‘Not drug-seekers’: The stigma of experiencing migraine pain

Rosanne Barrett

31/05/2021 2:20:36 PM

Treating patients with migraine needs time, as identifying what is a complex neurological condition is not always straightforward.

Dizzy woman
Many people with a migraine do not have headache at all, but experience vertigo and dizziness, stomach upsets and other symptoms.

GPs have been urged to consider the whole picture of migraine as a complex neurological disorder, as people experiencing the condition reveal their feelings of stigma.
Consumer advocates are calling for doctors to learn more about the condition and its treatments in a bid to improve outcomes for those with the condition.
Chair of RACGP Specific Interests Pain Management Dr Milana Votrubec, who experiences migraine herself, says more consideration is needed from health professionals to ensure people are treated effectively.
‘There is certainly a need for greater awareness,’ she told newsGP.
‘The most important thing is time. Get the patient back when they haven’t got a migraine and actually work out a possible management plan.
‘Then you can empower them to do something about it when they get the migraine, not trying to seek help when they’re in the middle of it all and can’t think straight.’
Migraine is a genetic, recurrent pain condition accompanied by neurological and gastrointestinal features that can be triggered into the attacks. It involves brain neurochemistry changes that include hyperexcitability in the cortex.
Dr Votrubec pointed to the unilateral and throbbing nature of the headaches, photophobia, nausea and vomiting, and a potential relationship to hormones as part of its complex symptomatology. She says in a hospital setting, in particular, patients can find it challenging to get the correct treatments and medications to ease their symptoms.
Dr Votrubec cites an example of a recent conversation with an anaesthetic pain specialist who raised concerns about people with migraine being dismissed from a local hospital and ‘treated as drug addicts’.
‘All the interns are being told you don’t prescribe opioids,’ she said. ‘When it comes to pain, we are becoming less and less comfortable in doing enough.’
Migraine Australia founder Dr Raphaella Kathryn Crosby says many doctors would have been taught at medical school that migraine is a vascular headache.
‘That was debunked about 10 or 15 years ago,’ she said.
‘It’s really important that we get all doctors up to speed,’ she said. ‘You’re not dealing with a headache; you’re dealing with a really complex neurological condition that causes a lot of symptoms.’
This year’s Migraine Awareness Month will highlight the spectrum of experiences for people living with migraine, with education, seminars and advocacy.
A 2020 survey of people who experience migraine conducted by Migraine Australia found more than three-quarters said they felt a moderate to significant stigma, while just 6% felt ‘none at all’.
Almost all (94%) felt medical professionals were likely to stigmatise people, given social concerns about drug-seeking, and slightly more than half (51%) felt medical professionals did not believe the extent or severity of their symptoms.
Equally, more than half (56%) had been accused of being a drug-seeker, generally by a doctor other than their usual treating clinician.
‘Migraine stigma affects all areas of life, but the medical professionals’ figures are the most alarming,’ the survey report found.
‘If we can’t get doctors on board with the idea that migraine is a serious, debilitating, genetic condition, we have no hope with the general community.’
Dr Crosby says common misconceptions include migraine being linked to anxiety or foods, or that all migraines include headache.
‘It’s not caused by anything other than their genes,’ she said.
‘They get the aura, they might get gut upsets, they might get vertigo and dizziness, and they don’t get much of a headache.
‘Recognising this cyclical representation of migraine is a big step forward.’
Dr Crosby says surveys of Migraine Australia’s members have shown a lag in referrals to a neurologist of about 10 years in cities, and longer in regional areas.
‘When we talk about migraine not being taken seriously, that’s what we’re talking about,’ she said. ‘It can get very, very bad very fast.’
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Dr Paul Grinzi   1/06/2021 8:47:29 AM

It's a pity some of our colleagues continue to perpetuate stigmatising, unhelpful language, especially in public facing media.
'drug seekers' 'drug addicts'.
These words are a barrier to care. These words are a barrier to caring.
We need to learn to remove them from our language.
the 'othering' of substance use disorders is troubling.

The RACGP'S AOD Education Program shares this resource to further or understanding and communication.

Dr Oliver Ralph Frank   1/06/2021 10:44:40 AM

The RACGP NewsGP article quotes "Migraine Australia founder Dr Raphaella Kathryn Crosby". :

"Raphaella Kathryn (RK) is a political consultant and academic specialising in voter behaviour, with experience in establishing NFP and member-based organisations from her previous political work. She lives with hemiplegic migraine, migraine with brainstem aura, and migraine aura without headache. Ahe is a super-responder to the new CGRP medications which has allowed her to recently return to consulting after a decade of being sidelined by migraine.

Is it just a coincidence that Dr. Crosby is a "super-responder to the new CGRP medications"? One of them, galcanezumab (Emgality) is on the PBS at $558 per month. I looked for any mention on Migraine Ausrralia's Webiste for its sources of funding. None is mentioned. Does Migraine Australia receive any funding from any manufacturers of migraine treatments?

Dr Oliver Ralph Frank   1/06/2021 11:15:12 AM

"Dr Crosby says surveys of Migraine Australia’s members have shown a lag in referrals to a neurologist of about 10 years in cities, and longer in regional areas". Most patients with migraine can and are being treated competently by their GPs. Every patient with migraine does NOT need to be referred to a neurologist.