The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

VNS Horror Story

Tue, 01/08/2008 - 16:44

I 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.

 

Comments

It wasnt the vns

Submitted by epicnick1985 on Sat, 2018-04-07 - 22:26
There are types of seizures that can actually kill you. A woman died in a seizure study, it sounds like she may have had the same as your daughter, these type of seizures controll a part of the brain which controls lung funtion. Thats why these are deadly,,,unless you know your facts you cant scare people out of a great device, people can die with out it, even with less dangerous epilepsy

Re: VNS Horror Story

Submitted by banffgirl on Sat, 2008-03-01 - 02:46

everything you discribed are side effects of the vns device in my book i recieved with the magnets after getting the implant. your neuro should have picked up on that right away. plus you should always have your magnets on you, either clipped to your belt or on your wrist. that way it would have been there for the neuro to turn the unit off with out having to go to his office for equipment. regard less what they thought it was, your magnet would have been there for immediate use once they figured it out. all things to help our siezures have side effects including our meds. i am glad everythimg turned out for the better for you. i hope though you dont scare people away from getting the vns. it is 50% chance of working on uncontrolable siezures when all else has failed. so it does give alot of people a chance for a better life.

life is fragile, handle with care.

banffgirl

everything you discribed are side effects of the vns device in my book i recieved with the magnets after getting the implant. your neuro should have picked up on that right away. plus you should always have your magnets on you, either clipped to your belt or on your wrist. that way it would have been there for the neuro to turn the unit off with out having to go to his office for equipment. regard less what they thought it was, your magnet would have been there for immediate use once they figured it out. all things to help our siezures have side effects including our meds. i am glad everythimg turned out for the better for you. i hope though you dont scare people away from getting the vns. it is 50% chance of working on uncontrolable siezures when all else has failed. so it does give alot of people a chance for a better life.

life is fragile, handle with care.

banffgirl

Re: VNS Horror Story

Submitted by dennis100 on Sat, 2008-03-01 - 06:23
Asystole during the 30 second on cycles occuring six years post-op was never listed as a side effect in the manual that I received. Maybe it has been updated since that time.

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.