'I was bedridden for years': Joanne's migraine story

14 June 2022 in News

Joanne Hayward and Rachel Barnes

As part of June's Migraine Awareness Month, former client, Joanne Hayward, shares her story of how she got her life back.

Migraines are classified by the World Health Organisation as a disability and while the symptoms are often invisible, they can be a significant burden on an individual’s life, their family, their work and our wider society, with reports estimating the economic cost at around a staggering 35.7 billion annually.

A migraine is more than just a headache, it is a complex, neurological disorder that affects multiple parts of the brain. While headaches are often associated with, or made worse by fatigue, lack of sleep, certain allergens, or stress, they’re generally successfully treated with rest or medications. A migraine, on the other hand, can present with severe pain and may be accompanied by other debilitating symptoms such as sensitivity to light, sound and smells, tiredness, temporary impairment of speech, sight and movement, and more.

Joanne Hayward says her life changed dramatically when she began to suffer from migraines.

"The last 30 years have been a mental and physical struggle and the migraines have taken a huge toll on my life, both personally and professionally. I went from working full time, travelling, socialising, enjoying dancing and creating fine art, to finding myself bedridden for years”, said Miss Hayward.

As a teenager and young adult, Joanne experienced episodes of weakness and often felt unwell, but was unable to find a diagnosis from her doctor. Now in her sixties, she was recently diagnosed with a rare form of migraine known as Hemiplegic Migraine with Aura.

Joanne’s condition is hereditary and her migraines typically present with stroke like symptoms, severely effecting her cognitive and physical functioning. Other symptoms include paralysis of one side of her face and body, temporary loss of speech, vision impairment, chronic pain, nausea and vomiting.

“My attacks lasted for days, sometimes weeks and I have been in and out of hospital for most of my life. Over the last thirty years, I have seen many doctors and specialists and have tried various medications, but nothing seemed to work and my health continued to deteriorate”, said Miss Hayward.

Joanne’s migraines also presented with ringing in the ears (or tinnitus), a common symptom for migraine sufferers. Fortunately, she was referred to an audiologist where she was able to reduce the condition through state-of-the-art testing and the use of hearing aids.

A turning point came in 2018, when Joanne was selected to participate in a drug trial for a CGRP inhibitor drug.

Administered by injection, the medication prevents a migraine headache and associated pain by halting the activity of a protein-like molecule called Calcitonin Gene-Related Peptide (CGRP). CGRP is involved in the widening of blood vessels and inflammation in the brain and is believed to play a key role in causing migraine headaches.

Joanne’s response to the CGRP inhibitor medication was positive and she experienced a significant reduction in the number and severity of her migraines. Unfortunately, when the medical trial finished, so too did her access to the medication, with the cost to continue purchasing the drug around $850 per month.

However, in an incredible act of generosity, close friends of Joanne’s covered the ongoing cost of the treatment for two years post the trial. "There are no words to express my gratitude and appreciation to my friends, Louise and John - their wonderful life changing gift gave me my life back”, Joanne said.

In 2021 the Therapeutic Goods Association approved other medications in the CGRP family of drugs and they were added to the Pharmaceutical Benefits Scheme, giving sufferers access to the medication without the astronomical price tag.

“My response to CGRP inhibitor medication has been completely lifechanging. While the drug might not work for everyone, it was the shining light for me. I have seen continued improvement both cognitively and physically since taking this medication. Though not a cure, it really helps me manage my migraines, and has given me my life back”, said Miss Haywood.

Neurological Council WA nurse, Rachel Barnes, has been with Joanne throughout most her migraine management journey.

“Being an invisible condition, makes it incredibly hard for migraine sufferers, especially given that the level of their attacks can be so extreme”, said Ms Barnes.

“No two migraines are the same, so there’s always going to be a bit of trial and error to discover what works for you and your condition. The great news is, that there are many different migraine specific medications and treatments available now”, she said.

“Joanne’s story shows that with the correct medication and the right wellness plans, you can manage your condition and enjoy life again”.

Joanne is now focused on a brighter future and says the assistance she has received from the Neurological Council of WA has been invaluable.

“The support and care that I have received from the Neurological Council WA nurses, Rachel and Kym, has been fantastic. They have shown such compassion and professionalism and have been invaluable in assisting me to continue to have a quality of life", said Miss Hayward.

“During the years that I was looking for a diagnosis and help, there were times when doctors just looked at me blankly and said, there’s nothing else they can do. My advice to anyone who experiences this sort of response is to get a second opinion as there are doctors and neurologists out there that can help you".

“By sharing my story, I want to give hope to people suffering migraines and let them know that it is possible to find a way to manage their condition, help is available and they don’t need to suffer in silence”.

Read more about Migraines with a Q+A from Rachel Barnes.

The Neurological Council of WA is a not-for-profit peak body for the neurological sector and provider of Neurocare, a Department of Health funded service providing neurological nursing and health system navigation support to Western Australians of all ages experiencing neurological symptoms or living with a neurological diagnosis. The Neurological Council WA provides state-wide nursing services, with offices located in Bunbury, Albany, Geraldton and Perth. For further information visit www.ncwa.com.au