Hey, how is everyone? I'm new, so I figured I'd introduce myself. I'm 23 and from upstate NY. I'll make the story short - I started having seizures when I was 17 and the doctors put me on Trileptal which worked for 2 years. Started having them again, the doctors added another med, good for 6 months, then they started again. Over the past 3 1/2 years, they haven't been able to find a concoction to completely stop the seizures. At the moment, they're basically partial seizures. I have my motor skills and know what's going on. If someone is talking/saying something to me while I'm having one, I have no clue what they're saying and I can't saying anything while they're happening either. My doc mentioned the VNS about 2 years ago. I said absolutely not. But, now that's it's been 2, probably closer to 3 years, I told him I'd consider it possibly early next year. It's hard, though, when what you're reading looks like it's 50/50 with that. The one thing I hate about it is that once it's in, IT'S IN. They won't take it out unless there is some medical emergency and they basically have no choice. If it didn't work and they could take it out, I'd have no problem with it. But, if it doesn't work, they just turn it off and leave it in :/ Anyways, it will be nice to talk to other people that have the same experiences and such.
Hello everyone
- Thread starter Lbueno
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Hi lbueno, and welcome to CWE!
I hope you are able to get the partials under control. I know it's not for everybody (and can be hard to find a skilled practitioner), but you might give neurofeedback a shot before trying the VNS.
Best,
Nakamova
I hope you are able to get the partials under control. I know it's not for everybody (and can be hard to find a skilled practitioner), but you might give neurofeedback a shot before trying the VNS.
Best,
Nakamova
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I've had my VNS since 2007 and it's helped me a lot. I am also taking meds however too.
I was diagnosed with epilepsy in 2003 and went through all different sorts of medicine recipes but nothing really seemed to do much good. That's when my neuro suggested getting the VNS.
He said it probably wasn't going to be a 'cure all' and stop the seizures but it has helped me a lot. Before I got it I was having on average 3 seizures a week. They were all partials but they were very bad, lasted a long time and I'd have horrible headaches afterwards.
Since I've gotten it I usually have around 4 seizures a month and they are nothing like they were before. If I feel a seizure coming on I can use the magnet and it will usually stop it. The only problem however is that I don't always feel the seizure coming on so I don't know that I should use it. If I am having a seizure and someone uses the magnet on me I'll come out of the seizure pretty quick.
It's not something that's going to start working as soon as you leave the hospital. It takes a little while to figure out what settings are right for you. This probably took around a year for me.
I know that the drs don't like to take it out but I believe that it can be done (someone please correct me if I'm wrong). I don't think it's a very easy surgery to do and that's why they really don't like to remove it. I'm sure though if you weren't happy with it and pressured them enough they would remove it.
I believe that my neuro told me when it's time for a new battery then they put a whole new VNS in (please correct me if I'm wrong about that too). They replace it with a newer model.
Find out as much as you can about it and see if you might want to get one.
I was diagnosed with epilepsy in 2003 and went through all different sorts of medicine recipes but nothing really seemed to do much good. That's when my neuro suggested getting the VNS.
He said it probably wasn't going to be a 'cure all' and stop the seizures but it has helped me a lot. Before I got it I was having on average 3 seizures a week. They were all partials but they were very bad, lasted a long time and I'd have horrible headaches afterwards.
Since I've gotten it I usually have around 4 seizures a month and they are nothing like they were before. If I feel a seizure coming on I can use the magnet and it will usually stop it. The only problem however is that I don't always feel the seizure coming on so I don't know that I should use it. If I am having a seizure and someone uses the magnet on me I'll come out of the seizure pretty quick.
It's not something that's going to start working as soon as you leave the hospital. It takes a little while to figure out what settings are right for you. This probably took around a year for me.
I know that the drs don't like to take it out but I believe that it can be done (someone please correct me if I'm wrong). I don't think it's a very easy surgery to do and that's why they really don't like to remove it. I'm sure though if you weren't happy with it and pressured them enough they would remove it.
I believe that my neuro told me when it's time for a new battery then they put a whole new VNS in (please correct me if I'm wrong about that too). They replace it with a newer model.
Find out as much as you can about it and see if you might want to get one.
Yeah, the doctor said it wouldn't be a "cure all" and I'd be taking drugs along with it. I'm just typing something real quick because I'm on my way out here - But, I love to sing. I often don't talk very highly of myself, but there is one thing I will say. I can sing. Singing is a way for me to relieve my stress. It comforts me. I hear, so many times, that it affects the voice of the recipient. I know it affects the voice right after and any time it gets turned up, but some say it permanent. That's the biggest reason I'm still leaning toward no for the VNS. But, I still have a few months to think about it. I'll add more a little later. Enjoy your night 