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Increase of seizures of years with VNS

Tue, 02/04/2020 - 01:55
Hi guys! So let me tell you my husband's story - He was diagnosed with epilepsy in 2009. His neurologist at the time suggested that it may be because he was given the K2 spice (not that he knew about it) at a party in college almost 2 years previously. His first seizure was while he was at work (bartending, age 21). There is no blatant trigger to what essentially 'set off' his epilepsy. He had taken anywhere from 6 to 10 different medications from 2009-2016; none of these controlled his seizures enough for him to be able to drive. In 2015 his doc started mentioning the Vagus Nerve Stimulator. We decided that the side effects were tolerable if the overall outcome was favorable. He had the device implanted in June 2016 and it was turned on about 2 weeks later. He had a tonic-clonic seizure about 2 weeks after that then was seizure free for over 3 years! He got his freedom back. During that time his neurologist continuously told him to lose weight (he is 5'3" and was 195lbs at the time), he lost about 20lbs in this time and remained pretty active. In September of 2019 (my birthday, but no one's bitter) he had his first seizure in years. He was driving home and had a tonic-clonic seizure. He totalled the car he was driving and by association had his driver's license revoked. In September he had that one seizure, in October he had two, in November it was one, and then came December… in December he had three. Since January 1st he has had three. The last two were exactly a week apart. My question is this- how many of you have had an upsurge after years of being seizure free with the VNS? At the time of his implant the VNS had immensely less bad reviews so he and I thought it was the best option. Now, after seeing the complications since then, we aren't sure we made the right decision. We've done our research but quite a few of what we've read as complications have to do with the side effects that are common, i.e. shortness of breath, hoarseness, etc. Neither of us can find any information regarding an increase of seizures after years. His doc says his battery life is still above 60% though so I don't believe that is an issue. We are seeking a second neurologist opinion but I'm hoping that we aren't an odd man out. I'm hoping someone else's story can help us to make some kind of conclusions.


Hi, Thank you for posting, it

Submitted by Anonymous on Tue, 2020-02-04 - 09:07
Hi, Thank you for posting, it sounds like you all have been through a lot. We are happy to hear that your husband is okay after having his car accident, that must have been very scary and frustrating for you all to experience. The efficacy and side effects with the VNS device varies for each individual and we cannot determine if his increase in seizure frequency is related to the device or not. We are glad that you all are seeking out a second opinion to discuss this further or additional concerns you all have and if he continues to experience changes in seizure frequency/types, side effects, symptoms, moods and behaviors to help determine what individual treatment plan is best for him. For additional information about the VNS device, please visit: You all may want to consider keeping a journal or diary. My Seizure Diary: a great tool for identifying & tracking seizures, side effects, moods, behaviors, triggers,setting reminders, organizing his medical history and other therapies or personal experiences, that may affect seizures and wellness, which can be shared with his healthcare team. It’s common for those who are in a caregiver role to feel overwhelmed. It’s important to remember that you are not alone, and that you’re taking care of yourself and making your health and overall well-being a priority. it’s helpful to connect others who care for individuals living with epilepsy, to better help support you and your important role. The Epilepsy Foundation has many resources available that can help you find and build upon your support network. Contact your local Epilepsy Foundation, here: , to find support groups, events, and programs in your community, or contact our 24/7 Helpline: 1-800-332-1000,, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources,  

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