Thursday, October 15, 2009
I have had some trouble with my VNS lately. People have asked more than once what a VNS was so I thought that would be a good subject to write about. VNS stands for Vegus Nerve Stimulator. I have had epilepsy since I was 12. That is a grand total of 33 years. Taking medication is not fun, I have thought ever since I started having to take medication, that it didn't make any sense to me anyone wanting to take drugs, I hate having to take medications every day. Right now I have to take 24 prescriptions every day and 2 more that I am taking on a temporary basis. That does not include vitamins or non-prescription medications.
The VNS was one way that I can decrease the quantity of medication that I have to take. (That is also a major reason I would like to lose weight). Four years ago a neuro-surgeon did the surgery implanting the VNS. The main apparatus is in the left side of my chest slightly lower than my neck. I can seldom feel it. It has a wire that is wrapped around the Vegus Nerve in the left side of my neck. I go to my epileptologist every three months and he turns up the VNS usually 3 levels. I can feel it as he turns it up. When he turns it up he has me hold a device that looks something like a telephone over it, with a spring cord attaching it to a metal box that he uses to read and reprogram the VNS with what looks like a pen. It creates a tickling sensation when he turns it up. He waits a minute then turns it up again, then waits and turns it up again. After he is finished it takes a short time before I quit feeling it again. What I am feeling is the sensation that is caused when it sends a signal to my brain every three minutes to stop any seizures.
Some people who have VNS can use magnets to turn them up if they feel like they are going to have seizures. I haven't been able to do that because of the kind of seizures that I have. I don't have enough warning. Some people believe that if you have a VNS you don't have take medication. That is not true. I have been fortunate that mine has worked so well and that they have been able to decrease my medication. There is at least one person I know of who has one I feel symmpathize with, because their VNS is not helping them so they are just going to let the battery run down and basically forget about it. To keep a VNS running you have to have replace the batteries in the VNS approximately every six years in surgery. For me it will be more than worth it!!!
Magnets can also be used to turn the VNS off by holding them over the primary apperatus. There are a few side effects. Like they can make you hoarse. That can be a problem, but the magnets can help with that. I haven't had the problem yet, but the search devices getting on airplanes can be a problem because of the magnets in the searching devices. There are other electronic devices that have magnets you have to becareful about because of the magnets. But I have had such good luck with the VNS it has been more than worth it to me and I am glad I have it. They are working on using the VNS for other things, such as depression, but that hasn't been approved completely yet. I pray that many people will be able to use them for the solution to their problems, or they will find new solutions so they won't need them very soon. I will be happy to answer more questions if I can, just let me know. Your Friend, Amy