VNS now working, how do you know?

[valeriedl]

I know there are some of you on here who have gotten a VNS and it hasn't worked for them. How did you find out?

I got my second VNS because the battery died and I don't know if this one is helping. My seizures seem (I guess you could say) to be about the same. On average I have about 7 a month. Sometimes more sometimes less.

I got my new one in January, I had at least 11 seizures. This was more a month than I usually have. This was as many as I was having when the battery was dead.

February I only had 3.

So far this March I've had 6, 4 of them were yesterday.

I could be having more each month. Sometimes during a simple I don't really realize it's going on. Most of the time during a complex I don't know it happened unless there was someone there to see it.

My neuro knows my Jan and Feb seizures but not my Mar seizures yet. I'm just wondering how you knew it wasn't working?

 

[Cint]

I got my new one in January, I had at least 11 seizures. This was more a month than I usually have. This was as many as I was having when the battery was dead.

February I only had 3.

So far this March I've had 6, 4 of them were yesterday.

I could be having more each month. Sometimes during a simple I don't really realize it's going on. Most of the time during a complex I don't know it happened unless there was someone there to see it.

My neuro knows my Jan and Feb seizures but not my Mar seizures yet. I'm just wondering how you knew it wasn't working?

Your neuro needs to be informed of these March seizures also so he/she can do some testing of the VNS Pulse Generator settings. The pulse generator may not be stimulating properly, therefore not controlling the seizures.

 

[valeriedl]

He knoes about all of them that I've had since I got it except the 4 I had Friday. It was tested at my last visit that was about 2 weeks ago. He raised the settings at that appt.

 

[Belinda5000]

The way they'd know my VNS was working would be I was having less seizures.

My VNS doc checked my VNS evertime I saw him. The VNS didn't always catch the seizures though and I had my battery replaced twice and didn't seen any reason to go foranother one. So I just had my doc turn my VNS off since it wasn't working very well.

 

[suebear]

The way they'd know my VNS was working would be I was having less seizures.

My VNS doc checked my VNS evertime I saw him. The VNS didn't always catch the seizures though and I had my battery replaced twice and didn't seen any reason to go foranother one. So I just had my doc turn my VNS off since it wasn't working very well.

I have a VNS device - the difference with me is I use the magnet every time I have an aura because it stops the seizure from taking place. I have that capability.

The VNS is set at a default setting because I currently am using the Deep Brain Stimulator to control my epilepsy and that stimulator controls 90% of the seizure activity; the VNS manages the other 10%.

 

[arnie]

I was never able to get the VNS up to a therapeutic level because of the extreme pain that accompanied every cycle. (And I have a pretty high tolerance for pain.) In addition to that, it was disrupting my sleep and causing sleep apnea (which has not stopped, by the way, and the thing has been off since March or April) and making it hard to breathe and talk every time it came on. There was no reduction in seizure activity at all.

 

[suebear]

I was never able to get the VNS up to a therapeutic level because of the extreme pain that accompanied every cycle. (And I have a pretty high tolerance for pain.) In addition to that, it was disrupting my sleep and causing sleep apnea (which has not stopped, by the way, and the thing has been off since March or April) and making it hard to breathe and talk every time it came on. There was no reduction in seizure activity at all.

don't know of your case but what I can tell you in my situation, I had experienced the VNS at it's highest levels and it could not stop the seizures from taking place. I was put into a clinical trial for the Deep Brain Stimulator because it has more leads than the VNS and the settings are more specific.

It only took minimal settings for the leads to be set and I have been doing quite well. If you are having issues with controlling your seizures perhaps this is something to research? :twocents: