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thoughts @ VNS and Feeling sorry
Thu, 03/24/2005 - 18:51Topic: Surgery and Devices
Hi there, I am new to the vns in that I had it put in last September, Then had complications with loosing my voice for a long time. Thought I would remove the VNS. Now 6 months later I still have it and decided to turn it on due to an increase of seizures. I have intractable epilepsy. Have for 36 years. Always will.So two weeks later It was adjusted, I had bad side affects from the settings, so now it is at a level I can handle, yet I do not know if it will help with seizures as it is a a low setting, as my body is quite sensitive. Yet this AM I had a seizure tried the magnet and it is uncertain if it worked or not. Now I feel like I may need to carry it with me and I know I fumbled trying to get it I do not want to get so focused onthe magnet. If I drop it it might break.So I hesitate to try to carry the magnet with me for the fact that I would fumble and possibly drop it as I do not want it on my wrist, too heavy. Does any one feel this way?Lastly Does anyone who has a seizure feel like they need to apologize following a seizure for inconveniencing the people who are with them. I live someone who loves and deeply cares about me but I feel I need to apologize. I do not know exactly why. Look forward in hearing from some of you. Thank you for being there and relating!!
RE: RE: thoughts @ VNS and Feeling sorry
Submitted by 38benny on Thu, 2005-03-24 - 18:51
You say you wear your magnet with your wristband - that was always too big for me so i found another way that never set the VNS off on its own but was just as good - for me anyway.
I was in Old Navy and they had the key chains that you put around your neck with the metal clips at the end - the clip fit perfectly in the VNS slot and since it was metal it stuck like glue. I also have a metal epilepsy alert tag with it with information on the back on what to do with the VNS magnet step by step - it sticks to the magnet too, <if I'm ever unconcious and someone needs to use it - hopefully never - but better safe than sorry>. I wear it all the time like you would wear the wrist band.
Anyhow just putting out the info...
JoAnne
You say you wear your magnet with your wristband - that was always too big for me so i found another way that never set the VNS off on its own but was just as good - for me anyway.
I was in Old Navy and they had the key chains that you put around your neck with the metal clips at the end - the clip fit perfectly in the VNS slot and since it was metal it stuck like glue. I also have a metal epilepsy alert tag with it with information on the back on what to do with the VNS magnet step by step - it sticks to the magnet too, <if I'm ever unconcious and someone needs to use it - hopefully never - but better safe than sorry>. I wear it all the time like you would wear the wrist band.
Anyhow just putting out the info...
JoAnne