LYNDEE Jayasekera would rather give birth again than tackle the beast.

The Yorkeys Knob mother-of-six is one of a handful of people in the Far North diagnosed with Horton's Syndrome - a neurological condition also known as cluster headache, or, hauntingly, suicide headache.

Sufferers simply call it "the beast".

"It's like someone has a knife and is running it through your brain, or someone has a hot poker and has rammed it through your head while it's being squashed in a vice," Ms Jayasekera said.

Lyndee knows what true pain feels like.
Lyndee knows what true pain feels like.

The condition - known for crippling, searing pain that hits like clockwork - is considered the most painful condition known to medical science; worse than labour pain, pancreatitis, gunshot wounds and migraines.

"The worst thing I have heard is 'I get migraines too'. Really? This is not a migraine. I have had six kids and labour is a walk in the park - a migraine is a walk in the park," Ms Jayasekera said.

"It's horrendous. I have had gallstone and kidney pain, but this is the worst I have ever experienced."

Cluster headaches are mercurial - Ms Jayasekera has used a combination of high-flow oxygen, energy drinks and prescription medication to manage the pain, but there is no known cure.

"It controls you. It really is the beast," she said.

Amazingly, she can be considered one of the lucky ones, as her condition has not reached a chronic stage - where survivors endure relentless attacks, often for hours at a time, day in, day out.

Cluster headaches are about as common as multiple sclerosis. The headaches are thought to be linked with a dysfunctional hypothalamus - the brain's internal clock.

"It wakes me up when I have my attacks - I'll have one at 2 in the morning and one at 6, then more during the day. You are too scared to go to sleep because you know the next one is coming. I'm just coming out of a three-week cycle - and you dread the next cycle because you know it's coming."

Australia’s medicinal cannabis sector is growing but researcher say more studies need to be done in this space.
Australia’s medicinal cannabis sector is growing but researcher say more studies need to be done in this space.

Powerful medications such as fentanyl and ketamine have proven ineffective for many cluster survivors, who call themselves "cluster warriors".

Medicinal cannabis with a high THC component is effective for many sufferers as a pain management tool, but the high cost - more than $220 for 250ml - is out of Ms Jayasekera's reach.

"I am only on Austudy - my finances couldn't handle it," she said.

Chronic Pain Australia's annual National Pain Week survey recently showed medicinal cannabis still carries a stigma with treating physicians. Psilocybin - the active component in "magic mushrooms" - has proven effective as an abortive treatment in overseas trials.



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