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lovetypething<3

lovetypething<3

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Hi, my name is Jena & I have had epileptic petite-mal seizures all of my life. I have tried many medicines without any success. I will be getting the VNS, so if anyone has experience please let me know! :hello:
 
Hi Jena, welcome to the forum. :hello:

Make yourself at home here. There are several members here that have (or had) the VNS with varying levels of success.
 
Thank you! Oh thats great. I just read that readers digest article & I was terrified! This makes me feel a whole lot better!
 
:cheers:

Welcome to our home Jena. Hope you find great info here. I know you will find plenty of support.

:cheers:
 
Welcome Jena! I am sure that you will find everyone here is caring and always available to help out as much as possible. Best wishes!! :shake:
 
Welcome Jena --

You can search for mentions of VNS here using the search tab at the top. Good luck with the VNS, I hope it does the trick for you.

Best,
Nakamova
 
Thank you everyone for the warm welcomes! :D I will search for it thank you.

I hope I am able to get the VNS, my doctor has order a 96 hour video eeg which I will be getting this next week. We have never been able to catch a seizure on an eeg so I am hoping & praying that we catch one this time. If we don't my doctor will not let me get the VNS :( anyone know anything I can do to bring on a few seizures?
 
Hi Jena-
I am one of those who have had a VNS. It was put in, in 2003 and removed in 2004. Although the wires are still in, no MRI's for me , hope I never get sick. I had no luck, and had a bad experience.

This is my advice try EVERY medication in every combination possible.
I take Lamcital and Topamax now and can go months without a seizure. It took me a long time to find this as my answer. I wish I had done it before I tried the VNS.
Hind sight is 20/20

If you have any questions please ask.
Elisa
 
Hi Jena,
I'm Tom welcome to CWE. I too have a VNS, I have had a VNS since 98, I'm on my second one now and might be getting a third pretty soon. I haven't had much luck with it stopping my seizures all together but it has helped by making them shorter. Again so nice to meet you and good luck.
 
Is there a thread somewhere about getting small or large injuries during seizures and/or what to do when it happens?
 
lovetypething<3 said:
Is there a thread somewhere about getting small or large injuries during seizures and/or what to do when it happens?
Click to expand...

Hmmm, I"m not sure. You might want to try the "search" option at the top of the page (towards the right).
 
So I will be getting the vns tomorrow morning. I'm kinda worried/scared. Not sure why because I've had surgeries in the past I guess just the anesthsia scares me & the surgeon told me that sometimes it messes up the heart or something like that. Anyone have any advice on ways to keep my mi d off the subject? Or how to stop being scared/worried? :S
 
Lovelypething,

It's going to be okay <<<hug>>>.

The night before my last surgery I cleaned house. It got my energy out, got my house ready for my return. Didn't take my mind completely off it, though. Do you have a friend or two who could take you out to eat tonight (up until the allowable time)? Friends always get me laughing.

I had asked my doc for a sleeping pill for the night before, or a tranquilizer, but for some reason he didn't think that would be a good idea.
 
Thank you so much! I will do that. I don't really have any friends in my town but I am going to try to talk to my friends over the internet. I will try cleaning too. :) Thank you again this helped alot!
 
Sending lots of good thoughts your way for a successful surgery and easy recovery. I don't have any wisdom to add about the vns, just wanted to tell you to hang in there and wish you luck.
 
Lovetypething,

You are having your surgery today. I don't expect you will be logging back in so soon. But when you do, know that we are thinking about you.

Let us know how it went and how you feel, okay?
 
Thank you all. The surgery went well. The pain isn't has bad has it has been but lately its just been getting used to having something foreign/different in my body. Other than that I am feeling pretty good =)
 
That's great! Keep us posted on how things are going.
 
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