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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: VNS clearly not for everyone!

Submitted by Cedar on Tue, 2005-04-19 - 12:12
Yakota, I have complex & simple partial seizures, caused by a malformation of the brain which caused bi lateral /refractory epilepsy.I have been on 8 meds. I have epilepsy for 36 years. I am in perimenupause which is also afecting my seizures. I am currently on Keppra1500 a day, trileptal 1800 (though will be decreasing off this) as I am introducing Lamictal very slowly. Let me know if I can help any further.

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

Submitted by Yakota on Thu, 2005-05-12 - 22:22
Hi Cedar. OOPS. Sorry I missed this thread. (Better late than never.) With the menopause are you having more or less seizure? Are you part of any reseach study related to harmonal change and seizure?Have a good one. Blessings. Linda.

RE: VNS clearly not for everyone!

Submitted by Belinda on Sat, 2005-04-16 - 10:16
I had my VNS shut off March 21stI couldn't take the choking anymore.This is after I've had since 2000.Belinda

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