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vns therapy side effects
Wed, 02/15/2006 - 10:10Topic: Complementary Therapies
I joined this site yesterday and I'm interesting in touching base with anyone who has a vns. In particular I would like to find out if anyone has experienced any unusual side effects not mentioned by Cyberonics. I occasionally experience 'tingling' in my neck and shoulder - this is actually quite unpleasant and it has been severe enough to warrant having my vns temporarily turned off. At one point last summer it felt like I was being repeatedly stung by a bee or something like that (I'm not sure exactly how to describe it). Cyberonics claims that no one has ever mentioned anything similar to this. I have been quite happy with my vns - it has helped stop many seizures once they have started, which has meant fewer trips to the ER but if this problem became really severe again I wouldn't be able to keep my vns turned on. Please let me know if you have experienced anything like this - I would like to know - Cyberonics makes it sound like I'm crazy or something. Thanks!!!
Comments
Re: Re: Re: Re: vns therapy side effects
Submitted by want2help on Mon, 2007-05-21 - 12:42
Hi Lisa,
I hope the vns is working well for you. You can tape the magnet directly over the battery on your chest (under your clothing), to put the stimulation on pause while you are singing. I know someone who is an opera singer and that is what he does. w/o stimulation, you shouldn't have any voice alterations. After you are done, take of the magnet, and the vns will start working with a gradual ramp up again.
Re: vns therapy side effects
Submitted by txrhb1 on Wed, 2006-02-15 - 17:51
Hi ! I had the VNS implanted in October, and am still going thru the process of having it gradually turned up. In March, it will finally be turned to the low end of the therapeutic range. I haven't had any problems with it, and certainly not the "bee sting" effect you seem to be having. I do feel the tingling in my neck quite a bit, and feel like the next adjustment will be a bit harder to get used to. Each time i have had it turned up, it has taken me a few days to get used to it. This last time (about a month ago), it has taken a bit longer. I have used the magnet a few times this past few weeks, and noticed that it is definitely stronger, and although not "painful", it is uncomfortable.
I would definitely have the neuro check it out, and see if the leads have shifted. Lots of people react differently to it, and your feelings should not be discounted by Cyberonics. I hope they have filed a "side-effect" report on your issue.
Good luck, and keep us posted,
Barbie
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"We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo
Re: Re: Re: Re: vns therapy side effects
Submitted by angel_lts on Thu, 2006-02-16 - 19:58
Lindsay, The doctor has to turn it off for you. But it sounds like yours is working for you, why would you want to turn it off. Having an aura is nothing. It is not going to catch everything. Unless the setting is more often. Take care Lisa http://health.groups.yahoo.com/group/epilepsyapproach/