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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

VNS

A MyEpilepsyTeam Member asked a question 💭
Roodepoort, ZA

My daughter is 15 and has uncontrolled epilepsy. Her Doctor suggested the non invasive VNS. Has anyone tried it yet? Those who has the VNS internal, how has it helped? How often does one need to change the the VNS. How invasive is it and do you feel strange with it in you? Seems that's the only route left for my daughter to go towards after so many changes, adjustments to meds and testing.

May 14
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Reactions
A MyEpilepsyTeam Member

The VNS has changed my life ! Before VNS and less but better meds I couldn’t do anything including bathing by myself . Now that I have it the only thing I can’t do is drive .

May 15
A MyEpilepsyTeam Member

I tried the VNS and again for my uncontrolled seizures it didn't work,.She may great luck though, it worked awhile for me my seizures did decrease some and they changed like they seem to do all the time.I was 38 when I got the VNS.
I do wish you all the luck in the world for your daughter having the VNS.

May 18
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
I understand what you’re saying. Every time doctors started me on a new medication I would go awhile without a seizure but then they’d all be back to normal. The cause of my seizures is Hypoxic Ischemic Encephalopathy where I got no blood nor oxygen at birth. If the VNS doesn’t work doctors can surgically remove it, that’s what I did. Whatever you choose to do I pray you get the best results.

May 16
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
I got the VNS when I was 17 years old. I never had any luck with it reducing my seizures but that doesn’t mean your daughter won’t have luck. When the VNS turned on it would tickle my throat and make me cough but I eventually got more used to it. After the VNS I got the RNS (Neurostimulator) so that could still be another option for your daughter. Doctors are now talking to me about getting a Deep Brain Stimulator (DBS).

May 15 (edited)
MyEpilepsyTeam

It sounds like you and your daughter have been through a lot trying to find the right path forward. VNS is a well-established option for drug-resistant epilepsy in people aged 4 and older, so your daughter would qualify.

Here's what's helpful to know about the implanted VNS:

- A small device (similar to a pacemaker) is placed Show Full Answer

It sounds like you and your daughter have been through a lot trying to find the right path forward. VNS is a well-established option for drug-resistant epilepsy in people aged 4 and older, so your daughter would qualify.

Here's what's helpful to know about the implanted VNS:

- A small device (similar to a pacemaker) is placed under the skin near the collarbone
- A wire connects it to the vagus nerve in the neck
- It sends regular electrical pulses to the brain to help reduce seizures
- A magnet worn on the wrist or belt can be swiped over the device to help stop or shorten a seizure when needed
- Some newer devices can even detect a rising heart rate during a seizure and respond automatically Regarding how well it works, research shows that about half of people using VNS see their seizures reduce by at least 50 percent. Benefits tend to improve the longer it's used, often over one to two years.

One MyEpilepsyTeam member shared: "My child has had a vagus nerve stimulator for over seven years because of their drop seizures. We swipe them, and the seizures stop."

Another MyEpilepsyTeam member noted: "Since my VNS was inserted 12 years ago (with one battery change two years ago), my seizures have been controlled. I have a checkup every six months." As for the battery, it does need replacing periodically, which requires another small procedure. It's worth asking the neurologist about expected battery life for the specific device recommended.

Some side effects to be aware of include:

- Hoarseness or voice changes
- Coughing or throat discomfort
- Trouble swallowing
- Possible limitations with MRI scans
- Needing to carry a therapy card through airport security

It's not uncommon for people to feel a little odd at first with the device, but most adjust over time. Most importantly, medication is usually still continued alongside VNS therapy.

It's absolutely worth having a detailed conversation with her neurologist about what to realistically expect. 💙

May 14

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