Seizures caused brain damage personality changes

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


Re: Seizures caused brain damage personality changes

  It is not the epileptic seizures causing your  problems. It is the medication.  Even though you have stopped ,it takes a long time to get back to normal.  Most all epilepsy medications are known for  causing bad memory ,not being able to do simple math , "can't find the word" syndrome ,and over all there is  "depakote rage" and "lamictal rage" and keppra rage".  Basically these medications are your worst enemy but sometimes we don't have a choice.  

 I am 100% positive that your seizures cause no brain damage.  I was born with epilepsy and have had gran mal seizures since I was a teenager.(I am 37 now) As a child I had partials(staring spells & auaras) Yes the pain is unbearable and recooperating from a gran mal takes a while .Feels like i got ran over by a truck. But I also experience mood fluctuations before the seizure -almost child like (time travel). wich feels quite pleasant

     I'm not saying to stop your meds ,but it's almost like we have to choose to either be ourselves with intellect and suffer with seizures or take the medication that virtually "eats your soul" and makes us rage and stupid.

I recently stopped all my medications due to bad side effects wich made me just a shell of a person.I would rather have the seizures and shine. It's been 7 months since i quit meds and my memory and brain function are slowly but surely coming back. I'm starting to wonder if i will ever get it all back.  Also before the meds ,I had a very high IQ. almost genius level

Trisha ,If a neurologist told you that the seizures were causing the slow brain function ,she is just covering her ass. Basically lying through her teeth. Lots of neurologist are paid to push certain drugs and make money in doing so. do not listen to her. Most tonic-clonic epileptics are known for their high IQ levels and being very smart. Seizures do not affect this ;rather the opposite -we use more of our brain than the common person wich only uses 10% of their brain.

 I hope this helps you , Powerstomp

Re: Seizures caused brain damage personality changes

I would like to get off all my medicine how do I go about it?
I read your post and it makes a lot of sense to me. At 2 I was diagnosed with fatal epilepsy, I don't even know if that is a real condition. In any case me listing all the medications I have been on would be worthless as none of them have changed the fact that I still seizure.
I don't even mind the epilepsy, its the medications that i have grown to dispise over the years. Especially the neuro's that justify my use of them.
I am in australia so there is not many epilepsy specialists here, I don't even know anyone apart from myself that has epilepsy.
Any information you could give me on your experience would be much appreciated.

my email is

Re: Seizures caused brain damage personality changes

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

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

  From Powerstomp :

   Trish I don't want to sound like a broken record. But I still insist it is the meds that are causing the memory problems and slow brain function. The thing is ,when you start a med ,it takes awhile for those side effects to come into play.(even after you have stopped)  I'm afraid that after you quit the 1st med ,the side effects were still on the way to mess up memory. The clarity you spoke of after starting again was the clarity from stopping medication earlier and just a coincidence you had started again.  All these side effects have a time delayed reaction wether it's coming or going. Most of the time it takes months -either way.

However ,there is a temporary "clarity" when starting a new medication.It is more of a sight and feeling from the medication numbing your depression. But this "clarity" should not be confused with memory & smarts. When I first started depakote ,I loved it.But after a while ,I was oblivious to the changes it was making to me.It ended up knocking down my natural defenses my brain created for my bi-polar depression and sent me into a rage.

  Please do not confuse cloudiness with smarts. They are 2 seperate things. While my IQ is sky high,it's all i can do just to get out of bed and function because of my depression. Epilepsy on it's own can cause you to be withdrawn ,moody ,and not being able to function in day to day life.But it usually does not mess with your "smarts".

   Not all meds affect us in the same way as far as mood is concerned. However the rage is very common in those 3 meds I listed the other day. Alot of today's epilepsy medications are prescribed for both epilepsy and depression wich alters chemistry in the brain.Most people don't realize that mood and perspective has a physical source.(brain chemicals and the neuronet)

      I really would like you to find another neurologist and get a second opinion.

Re: Seizures caused brain damage personality changes

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

Re: Seizures caused brain damage personality changes

I can only tell you about what happened to me. My dr gave me a prescription of Ativan if a sz started. It stopped the szs and also made me fall asleep. One day I was with friends. We were going to a birthday party with a bunch of other friends. I had a sz but didn't take the med. Then I had 3 more. They were small & only for a few min. Then I had a big one. It was a status epilepticus - meaning a seizure that won't stop. It was intersting - I was able to walk like a crab (is what my friend told me), and communicate by action -  meaning getting med card, no talking.  Before we went to the hospital I gave the BD card to the BD girl. I was out of it for 3-4 days. I only remember being awake a couple of times.

What I'm trying to say is to stay on your meds. I was still on my meds when this happened. The problem was that I didn't take the rescue med after the second sz. I would have slept and the szs would have stopped.

Talk to you dr about possibly changing the med if you still have these side affects after several months. You need to give it a chance. I understand the problems with side affects. I almost lost my job once because of some of my meds, but my new supervisor rescued me. I always thank god for her. 

Good luck - Diana :->

Re: Seizures caused brain damage personality changes

Well i am brought to this discussion because i fear i am getting worse with my seizures. ive had them since i was 12 (im 19 now) i am not diagnosed becuz when i went to the hospital only once for it..being rushed there from sleeping at my friends house at age 14 he was scared n i was unconsious so i dont blaim him. But when my father went to the hospital he swore i must of been doing drugs. Plus my docter at that time did not wanna diagnose me till i came into the hospital again after having another one. Well i was pissed off at my fathers acusation i didnt tell him. i after once in a while having my seizures it boosted to having them once or twice a month then would decrease in numbers for a while. NOW these past few weeks ive been having them almost dayly..n also in my sleep. So since i am not on my fathers insurence any more im about to get a medical card in 2 weeks finally to go get what i need done about it. Then soon see a neuro. Im starting to have weird twitches..almost like the feeling in ur head u get when ur getting a coldchill..that instant muffled fog rush in ur head then i twitch. Days when that happends i find it hard to say things right, i stumble over words n i mess up alot on sentences n cant focus like i used to.

 can any one tell me if i do have some kind of epileptic kind of seizures? ill explain them..

At first i get this weird feeling usually alittle bit before hand..then suddely i get shakey alittle..then my nerves shoot up and my heart rate increases, next is my eye sight..goes to crap..then hearing after as well. i start feeling faint, hard to focus on things, every thing around my seems slower then usual. As it gets that far my heart is pounding and it gets very hard to breath and n im shaking frantically. usually at this point i fall over n im on the floor..occasionally when it gets to this point my eyes rolled in the back of my head and then i am incoherent for a while.

things ive noticed after the passing years that hav gone by with it being not treated is..

i cant get too happy, to angry or sad, i hav to sleep a decent amount of hours, i cant drink most energy drinks, and strobe lights dont bother me far as i know n a few other things. BUT most of the time i still dont knw why i have alot of them. N what scares me most is now they all of a sudden hav become frequent the past 3 weeks.

n e idea on this? if so reply to this, or email me..