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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: vns therapy side effects
Submitted by Lindsay Duso on Wed, 2006-02-15 - 19:22
May I ask you why you decided to have your VNS turned off? Mine was implanted in June of '06, so I am still getting my adjustments. I have thought more than once in having it turned off. What was your final reason to have yours turned off?
Thanks,
Lindsay
Re: Re: Re: vns therapy side effects
Submitted by helenpe1 on Wed, 2006-02-15 - 21:40
re: vns therapy side effects
I'm sorry I think my message was confusing. I had my vns temporarily turned off last summer for about 3 weeks when the 'tingling' was really severe (like continuous bee stings) but it was turned back on at a lower frequency and it has not been as bad. That was the only time I had it off and I have had it since May of 2004. Overall I have been happy with my vns but I do find the 'tingling' uncomfortable and I worry that it might get bad again. The bee stinging sensation was absolutely unbearable. However as I said before I find that I have fewer trips to the ER thanks to my vns which is great and therefore I hope that the 'tingling' will remain manageable. How are you doing with your vns? Why have you thought about having it turned off - I'm curious.
Thanks,
Helen
Re: vns therapy side effects
Submitted by angel_lts on Wed, 2006-02-15 - 16:39
I have the VNS but it is turned off. I didnt experience that problem at all. I would contact your neuro and maybe they can do xrays or whatever in your neck area. I would contact them right away. take care lisa http://health.groups.yahoo.com/group/epilepsyapproach/