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 emoticon
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Member Comments About This Blog Post
    Wonderful inspiring blog, thank you for sharing this.
    My heart has been touched by your words,.
    I am a little familiar about seizures, but not this new treatment for them. I am glad to hear it has helped you.
    Great testimony....

    Now I myself know what VNS is, and who knows I may need to share this with someone one day....

    thank you
    God Bless You, Paula :)

    I will keep you in my prayers.....
    4266 days ago
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    I, too, have never heard of the device and I'm so glad you're having such wonderful results. Hallelujah!
    I have Dystonia and so far the Myobloc shots work well. My last alternative is Deep Brain Stimulation using a similar machine that's implanted. I'm not ready to go that route but it's nice to know the option is there. It's encouraging to me to read that you've had such excellent success with your device.
    Continue taking good care of YOU!
    Hugs and blessings, Amy!
    4289 days ago
    I'm glad the VNS works so well for you. When I was working as a nurse they were just starting to use them more frequently - I know they can be life changing.

    Hope it continues to be so successful my friend.

    4291 days ago
    I don't know anything about VNS, but I do understand medical problems. I have too many to count. And my father has epilepsy, so I understand a little bit of what you must go through. Aboout 20 years ago I saw him have a grand mal seizure and I will never forget it as long as I live. My heart and prayers go out to you.

    4292 days ago
    This was very informative. Sorry that you have had to go through so much. I really appreciate your explanation. I can hardly imagine...WOW! Glad you are here on Keep on keeping on and blessings in abundance to you!
    Oh, and thanks for the goodie!!
    4293 days ago

    Comment edited on: 11/1/2009 1:03:22 AM
    I had no idea. Thanks for sharing. I'm glad the device is helping you. (HUGS)
    4294 days ago
    Thanks for informing us of what a VNS is. I'm glad it works for you and if it works for the depressed people there are a lot of people in the mental health that I know that could use it. I'm glad your meds have gone down. Keep us informed of what more happens with you and the VNS.
    4297 days ago
  • JUNEBUG1944
    Thank you. That is very interesting. I'm so happy that your VNS is helping you!
    4305 days ago
    Thank you for an interesting and informative blog. I am so glad the device is working well for you.

    4308 days ago
    Oh my gosh, you surely have gone through a lot! I never heard of this device but thanks for educating us on the subject.

    Sending hugs your way. emoticon emoticon emoticon
    4308 days ago
    Don't know what to say so I am just sending a huge hug and so glad this device does seem to help you.
    4309 days ago
    I had never heard of this device. Thanks for en lighting me on this device. Glad it works so well for you!
    4309 days ago
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    I didn't even know VNS existed. Wow, you've endured a lot. Thanks for sharing, bringing it to our attention and being an inspiration for others out there :) Keep on Sparking!
    4309 days ago
    Thanks for sharing
    4309 days ago
  • AMMEY9
    Wow, I had no idea. Thank you for the information.

    Great that it is helping you.
    4309 days ago
    That was a great informative blog. Thanks Amy
    4309 days ago
    Thanks for sharing. I had no idea.
    4309 days ago
    Thank you for sharing! My boss' daughter has some issues with her VNS as well. She'd be brushing her hair and pass out. Fortunately, they found out what it was, and she's on medication for it.
    4309 days ago
    Thanks for posting this info.
    4309 days ago
    I didn't know what the VNS was either. You were so very kind to explain it to me but this is even more info.Thank~You so much explaining what it is. I am so very glad that this works and that it helps you out the way it does. new medical equipment like this can be such a blessing for people that needs this sort of help. And I am so glad that it helps you so much and that it is improving your life. emoticon emoticon
    4309 days ago
    Thanks for sharing, very informative!
    4309 days ago
  • GABBIE00
    I had never heard of vns but it's good to know these things thanks for the info.
    4309 days ago
    Really good information. Thanks for sharing it.
    4309 days ago
    Quite a lot of good information! Thanks for sharing!
    4309 days ago
    I have never heard of VNS so this was quite informative. I know it is giving you some trouble right now but I hope, in the long run it has also been some good as well.
    4309 days ago
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