1. < Epilepsy & Seizures

Wondering if anyone has had the vagus nerve stimulation

Posted by acpsulli @acpsulli, Sep 11 11:49am

My son started having tonic-clonic seizures in Aptil. He is 15 and also has high functioning autism. So far we've only tried Keppra and he is at 1500mg BID. He continues to have breakthrough seizures and right now they are averaging every 6-7 days and he has had two seizure clusters in the last month. We had an extended EEG study done a few weeks ago and should get the results back this week. We don't like the side effects of the Keppra and obviously it's not working, but we really don't like the potential side effects of any other AED we've read about. Everyone says you have to have tried at least two AED's without success before qualifying for the VNS device. My question is, is anyone using the VNS device to control their seizures? If so, any feedback on it would be great. Second question, did anyone have luck getting approved for it before going through several medications first.

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happyrivers9 | @happyrivers9 | Oct 1 9:37pm

Our son has had vns since 1998. But first they tried almost every seizure drug and combination of drugs for years and years. So vns might be helpful but doctors try meds first.
He takes 4 seizure meds and seizures are kept from being too severe. VNS helps some.
His seizures are so extreme that he has now received a deep brain stimulator. It hasn’t been programmed yet so still waiting to see results.
So try all the medications before considering a vns. The battery has to be surgically replaced every few years.

REPLY
1 reply
acpsulli | @acpsulli | Oct 8 9:21am
In reply to @happyrivers9 "Our son has had vns since 1998. But first they tried almost every seizure drug and..." + (show)
@happyrivers9

Our son has had vns since 1998. But first they tried almost every seizure drug and combination of drugs for years and years. So vns might be helpful but doctors try meds first.
He takes 4 seizure meds and seizures are kept from being too severe. VNS helps some.
His seizures are so extreme that he has now received a deep brain stimulator. It hasn’t been programmed yet so still waiting to see results.
So try all the medications before considering a vns. The battery has to be surgically replaced every few years.

Jump to this post

@happyrivers9 thank you for the feedback and sharing about your son’s journey. I would love to hear how the deep brain stimulator works for him. I’m hopeful for all of you that it brings more relief from his seizures.

REPLY
1 reply
happyrivers9 | @happyrivers9 | Oct 8 10:12am
In reply to @acpsulli "@happyrivers9 thank you for the feedback and sharing about your son’s journey. I would love to..." + (show)
@acpsulli

@happyrivers9 thank you for the feedback and sharing about your son’s journey. I would love to hear how the deep brain stimulator works for him. I’m hopeful for all of you that it brings more relief from his seizures.

Jump to this post

Deep brain stimulator was programmed 10/3/24 at Mayo so it’s only been on a few days. So far so good. It has 3 programs with different frequencies which we can change with his handheld Bluetooth device.

REPLY
1 reply
Moderator
Lisa Lucier, Moderator | @lisalucier | 2 days ago
In reply to @happyrivers9 "Deep brain stimulator was programmed 10/3/24 at Mayo so it’s only been on a few days...." + (show)
@happyrivers9

Deep brain stimulator was programmed 10/3/24 at Mayo so it’s only been on a few days. So far so good. It has 3 programs with different frequencies which we can change with his handheld Bluetooth device.

Jump to this post

Hi, @happyrivers9 - how are things going with the deep brain stimulator programmed last month?

@acpsulli - wondering how your son is doing? Are you still investigating vagus nerve stimulation?

REPLY
happyrivers9 | @happyrivers9 | 2 days ago

Deep brain stimulation going well. My son seems to be having much fewer seizures.
He has had a vagus nerve stimulator since 1998. It helps some. The deep brain stimulator has a rechargeable battery but the VNS does not. The VNS battery should last 5 years or so. But his VNS activates every 30 seconds so every 2 years they take him to surgery and replace the battery. So he now has a deep brain and a vagus nerve stimulator. 2 devices.

He has a rare form of epilepsy called Lennox-Gastaut Syndrome (LGS) a rare and severe form of epilepsy that began at age 4. It’s characterized by multiple types of seizures, cognitive impairment. His cognitive impairment is mild. He often often experiences tonic (stiffening) and atonic (drop) seizures.
He has to wear a helmet so when he falls he won’t hit his head.
They can’t completely control his condition even with these 2 devices and lots of seizure medications. His seizures are less severe and not as often.

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