Coping With Epilepsy Denver Neurofeedback
10% off neurofeedback training for CWE members - Denver, CO
Neurofeedback Partner - Free Advertisement
 

Go Back   Epilepsy Forum > Our House > The Foyer


Reply
 
LinkBack Thread Tools
  #1  
Old 08-24-2010, 10:57 AM
lovetypething<3's Avatar
Getting Comfortable
 
Join Date: Sep 2009
Location: Indiana
Posts: 12
Thanks: 1
Thanked 0 Times in 0 Posts
Send a message via MSN to lovetypething<3

Smile Hi!


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!
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #2  
Old 08-24-2010, 11:52 AM
Bernard's Avatar
Your Host
Recent Blog: Oh poop

 
Join Date: Mar 2005
Location: Friendswood, TX
Posts: 5,727
Thanks: 155
Thanked 594 Times in 268 Posts
Hi Jena, welcome to the forum.

Make yourself at home here. There are several members here that have (or had) the VNS with varying levels of success.
__________________
Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback.

Would you like to help support this forum?

We recently had a bunch of new neurofeedback practitioners agree to offer CWE members discounts for service. See post #12 for the list of all participating practitioners.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #3  
Old 08-24-2010, 11:57 AM
lovetypething<3's Avatar
Getting Comfortable
 
Join Date: Sep 2009
Location: Indiana
Posts: 12
Thanks: 1
Thanked 0 Times in 0 Posts
Send a message via MSN to lovetypething<3
Thank you! Oh thats great. I just read that readers digest article & I was terrified! This makes me feel a whole lot better!
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #4  
Old 08-24-2010, 12:49 PM
BuckeyeFan's Avatar
Super Moderator / Grandpa
 
Join Date: Feb 2008
Location: Ohio - Buckeye country
Posts: 1,884
Thanks: 12
Thanked 88 Times in 57 Posts


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

__________________
Character is doing the right thing when no one is looking.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #5  
Old 08-24-2010, 01:00 PM
huskymom's Avatar
Esteemed Pillar of the Community
 
Join Date: Apr 2010
Location: South Bend, Indiana
Posts: 617
Thanks: 12
Thanked 120 Times in 101 Posts
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!!
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #6  
Old 08-25-2010, 09:44 AM
Super Moderator / Thank You Queen
 
Join Date: Jun 2005
Location: Massachusetts
Posts: 6,516
Thanks: 173
Thanked 1,506 Times in 1,309 Posts
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
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #7  
Old 09-09-2010, 12:06 PM
lovetypething<3's Avatar
Getting Comfortable
 
Join Date: Sep 2009
Location: Indiana
Posts: 12
Thanks: 1
Thanked 0 Times in 0 Posts
Send a message via MSN to lovetypething<3
Thank you everyone for the warm welcomes! 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?
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #8  
Old 09-09-2010, 01:14 PM
Weaving the Community Fabric
 
Join Date: Apr 2005
Location: Maine
Posts: 114
Thanks: 0
Thanked 0 Times in 0 Posts
Send a message via MSN to Elisa
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
__________________
seizure since age 12, focal resection 1992, VNS 2002 removed 2003.
Lamictal 400mg, Topamax 100mg daily.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #9  
Old 09-09-2010, 02:18 PM
Joined the Party
 
Join Date: Oct 2008
Location: Grove City PA
Posts: 51
Thanks: 43
Thanked 11 Times in 10 Posts
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.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #10  
Old 09-09-2010, 08:32 PM
Endless's Avatar
Super Moderator / Even Keel
 
Join Date: Feb 2010
Location: U.S.
Posts: 4,215
Thanks: 736
Thanked 998 Times in 823 Posts
Send a message via AIM to Endless
Hi, and welcome! I'm glad you found us!
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #11  
Old 09-25-2010, 09:25 PM
lovetypething<3's Avatar
Getting Comfortable
 
Join Date: Sep 2009
Location: Indiana
Posts: 12
Thanks: 1
Thanked 0 Times in 0 Posts
Send a message via MSN to lovetypething<3
Is there a thread somewhere about getting small or large injuries during seizures and/or what to do when it happens?
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #12  
Old 09-25-2010, 09:39 PM
epileric's Avatar
Super Moderator / Spaminator
 
Join Date: Dec 2007
Location: Ottawa, Ontario, Canada
Posts: 3,552
Thanks: 134
Thanked 586 Times in 508 Posts
Originally Posted by lovetypething<3 View Post:
Is there a thread somewhere about getting small or large injuries during seizures and/or what to do when it happens?
Hmmm, I"m not sure. You might want to try the "search" option at the top of the page (towards the right).
__________________
"It's no longer a question of staying healthy. It's a question of finding a sickness you like." -Jackie Mason
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #13  
Old 09-26-2010, 07:51 PM
Endless's Avatar
Super Moderator / Even Keel
 
Join Date: Feb 2010
Location: U.S.
Posts: 4,215
Thanks: 736
Thanked 998 Times in 823 Posts
Send a message via AIM to Endless
Here you go:

http://www.coping-with-epilepsy.com/...seizure-10203/
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #14  
Old 11-01-2010, 01:54 PM
lovetypething<3's Avatar
Getting Comfortable
 
Join Date: Sep 2009
Location: Indiana
Posts: 12
Thanks: 1
Thanked 0 Times in 0 Posts
Send a message via MSN to lovetypething<3

Unhappy


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
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #15  
Old 11-01-2010, 03:39 PM
Endless's Avatar
Super Moderator / Even Keel
 
Join Date: Feb 2010
Location: U.S.
Posts: 4,215
Thanks: 736
Thanked 998 Times in 823 Posts
Send a message via AIM to Endless
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.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #16  
Old 11-01-2010, 05:04 PM
lovetypething<3's Avatar
Getting Comfortable
 
Join Date: Sep 2009
Location: Indiana
Posts: 12
Thanks: 1
Thanked 0 Times in 0 Posts
Send a message via MSN to lovetypething<3

Smile


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!
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #17  
Old 11-01-2010, 08:58 PM
Weaving the Community Fabric
 
Join Date: Jul 2010
Posts: 118
Thanks: 1
Thanked 19 Times in 17 Posts
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.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #18  
Old 11-02-2010, 11:39 AM
Endless's Avatar
Super Moderator / Even Keel
 
Join Date: Feb 2010
Location: U.S.
Posts: 4,215
Thanks: 736
Thanked 998 Times in 823 Posts
Send a message via AIM to Endless
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?
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #19  
Old 11-05-2010, 09:08 PM
lovetypething<3's Avatar
Getting Comfortable
 
Join Date: Sep 2009
Location: Indiana
Posts: 12
Thanks: 1
Thanked 0 Times in 0 Posts
Send a message via MSN to lovetypething<3

Thumbs up


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 =)
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #20  
Old 11-05-2010, 11:44 PM
Super Moderator / Thank You Queen
 
Join Date: Jun 2005
Location: Massachusetts
Posts: 6,516
Thanks: 173
Thanked 1,506 Times in 1,309 Posts
That's great! Keep us posted on how things are going.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
Reply

Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On



All times are GMT -5. The time now is 02:24 PM.


Powered by vBulletin® - Copyright ©2000 - 2012, Jelsoft Enterprises Ltd.
Content Relevant URLs by vBSEO ©2009, Crawlability, Inc.
Copyright 2005 © Measuring Up. ALL rights reserved.