Hello. Thanks to you all for helping out. My doctor wants to try, as Drug. No. 2, one of the "new" antiepileptic medications. Hopefully it won't be as liver-toxic as Dilantin might have been (my liver enzymes have been going up, and besides, Dilantin makes me feel awful). As well, seizure control has been spotty. From what I have read, these new medicines include Keppra and Gabatril, etc., followed by Trileptal, Lamictal and Neurontin. The thing is, he wants me to use the new drug alone after a while, which worries me. ... I don't know how I will react to these new drugs and there are not a lot of data around for the newest medications, right? Keppra is also quite pricey. However, he said of Dilantin, "We know a lot about it, but a lot of what we know isn't good." I also don't know how switching to the new medication right before my video EEG stay will affect the seizures. I guess maybe he will wait until after, but maybe not. He seems to want to ditch the Dilantin as fast as possible. Any help would be appreciated. I am sure all of you (or most of you) have had drugs that have failed, so I am curious to learn from your experiences. I mostly have complex partial seizures, some, they think, that secondarily generalize. I'd say 95 percent of them occur at night. Thanks.
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All of us has an angel, if only we know where to look.
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All of us has an angel, if only we know where to look.
Your doctor should bring you up on the new one first, and let you adjust, and then SLOWLY bring you off the old, unless they interact somehow. Unless there is an urgent medical reason it is better to go too slow than too fast I think. I learned that lesson on a couple of meds.
I've got some good news & some bad news for you sekharp.
Dilantin is a bad drug on the liver as you know, so it's good you're getting off of it. I had been on Nuerontin for many moons along w/ dilantin & it never really helped. I believe Neurontin replaced my Tegretol. The good news you've been waiting for, is a year ago Keppra replaced Neurontin & although I am still on dilantin now I had only one minor seizure last year. I had averaged btw 5-6 a year. I am currently weining off dilantin gradually.
The bad thing I noticed about Keppra for about the first month was my short fuse. Keppra is known to cause suicidal thoughts & depression. Don't freak out though. This Keppra is by far the best drug I've had in 12+ years & it does NOT go through the liver. The kidney I believe, which has not bothered mine yet in a year. I hope Keppra works well for you as it is for me. http://www.healthboards.com/ubb/redface.gif) Keppra is about $120.00 for a months supply if taking 2000 mg.
Thanks for your suggestions. I called my insurance company and luckily, it does cover Keppra. As well as Neurontin, Lamictal and Trileptal. It does not cover Gabatril. I am waiting for my doctor to call me today, maybe Monday, to let me know which drugs he might prescribe. As well, I want to know whether he will order sphenoidal electrodes during my video-EEG stay. Thanks again for your help. Be well.
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All of us has an angel, if only we know where to look.
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All of us has an angel, if only we know where to look.
If this is your first VEEG, sorry I do not recall, he probably will not use Sphenoidal the first time. I would ask him about the new med right before the VEEG. He may take you off all meds while there to see what he can record. Often they will do this then let you leave on the new med.
Med changes can be so frustrating, it takes several weeks to adjust to the new one and feel like the old is out of the system for us, anyway.
You might look into Zonegran as well. It is often prescribed for Complex partial with secondary generalization,(my son was on this one and has the same seizures.) Some literature says it is not for monotherapy, but we used it that way and I know others that have as well. Hope you find the right med for you with better control....
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mom of 2 teens who have battled seiuzres.
This is my first video-EEG study. And I am nervous. Today I called my doctor to give me names of some of the drugs. He said we need to talk them all over first to plan treatment. I also asked him whether he was going to use sphenoidal electrodes. At first he said yes, but then said no because he didn't think my seizures were due to temporal lobe epilepsy. Then, he asked me if I wanted them and I said yes, because I want the most complete study possible. ... I have written down the information you gave me. .. Thanks. There is so much to learn.
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All of us has an angel, if only we know where to look.
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All of us has an angel, if only we know where to look.
Hi,
I went from Dilantin to Carbatrol (because I was too fuzzy headed on Dilantin.) Now my new Epilepsy Specialist putting me on Lamictal VERY SLOWLY. The goal is for me to try weaning me off of Carbatrol this coming summer. The Doc wants me to try being on just one med. We'll see! Lamictal is very expensive, but I haven't had a seizure since I was within the therapeutic range. Thankfully I have insurance that pays most of it! Good luck, Kathy
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When Mamma ain't happy ain't noone happy!
The "new" medications 
My doctor wants to try, as Drug. No. 2, one of the "new" antiepileptic medications. Hopefully it won't be as liver-toxic as Dilantin might have been (my liver enzymes have been going up, and besides, Dilantin makes me feel awful). As well, seizure control has been spotty. From what I have read, these new medicines include Keppra and Gabatril, etc., followed by Trileptal, Lamictal and Neurontin. The thing is, he wants me to use the new drug alone after a while, which worries me. ... I don't know how I will react to these new drugs and there are not a lot of data around for the newest medications, right? Keppra is also quite pricey. However, he said of Dilantin, "We know a lot about it, but a lot of what we know isn't good." I also don't know how switching to the new medication right before my video EEG stay will affect the seizures. I guess maybe he will wait until after, but maybe not. He seems to want to ditch the Dilantin as fast as possible. Any help would be appreciated. I am sure all of you (or most of you) have had drugs that have failed, so I am curious to learn from your experiences. I mostly have complex partial seizures, some, they think, that secondarily generalize. I'd say 95 percent of them occur at night. Thanks.
The Doc wants me to try being on just one med. We'll see! Lamictal is very expensive, but I haven't had a seizure since I was within the therapeutic range. Thankfully I have insurance that pays most of it! Good luck, Kathy
