A mum said she sometimes feels "possessed by a demon" due to pain "worse than childbirth" from a common condition.
Amy Jewell, 26, suffers from both migraines and cluster headaches. A migraine is an intense, throbbing headache on one side of the head, while a cluster headache is an excruciating, burning or stabbing pain on one side of the head near the eye, regularly recurring during an attack lasting weeks or months.
The bar worker from Norris Green said it's like she's "possessed by a demon" when she has a headache, comparing herself to a horror film character "rocking, shaking and throwing up" and says the pain is "worse than childbirth".
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Mum-of-one Amy said: "I wouldn't wish this on my worst enemy. It disturbs your life so much, your mental health is really affected, and there's just no understanding. Society just thinks it's a headache and it's not."
During an attack, which started when she was seven, Amy hides in her blacked-out room next to a bucket. Her senses are so sensitive even the red light of a TV on standby makes her vomit, and the "weird, musky smell" of summer rain gives her headaches.
She vividly remembers a headache in 2007 when she hadn't eaten in days . Amy said: "I remember watching the telly, and the pain in my head and my eyes. I remember screaming to my dad, 'You've got to turn the telly off, I just can't live like this'."
After Amy was diagnosed with cluster headaches as a child, doctors at Alder Hey Children's Hospital advised her to ride out the headaches and attempted to prevent them with beta-blockers and epilepsy medication. But nothing worked until she was referred to The Walton Centre.
Amy was relieved and stopped feeling like she was going mad when doctors there diagnosed her with cluster headaches in 2018. She said: "I always knew that there was something up with my head with the pain. But then I was like, 'S***, I've got to live with it', but if you can live since you were seven with the migraines, you can live with these."
Cluster headaches are known to take their toll on a person's mental health due to their intense nature. They can occur for 20 minutes, multiple times a day for a recurring period of weeks or months. Amy said it was her four-year-old daughter who helped give her the mental resilience to cope with the impact of her headaches. She said it was particularly difficult last year when clinics closed during lockdown.
Amy "broke down" when she finally set foot in The Walton Centre again after lockdown to receive her treatment of nerve-blocking botox injections. She told the ECHO: "I was like, 'I literally cannot take any more, I don't know how much more I can take'. The pain at that moment in my head was horrific."
When her attacks are particularly bad, Amy is sometimes taken by ambulance to the specialist neurology and neurosurgery hospital, where she finds the staff more understanding of her condition. She said: "I think society as a whole, when you say you suffer with migraines, they're just like, 'Oh you need to take some paracetamol and some water'. They can be quite dismissive.
"They've got no understanding that when I'm walking into A&E with a pair of sunglasses on and a towel wrapped around my head so I can't see any lights, with a sick bowl, I cannot sit in this waiting room. But I think in The Walton Centre, they've got more understanding of the pain you're in."
Amy said the pain has been so bad in the past that she has banged her head against a wall and there are months at a time when she vomits daily.
The 26-year-old said: "I've never felt pain like it. It feels like your head is in some sort of vice, and you just know there's no ending in sight for a good week."
Amy's boss at a previous office job was understanding of the pain she experienced nearly every day, she was allowed to wear sunglasses and she was given time off.
Amy is lucky her sister is currently her manager at work, meaning she has a boss who understands her condition. She said holding down a job is hard, but she just has to keep going and cope as best as she can. She's tried every remedy, from sleeping pills to help her sleep through the pain, to acupuncture and a chiropractor, but it's The Walton Centre that helped her most.
Amy said: "It's an absolute gem in Liverpool. The empathy towards me and the compassion towards the pain in my head, and the time that they've got to sit there and give you treatment, is unbelievable. If there was more understanding of migraines, it would be amazing."
