Community Forum Archive
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VNS Horror Story
Tue, 01/08/2008 - 16:44I was diagnosed with epilepsy 16 years ago at the age of 34. My seizures have never been controlled with medications. Due to multiple focal points I didn't qualify for brain surgery. My neurologist suggested the VNS and I decided to give it a shot. I had the surgery on 7/21/00. The device never helped my condition but I didn't regret my decision to try it, that is until 7/02/06 when the device nearly killed me. On that date I started having what I thought were atonic seizures (I know better now). The episodes began with a sudden sharp pain to the throat followed by a split second of choking and then 30 seconds of unconsciousness. I never had atonics before and thought the throat pain/choking were just a strange kind of aura. My parents happened to stop by that sunday morning for a visit. They realized something was terribly wrong and called my neuro and EMS. My last memory of that morning was being inside of an ambulance. The next thing I remember was waking up in the ICU. What was actually happening is the device was stopping my heart (asystole) during the 30 second on cycles. Once my neuro realized that the problem was cardiac and not seizure activity he had to rush to his office to retrieve the equipment to deactivate the VNS. Once the device was turned off I regained a normal heart beat and have never had another "atonic" since. My VNS was programmed at 30 sec/3 min and I experienced approx 40 episodes of asystole. It's a miracle that I survived that ordeal.
Re: VNS Horror Story
Submitted by bernardcwe on Sat, 2008-03-01 - 08:51
This is not correct. Cyberonics says:
Long-term Seizure Control with VNS Therapy™
There are other alternatives to the VNS (EEG neurofeedback, neurobehavioral therapy, LGIT diet, Modified Atkins diet and the Ketogenic diet for example) that studies have indicated are more efficacious and which have much fewer and less severe potential adverse events.
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Check out my chart of alternative epilepsy treatments.
This is not correct. Cyberonics says:
Long-term Seizure Control with VNS Therapy™
There are other alternatives to the VNS (EEG neurofeedback, neurobehavioral therapy, LGIT diet, Modified Atkins diet and the Ketogenic diet for example) that studies have indicated are more efficacious and which have much fewer and less severe potential adverse events.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Check out my chart of alternative epilepsy treatments.