Jun 10, 2020 09:58 PM
https://www.abc.net.au/news/2020-06-11/m...a/12300230
EXCERPTS: . . . Lyn Griffiths got her first migraine as a child. But her mother suspected immediately what was up because she suffered from migraines too. When Griffiths' son started complaining of head pain at five years old, it didn't take long to join the dots. But there's more to Griffiths' story than her family link to migraine.
She is better known as Professor Lyn Griffiths, a molecular geneticist and the executive director of the Institute of Health and Biomedical Innovation at the Queensland University of Technology, where she has pioneered international research into migraine and DNA. "About 50 per cent of the time people who suffer from migraine have another close relative that also suffers," says Griffiths. "It was pretty obvious that there was a strong genetic component and as a geneticist with migraine in my own family that was interesting to me. I thought someone ought to be looking at this from a genetics perspective."
In 1998 Griffiths' research found the first gene linked to migraine. Since then genes responsible for two kinds of migraines — including a deeply traumatic version known as a hemiplegic migraine that can cause paralysis and even coma — have been discovered. The genes for hemiplegic migraine are "heritable and causative", she says. That means if you have them you will definitely get this very severe form of migraine and can pass the gene mutation to your children who each have a 50 per cent chance of developing migraine too.
But the second and more common migraine is no walk in the park. Sure, sufferers don't lose consciousness, but they don't escape the hallmark pounding one-sided headache, light and sound sensitivity and nausea. For 20-30 per cent in this group, like me, there is also what's known as an aura — causing vision changes and sometimes speech disturbances
[...] When a migraine hits, many people can do little more than lie in bed and wait for the symptoms to ease. Then 16 months ago something miraculous happened. Raphaella Crosby joined the trial of a new class of drugs developed from the research of people like Griffiths. These drugs work by suppressing a peptide that soars in migraine patients during an attack.
Crosby's response to the medication was lifechanging. "I'm a super responder," she says of the monthly injections of a substance called erenumab-aooe, which is not a silver bullet for most people. "Only about 25 per cent of people respond as well as me and it's transformative because I thought I was totally and permanently disabled."
But there's a catch. The drug — one of five in a new crop of similar medications that target and suppress calcitonin gene-related peptides, or CGRP — is not listed on the Pharmaceutical Benefits Scheme. Crosby received it for free while she was on the trial but now pays $695 a month to continue treatment. It's a big outlay for someone who is only just trying to rebuild a working life. She has sold assets to pay for the medication over the next few months and is nervous about giving up the only effective treatment she has ever found. "Where I'm at now is thinking about going back to work, knocking out my PhD, having a life again," she says. "I'm making friends. Life is good."
In the past 20 years at least 50 genes have been found that to relate to migraine. But the complex web of influences that lead someone to actually suffer an attack are yet to be fully unravelled. Instead, experts like Griffiths — and Melbourne-based neurologist Tissa Wijeratne — talk about "susceptibilities" and "triggers", as well as causes. Migraines have long been associated with eating things like chocolate or drinking red wine. "We think certain perfumes, certain foods and even barometric pressure changes can be the triggers for those who are genetically predisposed," Griffiths says.
[...] As an illness that affects 18 per cent of women but only 6 per cent of men, Wijeratne says it's a given that female hormones are also one of the culprits. This helps explain why migraine is linked to things like endometriosis and often emerges during puberty, childbirth and menopause. It is possible that some of the gene mutations related to migraine risk are passed on by the X chromosome, Griffiths says, and because women carry two copies of X, their risk of inheriting the condition is higher. She is also researching how mitochondria, which are inherited maternally, may also potentially pass on genes involved in susceptibility to migraine.
[...] Griffiths sighs in frustration when funding is mentioned. "It's the hardest thing in the world to get funding for migraine research," she says. "It's one of the most common neurological disorders and yet one of the lowest on the scale for funding to support research."
Wijaratne agrees: "It has links to every human health condition under the sun including cardiovascular disorders," he says, emphasising that migraine patients take their own lives two-to-three times more frequently than the wider population. "Migraine is definitely the most neglected, worst managed and most under-recognised medical disorder worldwide, wherever you are," he says. "If you have cancer, multiple sclerosis, Parkinson's disease or stroke, you can actually see the disability. If you suffer from migraine you can't see anything although the suffering is unbelievable high."
[...] Some patients don't respond to existing treatments, Wijeratne says, but he is adamant "one should never lose hope". "If a doctor says 'I've tried everything', then choose a different doctor. You should always be hopeful." (MORE - details)
EXCERPTS: . . . Lyn Griffiths got her first migraine as a child. But her mother suspected immediately what was up because she suffered from migraines too. When Griffiths' son started complaining of head pain at five years old, it didn't take long to join the dots. But there's more to Griffiths' story than her family link to migraine.
She is better known as Professor Lyn Griffiths, a molecular geneticist and the executive director of the Institute of Health and Biomedical Innovation at the Queensland University of Technology, where she has pioneered international research into migraine and DNA. "About 50 per cent of the time people who suffer from migraine have another close relative that also suffers," says Griffiths. "It was pretty obvious that there was a strong genetic component and as a geneticist with migraine in my own family that was interesting to me. I thought someone ought to be looking at this from a genetics perspective."
In 1998 Griffiths' research found the first gene linked to migraine. Since then genes responsible for two kinds of migraines — including a deeply traumatic version known as a hemiplegic migraine that can cause paralysis and even coma — have been discovered. The genes for hemiplegic migraine are "heritable and causative", she says. That means if you have them you will definitely get this very severe form of migraine and can pass the gene mutation to your children who each have a 50 per cent chance of developing migraine too.
But the second and more common migraine is no walk in the park. Sure, sufferers don't lose consciousness, but they don't escape the hallmark pounding one-sided headache, light and sound sensitivity and nausea. For 20-30 per cent in this group, like me, there is also what's known as an aura — causing vision changes and sometimes speech disturbances
[...] When a migraine hits, many people can do little more than lie in bed and wait for the symptoms to ease. Then 16 months ago something miraculous happened. Raphaella Crosby joined the trial of a new class of drugs developed from the research of people like Griffiths. These drugs work by suppressing a peptide that soars in migraine patients during an attack.
Crosby's response to the medication was lifechanging. "I'm a super responder," she says of the monthly injections of a substance called erenumab-aooe, which is not a silver bullet for most people. "Only about 25 per cent of people respond as well as me and it's transformative because I thought I was totally and permanently disabled."
But there's a catch. The drug — one of five in a new crop of similar medications that target and suppress calcitonin gene-related peptides, or CGRP — is not listed on the Pharmaceutical Benefits Scheme. Crosby received it for free while she was on the trial but now pays $695 a month to continue treatment. It's a big outlay for someone who is only just trying to rebuild a working life. She has sold assets to pay for the medication over the next few months and is nervous about giving up the only effective treatment she has ever found. "Where I'm at now is thinking about going back to work, knocking out my PhD, having a life again," she says. "I'm making friends. Life is good."
In the past 20 years at least 50 genes have been found that to relate to migraine. But the complex web of influences that lead someone to actually suffer an attack are yet to be fully unravelled. Instead, experts like Griffiths — and Melbourne-based neurologist Tissa Wijeratne — talk about "susceptibilities" and "triggers", as well as causes. Migraines have long been associated with eating things like chocolate or drinking red wine. "We think certain perfumes, certain foods and even barometric pressure changes can be the triggers for those who are genetically predisposed," Griffiths says.
[...] As an illness that affects 18 per cent of women but only 6 per cent of men, Wijeratne says it's a given that female hormones are also one of the culprits. This helps explain why migraine is linked to things like endometriosis and often emerges during puberty, childbirth and menopause. It is possible that some of the gene mutations related to migraine risk are passed on by the X chromosome, Griffiths says, and because women carry two copies of X, their risk of inheriting the condition is higher. She is also researching how mitochondria, which are inherited maternally, may also potentially pass on genes involved in susceptibility to migraine.
[...] Griffiths sighs in frustration when funding is mentioned. "It's the hardest thing in the world to get funding for migraine research," she says. "It's one of the most common neurological disorders and yet one of the lowest on the scale for funding to support research."
Wijaratne agrees: "It has links to every human health condition under the sun including cardiovascular disorders," he says, emphasising that migraine patients take their own lives two-to-three times more frequently than the wider population. "Migraine is definitely the most neglected, worst managed and most under-recognised medical disorder worldwide, wherever you are," he says. "If you have cancer, multiple sclerosis, Parkinson's disease or stroke, you can actually see the disability. If you suffer from migraine you can't see anything although the suffering is unbelievable high."
[...] Some patients don't respond to existing treatments, Wijeratne says, but he is adamant "one should never lose hope". "If a doctor says 'I've tried everything', then choose a different doctor. You should always be hopeful." (MORE - details)