ADVERTISEMENT
samoahmad

TLE 1 week fine 3 weeks terrible advice please

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

Hi, It's hard to help when we don't know too much about you...  are you knew to Epilepsy?  are you female, your age and 500 Keppra once a day or twice a day?  If this is a starting dose than you maybe need more and need to talk to your dr. quickly about all this break through siezure activity.  If you are a women than I have herd that your monthly cycle can realy have an effect on how you feel and how effective your meds regulate your siezures.  I'm too old for that problem.  Sometimes its just the meds aren't a good match.  I spent a year increasing Keppra until I was up to 2000 mgs twice a day and kept getting more and worse siezures.  We stoped it and My siezures were easily regulated on a low does of topomax.  So talk to your doctor please.  something doesn't sound right..  good luck  sally

Re: TLE 1 week fine 3 weeks terrible advice please

Many people on Keppra have nasty side effects.  I think you should keep a diary of daily meds with behavior, feelings, reactions.  Then take this to your neurologist and if he has any brains at all, he'll switch you to another drug.

Drug therapy is really a crap shoot.  Everybody has different chemistry and what works for some, doesn't work for all. In addition, you might switch to a new drug with adjunct therapy.  (A second anti-epilepsy drug being added to the mix.  For example, I take Lamictal and Klonopin, but it took awhile to get to the right combination.)

For information about specific drugs, click on: http://my.epilepsy.com/epilepsy/seizure_medicines

Also, you can find a lot of helpful information by clicking on the orange bars to the left...     Phylis Feiner Johnson www.epilepsytalk.com

Re: TLE 1 week fine 3 weeks terrible advice please

Thanks for your replies,

I am a 29 year old male. At the age of four I had a grand mal seizure, till the age of thirteen I would get a grand mal seizure once every 2 years or so. I was on tegretol at the time. At the age of sixteen my docter took me of tegretol and I had no further seizures. At the age of twenty one I got what I believe to be a seizure but I stayed concious. Then for the next 5 years I was getting seizures but would never lose conciousness, but at the time I did''nt know about temperral lobe epiliepsy...Finally after numerous docters and phschiatrists, and diagnosis....They told me I had TLE but nothing showed on an EEG or CT scan. So my docter put me on keppra 500. 750mg a day, I feel fine for a while then terrible for a week or so. The past 8 days have been hell for me, I have nt had it this bad in a while now.  my docter told me to up my dose too 1000 mg a day, so I have been doing that for 3 days now, still not feeling better.  I would like to know what people with TLE go through and for how long it lasts also if Anxiety becomes very bad.  any info would help, please share your experiences with me

Re: TLE 1 week fine 3 weeks terrible advice please

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

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

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