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Vagus nerve stimulation therapy in epilepsy

In this section

Introduction
About VNS therapy
How VNS therapy works
People who may be considered for VNS therapy
About VNS surgery
Benefits of having VNS surgery
Risks of having VNS surgery
Side-effects of VNS therapy
Epilepsy medicines after VNS surgery
Replacing the generator battery
Further information

Introduction

This information explains what vagus nerve stimulation therapy is and how it can help you if you have epilepsy. Vagus nerve stimulation is usually referred to as VNS, and that is how we refer to it throughout this information.

About VNS therapy

The aim of VNS therapy is to stop seizures or make them less severe. VNS therapy involves sending electrical impulses from a small generator in the chest. The impulses go first to the vagus nerve in the neck, and then to the brain. By stimulating the vagus nerve, the generator makes the vagus nerve send its own electrical signal to the brain.

There are three pieces of equipment used in VNS therapy.

  • A small programmable generator
  • A lead with two coils at the end
  • A hand-held magnet

How VNS therapy works

The vagus nerve carries messages between the body and the brain. During VNS therapy, a generator is programmed to send impulses to the vagus nerve at regular intervals, all day, every day. This is to stop excessive electrical activity in the brain that causes seizures. If need be, you can also sweep the hand-held magnet over the generator to send more impulses to the vagus nerve. This could be when you feel a seizure starting, or when you are having a seizure. A carer, or family member, can also use the magnet, if they see you having a seizure. The magnet can also be used to stop the stimulation for a short time. You do this by holding it over the generator for at least 65 seconds. Your epilepsy nurse or doctor will be able to tell you more about this.

Although the generator is programmed when it is fitted, it can also be adjusted afterwards if necessary. This would probably be at an outpatient appointment with a doctor or epilepsy specialist nurse.

People who may be considered for VNS therapy

The National Institute for Health and Clinical Excellence (NICE) is an independent organisation that provides guidelines for treatment and care for people using the NHS in England, Northern Ireland and Wales. NICE say that VNS can be used as an add-on therapy for difficult to control epilepsy in children, young people and adults in the following two groups . Group 1 looks at people who have focal (partial) seizures. Group 2 looks at people with generalised seizures.

Group 1

If you are in this group, you must meet all of the following four requirements.

1. You have seizures that are not controlled with the right dose of the right epilepsy medicine or your epilepsy medicine causes you too many side-effects.
2. You are not suitable for epilepsy brain surgery or you have had epilepsy brain surgery but you are still having seizures.
3. You have at least two focal (partial) seizures each month where your consciousness is affected or you have had more than one period of life-threatening status epilepticus.
4. You have tried three first-line epilepsy medicines over a period of at least two years. First-line medicines are usually the first ones prescribed when you are starting epilepsy treatment.

Group 2

If you are in this group, you must meet all of the following four requirements.

1. You have seizures that are not controlled with the right dose of the right epilepsy medicine or your epilepsy medicine causes you too many side-effects.
2. You are not suitable for epilepsy brain surgery or you have had epilepsy brain surgery but you are still having seizures.
3. You have at least one generalised seizure each month or you have had more than one period of life-threatening status epilepticus.
4. You have tried three first-line epilepsy medicines over a period of at least two years. First-line medicines are usually the first ones prescribed when you are starting epilepsy treatment.

If you think VNS therapy might help you, you should talk to your epilepsy specialist.

Epilepsy Action has more information about NICE and epilepsy surgery

About VNS surgery

VNS surgery is carried out by a neurosurgeon. The operation takes approximately one hour and you usually go home the same day, or the next day. The neurosurgeon makes two small cuts, one in a natural crease on the left of your neck, and one in the left-hand side of your chest, below you collarbone. The generator is placed under the skin in your chest. A thin, flexible wire connects the generator to the left vagus nerve in the neck. The small scars from the two cuts fade over time.

The generator is usually left switched off for two weeks after surgery. This is to help your body heal. After that, it is usually switched on by a specialist nurse in a clinic. They will gradually increase the settings over a number of weeks. This gives you chance to get used to the stimulation over time.

Benefits of having VNS surgery

It can take from a couple of months to two years after the VNS is implanted to notice a difference in seizure control. The benefits of having the VNS can include the following:

  • Having fewer seizures
  • Having less severe seizures
  • Having improved quality of life

Risks of having VNS surgery

The VNS operation is usually done under a general anaesthetic. As with any type of operation, there is a slight risk of reaction to the anaesthetic. There is also a small risk of bleeding and infection. There can be other rare complications. Your surgeon will give you more information before the operation takes place.

You might have some pain for a while from the area of the implant after VNS surgery. Your doctor can prescribe something for this.

Side-effects of VNS therapy

VNS therapy is not a drug, so doesn’t have the same sort of side-effects as epilepsy medicines, and it doesn’t interact with other medicines.

These are the most common side-effects reported from having the VNS implant.

  • Temporary hoarseness/change in voice tone
  • Sore/tickling throat
  • Shortness of breath
  • Coughing

These side-effects happen during stimulation periods, and usually get less over time. If you continue to have side-effects, talk to your epilepsy nurse, to see if they can help.

Epilepsy medicines after VNS surgery

Your doctor is likely to recommend that you take your epilepsy medicines as usual for several months after the operation. They will then talk to you about any possible changes to them.

Replacing the generator battery

At some point, the generator will need replacing when the battery runs low. The generator usually lasts for around three to six years, depending on the settings used. The higher the frequency and output of the settings, the faster the battery will run down. Your doctor or nurse can tell when the battery is running down during your follow up appointments. They will then arrange for a new generator to be fitted. This involves a small operation, which lasts less than an hour.

Further information

Further information is available from Cyberonics, who make the VNS devices. 

Pay it forward

This resource is freely available as part of Epilepsy Action’s commitment to improving life for all those affected by epilepsy.

On average it costs £414 to produce an advice and information page – if you have valued using this resource, please text FUTURE to 70500 to donate £3 towards the cost of our future work. Terms and conditions. Thank you


We can provide references and information on the source material we use to write our epilepsy advice and information pages. Please contact our Epilepsy Helpline by email at helpline@epilepsy.org.uk.
Code: 
F016.02

Epilepsy Action would like to thank Anne Brown and Catie Picton, Clinical Nurse Specialists at Nottingham Children’s Hospital, UK, for reviewing this information. Anne Brown and Catie Picton have declared no conflict of interest.

This information has been produced under the terms of The Information Standard.

  • Updated May 2013
    To be reviewed May 2016

Comments: read the 17 comments or add yours

Comments

I am looking for some advice, my wife had brain surgery to remove part of a tumour 7 years ago, but after the surgery she has been left with epilepsy which has gone from bad to worse over the years to the point were she can have up to 5 partial seizures a day and can't be left on her own and has no quality of life. I have found some information on line about vagus nerve stimulation and was wondering if any one could tell me if thus procedure would be worth looking into because AEDS don't seem to help no matter how many times they have increased or changed them!!

Submitted by kevin thompson on

hi my name is rebecca leach, i am a carer to my son who is niall 8yrs old. i would like to get as much information as i could about m vns therapy as my son suffers seizures regularly and is being considered for vns as he is no longer a candidate for neuro surgery . mixed emotions as what to do now can you help me please? regards Rebecca Leach

Submitted by hi, my sons nam... on

To Rebecca Leach, I've been reading about your son Niall who has regular epilepsy seizure, it was tonic clonic epilepsy (no memory) that I had very often (sometimes 3 or 4 a day) and was offered VNS which not only helped with stopping loads of seizures but brought my memory partially back to work. As soon as an aura is felt the magnet must be used, so good luck with it all if you do go ahead with it.

Submitted by Elaine Brown on

Hi I am 42 years old and have had epilepsy since my early twenties I've recently been having more and more seizures and it beginning to have a dramatic impact on my life as I am missing work more and am at risk of losing my job , I'm worried about going out in case . I also live on my own now which worries me
To me My meds just don't seem to be working and have been looking at other options to assist the control of the seizures and was told about VNS do you think I would Benifit from this
Thanks in advance

Submitted by Chris on

Hi Chris

Thanks for your message. It must be a very tough time for you right now. To learn if VNS therapy is something that might help, you should speak with your epilepsy specialist. There are specific criteria for who might benefit from VNS. Your doctor will take these into consideration with you to determine if VNS should be an option to think about.                                              

If you would like to speak to an adviser about your work and living with epilepsy,please call the Epilepsy Helpline freephone 0808 800 5050, or email helpline@epilepsy.org.uk.

Sacha

Advice and Information Team

Submitted by Sacha on

Hi Chris, I have just been reding about what happened to yourself. I am 33 and developed secondary epilepsy to limbic encephalitis. Nearly every anti epileptic drug has been tried but my body just doesn't react positively so there aren't many days go by without me having a seizure. But I don't let that stop me. I work full time, live on my own, travel on my own, go to the gym, go shopping and the VNS gives me the confidence to do this because I know the magnet is there if I get an aura and it will then stop a seizure. A service provided by the council, 'life line' also gives me that reassurance in case a seizure happens. I hope this has helped you decide what to do.

Submitted by Claire Stephenson on

Hi. My daughter has Autism and challenging behaviour along with uncontrolled epilepsy. I've just has VNS mentioned to me. I know very little about this only what I've read on this site. Please give me all your stories, good or bad. I have a big decision to make, and I want it to be the right decision.

Submitted by Dianne Launchbury on

Dear Dianne

Thank you for your question regarding your daughter and the possibility of VNS. I appreciate making a decision for your daughter to have surgery if a big decision.

Apart from our webpage on the VNS, if you do a general search, using VNS, from our home webpage, you will further information.

To contact others who have had the procedure done, you may wish to use our online community, forum4e. There are people in the community who have had the VNS carried out.

Please also feel free to contact our helpline team with any question about the VNS. You can either by email helpline@epilepsy.org.uk  or the Epilepsy Helpline freephone 0808 800 5050.

Yours sincerely

Diane Wallace

Advice and Information Services Officer

Submitted by JohnA on

I had brain surgery (including surface/depth electrodes and also a later surgery) in 1991. I dislike the reduced memory abilities, yet the surgery did reduce seizure frequency for me. Also I am mid 40's bilateral temporal lobe. my doctor wants me to try surgery again, I have mixed feelings, as I was very difficult to finish my degree back then. (I did) Still I was diagnosed with bilateral t-l epilepsy then and memory is still a disability that was aggravated by the t-l left side surgery. It has been recommended I have surgery again. (I am in my mid 40's) Is VNS for me? Tania

Submitted by Tania M on

Hi Tanya

It sounds like you a very big decision to make.

We can give you general information on the VNS but we can’t say if you would be suitable. You need to ask your epilepsy consultant/surgeon.

As you are having problems with your memory, I'd like to make you aware of our memory and epilepsy information. This includes information memory enhancement strategies.

Some people find it helps to contact others in a similar situation. If you think this may help you, we have various ways you could do this. We have local groups, facebook, twitter and our forum4e online community.

I hope this is of help and things workout well for you.

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Helpline freephone 0808 800 5050.

Diane
Epilepsy Action Advice and Information Services Officer

Submitted by Diane@Epilepsy ... on

I have been on lamotragine, was taken off that due to side effects now on keppra and tegretol still having seizures. Due to see my specialist in December unsure on what to say to him.

Submitted by paula on

Hi Paula

That sounds like a difficult situation.

The most important thing is for your specialist to get a clear picture of what’s been happening for you. So if you don’t already keep a seizure diary, then now would be a good time to start. This way your specialist gets the information they need really quickly and clearly.

Also you may want to think about asking for a care plan. You could take this to your appointment and either ask the specialist or epilepsy nurse if they could work through it with you.

To get a copy of the care plan, you can download it from the linked page, order it free from our online shop or ring our freephone Helpline number 0808 800 5050, and we can send you a copy.

Having a care plan should help everyone focus on the best way forward for you.

Cherry

Advice and Information Team

Submitted by Cherry-Epilepsy... on

I was diagnosed with epilepsy 5 years ago I was put on lamotrigine which didn't work so they then put me on lamotrigine and keppra which also didn't work so they then tried lamotrigine, keppra and epilim chronic and over time took me off the keppra because of really bad side effects, my seizures are still not controlled I am due to see my consultant next month and don't know what to say to them anymore

Submitted by Eibhlin on

Hi Eibhlin

It sounds like you're going through a tough time. If you are in the UK you could ask your consultant about getting referred to an epilepsy specialist centre. Current guidance in the UK says you could be referred to a specialist centre if your epilepsy is difficult to control. This includes if you have tried at least two different epilepsy medicines and are still having seizures, or if you have severe side-effects from your epilepsy medicine. At a specialist centre they may offer you other treatment options such as different medicines, epilepsy brain surgery or VNS. We’ve got more information about specialist centres on our website as part of our seize control campaign.

This information applies if you are in the UK. If you are outside the UK you could speak to one of the international epilepsy organisations for advice.

I hope this information helps. If you have any other questions or want to talk anything through, please feel free to contact us again, either by email helpline@epilepsy.org.uk or the Epilepsy Action Helpline freephone 0808 800 5050. 

Grace
Epilepsy Action Advice and Information Team

Submitted by Grace, Epilepsy... on

my daughter has had epilepsy since being a young child she is now an adult, we have never achieved control despite trying numerous combinations of anticonvulsant medication. She has on average 5 seizures a week, cluster seizures and was regularly requiring medical attention in AE due to prolonged seizure activity and status. She had a vagal nerve fitted 14 months ago and it has transformed her life. She still has regular seizures however use of the magnet is generally successful and stops the seizure, her recovery time is much quicker and her quality of life has been improved.

Submitted by Tracey Marshall on

Hi.

At the moment I am on 1500mg Keppra twice daily and 150mg vimpat twice daily. I have tried a lot of aed`s About 6 yrs ago I had a bad spell of cps. eventually they sorted it but now seems to be starting again. it took the specialist a long time to find something as I have been on so many different aed`s. I am just waiting for a letter to see her again. I have been looking at VNS and I was wondering if it would be suitable for me as when a sz is coming on I always get a kind of warning so I think this may work for me. What does anyone else think.

Trevor

Submitted by Trevor Haslam on

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