VNS for generalized epilepsy

specialneeds

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Hi,

I am strongly considering doing a VNS because I qualify for the procedure. I have Juvenile Syndrome epilepsy. I have read information that there isn't much information for people with generalized epilepsy. So, I am asking for those who have had this procedure that have generalized epilepsy how it worked for you. What are the positives and negatives for this procedure. What is the down time and what shouldn't you do after this procedure related to work. I work as a cashier, so if their a weight limitation or other things that I will need to know about it. Does having the epilepsy cause problems I will need to know about for work. What are the side affects. I have had several TIA's. These are also possibly some post affect to a seizure I have been told since they lasted days and weeks after the incident. I did not seem to have a seizure though, and very low background EEG activity after episode. Had three of these within 4 years and two of those within 2 years. A puzzle no one can figure out.

Thanks

Diana
 

Nakamova

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I don't have the VNS, but I know quite a few CWE members have, including some who have generalized epilepsy -- hopefully they will chime in.

Here's one recent VNS thread:
 

HumbleDeer

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Any generalized seizure like absences, myoclonics or tonic-clonics (and possible atonic and tonic?) would count as a "generalized epilepsy". That makes them not that uncommon.

I know VNS is mostly used for people with partial seizures, because just like a heart that's in vtach can be shocked to sinus a brain can do the same.

As you might know, shocking a heart with no activity won't do much unless that's your last hope. This might be the same with the VNS. The chances of it being of as much use as with focal seizures is likely lower, but it's definitely worth a shot if you have no other options before jumping to RNS or surgery (if that's even applicable, both.)

Best of luck!
Anna
 

valeriedl

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I got my first VNS in 2007 and second in 2013, only because the battery died in the first.

I have all types of seizures that you would consider as generalized epilepsy. Before I got the VNS I was having 15 very bad seizures a month or more, some happening on the same day. After I got the VNS my seizures have slowly decreased to under 5 a month and they weren't anything like they were before. I've gone with having 1 or no seizures a month, this has never happened before. I have changed a med at the beginning of the year so I have a feeling that may have something to do with it too.

If I feel a seizure coming on I can use it and it will usually stop the seizure. I don't have man auras though so I don't know that should use it. Someone can use the magnet on you to help bring you out of the seizure, which does work for me. You could tell the people you work with about it if you want to so they know how to use it if it would need to be used.

The VNS doesn't start working the exact way it should when you have it put in and walk out of the hospital. It does take a little time to figure out what the settings should be and you might still be taking med, which I am. At visits my neuro checks my VNS to make sure it's working properly and may change the settings of it or my meds if we think they should be. Everyone is different when it comes to these things.

I don't have any sort of side effect from it that keeps me from doing things. The only problems I have were things that I had before - a bad back being one of them. So as long as you can do it now you should be able to do it with a VNS and also with having epilepsy. The only thing that shouldn't be done is get an MRI because it's made of metal.

I hope someone else is able to help you with the other things.
 

HumbleDeer

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I got my first VNS in 2007 and second in 2013, only because the battery died in the first.

I have all types of seizures that you would consider as generalized epilepsy. Before I got the VNS I was having 15 very bad seizures a month or more, some happening on the same day. After I got the VNS my seizures have slowly decreased to under 5 a month and they weren't anything like they were before. I've gone with having 1 or no seizures a month, this has never happened before. I have changed a med at the beginning of the year so I have a feeling that may have something to do with it too.

If I feel a seizure coming on I can use it and it will usually stop the seizure. I don't have man auras though so I don't know that should use it. Someone can use the magnet on you to help bring you out of the seizure, which does work for me. You could tell the people you work with about it if you want to so they know how to use it if it would need to be used.

The VNS doesn't start working the exact way it should when you have it put in and walk out of the hospital. It does take a little time to figure out what the settings should be and you might still be taking med, which I am. At visits my neuro checks my VNS to make sure it's working properly and may change the settings of it or my meds if we think they should be. Everyone is different when it comes to these things.

I don't have any sort of side effect from it that keeps me from doing things. The only problems I have were things that I had before - a bad back being one of them. So as long as you can do it now you should be able to do it with a VNS and also with having epilepsy. The only thing that shouldn't be done is get an MRI because it's made of metal.

I hope someone else is able to help you with the other things.
So this means that it works for your generalized seizures too?
 

valeriedl

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So this means that it works for your generalized seizures too?
To be honest with you I don't know, or don't remember if I seizures on one or both sides of my brain. But is something that I've wanted to know too. I just sent my neuro a message to find out. I also mentioned that you are considering getting a VNS so he might give some advice about that.
 

HumbleDeer

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To be honest with you I don't know, or don't remember if I seizures on one or both sides of my brain. But is something that I've wanted to know too. I just sent my neuro a message to find out. I also mentioned that you are considering getting a VNS so he might give some advice about that.
AH so you mean that focals seizures causing your generalized seizure were less, hence less generalized seizures? Or did I not read that correctly?
 

valeriedl

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AH so you mean that focals seizures causing your generalized seizure were less, hence less generalized seizures?
My neuro did reply to me and if we are all on the same page then this is right.
 

valeriedl

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I just have trouble understanding people sometimes so I have to ask a bit more questions. :)
That's ok, so do I. LOL 😄
Go ahead and ask more about the VNS.

Ask any ther questions too about epilepsy and people will try to help as best they can.
 

HumbleDeer

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That's ok, so do I. LOL 😄
Go ahead and ask more about the VNS.

Ask any ther questions too about epilepsy and people will try to help as best they can.
Does the VNS itself moving around under your skin hurt, ever? Or does it not move?
 

valeriedl

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It doesn't move at all and it doesn't hurt. If it wasn't for the scar from the surgery you probably wouldn't even know it was there. My scar is about 2 inches long and I've had two VNS. The only reason I've had two is because the battery died in the first. The battery can't be replaced in them so you have get a whole new one. Depending on what your settings are will depend on how long the VNS battery will last. One lower settings will last longer than one with higher settings. You and your neuro will decide on what they should be. I still have to take meds, less than I did before I got it, but others don't. Everyone is different when it comes to that.

When the VNS is first turned on and sometimes when the settings are changed you might fell a tingle in your throat when it goes off. Depending on what the settings are depends on how often it goes off. You get used to it and don't feel it at all with in a day or even just a few hours.

If you feel like you are going to have a seizure then use the magnet. It's ok to use the magnet if your not having a seizure, it won't hurt anything. You'll probably feel that tingle in your throat if you use it. When my neuro checks mine, and when he changes the settings, at appointments he'll have you use the magnet just to make sure it's working right.

Let me know if you have any more questions.
 
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HumbleDeer

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I have a friend with an RNS that has to get the battery replaced soon; It's an outpatient procedure. I wish I could go there with her but she's still in the states. :)
 

specialneeds

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Well I got it put in and had the stimulation at the neurologist. The surgery went well with no side affects. I was worried since I had seen that you might have problems with your vocal cords. Since, I have had the stimulation which I felt nothing at the first setting and was bumped to I believe 50 I didn't feel anything at first. Later that day I realized I have a strange feeling in my throat sometimes. But not all the time. I do not feel it when I sleep. I do now have pain that is bothersome but not really strong in my left jaw(teeth) on top and bottom. I am guessing that might be when it goes off. I also notice when I get up after sitting down it seems to go off or if I am going up or down stairs. I do not have problems with my vocal cords, sore throat. In the beginning I did have some mild ear pain which seems to have gone away.

I am curious how this might work with dental work being done. Also, how do you turn it off temporarily if need be.
 

valeriedl

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I've had a ton of surgerys with the VNS in and I've never had any problems. My drs were more worried about me having a seizure while having the surgery since the VNS doesn't 100% stop a seizure. I had my wisdom teeth removed with it in with no problems. I only had to have it turned off once. I'm sorry but I can't remember why, I know my ex-husband would know but the two of us don't talk anymore, I believe it was just for some sort of test. I had to keep the magnet taped over the VNS TIGHTLY and that turned it off. I was getting sick and my neuro saw that I didn't have it taped on tight enough so the magnet kept moving over the VNS causing it to keep going ON-OFF-ON-OFF over very quickly.

This is sort of funny so laugh if you want. The only problems that I seem to have with my vocal cords is that I used to be able to caw like a crow, I'd even have crows answer me. I can't do that any more. Ok laugh! People have different effects with their vocal cords so you might or you might not.

That strange feeling that you have in your throat is when the VNS turns on. The feeling will go away when the VNS turns off then you'll feel it again when it turns back on. Depending on what the settings of the VNS are set at you can have the feelings closer together or farther apart. It takes a little time to get used to this. You'll feel them again when the VNS is bumped up but you'll get used to that again and not feel it.

I've never had any problems with pain in my mouth like you said you do, my ear either. I've never had any problems when I sit up or down or with steps. You should talk to your nuro about this.

Good luck!
 
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