A ‘per­fectly evil’ dis­ease

The Sunday Telegraph (Sydney) - - NEWS - SUE DUNLEVY NA­TIONAL HEALTH RE­PORTER

IT COR­RUPTS the lives of mil­lions of Aus­tralians, leav­ing them bedrid­den in dark­ness as they fight de­bil­i­tat­ing pain that can last for days.

But the crip­pling im­pact of mi­graines, which one vic­tim de­scribes as “per­fectly evil”, is be­ing poorly man­aged and largely ig­nored by the med­i­cal pro­fes­sion.

A Sun­day Tele­graph in­ves­ti­ga­tion has found migraine suf­fer­ers are miss­ing out on vi­tal med­i­cal help that could ease their pain and po- ten­tial pre­ven­tive mea­sures are be­ing de­nied re­search fund­ing.

The crush­ing neu­ro­log­i­cal con­di­tion, which causes paral­y­sis, pain, vom­it­ing, speech and vi­sion prob­lems that can last for days, has been found com­pa­ra­ble to con­di­tions such as de­men­tia, quadriple­gia and psy­chosis.

Ac­cord­ing to the World Health Or­gan­i­sa­tion it is the third most de­bil­i­tat­ing med­i­cal con­di­tion in the world, af­fect­ing three times more women than men.

Yet in Aus­tralia only 1 per cent of suf­fer­ers are get­ting ac­cess to migraine-spe­cific med­i­ca­tion. Many vic­tims sim­ply self-med­i­cate by go­ing to bed and draw­ing the blinds as light in­creases the pain.

Pro­fes­sor Paul Martin, from Grif­fith Univer­sity in Queensland es­ti­mates headaches cost the econ­omy $1 bil­lion a year and are re­spon­si­ble for 20 per cent of all work­ing days lost.

The ex­tent of the prob­lem is largely hid­den, though, be­cause although mil­lions of Aus­tralians suf­fer se­ri­ous dis­abil­ity and miss work and so­cial events be­cause of migraine, many never re­ceive a proper di­ag­no­sis.

Headache Aus­tralia’s gen­eral sec­re­tary Ger­ald Ed­munds said headache suf­fer­ers need to reg­is­ter with the or­gan­i­sa­tion to truly un­der­line the ex­tent of the prob­lem and cre­ate po­lit­i­cal power.

Prof Martin said most GPs were sim­ply un­aware that psy­cho­log­i­cal treat­ments had been shown in clin­i­cal tri­als to re­duce migraine by 77 per cent.

“It leaves phar­ma­ceu­ti­cals for dead, they pre­vent 27 per cent of headaches com­pared to our 77 per cent,” he said.

Migraine re­searcher Pro­fes­sor Lyn Grif­fiths also lamented that she could not find a part­ner to de­velop her new vi­ta­min com­bi­na­tion that pre­vents mi­graines in some peo­ple.

Carl Cincin­nato, who has set up Mi­grainePal, an app that helps peo­ple man­age mi­graines, has suf­fered se­verely from mi­graines for seven years. He de­scribes it as a “per­fectly evil dis­ease”.

“It’s like be­ing in a dark room, try­ing to find an exit and some­one is in the room with a base­ball bat wait­ing to hit you,” he said.

“It’s an in­vis­i­ble ill­ness, so­ci­ety doesn’t see it, and you don’t get sym­pa­thy.”

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