help - Epilepsy Message Board

tasha · 03-16-2001, 05:31 PM

I have been on tegretol for 8 years, and I still was having seizures once a month, so my doctor changed meds--and now I'm having seizures everyday. Has this happened to anyone else? It seems as if nothing controls the seizures. Is it difficult to find the right meds????? Will meds ever control the seizures? I so want to drive again. My seizures are complex partials.

Johnna · 03-16-2001, 10:57 PM

tasha,
I also have been taking Tegretol for 8 years with no success. I also have partial complex seizures from the right temporal lobe. I also took other medications with no control. Dilatin, allergic. Felbatol, allergic. Depakote and Tegretol together.
no luck! I went through a right temporal lobectomy in 1994. Unsuccessful. Still on Tegretol and having seizures about twice a month sometimes more. My doctor takes me off all meds thinking the seizures aren't real, long story. Anyway it was a disaster! Went to another neurologist and he puts me on a combination of Tegretol and Lamictal. I continue to have seizures. I'm extremely frustrated thinking nothing will work! He increases my Lamital and still having seizures! I'm going crazy by this time. Again he increases Lamictal to 300mgs which is a small dose but still on 500mgs Tegretol also. Guess what! Have been seizure free for over a year! My last one was new years eve 1999. Great new years resolution huh? Just came off Tegretol on new years eve 2000! Still seizure free! (knock on wood) And it only took 8 years to find the right med. Go figure? So maybe its soon to be your time too! I can drive! And maybe soon you can. Hang in there something is sure to work. Has your doctor tried any combinations of drugs? Keep your chin up. Best wishes and good luck! Johnna

tasha · 03-17-2001, 08:07 AM

Thank you!!! THANK YOU for your encouraging words. I just pray I can be seizure free. What do you think really did it--just time??? Right combination. I'm now on three meds--still some seizures. I really want to drive again. Thank you so much for your hope.

Johnna · 03-23-2001, 06:09 PM

Tasha, About your question about time. I really don't know. Just the medication I guess. What I'm hoping is that they actually went away.(but I won't hold my breath)I wonder what makes all the medications different? They are all for the same thing, right? I'm hoping if I remain seizure free for another year or so I can try coming off the Lamictal. Have you tried Lamictal? What meds are you currently taking? Has surgery been an option for you? Hang in there, I'll pray for you. Johnna

tasha · 03-23-2001, 06:32 PM

Johnna
Thank you for your prayers. I'm really scared and tired of this. I go back to doctors April 5th--I will go in for a complete check up--MRI AND EEG'S. I had a brain scan and thank goodness that came back okay. I want to get on with my life. I miss driving and hate these daily seizures. I just get confused a half hour after taking the meds. All three of them. Thank you