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TLE 1 week fine 3 weeks terrible advice please

Sun, 04/11/2010 - 15:48

Hi,

I am on keppra 500, I was wondering if anyone can help me ...I go threw weeks of feeling not great but ok, then I go threw 1 week of getting simple partial seizures anxiety etc. I was wondering if thease patterns are normal with TLE and simple partial seizures does anyone else have this, If you can please share your experiences with me....How do your seizures occur and for how long etc.....And does anyone else feel a change of personality and charcter when they go threw a period of seizures?  I feel less confident is what bothers me the most I spaced out, and cant talk to people always loo at the ground...thanks in advance

Comments

Re: TLE 1 week fine 3 weeks terrible advice please

Submitted by sally richards on Mon, 2010-04-12 - 12:52
Hi Again,  I to have TLE,  I had terrible Anxiety on Keppra and my seizure got worse.  I even developed seizures I had never had before ( absence and focal)  also increased my seizures (partials) to 2-3x a week by the time I was at 2000 2x a day.  It took the 7 day v-EEG off all Keppra and No seizure to convience the Dr that they were being induced by the Keppra.  I'm not saying I don't have TLE and I don't get Partials put once every few months or month, or the hell I was going through was another story.  It wasn't his fault.  He was cleaning up from the mismanagment of another doctor.  Anyway do as Phyllis reccomends you will get a lot of info. on Keppra.  There is a group of people that sware by it and it works great for  and others find out very quickly that it is not a good match.  I wish I had found out sooner.  I lost 1 1/4 year of my life in a druged out seizing stupper,  in and out of the hospital...  a total mess.  The idiots were convienced it was my brain when it was the medication...  I am now feeling terrific  back to my old self. Even If you have to see another doctor.  Just see one quickly.  dont suffer.  Your medical care will only be as good as you advocate for.  Sally

Re: TLE 1 week fine 3 weeks terrible advice please

Submitted by samoahmad on Mon, 2010-04-12 - 14:59
Thanks for your comment, if I may ask what kind of seizures where you getting.  Before keppra, and are you still getting seizures now and what kinds, how long did they and do they last.....Thanks again

Re: TLE 1 week fine 3 weeks terrible advice please

Submitted by sally richards on Mon, 2010-04-12 - 16:30

My story is complicted.  Before the Keppra I had not been diagnosed with E.  For about 10 years or more... Can't rememmber... I had "Spells" of what I now know was an aura and gradual loss ot the ability to comunicate to those around me which on occation would lead to unconsciousness.  These would occure once or twice a year and I would end up in some ER sometimes...  Wrote it off to blood sugar... over excersize..  the heat,  typical excuses.  Finally I couldn't do it anymore.  They became too frequent.  We ruled out heart and Sugar.  So my GP did an MRI in Aug of '08 and found a Brain tumor.  I was living in NJ at the time.  Long story short During the pre-op work up the EEG foung the epilepsy "Partial complex seizures".  My tumor was a Base skull Meningioma, but was growing rapidly and was raping itself around my crainial nurves.  Anyway, I was put on the Keppra to control any seizure activity that might occure or be stimulated because of the surgery.  I had it done at Weill Cornell NY Preby. The surg. went perfect and I was talking and fine initially.  Then the seizure began.  A little at first so they increased the Keppra.  So the story goes.  Before long I was Cluster seizing for days and in the hospital for weeks.  (To be fair I was also on steroids for swelling) For a month I was regressed to about a 4 year old and had to re-learn to read and write.  I had complete expressive and receptive aphasia.  I didn't even recognize my kids.  Anyway it was 9 Months of Cognitive rehab at the Kessler Institute,  But I am perminantly disabled now and living in SC.  My new Epileptologist figured out the Keppra conection in all this.  The swelling was part to blame but Keppra kept it going and added 6 months of seizures I should not have had. 

 Now I am Seizure free for 8-9 weeks.  The last time I had one It was much like I use to have.  I feel the aura.  I know It's comming.  Almost like I watching my self from a tunnell and I'm in it.  My ears ring,  I get sweety,  my mouth is dry.  Some times I smack my mouth or think I am. Some times I see stars in the pariferal vision of the tunnell I try to talk and reach out but my body wont respond.  the light dims,  I will get better or not and loose awareness.  After I am tierd and usually sleep  some times I am nauseous and get sick, sometime diarreha. People with me say when I am out that my eyes role back and flutter, some times my hand jerks.  The team I have now have maped my brain has left Temporal lobe abnormalities which are the oragin or the seizure activity and it is complex partial.  so for what it is worth I hope it is helpful.  But I will never take cotico steroids and Keppra again....  good luck again  sally

My story is complicted.  Before the Keppra I had not been diagnosed with E.  For about 10 years or more... Can't rememmber... I had "Spells" of what I now know was an aura and gradual loss ot the ability to comunicate to those around me which on occation would lead to unconsciousness.  These would occure once or twice a year and I would end up in some ER sometimes...  Wrote it off to blood sugar... over excersize..  the heat,  typical excuses.  Finally I couldn't do it anymore.  They became too frequent.  We ruled out heart and Sugar.  So my GP did an MRI in Aug of '08 and found a Brain tumor.  I was living in NJ at the time.  Long story short During the pre-op work up the EEG foung the epilepsy "Partial complex seizures".  My tumor was a Base skull Meningioma, but was growing rapidly and was raping itself around my crainial nurves.  Anyway, I was put on the Keppra to control any seizure activity that might occure or be stimulated because of the surgery.  I had it done at Weill Cornell NY Preby. The surg. went perfect and I was talking and fine initially.  Then the seizure began.  A little at first so they increased the Keppra.  So the story goes.  Before long I was Cluster seizing for days and in the hospital for weeks.  (To be fair I was also on steroids for swelling) For a month I was regressed to about a 4 year old and had to re-learn to read and write.  I had complete expressive and receptive aphasia.  I didn't even recognize my kids.  Anyway it was 9 Months of Cognitive rehab at the Kessler Institute,  But I am perminantly disabled now and living in SC.  My new Epileptologist figured out the Keppra conection in all this.  The swelling was part to blame but Keppra kept it going and added 6 months of seizures I should not have had. 

 Now I am Seizure free for 8-9 weeks.  The last time I had one It was much like I use to have.  I feel the aura.  I know It's comming.  Almost like I watching my self from a tunnell and I'm in it.  My ears ring,  I get sweety,  my mouth is dry.  Some times I smack my mouth or think I am. Some times I see stars in the pariferal vision of the tunnell I try to talk and reach out but my body wont respond.  the light dims,  I will get better or not and loose awareness.  After I am tierd and usually sleep  some times I am nauseous and get sick, sometime diarreha. People with me say when I am out that my eyes role back and flutter, some times my hand jerks.  The team I have now have maped my brain has left Temporal lobe abnormalities which are the oragin or the seizure activity and it is complex partial.  so for what it is worth I hope it is helpful.  But I will never take cotico steroids and Keppra again....  good luck again  sally

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