New to board looking for advise

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Regular Member

Date Joined Feb 2006
Total Posts : 131
   Posted 6/7/2006 5:59 AM (GMT -7)   
Hello.  Another member suggested I post on the Epilepsy site and it was a good idea.  I was diagnosised with Complex Partial Seizures with secondary tonic-clonic seizures. 
I was wondering if anyone has had problems with controlling their seizures with the medication?>  If so, what how long did it take to control them?  Thanks have a great day.  J
DX:  Migraine; SLE; Diverticulitis;HB;neuropathy and renal issues:seizures; sjogrens

Regular Member

Date Joined Feb 2006
Total Posts : 131
   Posted 6/8/2006 7:08 AM (GMT -7)   
I have been on trileptal for a few months now. I have also taken topamax previously but for a seperate issue, before getting diagnosised with siezures. Thanks for your input and I'm sorry for your loss.
DX:  Migraine; SLE; Diverticulitis;HB;neuropathy and renal issues:seizures; sjogrens

Veteran Member

Date Joined Feb 2003
Total Posts : 668
   Posted 6/8/2006 9:22 AM (GMT -7)   


IMO some ppl can be completely controlled with meds with some minor side affects, it all depends on the severity of the seizures, frequency of the seizures,  location of the seizure area in the brain, etc. everyone is diff.

IE: I was dx'd with epilepsy in 1979 and have been on Dilantin and Pheobarb ever since. I was even able to keep my drivers lisense until my next major seizure in 2002. Otherwise I have been living a perfectly normal life.

Also note that at that time there wasn't as much known about epilepsy and very few drugs available but to complicate things even more, I was also dx'd with Ulcerative Colitis and also take meds for that. As it turns out, Dilantin and Pheonobarb are the best for me for both conditions.
So YES, some ppl can be completely controlled.
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.

Regular Member

Date Joined Dec 2004
Total Posts : 93
   Posted 6/8/2006 11:38 AM (GMT -7)   


As RanMan says, people have had different experiences. I know someone who had a lot of seizures in his late teens but has them so well under control that it's been years since he even bothered taking any medication. A relief to him as he was a soccer keeper and said the double vision he occasionally experienced from the pills would make him let in a lot of goals. That, at least, was his story - he may just have been a lousy keeper. The best I've got through my treatment avoiding completely losing consciousness when I have a major seizure. Now I almost lose consciousness instead. What a result.

As a PS though: Neither this, nor the several petite mals I have on an average day, has stopped me living a normal and happy life. Or, I should add, no less normal or happy than it was before I developed epilepsy. And a lot of people have found the same thing once they've adjusted. I hope you can conquer your seizures with your medication but even if you can't, don't despair.

Take care,


Regular Member

Date Joined Feb 2006
Total Posts : 131
   Posted 6/8/2006 12:14 PM (GMT -7)   
Thank you for your advise and letting me know your experiences. Just one day at a time. J
DX:  Migraine; SLE; Diverticulitis;HB;neuropathy and renal issues:seizures; sjogrens

Veteran Member

Date Joined Apr 2005
Total Posts : 1529
   Posted 6/12/2006 9:09 PM (GMT -7)   
Hi Julia,
Glad to "see" you over here. Not quite as active as the lupus board, but you can get some good info here.

I started having what turned out to be partial complex seizures in 2003. I had no idea they were seizures at the time. I knew something was terribly wrong, but I was totally clueless that what I was experiencing was a type of seizure.

The third doctor I described them to (my current rheumie) is the one who told me I was describing a type of seizure and sent me to a neurologist. I was started on carbitrol first. That worked pretty good for me. However, after a few months my liver enzymes went high.

Next came keppra. I didn't have trouble tolerating it (it is metabolized thru the kidneys) but I wasn't having very good seizure control. Topomax was added and so far so good.

Like everyone has said, we are all different and what works for one might or might not work for another. But, in almost all cases, there is something or a combination of somethings that will work. Keep us posted.

xoxo emmie


SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Autoimmune Enchephalopathy

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