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Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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Hi Everyone,

First, I'd just like to say that I'm sorry that all of you have been affected by epilepsy. Whether you have it(36 years of it here) or are here because of someone you care about.... either way... stay strong!
I really like what I see here - the wealth of info is very impressive! It's great that we have a place where we can connect with and talk to other true experts on this subject.

Thank you so much for making this site possible!
 
Welcome HorseFetherz! I think you will find a lot of very informative people around here. You sound like you can ad a lot to the site with 36 years experience. What kind of seizures do you have?
 
Hi HorseFetherz, welcome to CWE!

Bernard has created a great "party" here at CWE. Glad you could join us! Feel free to explore all the different forums and post/vent/chat as the mood strikes.

Best,
Nakamova
 
Hello and welcome to the party! What could be more fun than a forum full of people with epilepsy? There are a few threads here that probably should be off limits to newcomers so they don't get scared away, but for the most part it's pretty family friendly, so to speak. :) Anyhow, good to have you on board!
 
Hello MAB! I hope you're right - I had my first seizure when I was 15, and will be 52 this year. If nothing else, am proof that you can live with it! :)They're partial-complex, grand mal, catamenial, and my MRI couldn't detect anything, so I'm not a candidate for VNS or surgery.
 
Hello Nakamova and Arnie!
Thank you so much for the warm welcome here - I'm not scared off at all! As a matter fact, I can tell right now, it's going to be hard to log out!
 
Hello MAB! I hope you're right - I had my first seizure when I was 15, and will be 52 this year. If nothing else, am proof that you can live with it! :)They're partial-complex, grand mal, catamenial, and my MRI couldn't detect anything, so I'm not a candidate for VNS or surgery.


Actually, you might be a vns candidate even if you don't have anything showing on a scan. I was a candidate for it based on having refractory seizures, mostly simple partial, some tonic clonics. I just got the vns implanted about a month ago and have had it activated for just over two weeks. I have a thread on here about it that you might want to look at. ("my vns experience" is what it's called. I don't know how to link to it from here but it should be easy to find.)

Cheers!
 
Hey HorseFeathers.

Welcome. Sounds like you'll fit in just fine here. I'm in a similar situation. I believe my E started at the age of 15. They started as partials, but I have had just a few tonic-clonic.

Welcome again, nice to meet you.
 
Welcome! I am here because of someone I care about (daughter) and continue to be amazed by the wealth of support and information!
 
Hi Horsefeatherz,
Welcome to the forum, as everyone else has said this is a fantastic forum with some great people & lots of info.

Actually, you might be a vns candidate even if you don't have anything showing on a scan. I I have a thread on here about it that you might want to look at. ("my vns experience" is what it's called. I don't know how to link to it from here but it should be easy to find.)
Arnies thread on his VNS
http://www.coping-with-epilepsy.com/forums/f23/my-vns-experience-22263/
 
Hello Horsefethererz welcome to cwe.What meds do you take take?
I was first first diagnosed when I was two years old it's been 50 years for me.
I've had a RTL,and a VNS I'm refractory.
 
HorseFetherz

Welcome to C.W.E. sit back and relax have a read and we will try help you as much as you help us.
 
Hi NSperlo, Chop456, CQ :), Belinda5000, and Fedup,

Arnie, what you said about the VNS is really interesting, and your thread about it is incredible, and even though it's early, I'm really glad to hear that this far it's working out. Thank you for providing the link, CQ. I had enough of epilepsy when I totalled my car on the way to work. No injuries, but not driving for 13 years is harder than almost anything, as I'm sure many of you know. I eventually told my doc I was willing to try anything, but not sit at home. So, he recommended me to a new specialist, then a battery of more tests...outcome? I was told that 'other than epilepsy, my brain was perfectly normal. There was nothing there to fix!' ...I was never so sorry to be 'normal' in my life, albeit relieved. They did reduce the Dilantin (to give my liver and gums a break), also on topiramate.
 
Hi Horsefetherz. I know how you feel about totaling the car and all that. That particular incident is what pushed me to get my first temporal lobectomy in 2008. Im 27 and started driving when I was 18 and I have totaled 3 cars and have been in 5 major accidents all caused by seizures. My 95 saturn sc2 survived 2 accidents which were caused by a seizure. And not driving does suck but having your parents and partner drive you around everywhere and watching people you love give up their time to transport you around sucks worse. Its both good and bad that your brain is "normal". I always referred to my brain as abby normal. (Young Frankenstein joke) Anyways welcome to the forums!
 
Hi urza3277, You're right - not driving does suck - a lot! Did the lobectomy improve your situation? I've never met anyone who's undergone surgery as such. You are a very brave individual! Five major accidents is too many, your guardian angels have earned a break...My brain really isn't 'normal', that was their nice way of saying they couldn't find any structural aberrations in the MRI. :)
 
Thanks HorseFetherz. Is Anyone's Brain Really "Normal? ;-) I will Keep you in my Prayers. I think you really just have to weigh the pro's and con's of surgery and trust your doctors. That is the big thing IMO. If you don't trust them to make the best decisions for you don't do it.
 
HorseFetherz,
Greetings. And wow, 36 years. I remember when I first showed up here I thought my 20+/- years was an incredibly long time to be dealing with seizures in ones life. But it didn't take long to see that so many other have had to deal with it longer than I. But then, 20 years, 1 year, it is all the same, kinda. Oops, I am running away from a welcome.
 
Hello and welcome. I am also not a candidate for VNS or sugery. I'm still doing the medication shuffle. Finding this website has been invaluable. Glad you are here.
 
Cadsgj-a fellow canuck! - and giveasmile - it's a pleasure to meet both of you! :) 20 years is a long time too, and it's not the same as a year because of all you've learned. The people in this forum have priceless advice and wisdom to share, and I'm sure every person here has at least one helpful tip to share with the rest of us. Sorry you're still getting your meds straightened out, giveasmile, that can be a very bumpy road, I hope you're not having a rough time with it.
 
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