Hi Everyone, this is my first post on this forum. I have been involved in the Cavernous Malformation Support Network and feel that it is time to branch out to get down to the real issue for me – seizures.
I suppose all of us can write or say, to one degree or another, “epilepsy has changed my life.” I certainly can join in that chorus. The frustration factor, however, is growing. I have been to Emory and Vanderbilt, which are probably the top hospitals in the Southern United States for consults about anti-seizure meds/seizures/epilepsy. I have also had Cyberknife Surgery at UAB and Surgical Resection here in Chattanooga, TN. The seizures persist. Even after the Vanderbilt consult which was to come off of the Vimpat and go up on Lamictal, the first evening of following the Neurologists’ (plural) instructions, BAM, a nocturnal hypermotor seizure.
My question is this – are seizures to be expected in this medication readjustment time? In my particular case, I am coming down slowly from the Vimpat (300 mg, 200 mg, 100 mg, 50 mg) and am slowly increasing on the Lamictal in order to get to an ideal dose of 600 mg. I also found out at Vanderbilt that the combination of Vimpat and Lamictal is not healthy. Ugh!
Any wisdom? Any encouragement? Any similar stories? Thanks, George
Hello George. I'm sorry I can't answer your question as when I and my Neurologist were trying to get my medication "right" to control my seizures, I was still having seizures. However, when he gave me Zonegran 400mg daily plus 150mg of Vimpat, the seizures stopped! My seizures are now under control. I still have one occasionally but that is usually if I am under a lot of stress. I had a craniotomy, during that, I had a massive bleed and had some brain tissue removed, so have brain damage,, so I will have meds for the rest of my life. Could be worse though! :) Take care my friend!
As of today July 16, I am down to 50 mg of Vimpat and up to 500 mg of Lamictal XR (300 morning and 200 night). Keep me in your thoughts and prayers. Write me some words of encouragement if you can. I will report back in later regardless of what happens tonight. Thanks, George
Hello George. YOUR message is encouraging, as you have come down to only 50mg of Vimpat per day!! I am so very happy for you and I also hope that your seizures have stopped! Sometimes, it just takes time to find the correct mix my friend. My prayers are still with you George; stay strong and NEVER give up!! :)
Another "breakthrough seizure" about one week ago. Since then nothing. Off Vimpat completely and up to 550 mg on Lamictal XR according to the Vandy neuro's instructions. Watch and wait. Nights are not good for me but every night without a seizure is a victory. Thanks for writing.
Way to go George!! :) Great news my friend. I am so happy for you, I am doing the "Happy Dance"! Hopefully, you will be able to sleep eventually as well. So great to have such a positive attitude...Yeah You!! :)