Sam Hawley: Migraines. If you personally don’t suffer from them, the chances are you know someone who does because a whopping 5 million Australians get them. Now there’s a push to class the condition as a disability. But is that going too far? Today, migraine sufferer Tamara Oudyn, who reads the ABC TV News in Melbourne, on her experience and why it’s an area of medicine that’s been largely ignored. I’m Sam Hawley on Gadigal land in Sydney. This is ABC News Daily.Tamara, you’re one of millions of Australians who suffer from migraines and it does become a little bit of a problem in your work, doesn’t it, when you’re actually presenting the TV news?
Tamara Oudyn: It does. Some might argue that I’ve chosen a strange line of work to go into when I am a migraine sufferer. So I read the nightly news at 7 o’clock in Melbourne and yes I’m sitting underneath very, very bright lights. It’s not a very friendly environment when I do start to get a migraine.
Sam Hawley: How does that feel? What does it feel like when it’s coming on?
Tamara Oudyn: I get a couple of little clues that I’m about to get a migraine.Quite often people will have a neurological effect. So for example, my words become hard to find. So I was getting my kids ready for school recently and they were putting their shoes on and I said, come on, do up your sandwiches instead of do up your shoelaces. So I have this strange word issue and as soon as it comes out of my mouth, I know, okay, this is going to happen within the next 12 hours or so. So that’s usually a little bit of an indicator that it’s on the cards. If I’m on set and it’s happening, it becomes almost like the lights are this incredible pressure on top of me and I feel like this fog of pain just descends over the top half of my face and as soon as it’s all over, I will get home, go into a quiet, cool, dark space and just wait for my meds to kick in.
Sam Hawley: Pretty hard when you’ve got kids in the house as well, I would have thought.
Tamara Oudyn: It is. They’re very well versed in it now.So they’ll be, oh, mum’s got a migraine, shh, leave her alone.Only in recent years, maybe the past couple of years, has a drug come onto the market that is the first drug specifically intended to prevent migraine. Everything else over the years has been, oh, well, this antidepressant has been shown to have a good side effect in that it can help migraine sufferers or Botox is another one as well that a lot of people use to great effect. You can get 36, and I did this for a number of years, 36 injections of Botox in the back of your scalp, over the top of your ears and down into your neck and it targets the pain pathways to the brain.So you get those every three months and it did work for a time but it’s pretty uncomfortable getting that many needles in an area of your head where there’s no fat under the skin. So in the end gave that away because the benefit wasn’t really outweighing the discomfort of getting it.
Sam Hawley: I was really amazed by how many Australians actually suffer from migraines. It’s huge, isn’t it?
Tamara Oudyn: The numbers are colossal, 4.9 million Australians with migraine and nearly half a million of those experience what’s known as chronic migraine and that is classified in that way. If you spend 15 days out of every month migraine affected, so that might mean that you’re coming into a migraine, you’re in the middle of an episode or you’ve got that migraine hangover that you’re trying to get over, half the time that equates to you are affected in some way by migraine. Nearly three quarters of the people suffering from migraine are women as well and gallingly it really tends to flare up when we’re hitting our straps in life. So it’ll be around school age, working age or reproductive age where you’re really sort of making a lot of important decisions about where you’re headed but migraine oftentimes will really hold people back.
Sam Hawley: Tamara, do we know why some people get them and some people don’t? Is there research into this? Have they got to the bottom of it?
Tamara Oudyn: There is some evidence to suggest that it is genetic. So if your parents or anyone in your family suffered from migraine, there’s a likelihood that you will. Also there’s some interesting research out there that says if you’re a child who suffered from car sickness or motion sickness, there’s something in the balance around that. About 70% of kids who suffer from really bad car sickness will go on to develop migraine curiously when they get older. I’m not entirely sure what the link is there but it’s really interesting nonetheless. But basically speaking, the migraine brain does not like change. So there’s two different types of change. There’s internal factors like hydration, how much water you’re drinking, how much sleep you’re getting, how much stress you’re under, your blood sugars, hormone levels as well. And then there’s external changes. So changes in the weather, for example, can really affect people’s migraine, temperature, et cetera. Light, some foods that you might ingest could trigger it, strong smells as well. Some people really have that experience around all of their senses with migraine. So there’s a lot of things that feed into it but there’s not, when you consider how many people are affected by it in Australia, the weight of research and funding thrown at it too to understand it better.
Sam Hawley: But given there are so many people that suffer from migraines, to various degrees of course, the cost of that must be pretty huge because there’s a personal cost of course but then there must be a big financial cost to this as well.
Tamara Oudyn: In terms of what it costs us, Deloitte did a study back in 2018 looking at migraine and what it costs the Australian economy and they found that it knocks a $35.7 billion hole in Australia’s economy every year.Which is absolutely incredible really. But because there is, I guess, a stigma around migraine, it’s generally seen as, oh look, it’s just a headache, suck it up, keep going. And that feeling that you might be just copping out a bit or you’re a bit of a sook if you don’t just soldier on.
Sam Hawley: So it doesn’t sound like we’re dealing with this that well, from what you’re saying.
Tamara Oudyn: No, we’re not. We’re not in terms of the people who it affects. Patients often have a protracted and convoluted path to receiving appropriate care for their migraines and there’s an average delay of 12 to 17 years between when they start getting symptoms and then when they get an accurate diagnosis. There’s two reasons for that. When it comes to patients, it’s that sort of fobbing it off as well, it’s just a headache. But also when you look at what happens in the medical professional, it’s often misdiagnosed and that’s not throwing shades on our medical practitioners at all. GPs don’t always know what they’re looking for though because medical students in Australia get less than two hours of training in headache during their entire undergraduate degree and it’s not much better for postgrad. The federal government says that between 2015 and 2022, the National Health and Medical Research Council has provided about $8 million towards research that’s in inverted commas relevant to migraine. But the researchers I’ve spoken to say that that’s not accurate because it’s more like $2.8 million. So researchers and experts in this field say to match its impact, funding for migraine should ideally be increased to about 10 times what it is now. It currently receives the least amount of funding compared to other neurological conditions.
Sam Hawley: So I guess the question Tamara is what do we need to do about this? Because millions of Australians are suffering from this. It sounds like something needs to change. What needs to change in your view?
Tamara Oudyn: Well, the Australian and New Zealand Headache Society actually made a submission to the federal government’s Women’s Health Advisory last year. So in this submission, the Australian and New Zealand Headache Society has called for better training of nurses and GPs and specialists in the field too. Importantly, for migraine to be classified as a disability so that people who suffer from migraine can access the supports that they actually need and for a national migraine strategy. So something similar to what already exists for illnesses like MS, epilepsy, heart disease, cancer, asthma. Currently nothing like that exists for migraine.
Sam Hawley: So does that mean, Tamara, that migraines would be listed on the NDIS?
Tamara Oudyn: Yes, they’re not currently. Because it’s not classified as a disability officially, you can’t actually get the support that you need. So there is a lot of time spent currently on trying to get patients dealing with life and getting them through day to day.
Sam Hawley: I guess some people might argue that the NDIS is already under so much pressure that nothing else can be added to it at this point.
Tamara Oudyn: And I understand that, absolutely. But when you look at the vast numbers of people affected by it, and my inbox since writing this piece is full of people saying, thank you, I feel seen. Here’s how I live with this. Here’s how it’s affected my life. Here’s all of the things that I have tried to treat it. I’m having some joy with this, others not so much. So people are really suffering with it and it’s fascinating to get that conversation started. Once you start talking about it, more people come forward and share their stories.
Sam Hawley: Alright, well, until change is made, what’s your message tomorrow to the people out there that are suffering from migraines?
Tamara Oudyn: Don’t accept pain that is affecting the way that you live. If you have spent time in the past month with a headache that has absolutely floored you, if it’s limited your activities for a day or more, that’s not OK. If you felt nauseated or sick to your stomach when you’ve had a headache, or if light has bothered you during that episode too, get yourself to a doctor, start asking some questions. You might just jag somebody who knows what they’re looking for as well. But start on that journey to trying to figure out a way to make it less of a prominent feature of your life.
Sam Hawley: Tamara Oudyn is ABC TV’s 7pm newsreader in Melbourne. This episode was produced by Nell Whitehead, Bridget Fitzgerald and Sam Dunn. Audio production by Anna John. Our supervising producer is David Coady. I’m Sam Hawley. Thanks for listening.