Thursday, April 27, 2006

I got turned up

Ok so today isn't so fun..I hadn't written in awhile because there had been no changes. I got used to the .25 setting and all but no changes to my seizure levels...which of course the dr said there would not be yet..They increased it yesterday to .50 and pulse of 500[the pulse is the same] and it takes my breath away...I am adjusting to it---and a little dry but when i am talking it definitely interupts my sentences....I leave in a week for Washington DC with the HS band and pray by then i am at least dealing with the change a bit better. Didn't sleep well alst nigth as i could feel it again...We are to begin loggin my seizures to see if the average changes any....i currently avg 10 or so a month....we want to start seeing it drop. h e figures it won't drop until i am at least at 1.00 so have a way to go..Several people have been really negative on my VNS recently..i want to set the record straight--I know that this is not a guarentee that it would take away my seizures..and i know i will always be on my medications...For me if it works a little it is worth it. With three children and a loving husband...i can't ask for anything more than a little better---NO SEIZURES would be great...but i couldn't wait 5 or so years and then try it--what if it makes my life a little better now--don't my children deserve that now while they live at home and have to deal with it every day. Once they are out on their own---which for my oldest he leaves for college in a little over two years....he deserves the best of me now not later...The risk of the surgery is no different and for me was not worth waiting--now if they said lets remove your brain--I don't know---that one to me is way to risky--i can't imagine waking up and not knowing my family--and the devastation that would do to them--this is one of my last choices...and my family and i deserved the chance---and i couldn't get approved jsut for the depression so if it works for taht as well[ i was approved for BOTH] then amen--it has helped me..just knowing i tried it has made me a bit happier and POSITIVE..because maybe changes are coming but if not--I TRIED!!!!

Current settings
Output Current (milliamperes).50

Signal On Time (seconds) 30 seconds
Signal Off Time (minutes) 5 minutes
Magnet Current (milliamperes) .50
Magnet On Time (seconds) 30 seconds
Magnet Pulse Width (microseconds) 500

1 comment:

Emeriol said...

Kim,
Tell your doc to turn down the pulse width. It will really help with the side effects. If nothing else, just try it out in the office. You can get them to let you try different settings. Your doc has to let you make the changes you want as long as it is not to a setting that will hurt you, which lowering the pulse width will not. My doctor rarely even puts people on the 500 Pulse width setting. If your doc argues, point him to the VNS Physicans Manual - many people in their tests did better with a lower VNS setting than those with a higher VNS setting.
Good luck!