not aware of until recently)  their are no tricks to seizure control.  meds, rest, diet, exercise, surg.  prayer if you beleive.  For my problem the neuro and I deceided to try using a vagal nerve stimulator, been using for 2 weeks already making a difference.  it is not stopping the seizures, but it has for me decreased the frequency from10/week to 5-6/wk.  at one of those is grand mal.  one of the other thinngs that the VNS is being used for is depression.  do some study and talk to the doc.   I have a good ideal of which i speak.  i have had seizures for over 40years, have been on most every med out there, and now the VNS. Seizure types,  simple partial, complex partial, generalized, and grand mal, right temporal, and so on. to many spots on the brain for major surg.  not worth the risk.  hope it helps. e-mail if you wish.  rikk

Re: Seizures caused brain damage personality changes

Submitted by Starlight3 on Tue, 2008-11-25 - 20:05
Thanks for all the input. It helps to know that others out there know what its like- means I am not crazy :)
While I think that meds can have a very negative effect that isn't so much my problem. I felt decently clear headed when on Lamictal before...then I went off for many months. Because the seizures we so out of control (complex turning to grand mal) I started meds again.
 During the UNMEDICATED time I felt so muddy headed, crappy, with HUGE mood swings almost daily. During the UNMEDICATED time I had a lot of trouble finding words, spelling, even making sense half the time. I feel clearer headed now that I am back on meds- much more like myself. However I still feel like I lost serious IQ points. I know I was more intelligent BEFORE epilepsy...with or without meds. I think that is why the neuro said mild brain damage. Is there anyone else that has been told this?
Thanks- Trisha (I am new here- does anyone know how to make the paragraphs break?)
Thanks for all the input. It helps to know that others out there know what its like- means I am not crazy :)
While I think that meds can have a very negative effect that isn't so much my problem. I felt decently clear headed when on Lamictal before...then I went off for many months. Because the seizures we so out of control (complex turning to grand mal) I started meds again.
 During the UNMEDICATED time I felt so muddy headed, crappy, with HUGE mood swings almost daily. During the UNMEDICATED time I had a lot of trouble finding words, spelling, even making sense half the time. I feel clearer headed now that I am back on meds- much more like myself. However I still feel like I lost serious IQ points. I know I was more intelligent BEFORE epilepsy...with or without meds. I think that is why the neuro said mild brain damage. Is there anyone else that has been told this?
Thanks- Trisha (I am new here- does anyone know how to make the paragraphs break?)

Re: Seizures caused brain damage personality changes

Submitted by cassiedee on Wed, 2008-11-26 - 18:36
hi there keep coming back to this site its made me feel better knowing im not alone even though i feel like it still when i am not on here stay on your meds don't stop unless you are having a reaction contact your doctor if you are i wish you well i am new to this very new and i am still embarrassed when it happens to me mines a brain tumor that is causing the seizures (mine are blackouts thats what i call them) take care

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