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House742

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Hello all! I'm really glad to have found this forum as I've been struggling with epilepsy and (even worse) the side effects of the AED's for the past 11 years. My wife got a rough entrance into married life as I had my first epileptic seizure on our honeymoon and we've been battling with it ever since. I was diagnosed as a VERY young child after a single seizure and on medication for years, but taken off the drugs by about age 8 and it was all dismissed as a one-time event. Since 2003, I've had numerous Grand-mal seizures and frequent partials. I'm a big guy (about 6'5" and 250+) so my doctors have ALWAYS had to over-dose me to get the levels of drugs where they need to be. This has made it a disaster trying to deal with side effects, especially as I've been dealing with this while trying to raise three kids while working my way through grad-school! Right now I'm on 400mg Zonegran and 300mg Vimpat daily and REALLY want to get rid of the Vimpat. It's starting to mess with me more and more and just makes me feel like someone else is living inside my head! Anyway, it's great to hear the stories of others who are out there going through similar experiences since often it can be a lonely feeling. I've been on numerous different drugs over the years and I'm happy to answer any questions I can for anyone. I'd also love to hear from anyone who is on this particular combination (Vimpat/Zonegran) to find out if you've had any similar interactions with the two.
 
Hello and welcome! I can relate to a lot of what you're going through. I had my first witnessed generalized tonic-clonic (GTC or grand mal) seizure less than 1 1/2 years after I got married (I've been married 34 years now!). It was then that I was diagnosed and put on meds, although I probably had had epilepsy much of my life, but it had not been recognized. Any GTC szs I had probably would have happened at night, and my partial seizures might not have been recognized as such. As you are doing, I did college, grad school, raising kids, career, etc. all while dealing to a certain degree with my very poorly controlled partial seizures (both simple and complex). I have only had 5 GTCs in all that time, but probably close to 10,000 partial seizures and heaven-knows-how-many subclinical seizures. I've been on Dilantin, Lamictal, Keppra, Zonegran and Trileptal. None of them have done a good job with seizure control, and Keppra, Zonegran and Trileptal had such bad side-effects for me that I couldn't continue taking them. All that said, I've had a pretty darn good life overall. In the past 6 months or so I've gotten tired of the cumulative effects of the seizures and the meds, and I'm not getting any younger, so when I discovered the option to have VNS (Vagus Nerve Stimulation) I decided to give that a try. (I found out about it on my own and from here. I don't know why my neurologist never even mentioned it to me, since I'm a really good candidate for it). I had my implant activated just over a month ago and I'm quite happy with it so far, even though it's still really early in the game.
Well, that's it in a nutshell. I encourage you to look at my thread entitled "my vns experience" ( http://www.coping-with-epilepsy.com/forums/f23/my-vns-experience-22263/ ) if you would like to know more about the vns and learn more about my amazing (or not) life! :) Again, welcome and good to have you aboard.

Cheers! Keep us posted!
 
Hello House742,

I've had epilepsy50 years and so does my husband.
Has your doctor ever suggested the VNS (Vagus nerve Stimulator)
I'm refractory and I've been on 23 different medications myself. Have you told your doc you want to try other drugs? If the Zonegran and Vimpat aren't working and your doc doesn't listen you might need to change docs.Have you gone to any university/hospitals?
I had brain surgery in 1982 in Montreal,Canada.what meds have you been on? I'm allergic to 5 and med resistant to the tegretol family except for the original Tegretol.
 
Thanks for the words of encouragement and the advice guys. I've definitely not done any research into the VNS, but I've been on numerous other drugs. I've probably been on a total of 8 or 9 total. I was on Dilantin for 3-4 years and had great luck with it until a neurologist decided that "he" didn't like the drug and took me off of it. I've had to jump around from doc to doc quite a bit because of my schooling and now because of my job. I'm working with an epileptologist in Dallas, TX, but I'm not sure I'm getting his full attention since I'm over an hour away from him and my seizures are relatively infrequent. I don't really bother him much until I have a full-blown seizure since I prefer him not to mess around with my drugs any more than is absolutely necessary. I kind of feel like I need to rock the boat a little harder to get his full attention this time though. There really are no good neurologists (and certainly no specialists) in the small town I'm now working in as a pastor. I'll definitely do a little reading on the VNS and try to learn a little more about that, though.
 
I'm glad you have access to an epileptologist. I am going to be seeing one (finally!) and I wish I would have gone decades ago, but I really didn't know that there was even that specialty until maybe 5 or 6 or so years ago.
VNS is generally best suited for people who have refractory (poorly controlled or uncontrolled) partial-onset seizures who have tried at least 5 different meds without success, either because of poor seizure control or unacceptable side-effects. VNS may not eliminate the need for meds, but it can help reduce the meds you take and reduce the number and severity of your seizures. Its efficacy increases over time since it actually makes physiological changes in your brain.
Onward!
 
Hi House742, welcome!

I hope you are able to make headway with your current neurologist. Remember, they're supposed to be working for you!

I was on Dilantin for 3-4 years and had great luck with it until a neurologist decided that "he" didn't like the drug and took me off of it.
Click to expand...
Dilantin's not the newest med on the block, so many docs are dismissive of it. But if it controlled your seizures well, and any side effects were tolerable, then don't be shy about asking to try it again -- especially if the Vimpat and Zonisamide aren't really doing the trick.

You may find helpful info at the link below. It will take you to CWE threads that discuss Vimpat. http://www.coping-with-epilepsy.com/forums/tags/vimpat.html

Best,
Nakamova
 
Hello and welcome!

It is so hard for people to drug(s) and dosages that control their seizures... so I don't understand why they took you off what was working well for you?

Is there any way for you to go back to the doctor who prescribed what worked for you?

I'm having trouble finding something that works, and that I'm not allergic to, so right now I'm the Vimpat alone. It isn't messing up my head but I think I read somewhere that others have had those kinds of problems with it. My only problem is an irregular heartbeat from it.
 
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