First time seizure like this while using VNS

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valeriedl

valeriedl

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A few weeks ago I started having a simple partial/aura so I used my VNS. The seizure went away but about 5 or 10 minutes later it started to come back and I used my VNS again and it went away again. This went on like this for over an hour. I did finally go into a seizure and my husband said that I was shaking some during it. I very rarely have TCs, which I'm not sure if it was actually one, so I don't know if possibly being a TC had anything to do with it being like that.

This is the first time anything like this has happened. If I can feel the seizure coming on and use my VNS it will usually stop it with in one or two uses of the magnet. Sometimes however the VNS will not stop the seizure as most of you know who have a VNS.

I did have blood work done a few weeks ago so my neuro is seeing if one of my meds my have something to do with this. Haven't heard the results yet of course.
 
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Have you recently had the settings of the VNS tested?
 
Yea, I saw my neuro just a few weeks ago.
 
I've had a few CPs after having my VNS, even tho I used my magnet. My neuro had to re-do my settings of the VNS. I haven't even had any auras now in over 6 months (knock on wood).
 
I had this seizure just a week after the appointment with my neuro. He checks the settings every visit.

My vns is set pretty high and he doesn't really want to set it much higher. He wants to try and do something with my meds. I got blood work done right after the visit but still haven't heard about the results yet.
 
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Just because you have the VNS that's no sure thinkg that you won't have a seizure,I had plenty of tonic-clonics when my VNS was on.It was on a high setting but it didn't work for me. I continued to seize regardless. There are very few that get control altogether with the VNS, and I didn't find it worth it at all.
 
Belinda5000 said:
Just because you have the VNS that's no sure thinkg that you won't have a seizure,I had plenty of tonic-clonics when my VNS was on.It was on a high setting but it didn't work for me. I continued to seize regardless. There are very few that get control altogether with the VNS, and I didn't find it worth it at all.
Click to expand...

I am still having seizures with the VNS and I always have since I've gotten it. My neuro told me that just by having the VNS it didn't mean it was going to be a 100% seizure stopping thing.

I am still having tonic clonic and partial seizures but they both aren't as bad as before I got it and I'm not having nearly as many. I'm glad I got it just for that reason. I'm also taking meds which my neuro told me that I may have to also. This was just the first time I had a seizure that would stop the simple partial for about 5 or 10 minutes then have it start up again that lasted for such a long time.

I'm still waiting to hear back about my blood work. He said if anything he'd rather to mess around with my meds before changing the settings on the VNS because they are pretty high. After over 10 phone calls to the office in the last month you'd think they'd get back to me by now and let me know what's going on with that!!!!
 
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