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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 Yakota on Tue, 2005-04-19 - 14:13
Hi JoAnee. Iam not saying the vns is a bad thing. I never had any bad side effects from it. More than likey it will be what my nuero decides to work with to control the seizure I am now having due to the harmonal change from menopause. Face it. I would rather try to control the seizure with the vns than with meds. I don't like taking drugs but then who does? And when the vns was on it worked to abort seizure. I am in no way implying that the vns is bad. When I needed it it worked. It looks like I may need it turned on again. I am glad the vns works for you. Have a great day okay. Goodbye. Linda.

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

Submitted by Yakota on Tue, 2005-04-19 - 13:18
I forgot. Cedar what exactly happened to your speech when you first had the vns? Anyone else have any cognitive problems from the vns that were either evident right after implant or have over time gone away? Thanks. Linda

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

Submitted by Cedar on Tue, 2005-04-19 - 18:10
In regards to what happen after surgery. My left vocal cord became paralysis, two daysafter the surgery. Itwas not obviously suppose to happen. So when I spoke I had a very raspy high pitch weak voice and if I talked much I losted it. My voice is typically a medium deep voice. However when this occurred It became very high pitched and after test were done they did not know if it would be 2-6 month for them to know if it would be normal again. Fortunately it has returned to nornmal however, If I call loudly for my dogs or call across my yard sometimes I cough . the whole incident made my coughing impossible, eating was a tough one as my muscles in the area were temporally injured. even any kind of straining made me make odd noises. It was a tough experience to go through. fortunately it only lasted about 2 months but I do not ever want to go through it again.Take care! sorry to hear you are having a tough time with seizures. I was told to not ever go off the meds as it was too dangerous . I hope this does not put you in risk of status seizures.What are you doing to not have seizures are you trying any natural methods or supplements to help. Best to you through this tough time.

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