Question for VNS patients

[bdhshakes]

Been a while since I posted here.

So back in October I decided to get a VNS, and I got it stuck in my at the end of October. I just hit the level where my neurologist wants me to be at so we are going to see how it goes for about 3 months.

I haven't gone to the gym or anything since I got it put in because when I goes off I get a little tightness, shortness of breath thing so obviously that wouldn't be good to have if I'm going for a run or playing basketball.

So my question is for those who currently have a VNS or who have used it before. How did you go about keeping yours off? I mean I already know how to do it but i can't come up with a method that works well. I tried taping it on but when I started running it kinda bounced off then back down, which turned it back on and then hit me with the magnet strength. I mean I'm basically thinking I might have to just duck tape it on. Obviously I would prefer not to as that would get pretty painful in the removal process haha.

What methods did you guys use? I need some advice!


Brody

 

[arnie]

You can use a much smaller magnet than that godawful huge thing that comes with the unit. I used a magnet like the one you get with a bicycle computer to put on the bike wheel. I also got a magnet about the size of a 2 dimes taped together, I think at a hardware or variety store, which works just fine. I put one on my watchband and another one on my keyring so I would always have one handy. You still have to tape one on yourself, of course, to turn the unit off for a longer time, but I just used a separate one for that and you can use one piece of paper tape so your skin doesn't get irritated as much. It's perfectly fine to use a magnet other than the one they give you, according to the Cyberonics technical rep that I spoke to personally and by email a number of times. For a while before I finally got it shut off for good I had to turn it off every night because I was having a lot of problems with sleep apnea from it.
If you want the full story of my vns saga you can find it here: http://www.coping-with-epilepsy.com/forums/f23/my-vns-experience-22263/
If you don't want to read the whole thing, the upshot is that it didn't work for me, and I only had it on for about three months before they turned it off, so now it's in me forever and ever, amen. Oh well. The good news is I've been seizure free for 7 1/2 months because of some slight changes I made in the frequency of taking my meds after analyzing my seizure patterns and talking with my pharmacist.
Cheers!

 

[stilldancing_98]

I got my VNS a year ago in February. I love to sing ,my doc gave me two sets. Of magnets.. Because with my memory' I think my epileptologist has them ready for me . I did not go by his schedule on turning it up or down. And I have some weird seizures.And the mangnet helped to turn it off put one

 

[Cint]

I've had my VNS since 1998 and have tried different settings because of the shortness of breath/wheezing, control of seizures. We found a setting that works for me and I have been able to go to the gym and work out, despite the shortness of breath. The shortness of breath only lasts for a few seconds while the VNS is charging, so it beats seizures for me.