The East Midlands AHSN has been supporting local NHS trusts to adopt the gammaCore device as part of the delivery of the Accelerated Access Collaborative’s MedTech Funding Mandate (MTFM) policy.
The MTFM policy aims to accelerate equitable patient access to medical technologies that are clinically effective, cost saving in three years (as determined by NICE) and affordable to the NHS (costs not exceeding £20 million).
The AHSN Network has been commissioned to support local systems with the implementation planning and business case development for those devices included in the policy.
gammaCore is a non-invasive vagus nerve stimulator used to treat and prevent cluster headaches. Clinical evidence shows that, for some people, using gammaCore as well as standard care, reduces the frequency and intensity of cluster headache attacks and the need for medication. This is likely to significantly improve the quality of life for people living with this condition.
Currently, 80% of trusts across the East Midlands refer to clinics that offer gammaCore as a treatment option. Our aim now is to understand how patients across the East Midlands are referred to these clinics to ensure the treatments are available to those who need them.
In this blog, a patient shares her personal experience using gammaCore and the difference it has made to her life.
When did you first start to experience cluster headaches?
I started to suffer from cluster headaches in 2013 but was not diagnosed until I saw a neurologist at the end of 2019.
I had extremely severe pain on one side of my head most often waking me up at night, sometimes several times a night, each episode lasting 1 to 3 hrs. Painkillers were ineffective and this would occur several times a week for around 6 weeks. Initially, this happened once every few years with the gap between periods getting shorter.
I began to fear going to sleep at night.
I had dental root canal treatment on the headache side and was variously diagnosed with possible migraine, neuralgia etc. I often did physio exercises when the headache struck – moving about seemed to help a bit but I was increasingly exhausted and stressed.
Once diagnosed I started a medication plan. But at the same time, I was moving from episodic to chronic cluster headache and so the whole of the first year after diagnosis was spent adjusting the dose of my medication up and down.
What was your life like before you had the use of gammaCore?
Life with cluster headaches is very stressful especially when it is uncontrolled. The pain is awful and the side effects of the medications can bring their own significant and worrying health problems. For me, cluster headache attacks can be very unpredictable in their severity, frequency and duration. There is one key trigger for me – sleep. Trying to get off to sleep when you are terrified of incredibly severe pain, which is likely to happen about 1.5 hrs after getting to sleep, is very, very stressful.
I found self-injecting Sumatriptan (although very effective against the pain) also pretty stressful at first and constantly adjusting my Verapamil dosage meant that the cluster headache just took over my whole life.
How easy is the device to use and how long have you been using it?
Very easy! Because of Covid, I had my training over Facetime and I have been using it for seven months.
An image of the gammaCore device which uses gentle electrical stimulation through the skin via the neck to stimulate the vagus nerve.
Now that you use gammaCore, what difference has that made in your life?
gammaCore has helped me to feel like I am managing my cluster headaches for the first time in nine years!
It’s still early days as my cluster headaches can be very variable but I have been able to reduce the dosage of Verapamil and the dosage and frequency that I need Sumatriptan. gammaCore not only seems to suppress my headaches overall, working with Verapamil as a preventative, it also stops acute attacks. It takes a few minutes longer to work on severe acute attacks than Sumatriptan, but I can use it far more often (I have never had to use anything like the full daily dose possible) and there are no side effects.
Not all cluster headaches are severe enough for Sumatriptan but are somewhere between what sufferers call “shadows” and a mild to moderate headache and these can go on for hours on a daily basis. They do not respond to over-the-counter painkillers. gammaCore is brilliant at switching these off within minutes, which has greatly improved my quality of life.
gammaCore gives me more options. Having two ways to abort acute attacks is really helpful. Occasionally Sumatriptan is the better option in certain circumstances, but gammaCore is core to my treatment. I take it with me on days out just in case!
What would you say to someone who was applicable for gammaCore but was unsure of its benefits/ impacts?
You have everything to gain and nothing to lose. Try it – it’s easy, painless (just feel a tingling), has no side effects and works for a lot of people.
More information
Find out more about the AAC MedTech Funding Mandate policy on our webpage. For queries related to the policy/products contact
Author
Helen gammaCore patient