I will have a VNS surgery this coming Monday. Anything I should be aware of? I'm aware epilepsy is dependent on the person, so no questions about how well it will work. But anything I should know, as in the stimulator will be basically turned on later at another appointment. Anything else?
VNS Expectations?
- Thread starter finalpoet
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I have a VNS and it's helped me a good bit with my seizures. I'm still having them, but not that many and they aren't as bad, and I'm taking meds but not that much.
As you said the VNS won't be turned on right away, maybe not for a few months. It might take a while to figure out what settings it needs to be on and what meds/dosages you need to take with it if you need to take them. So don't plan on walking out of the office good to go right after it's turned on. I've had a VNS for 11 years and my neuro is still making changes to things, meds and the settings on the VNS, depending on if my seizures have increased or decreased.
I don't always know when I'm going to have a seizure but if I feel like one's coming on I'll use it, it's ok to use even if your not having a seizure. If I'm not having a seizure I'll feel a tingle in my throat and start coughing. If I am having a seizure these things won't happen and I might use the magnet a few more times. It will usually stop it. If I'm having a seizure someone else can use the magnet on me while I'm having the seizure and it will bring be out of the seizure quicker than normal. So try to keep the magnet somewhere it's easy to get to, like clipped on your pants or wear the magnet on your wrist, don't just throw it in your purse (if you're a woman) and people will have to search for it.
Make sure the people you are with know how to use it on you too.
I wear a medic alert bracelet that says I have one because it's not a common thing, even some EMT and drs don't know what it is. It's not like you're having an asthma attack and they know to get your rescue inhaler or if you have diabetes and you're going into sugar shock. But those who do know what a VNS is they'll know to use it.
That's all I can think of off hand right now, I hope that's the sort of things you wanted to know. If you have any more questions please ask.
As you said the VNS won't be turned on right away, maybe not for a few months. It might take a while to figure out what settings it needs to be on and what meds/dosages you need to take with it if you need to take them. So don't plan on walking out of the office good to go right after it's turned on. I've had a VNS for 11 years and my neuro is still making changes to things, meds and the settings on the VNS, depending on if my seizures have increased or decreased.
I don't always know when I'm going to have a seizure but if I feel like one's coming on I'll use it, it's ok to use even if your not having a seizure. If I'm not having a seizure I'll feel a tingle in my throat and start coughing. If I am having a seizure these things won't happen and I might use the magnet a few more times. It will usually stop it. If I'm having a seizure someone else can use the magnet on me while I'm having the seizure and it will bring be out of the seizure quicker than normal. So try to keep the magnet somewhere it's easy to get to, like clipped on your pants or wear the magnet on your wrist, don't just throw it in your purse (if you're a woman) and people will have to search for it.
Make sure the people you are with know how to use it on you too.
I wear a medic alert bracelet that says I have one because it's not a common thing, even some EMT and drs don't know what it is. It's not like you're having an asthma attack and they know to get your rescue inhaler or if you have diabetes and you're going into sugar shock. But those who do know what a VNS is they'll know to use it.
That's all I can think of off hand right now, I hope that's the sort of things you wanted to know. If you have any more questions please ask.
Last edited:
i am 50/50 on mine.
It did reduce how bad mine are. i use to be tonic-clonic & now partial w/2ndary generalization.
So i guess going from a-z with my tonic/clonic....I am now more D-R.....Just a narrower or less goes on. So i am happy for that, but i do work in sales and my voice @ 75% of max output dies off 25-35 seconds of speaking.
Its made getting a new job impossible because during an interview i can only talk 30 seconds.
I have had a few bad ones after, recently i had a concussion and i have a terrible memory now. But i am pretty certain it was turned on 2wks after i had it put in & it was set at 15% of max. than slowly brought up every 8wks or so.
I take 3 AED's (klonopin is one, half sleep, half seizure) & 5 drugs total. Ive always been between 5-8 drugs since things really began to be fun for me 8yrs back.
It is really tough to judge how much it has done, I am certain it did dial them back severity wise tho. frequency I am more 50/50 on, i have been at 1-4 seizures per year since things began.
But i wish you the best with it
GL
It did reduce how bad mine are. i use to be tonic-clonic & now partial w/2ndary generalization.
So i guess going from a-z with my tonic/clonic....I am now more D-R.....Just a narrower or less goes on. So i am happy for that, but i do work in sales and my voice @ 75% of max output dies off 25-35 seconds of speaking.
Its made getting a new job impossible because during an interview i can only talk 30 seconds.
I have had a few bad ones after, recently i had a concussion and i have a terrible memory now. But i am pretty certain it was turned on 2wks after i had it put in & it was set at 15% of max. than slowly brought up every 8wks or so.
I take 3 AED's (klonopin is one, half sleep, half seizure) & 5 drugs total. Ive always been between 5-8 drugs since things really began to be fun for me 8yrs back.
It is really tough to judge how much it has done, I am certain it did dial them back severity wise tho. frequency I am more 50/50 on, i have been at 1-4 seizures per year since things began.
But i wish you the best with it
GL
resaebiunne
Stalwart
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Hope the surgery goes well for you. I am going to be getting a VNS soon myself.