Migraine suffers offered online support

THE devastating impact of migraine has prompted a West Clare woman to appeal to the public and the medical community to educate themselves about the condition, and to highlight the situation of those on public waiting lists who can face waiting up to two years to access diagnostic tests.

Michelle is 36 years of age and has suffered debilitating migraines since her late teens. Her condition is so severe that she can have migraines for up to 25 days a month. She also experiences what are known as hemiplegic migraines. These cause symptoms similar to stroke and can involve inability to speak, loss of vision and partial paralysis. She has urged fellow sufferers to seek support from the likes of the Migraine Association of Ireland (MAI) and to advocate for treatment in cases where their GP or other medical professionals write off their symptoms as ‘just a headache’.

Over the years, Michelle has been prescribed multiple kinds of treatments, none of which have offered her any lasting relief. With the support of a Cork-based treatment centre and the drugs company, Novartis, she has now secured access to an injectable therapy through a managed access programme, but its impact, she fears, is beginning to decrease.

“The injection is self-administered and at first it reduced my migraine attacks to maybe 15 to 20 a month,” she outlined. “If I manage to get a day in between them at all, I feel really lucky. People ask me why I don’t just stay in bed when I have a migraine, but the fact is that you can’t do that for up to 25 days every month. There are days, though, that just getting out of bed and onto the couch is a major achievement.”

As a public patient, Michelle had to wait more than three years before becoming a patient of Dr Edward O’Sullivan and his team at the migraine clinic at University Hospital Cork (UHC). “There is a massive public waiting list and Dr O’Sullivan and the staff are incredible. I had an MRI done thanks to them, but the waiting list for that can be anything from 18 to 24 months for that.”

Over the course of her treatment, Michelle has been prescribed several treatments which haven’t worked and often produced severe side-effects. “With one particular drug, I had terrible hallucinations,” she said. “Another drug involved having to take 180 tablets a month and they left me absolutely wiped out. You can’t live like that. I’ve had between six and eight treatments at this stage which haven’t worked.”

She has also experienced what she feels is a lack of understanding from some hospital professionals. “I have been sent to A&E by my own doctor,” she said. “It’s a truly awful place to be when there’s bright lights and constant noise. Nobody wants to be there anyway. As soon as staff there hear the word ‘migraine’ though, it’s just a case of prescribing paracetamol which has no effect whatsoever. I’m not criticising the medical profession, but I have been told that they have as little as four hours training on headaches over the course of their whole degree and some of them just don’t understand what migraine is.”

The impact on Michelle’s live is huge and she described the condition as one that leads to isolation and loneliness. “It has affected my work and my life massively,” she said. “I try to just push through, hoping that it might be just a headache that will pass. When I do have a day which is free of migraine, I tend to try and pack everything in. That’s not a good thing because it’s so easy to over do it and trigger another migraine.

“If I get a migraine while driving, my sight could go, so I’m praying I’ll make it home. There are times I’ve been in the middle of a migraine and asked if I’m drunk, because sometimes I might not be able to speak. It is impossible to make plans because a migraine can come on out of nowhere. Sometimes, instead of having to cancel something, I just won’t accept an invitation. That’s easier than having to cancel, but it can be very isolating and there’s a lot of anxiety that come with it.”

Michelle is now very aware of the warning signs of an impending attack and said that if she can access preventative medication in time, she can sometimes stave off the worst. “I get a burning smell when a migraine is coming, it’s a phantom smell and there’s an aura too,” she explained. “The thing about the medication that can ward off an attack is that only a limited number can be taken within any one month.”

She has also found some relief from craniosacral therapy, which involves light hands-on touch to relieve pressure in the bones of the skull and spine. With support from MAI, Michelle has also engaged in training and education about the condition.

“There are a lot of self-management techniques that I have learned and MAI is an incredible support,” she said. “They will help people to find GPs who are more experienced in the care migraine patients and will find answers to all kinds of questions. They also provide a card to keep in your wallet so that if you have a bad attack, people will know what’s happening to you.

“Sometimes, there are simple things like cool packs, or pure peppermint oil that will help people with some of the symptoms. I would also recommend the Migraine Buddy tracker app and keeping a diary to track weather conditions and triggers connected to sleep and diet.”

Michelle has compared the impact of migraine to “being belted with a baseball bat and left for days”. “Even close family and friends can’t understand what it’s like,” she said. “It’s hard when they can’t see what’s causing the pain. If someone has a broken arm, it’s obvious what the problem is.”

Despite her own ongoing challenges, Michelle is keen to see other sufferers accessing the best possible care: “I would really encourage other people to track their symptoms. Advocate for yourself, even if it’s hard to explain to others what you’re going through. We all know our own bodies and our own limits. Don’t let Covid-19 put you off getting help. The migraine association is always there with support Migraine is a neurological disease that impacts the whole body. Don’t be afraid to get help.”

MAI will present a free Migraine in the Workplace seminar on Friday, October 23 from 12 pm to 2 pm. More information is available on Migraine.ie.