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cawhitern

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Hello everyone,
This is my very first post as I just happened on this site and I've had epilepsy since 1976. Luckily, I've been very well controlled on Dilantin and haven't had a seizure in several years. I've been super lucky; seizures are rare, and have hardly had any effect on my daily life.
I was surfing the internet looking for some info on switching from Dilantin to Keppra. My neurologist suggested the change due to concerns about bone loss and brain stem problems. I'm in my mid 50s and female, and balance problems and weak bones don't appeal to me. I must say, you all seem to be very well informed about your seizures and medications. (I'm an RN and I wish all my patients were like that!)
So, hello and thanks for any input!
 
Hi! I've been on Dilantin since 40+ years. Because of it, my Grand Mal seizures have been under control for well over a decade. Its allowed me to lead a quite wonderful life. I do know about all the potential side-effects but I have a the best doctor who watches out for all the side-effects. I have had balance problems because I tend to over-dose every once in awhile. But we just readjust my dosage and I'm back to normal again.

My doctor said he wouldn't have me switch to a more modern drug since the Dilantin is keeping me seizure free. (Doc is big on quality of life, yeah!) From what I've learned from the good people here is that all AEDs have side-effects and it just depends on if you can handle them. I would never go on Keppra given the "Kepprage" side-effect.

I've also learned that different drugs work differently for different people so there is no telling if you will be better, worse or the same on a different drug. It's trial & error and I personally don't like the idea of being a guinea pig or the worry that I may have a seizure.

Like I said, we all are different and so need to make our own decisions.

Hope it all works out well for you. And welcome to CWE, there are awesome people here with so much information and so much love that it is a wonderful place to be!
 
nice to meet you I am happy that you have your seizures so well controlled
 
Hi cawhitern, welcome to CWE!

I switched off Dilantin as well, due to problems with gum overgrowth and worries about potential bone-thinning. I tried Zonegran at first (thumbs down), and am now on Lamictal (seizure-free 6+ years). I haven't tried Keppra. It has a rep for causing moodiness and anger, but it also works fine for many people -- hopefully yours will be the latter experience. One Keppra advantage is that you can ramp up to a working dose fairly quickly (as with Dilantin).

Best,
Nakamova
 
I must say, you all seem to be very well informed about your seizures and medications. (I'm an RN and I wish all my patients were like that!)

Welcome to CWE, cawhitern,

As a patient with refractory E, I feel I need to be well informed about my seizures and meds as there are many types of seizures and meds. What works for most, hasn't worked for me, so I have to do what I can to stay informed.

I took Dilantin many years ago and it didn't do much for controlling my seizures. So we moved on to many others. Now I take Keppra along with Topomax. As said, Keppra is well known for "rage" and moodiness, but for me, so is temporal lobe epilepsy. The moodiness/depression was once a factor for me, long before keppra was on the market, but now, getting my seizures controlled is the main factor. Keppra is what helps with control of my seizures.
 
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Thanks for your welcome messages and great advice! I'm going to see a new neurologist soon and thanks to the great info from this site I have lots of questions about Keppra and some other meds. Really appreciate your feedback!
 
Cawhitern:

I'm a 58 yr old male.

I too have had a "seizure condition" (epilepsy) since 1979.
I've been on dilantin and pheonobarb ever since and my seizures are 95% under control.

My neurologist also says that if I were to change MEDs, I could risk brain stem damage or have a seizure twice as bad as normal. (if it's not broke, don't try to fix it)

I have some balance issues but overall, I feel pretty good and have a normal family life.

Re: Bone density ~ I take calcium/magnesium. That seems to do the trick.

Your post is the first one that I've read that addresses the BRAIN STEM issue.
I've been posting that info. for years but nobody took me seriously, so thanx for that.
 
Hi all!
Just saw my new neurologist and she was great. I've made the decision to try Keppra XR and see how I tolerate it. If all goes well will ease off Dilantin. I told my husband I can use Keppra as an excuse if I lose my temper. He's not buying it.
 
Good luck with Keppra and keep us posted.
 
hello and welcome to cwe.
I was on Dilantin36 years and it erased my memory.
my memory improved 95% after I came off it.

There were only 6 drugs to pick from back in the 60's and 70's.
 
Thanks for the info. I'm really kind of excited to try Keppra. My memory is just one of the things Dilantin has affected adversely. And my gums, and my balance, and my bones. I bruise like crazy. Can't sleep. Tremors.
 
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