Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

vns therapy side effects

Wed, 02/15/2006 - 10:10
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: vns therapy side effects

Submitted by mec1967 on Tue, 2011-12-06 - 13:23
i want to thank every one of u for the input on the vns i have not had it put in yet but something in me said dont do it my nuero made it out so good not mentioning any of these probs i had tens machine put on me in physical therapy once and went into a gmal instantly , so i have decided against the vns. there is supposed to be a t-vns out in 2012 that dont require surgery so i think ill wait till then wish you all the best  

Re: Re: vns therapy side effects

Submitted by angel_lts on Thu, 2006-02-16 - 14:04
Mine was implanted in Jan of 01. It was on for eight months. There was no change for me at all. Unless I swiped it when I needed when a seizure was going to occur. It was turned off because I got sleep apnea from it, which is very rare, but it does happen. I really like the VNS now even better. For I can swipe it on again when I needed. It is like a security blanket for me, I have something to help me out if a grand mal was going to happen. Plus I hated it, when it was turned on. My voice is very deep as it is, and when the VNS would turn on it was very noticeable. But I would not do without it now. take care Lisa http://health.groups.yahoo.com/group/epilepsyapproach/

Re: Re: Re: vns therapy side effects

Submitted by Lindsay Duso on Thu, 2006-02-16 - 17:49
Lisa, How do you turn it off? I still have a lot of time to think about it, but I might have mine turned off. I am a stage actor, and I do not like the vocal change. Thanks, Lindsay

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.