Sufferer: Liam Dennis, from Norwich, has suffered excruciating headaches out of the blue since June 2006
Nothing could have prepared Liam Dennis for the excruciating headaches which started out of the blue.
‘One evening the pain hit me without warning,’ says Liam, 39, a cleaning company owner. ‘It was so intense; like someone was sticking a red-hot ice pick through my eye.’
It was the beginning of 11 years of pain, as Liam, who lives in Norwich with wife Amanda and their three children, continued to have crippling attacks lasting half an hour at a time.
‘I could have eight attacks a day for weeks on end. I would be manic,’ he says. ‘I’d head-butt walls, punch the floor and put my head in the freezer to stop the agony.’
Liam is among 66,000 people in the UK who experience cluster headaches. Also known as ‘suicide’ headaches, these are said to cause the most severe pain known.
‘To understand that level of pain, imagine what it’s like to give birth five times a day every day for weeks or months on end,’ says Peter Goadsby, a professor of neurology at King’s College London. Each cluster headache can last anywhere between 15 minutes to several hours, causing pain often described as a burning sensation on one side of the head or around an eye, as well as red, watering eyes and swollen eyelids.
‘Once it was so excruciating, I kicked through a door and broke a toe,’ says Liam. ‘But I didn’t even feel it as the pain wasn’t as bad as my headache.’
Liam, who had his first attack in June 2006, saw his GP repeatedly over the years and was prescribed powerful drugs including rizatriptan and sumatriptan injections to shorten an attack, and verapamil to prevent headaches.
But any improvement was short-lived. (Other treatment options include electrical implants surgically fitted under the skin, thought to interrupt pain signals.)
By 2017, Liam was suffering more headaches, which were becoming harder to treat. Due to this, he had to take lots of time off work.
Around 5 per cent of people with cluster headaches do not respond to standard treatments. But now the National Institute for Health and Care Excellence (NICE) has published a report which says a new handheld device could help.
The gammaCore device is the size of a small electric razor, and is held against the neck, below the jaw. Two metal stimulation points send out a small electrical charge to stimulate the vagus nerve in the neck, which runs from the brain to the abdomen and relays messages between the brain, heart, lungs and digestive system.
Help: By 2017, Liam was suffering more headaches, which were becoming harder to treat (right), but the gammaCore device (left) has since offered substantial relief
It’s thought that in some people with cluster headaches, this pulse stops the pain signals from the nerves reaching the brain.
In October, NICE published a report that said gammaCore would be particularly beneficial for adults with cluster headaches who haven’t responded to existing treatments or who can’t tolerate them.
Its report was based on five studies. One involved 102 patients with cluster headaches: half were given gammaCore, while the others received a ‘sham’ device. The study found that 48 per cent using the active device were pain-free within 15 minutes of an attack, compared with 6 per cent of those using the sham device.
‘Not everyone will find this device useful, but for those who do, it helps treat a devastating condition,’ says Professor Goadsby, who led the study. ‘It’s an external stimulation device with no side-effects, so in comparison to everything else I can offer, it’s very attractive. A decent proportion of people do very well using it.’
Neurologists can prescribe gammaCore, but it is also available to buy from £625. You have to top up the stimulator every 93 days by holding a refill card (which costs £625 each time) in front of it, and recharge the battery.
To prevent an attack, users tend to give themselves two or three treatments a day, each consisting of two-minute stimulations. It can also be used when a headache is coming on.
It can cause a tingly sensation and make the side of the mouth droop when used, but no lasting side-effects have been reported.
Liam was offered gammaCore in August 2017, and says he hasn’t had an attack since. He no longer needs regular headache medication. ‘I spend eight minutes using it every day, and so far this has stopped any attacks,’ says Liam. ‘It has given me my life back by stopping the pain in its tracks.’
Professor Goadsby says: ‘The wheel of understanding and managing this complex condition is still turning, even if very slowly. Given that people with cluster headaches live in a hell, this shows there might be a way forward.’
Dr Ashish Gulve, a pain management consultant at The James Cook University Hospital in Middlesbrough, agrees gammaCore could benefit many patients who live with cluster headaches.
‘It’s appealing as it’s a non-invasive option when other treatments have not worked,’ says Dr Gulve. ‘It won’t be successful for everyone, as there is much about cluster headaches we do not understand. For the lucky ones, it will work.
‘Having something without side-effects, which can be carried in a bag and used when needed, makes it a better choice than having a device implanted in their body.’
For more information, visit ouchuk.org