Agreed to the VNS

[valeriedl]

I will warn you about one thing that i've been experiencing, maybe others have as well? Chime in please if you have. But as my battery got lower on the device it stopped working as well. Once my battery hit below 15% my seizures started to get worse, which has been a real pain because they won't replace it until it hits about 10%. The company claims it will work perfectly until the end but I disagree, so does my neurologist.

I would talk to your doctor if you aren't feeling a difference when you use the magnet. You should notice a big difference when you use it, they may not have that magnet use set high enough or something.

I noticed my seizures were becoming more frequent and worse than before. When I went to my neuro I found out that the battery was dead. He checks my VNS at every appt, which are on average around 4 months apart, but it was set pretty high so the battery died faster

I would talk to your doctor if you aren't feeling a difference when you use the magnet. You should notice a big difference when you use it, they may not have that magnet use set high enough or something.

Every so often I will use the magnet when I'm not having a seizure, which is ok to do. If everything is ok with it I'll feel a tingle in my throat. If I don't feel that tingle then I know something might be wrong. This is how I found out my battery was dead.

 

[seizuregirl]

I’ve been away for awhile, my time is being taken up by my step nephew, but when I use the magnet when I’m not having a seizure, it feels like I’m being kicked in my chest and neck at the same time. I used to keep the magnet in my arms in different places but it would activate the VNS on accident and it would cause a lot of pain and frustration so I finally decided to wrap it around my ankle.

My family wasn’t too happy when I moved it, having to get to my ankle, but I asked them if they’d like me to kick them in their chest and neck too so they could understand why I moved it. They’re still a bit irritated but now agrees with me.

 

[Army Vet]

I've had one for over 5 years now. The next setting up literally had me gagging! Like I had to gasp for air and was coughing there after. I have since given myself a magnet "workout." I have successfully moved to the next level. Trust me though, it was "scary" at first, but I got through it. Am I suggesting you do that. Of course not. However, I was on a fairly low level (wuss! lol) and it seemed to start being ineffective. So I gave myself a swipe about twice a week. I dreaded it lol. However, it did build me up and now I can feel it now (and it doesn't feel like someone is kicking me in the throat) and it seems more effective. Again, I'm in no way saying to do this. Your current setting may be above mine (and then some). However, MY doctor suggested that I do it since I was on a low setting and it seemed to not be as effective even though the frequency was more.

 

[valeriedl]

I’ve been away for awhile, my time is being taken up by my step nephew, but when I use the magnet when I’m not having a seizure, it feels like I’m being kicked in my chest and neck at the same time. I used to keep the magnet in my arms in different places but it would activate the VNS on accident and it would cause a lot of pain and frustration so I finally decided to wrap it around my ankle.

My family wasn’t too happy when I moved it, having to get to my ankle, but I asked them if they’d like me to kick them in their chest and neck too so they could understand why I moved it. They’re still a bit irritated but now agrees with me.

I tried keeping my magnet on my wrist using the Velcro bracelet, if that's what it's concerned, it came with. The magnet was strong though that things were constantly getting pulled to it. I keep it clipped, with the clip it came with, to the waist of my pants or skirt now and that works great. The only real problem is when I'm wearing a dress. I usually clip it to my bra then. I might Velcro it on my purse too, just got to make sure I've always got my purse with me.

How far away do you keep your magnet from your VNS? You might be keeping it too close if it's going off as much as it is. Ask your neuro where a good place to keep it would be. I would defiantly ask your neuro about your settings too. There's a good chance that it's set too high if your getting a jolt like that.

 

[Clovis]

I have my third VNS. I got my first one about 15 years ago. I really don't know just how much it/ they have helped as up until a few months ago I was still having quite a few of the petit mal seizures and oen or two gran mal a year. But, now I am off all medication and doing well so maybe it is what is helping me.

I have had it so long I truly don't notice when it comes on unless I happen to notice my voice changing a bit.

I hope if you do get one it works well for you and you find it easy to live with. One thing about the magnets tho, they will destroy the strip on the back of cards like credit, debit, etc.

God bless.

 

[seizuregirl]

I've tried to keep it on my waistband too but my nephew can see it and tries to take it off to play with it, and with it on my ankle now when he see's it he will point at it and say, "Manget!" (He's still learning how to speak ) and leaves it alone.

 

[seizuregirl]

I have an appointment with my Dr. next week that returned to the hospital, which is good because there isn’t any other Dr’s that have been accepting new patients since she left.

The last one I had with a Dr at the hospital was with the surgeon using FaceTime because of this wonderful virus, but my neurologist wants me to come in and see her to turn the VNS up.

 

[Nakamova]

Hopefully that will do the trick. Stay safe!