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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 AJR on Thu, 2007-05-03 - 11:45
Thank you for the weblink. I had VNS 18 months ago and am interested in corresponding with others in the same position. Thanks again Andrew

RE: VNS clearly not for everyone!

Submitted by Yakota on Fri, 2005-04-15 - 17:33
Hi Cedar. Sorry to hear that you had so much trouble with the vns. I too have a vns. My implant was turned off in October of 2004. It didn't work for me either. I am intereted in how the frequency of your seizures may have increased while the vns was turned on. Are there any other side effects that you experienced while the vns was turned on that were not characteristic of your ususal seizure pattern? Do you know of anyone else who has had their vns turned off due to complications or sid effects? Please respond. Thanks. Yakota

RE: RE: VNS clearly not for everyone!

Submitted by Cedar on Tue, 2005-04-19 - 12:05
Yakota, my appologies for not getting back sooner. I have had the vns on for about 5 weeks suddenly my cognitive funtions of memory, pronouncing of words and everything around me seemed very confusing to me. I was quite scared. My seizures in past months were usually about 4-6 weeks seizures a month. After the VNS was turned on, in the 5 it was on I had a total of about 20 seizures. Averaging 5-6a week plus all the other side affects of cognitive problems, coughing, choking during the use of the magnets to the point I was unable to breathe the last time I used it it scared me and my partner. Lastly during the 5 weeks I had no energy and just felt poorly. I really did not understand why.I have had the VNS off now for8 days and I feel like a different person, more energy, calmer, want to do things and have only had two times where my speechof a word has gone out but no actual seizures. I do feel as though I am having to readjust my body to normal again. Wher I had pain in my ear now it feels like it is healing from deep with in, my digestion which was off duringit being on is adjusting again, my voice is healing and I just feel my over all body has much healing to do from all the seizures I did have.I am sure to have the battery removed. Though am not sure what can be done about the leads . Would be ver interested to hear from others about that. Do the float once detached from pack or stay in place. I just feel strongly from my experience that too little is truely understood of how it will affect the body and the risk is too high it is a great disappointment to me that I agreed to do it as the scars will always remind me of it! Feel free to let me know of any guestions further you have. Sorry it was long post.

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