Woman relies on oxygen therapy to endure cluster headaches

Ainsley Course (Andrew Cawley/DC Thomson)

She has been left with black eyes and sobbing on the floor, suffering unbearably.

The Cumbernauld mum-of-two suffers from cluster headaches, a rare condition whose attacks trigger “the worst pain imaginable”.

Ainsley’s agonies were made worse by the fact it took 15 long years before she was diagnosed. But she’s hoping others will be spared such suffering through a conference staged in Aberdeen next month and last week’s first ever awareness day.

Ainsley, 49, vividly recalls the moment her life changed forever.

“It was 1985, I was 19, and I’d gone to bed one night and woke up two hours later with this unbelievable pain,” said Ainsley.

“It was down the right side of my head and it was so bad I thought I was a goner. I thought I had a tumour or a bleed in my brain.

“I was literally on my knees.”

Ainsley, who has two kids, Francesca, 25, and Thomas, 17, with husband Peter, sought the first of a seemingly never-ending list of medical appointments.

Migraines and hormonal issues were just a couple of possibilities considered. And when she kept returning, it was suggested it may be mental.

“Like many other sufferers I was offered a referral to a psychiatrist. And along the way I was given almost 40 different drugs to try.

“I was nursing at the time and I researched it until I was sure it was cluster headaches. Finally I saw a neurologist privately who agreed and made the diagnosis.”

After all the drug failures she was put on one, Sumatriptan, to self-inject. It at last brought relief although she has now turned to oxygen therapy when she has an attack.

And that, sadly, is distressingly regularly.

“I’m what’s called an episodic sufferer in that I get them and then have spells when I’m OK,” said Ainsley.

“You can have six months between them but I’m suffering just now and this cycle started just a couple of months after the last.

“I get maybe eight or nine a day for about 10 weeks and within 30 seconds of one starting you’re in such agony.

“Unlike migraines where you want to lie down, you can’t stay still. You pace and do anything to try and make it stop, even bashing the wall.

“It’s down one side and that eye goes bloodshot and my nostril blocks.”

The toll on her family and professional life has been enormous.

“I’ve missed the kids’ birthdays as well as weddings and funerals and so much more.

“I had to give up nursing, which I loved. When I was in cycle I felt it wasn’t safe to look after my patients.”

Having felt she was suffering alone and in the dark for so long, Ainsley has welcomed the support of charity the Organisation for the Understanding of Cluster Headache (OUCH UK).

They have organised the Aberdeen conference, which takes place on April 3.

Visit ouchuk.org

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