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VNS Hurt And Sz’s Occurring!

A MyEpilepsyTeam Member asked a question 💭
Piedmont, CA

Called office the afternoon the VNS was increased in morning. That afternoon had flurry of seizures!
They wanted me in ER if it doesn’t stop! Brother!

November 4, 2023
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A MyEpilepsyTeam Member

That happened to me before, but it had been my fault due to crossing area more then once. I made mistake crossing area implant was made more than once and learned that's why. I was only to cross once.

November 4, 2023
A MyEpilepsyTeam Member

I hope this is resolved and that you'll feel safe again Toni!

November 4, 2023
A MyEpilepsyTeam Member

That happened to me before..
My neurologist changed a setting and I didn't even make it out of the building and had to go back to the office and he did another adjustment.
It is rather concerning that we have a VNS and not many healthcare professionals know how to Deal with or adjust them.
I wish you well

November 4, 2023
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A MyEpilepsyTeam Member

I can feel my VNS working sometimes also. I sleep on my left side and trying to train myself to sleep on my right side instead. Sometimes it will wake me up with a buzzing sound. The times that I actually feel it are when I'm sitting still and not doing anything to keep my mind busy. My epileptologist said that this is normal

December 2, 2023 (edited)
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A MyEpilepsyTeam Member

I first had the VNS device placed in 2008 then have been working with a wonderful group of medical professionals and medical staff that know the device. The current epileptologist I have is wonderful as he does exactly what is needed for the VNS. With the epileptologist and medical staff taking care of this VNS device, I am in very good hands. The medical university I visit for medical care receives high ratings every year for treating epilepsy patients, so I trust them and wouldn't go anywhere else.

When my VNS displayed a pain level for the first time, it raised an eyebrow to the point that I called the neurological office and asked what was going on. If it continues, I was asked to contact them again as I might need to make changes. According to what I was told, a VNS can cause a "bite" which can go away, but if it persists, it can be troublesome and be a cause for concern for a return visit. In my case, that "bite" happened once, then it never happened again. I kept a log of dates and activity to keep my epileptologist informed of all new VNS updates as well as any other activity.

November 5, 2023 (edited)
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