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VNS clearly not for everyone!

Tue, 04/19/2005 - 18:10
I had to post this here as I posted in the General Folder but I find this a good place this. I had the VNS implanted last Fall, lost my voice for 8 weeks due to vocal cord paralysis, once back I could tell that my voice/throat were far from being thealed . It left me very uncertain I would ever turn it on and so 6 mnths after having more seizures, I had it set at the lowest setting, we increased it slightly and had to return the setting to the lowest possible as I was too sensitive to it. I was choking,hoarse,not sleepy well,had an overall feeling of listlessness my cognitve functions were cloudy and extreme fatigued all of this is unusual for me.Over the 5 weeks that I had the VNS on, my seizures increased from a norm of about 4-5 a month to having 18 in a five week period, something I have ever experienced in 36 years of Epilepsy. I could not tell you it was solely because of the VNS and will maybe never know. So on tuesday of this week I had the VNS turned off, since then in tow days time others have noticed I am back to my real me and many of the above symptoms I was feeling are reduced, gone or getting much better. It is like day and night. I truely feel like a different person. I now feel certain I will never use it and have the battery pack removed. I feel it important to say here that for some it is a wonderful improvement over the seizures they are having. For them I truely am happy and wish I could have been one of those. but I know there are many unsure if it is right for them or how it could impact them. SO as an advocate of why it is important to know all you can both the pros and cons of this options . Which I honestly can say I did not know enough and for this I regret it greatly. Plus knowing human stories of what happens for others.May each of our Journeys be lightened by our proactive learning. Best to all out there!

Comments

Re: RE: RE: RE: RE: RE: RE: RE: RE: VNS clearly not for everyone

Submitted by venus666 on Tue, 2007-06-05 - 18:02
hello linda i've had seizures since the age of seven i've tried medication that was fda appoved and some meds that weren't approved. In 1998 I was implanted and had a baatery change in 2001 and due soon for a third battery change. I have become somewhat of a expert of all the side effects of this implant.The battery has no effect when stimulation is not in effect.What my biggest concern are the coils in your neck they could NEVER be removed even if the implant is taken out.I wish I could just live on meds but in my case the vns has stopped all daytime seizures.Now I can do alot with my kids then before so everything with seizures has a postive and negative.We all hope for cure but for now live laugh and make the most out of life. Hope I helped out with the battery question

RE: VNS clearly not for everyone!

Submitted by batman on Thu, 2005-04-14 - 16:23

There's a VNS Message Board online that I've know about. I went to it and noticed that it doesn't have all of the loaded postings and replies like before. I just registered it and awaiting for approval. I have no idea if everything is still on it, but do know that it was loaded with postings from those who have it, someone they know who has it and those who are curious about the VNS.

Ok, I just received approval via email and the VNS Message Board is still loaded with postings and replies. But everyone must register.

Home page for it is at http://s4.invisionfree.com/VNS_Message_Board/index.php?act=idx

Bruce

 

There's a VNS Message Board online that I've know about. I went to it and noticed that it doesn't have all of the loaded postings and replies like before. I just registered it and awaiting for approval. I have no idea if everything is still on it, but do know that it was loaded with postings from those who have it, someone they know who has it and those who are curious about the VNS.

Ok, I just received approval via email and the VNS Message Board is still loaded with postings and replies. But everyone must register.

Home page for it is at http://s4.invisionfree.com/VNS_Message_Board/index.php?act=idx

Bruce

 

Thanks for the plug

Submitted by Birdbomb on Mon, 2005-04-18 - 01:21
Thanks for the plug batman.Hi every one,I am the owner of the The VNS Message Board My personal experiance has not be a good one and my unit has been turned off for 1 1/2 years now. I still have residual side effects that have not gone away. And I developed Severe Sleep Apnea.According to the statistics the VNS will help about 1/3, 1/3 will have little or no change and 1/3 will have an increase in seizure activity. It's a crap shoot. You just don't know if it will help until it's implanted. One problem is having it explanted. The generator and wires can be removed but the lead connection on the nerve cannot be. Damaging the Vagus nerve is too great.

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