Living with migraine means a world of pain, stigma and searching for a cure

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Illustration of woman with red hands around her head and yellow shards coming from her face for a story about migraine.

By Carol Rääbus

It affects thousands of Australians each day and can cause loss of speech, dizziness, nausea and even temporary blindness — not to mention terrible throbbing pain.

The migraine has been documented for thousands of years, and neurologists say it’s one of the most neglected conditions worldwide and is currently incurable.

Today migraine impacts 15 per cent of the population. Women are more likely to experience migraine than men, which is thought to be due to hormonal factors.

The direct and indirect costs of migraine amount to an estimated $14 billion per annum; $1 billion on health treatments and $13 billion due to absenteeism and reduced effectiveness at work.

While there does seem to be some genetic link to a person’s chances of having migraines, there’s no consistently proven cause and no one treatment appears to work for everyone.

To find out more about how people live with migraines, and what treatments may help, ABC Life spoke to people living with the condition and experts.

Migraine treatments people have tried

Nicole Mosqueda has tried everything from medication to piercings to ease her symptoms.

The 35-year-old mother of two started getting migraines after she had her first child almost 10 years ago.

“At worst I get everything — sensitivity to light, sound, [and] stabbing, throbbing pains throughout my head,” she says.

“When it’s on my left side I can generally push through if I’ve got to do something. I get one on my right-hand side which is much, much worse and more intense.

At her worst, Nicole was experiencing migraines for a week at a time and was affected for an average of 14 days each month.

She says during peak points of migraine pain, she feels so hopeless her thoughts can turn to self-harm and even suicide.

Reminding herself the pain will pass, and that she has two daughters to live for, is what gets Nicole through.

“It’s just a matter of pushing through and dealing with it, and forcing myself to get on with it because there is no choice,” she says.

“I am lucky enough that my kids are really awesome and very understanding.”

Mr Edmunds says feeling despondent is a common reaction to chronic migraine, as people struggle to find a treatment that works for them.

Nicole has seen GPs, osteopaths, physiotherapists, chiropractors and acupuncturists, and has recently taken up yoga to help find relief from her migraines.

“The last physio I saw worked on my jaw and that helped quite a lot,” she says.

A blurred image of a woman's face with her hand held up to depict the impact of migraine and possible treatments.

Willing to give almost anything a go to reduce or stop her migraine, Nicole decided to get daith piercings — a piercing that goes through the cartilage of the ear next to the ear canal — despite there being no medical evidence to support its efficacy in relieving migraine symptoms.

The area is a pressure point used in acupuncture, and there are anecdotal reports from some people reporting reduced migraines following the piercing.

“I went in with a migraine and I came out without one,” Nicole says.

While she reports having fewer migraines since getting the piercings and using essential oils, she says the ones she does get tend to last for a shorter time, but are more intense when they hit.

“I’ve gone through a lot of things with the migraines, but I still get them, and there’s nothing I can do to make them better.”

Migraine stigma in the workplace

Like Nicole, Dianne O’Reilly has tried a range of medications to deal with her migraines, which started when she was 14 years old.

In Year 10, Dianne missed two days of her work placement because of migraine. It was then she decided to find ways to cope so she could have a career.

“I thought, ‘This is basically defining who I am … I can’t do that in a professional life’,” she says.

Dianne works as a paralegal in a Hobart-based firm. She says she rarely takes time off work for her migraines. If she’s hit with a really bad one, she stays home until the pain has eased, and then will go back to work even if she’s still not feeling entirely well.

Mr Edmunds says there can be stigma around sick leave in the workforce for people with migraines, because it’s an unseen illness and some people are sceptical about the condition’s severity.

“For many, when they say it’s bad, it certainly is. They deserve every support and assistance, and not to be told you can just carry on,” he says.

“We need the message out there in the workforce … you shouldn’t just discard migraine sufferers.”

One of the lawyers at her current workplace also experiences regular migraines, and Dianne says this has helped with her employer being more understanding of her needs and putting in place changes to Dianne’s office to help her mitigate her symptoms.

“I know that a lot of mine seem to be triggered by light, so I can take certain preventative measures,” she says.

Dianne’s office has a window for natural light and no fluorescent overhead lighting. Her computer monitor is much smaller than the large flat screens most people use, and she runs filters to keep the light dim.

“I can’t physically look at anyone else’s computer monitors in the office. They’re too bright,” she says.

Reading black text on a white background can be difficult the day after she’s had a migraine, so Dianne has green paper she uses to print on so she can continue to work.

Now in her 50s, Dianne says her migraines are less frequent than they used to be, but are still a regular part of her life.

“If I catch them early enough … I can prevent it getting to the stage where I have to go to bed, so I can still function.”

Medical treatments available for people with migraine

Some people find great relief with prescription medications, but effectiveness varies greatly patient to patient, and side effects can be significant.

If you think you’re getting migraines, Dr Ng suggests seeing a GP first to rule out other conditions and ask about treatment options.

He says most patients he sees have tried a range of prescription medications and treatments that haven’t worked and are looking for something else to try.

Dr Ng’s first step is to look at the person’s lifestyle for things that may be triggering or contributing to migraines.

He’ll then look at ways to both manage a migraine when it hits and options for helping to prevent them.

Prescription medication that can be used to treat some migraines include:

  • Triptan medication, such as sumatriptan, naratriptan, zolmitriptan
  • Ergotamine compounds
  • Stronger anti-inflammatory drugs
  • Stronger narcotic-type analgesics
  • Metoclopramide, prochlorperazine or domperidone
  • Some antiemetic medications might be prescribed with other acute therapies to minimise nausea.

Preventative treatments can be prescribed for regular use for those who experience chronic migraines. Drugs used include:

  • Beta blockers such as propranolol, timolol, atenolol and metoprolol
  • Serotonin antagonists such as methysergide, pizotifen and cyproheptadine
  • Anti-epileptic drugs, such as sodium valproate or valproic acid
  • Calcium-channel blockers such as verapamil
  • Antidepressants such as amitriptyline
  • Botox injections, when given at the correct dose in the recommended locations, can ease symptoms in some patients.

A new drug made specifically to prevent migraines has recently been made available in Australia.

The drug erenumab (marketed as Aimovig in Australia), targets calcitonin gene-related peptide (CGRP), a neurotransmitter that has been shown to increase in the brain during a migraine.

It is given as a monthly injection and is not currently listed on the Pharmaceutical Benefits Scheme (PBS).

This is general information only. For detailed personal advice you should see a qualified medical practitioner who knows your medical history.

Source:https://www.abc.net.au

Illustration of woman with red hands around her head and yellow shards coming from her face for a story about migraine.

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