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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: VNS clearly not for everyone!

Submitted by Yakota on Sat, 2005-04-16 - 12:05
Hello Belinda. Thanks for the quick response. How long was your vns on for before it was turned off? Outside of the choking did you have any other complications? Do you know how often your stimulator was set to go off and how long did it stimulate? Prior to implant what was your med regiment like? How many different combinations of drugs did you try before deciding on vns theray? What type of seizure do you have? Do you know any other people who have had complications with the vns or have turned it off? Have a seizure free Saturday. Yakota.

RE: RE: RE: VNS clearly not for everyone!

Submitted by Belinda on Sat, 2005-04-16 - 13:29
Yakota,My VNS set to go off every 1.1 minutes.I was vibrating from the VNS I'd had 16 different sideeffects.I've been on 18 different meds.Yes I've heard of other ppl who have turned the VNS off because of complications and some have even had it removed.I was set at 2.25 MA I have tonic-clonic, absense, partial.Belinda

RE: RE: RE: RE: VNS clearly not for everyone!

Submitted by Belinda on Sat, 2005-04-16 - 13:35
Yakota,I forgot tel you also have complex-partial. Belinda

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