Experts respond to myths and truths around living with migraine and how to get treated
More than 1,000 people have reached out to the ABC to share their experiences living with migraine. (ABC News: Lindsay Dunbar)
We recently reported some staggering statistics about migraine.
One in three Australian women are living with migraine and have experienced one in the past three months.
The story really resonated with many of you.
More than 1,000 people got in touch directly with the ABC via email and through social media to share their experiences.
Here's what you told us
Most who shared their stories talked of the huge impact migraine had on their everyday lives.
Lisa, who became a registered nurse in her late 40s, said shift work was triggering for her health:
"This was quite a devastating blow as I had worked so hard to become a nurse [and] I have been battling ever since trying to balance my work life with migraine management," she said.
"I can see I am certainly not alone with this affliction, though it often feels that way and there is poor understanding of the impacts of living with migraine."
Often the first line of treatment for migraine is aspirin. (ABC News: Lindsay Dunbar)
Monique, who is in her late 20s, said she suffered chronic migraine for almost 20 years:
"As a single mum, it's hard. I struggle every day," she said.
Vivienne shared that at 73 years old, she experienced migraine all her adult life, which caused "loss of vision":
"I would be bedridden with painful, nauseating migraines lasting two to three days," she said.
First, some myth-busting
Many of you told us of the long road to getting migraine treated.
Bree said she was "begging doctors for answers" for 15 years, before finally getting relief.
It was a similar story for Aurora, who said doctors told her "headaches are a normal part of life for everyone".
But a migraine is much more than a headache.
There's still some confusion about this, according to St Vincent's Hospital neurologist Susan Tomlinson, who said "there's a lot more space to advocate for migraine sufferers".
"There's been a big push to educate GPs and healthcare practitioners … and we're certainly seeing now a higher rate of referral earlier for migraine management," Dr Tomlinson said.
"Part of the problem is that a lot of people just think it's just a headache, but in fact migraine is actually a neurological disorder where there is instability of the neural pathways and instability of vascular spasm and people have episodic brain dysfunction."
She said there were similarities between epilepsy and migraine — both cause a temporary disturbance of neural function, which causes disability.
"There are some analogies between the two conditions. So, migraine is a neurological disorder for which there are effective and specific treatments that often need specialist input," she said.
You asked, the experts answer
A common theme was frustration at a lack of information about managing migraine.
Visual migraine sufferer Cathy asked what medications were available.
Dr Tomlinson said 80-90 per cent of migraine sufferers have episodic migraine, which requires symptomatic treatment on the day.
She said getting in early with an "acute treatment strategy" was essential.
"Often the first-line treatment that's very effective is aspirin and, if people can tolerate it, sometimes high-dose aspirin is quite effective," she said.
But aspirin doesn't work for everyone, which is where migraine-specific medications, known as triptans, come in, Dr Tomlinson said.
Those drugs are used for an episode of migraine, not as a preventative medication.
But Dr Tomlinson said those with high frequency or chronic migraine may benefit from a preventative strategy.
"There are a number of different preventative medications, some of them are oral medications, some of them are self-administered subcutaneous injections," she said.
Botox can be administered as a migraine preventative. (ABC News: Lindsay Dunbar)
"Botulinum toxin or botox can also be administered as a migraine preventative, so really it depends on how your migraine looks."
Botox worked for one of our readers, Trudi, who said she "couldn't live without it", but another migraine sufferer, Angela, said she didn't have any success with the injections.
There is no "one size fits all" for treatment, according to Migraine and Headache Australia, which supports the millions of Australians affected by headache and migraine.
"What works for one person may not work for another, which is why it's important to work closely with a doctor," the organisation's lead Carl Cincinnato said.
"The good news is that most people with migraine can significantly improve with the right support, education and a personalised management plan. Yet many people are still undiagnosed, and even fewer are getting specialist care."
What about periods and menopause?
We know women are much more likely to experience migraine than men.
So, what role are hormones playing? Here's what some women told us.
"Every period came hand-in-hand with debilitating head pain." — Julia
"Now I am 39 and approaching perimenopause, I am getting migraines almost every month, two or three days into my period." — Victoria
"It wasn't until after menopause that I realised that they'd fallen well away, so hormones had played a part as well." — Jennifer
Dr Tomlinson said migraine "often is hormonally sensitive".
"A lot of women have headache either just before their period or during the first day or two of their period," she said.
"Migraine seems to be over-represented in patients with hormonal issues such as polycystic ovarian syndrome and endometriosis and patients often become unstuck in the perimenopausal years and see an amplification of their migraine or can see a transition from infrequent episodic headache to chronic migraine."
She said some people benefited from having menopausal hormonal therapy, but that needed to be prescribed in consultation with either a gynaecologist or GP.
There is also some evidence that progesterone-only contraception is better for certain migraine patients.
Tricks and tips to avoid migraine — what actually helps?
Hundreds of people who experience migraine got in touch to share their tips for dealing with an episode:
- A can of cola, it has to be in a can and really, really cold — Jess
- Magnesium tablets — Lou
- Double shot espresso — Melissa
- Going on a gluten-free diet helped me — Vicki
- A big fatty, protein-filled meal — Asher
- Cola, hot chips, Turkish bread with avocado and butter — Joanne
- Icy cold strawberry milk — Brooke
- Flat lemonade and salami — Kitty
So, is there evidence any of this actually works?
Dr Tomlinson said caffeine has long been used as a treatment to stop acute migraine, but overuse "can contribute to perpetuating the chronic migraine cycle".
Foods like hot chips and sweets may alleviate migraine by allowing rehydration and energy boost to the brain. (ABC News: Lindsay Dunbar)
"It is often recommended that patients with chronic migraine limit caffeine intake to two shots of coffee a day or equivalent," she said.
And what about hot chips and sweet foods?
"The consumption of these foods may alleviate migraine by allowing rehydration and energy boost to the brain and also translate to an improved sense of wellbeing due to satiated craving," Dr Tomlinson said.
Dr Tomlinson said not getting enough sleep, drinking excessive amounts of alcohol and exposure to a lot of fluorescent light or direct sunlight could lower someone's threshold to migraine.
"When we're managing people with migraine, it's important to put just as much emphasis on those modifiable factors and have a holistic approach to the care, in addition to providing them with a management plan,"she said.