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.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
- Messages
- 17,355
- Reaction score
- 755
- Points
- 263
There are a few CWE members with the VNS.
You also might want to check this out: http://www.vnsmessageboard.com/index.php
And here's a thread from the archives: http://www.coping-with-epilepsy.com/forums/f20/vns-therapy-8343/
You also might want to check this out: http://www.vnsmessageboard.com/index.php
And here's a thread from the archives: http://www.coping-with-epilepsy.com/forums/f20/vns-therapy-8343/
- Messages
- 5,815
- Reaction score
- 830
- Points
- 268
I have a VNS, I got mine in '07 too.
It's helped me alot since I've gotten it. I still am taking meds and having seizures but they aren't anything like they were before I got it. I was having probably around 5 bad seizures a week before I got it. Now I'm having maybe 5 seizures a month, and they aren't that bad at all.
It took me a long time to get the "voltage" (that's what I call it at least) moved up to where it is now. The neuro had to up it very slowly.
I never knew when I was having the seizure before I got it, I would just black out, and if there wasn't anyone there to see me have it then I didn't know I was having one.
I'm not blanking out during them now, so I know that I'm having them. Now as I said it did take me a while to get to this point because he had to "up the voltage" very slowly but it has helped out alot in the long run.
It's helped me alot since I've gotten it. I still am taking meds and having seizures but they aren't anything like they were before I got it. I was having probably around 5 bad seizures a week before I got it. Now I'm having maybe 5 seizures a month, and they aren't that bad at all.
It took me a long time to get the "voltage" (that's what I call it at least) moved up to where it is now. The neuro had to up it very slowly.
I never knew when I was having the seizure before I got it, I would just black out, and if there wasn't anyone there to see me have it then I didn't know I was having one.
I'm not blanking out during them now, so I know that I'm having them. Now as I said it did take me a while to get to this point because he had to "up the voltage" very slowly but it has helped out alot in the long run.
petero
New
- Messages
- 1,722
- Reaction score
- 0
- Points
- 0
>oh_my_God<
I had a seizure episode months ago and at the ER I think someone was informing me of this when I was post-ictal/clustering (idk?)
I had no ****ing clue what was being talked about at the time and I have had so many crazy ideas about WHAT they were talking about (they implanted something in my brain? in my tooth? what??), but just took it on faith that I was recalling bizarre ideations from the seizure and nothing else - and when I have seizures, frankly I don't give a s**t about anything else so..
but this VNS must have been the topic!
I've heard about these, but had assumed they were an external, um, "female adult entertainment" type of device used on the cranial extremity, rather than otherwise, and not an implanted device
wow
I remember Dr. he/she (?) was talking about magnets and something - because I have an old analog radio by my bed headboard... stereo speaker with magnets... they were warning me about something to do with magnets
it was a test of some sort - what a f**ked up hospital stay
I had a seizure episode months ago and at the ER I think someone was informing me of this when I was post-ictal/clustering (idk?)
I had no ****ing clue what was being talked about at the time and I have had so many crazy ideas about WHAT they were talking about (they implanted something in my brain? in my tooth? what??), but just took it on faith that I was recalling bizarre ideations from the seizure and nothing else - and when I have seizures, frankly I don't give a s**t about anything else so..
but this VNS must have been the topic!
I've heard about these, but had assumed they were an external, um, "female adult entertainment" type of device used on the cranial extremity, rather than otherwise, and not an implanted device
wow
I remember Dr. he/she (?) was talking about magnets and something - because I have an old analog radio by my bed headboard... stereo speaker with magnets... they were warning me about something to do with magnets
it was a test of some sort - what a f**ked up hospital stay