Extremely rare headache disorder significantly reduced thanks to treatment and support from The Walton Centre
A patient from North Wales whose debilitating headaches were sending him over the edge have all but gone thanks to an innovative new drug treatment from The Walton Centre NHS Foundation Trust.
Mike Kibble-White, 83, from Corwen, has been experiencing extreme pain for over 15 years. Mike has Short-lasting Unilateral Neuralgiform Headache with Conjunctival injection and Tearing or SUNCT, which is characterised by the most severe bursts of burning, piercing or throbbing pain in the face and head. In Mike’s case, jaw movement can send his pain-levels rocketing upwards, leaving him completely unable to function for hours.
He said: “I would dread anything that involved moving my jaw. Even yawning or brushing my teeth could bring me to my knees in pain. A three out of ten headache would become an eight or nine out of ten. Got to the point where I would wake up every day worrying about when it would happen and how long I’d be suffering for. It limited everything in my life and I was getting so sick of it. I was miserable.”
Mike was referred to The Walton Centre’s Headache Service, one of the UK’s largest services of its kind, after reporting to Wrexham Maelor Hospital for urgent treatment. Once under the specialist neurosciences hospital, Mike began exploring treatment options in order to reduce his pain.
He continued: “It was hard going at first, you obviously have to try different medications and treatments to find the right one for you. But other than a strong sedative, nothing was working. That was until my consultant Dr Silver recommended Atogepant.”
All known and recognised treatments for this disorder had been explored before considering Atogepant, a drug licensed specifically to treat migraine in the UK. Dr Silver acknowledged how he had until that point been unable to impact this devastatingly severe and disabling headache disorder, which had completely taken over Mike's life. Atogopant has never before been recognised in published literature to help in this disorder, but thought it could potentially help in Mike’s condition.
Atogepant, which began being used on the NHS last year, is a medicine that works by blocking peptides responsible for pain transmission in the brain. This can mean that pain will happen less often for patients, and when they do happen, they may be less severe.
Mike has been on the new medication for over four months, he said: “It’s been amazing. It’s changed everything: mood, relationships, motivation and energy levels. I can finally relax and not worry about my jaw starting off a painful headache. Everybody has remarked on how I’ve improved. I realised I was getting pretty down in the dumps with all the pain. I’m chuffed to bits that I’ve been able to find something that works. Like a lot of people in chronic pain, it’s taken me a while to find a solution.
“It’s important to me that people understand that even though severe headache pain like mine is invisible, it is very, very real. I might look like a grumpy old so-and-so on the outside, but in reality that high level of pain can take you to a really dark place. I’d just ask that people be more kind to those with headache conditions, and think before they dismiss someone’s pain as ‘just a headache’.”
If you would like to learn more about The Walton Centre’s Headache Service, go to our website www.thewaltoncentre.nhs.uk