Far more than just devastating headaches, migraine can cause a range of symptoms including confusion, nausea, visual disturbance and more
Today, March 13, sees the start of Brain Awareness Week, which aims to promote greater awareness and understanding of both the brain and brain conditions — along with the need for investment in services and research. There are many different types of conditions which can affect the brain and head, and one of the most common is migraine, which affects up to 15pc of the Irish population. A complex neurological condition, it can be extremely debilitating and can have a profound effect on people’s lives.
Siobhan Condron knows only too well how migraine can disrupt and even shape someone’s life, as she has been suffering with it for her entire life.
“I have probably been experiencing migraine since I was a baby as my mother told me that when I was outside in my pram, I would be quite happy until the sun came out and then would start crying uncontrollably,” she says.
“It was a constant thing and I don’t ever remember not having it. But as I’m the youngest of 12 children, my parents were two generations older than me. So they were of the mindset that unless your leg was hanging off, you didn’t take painkillers. You just got on with things.”
But while remaining stoic in the face of daily suffering might seem noble, it had a huge effect on the Dublin woman’s life. She not only experienced crippling headaches but these were accompanied, preceded or followed by nausea, confusion and visual distortion.
“The thing that got to me most was not the pain, but the forgetfulness and cognitive issues,” she says. “I got labelled as lazy at school as sometimes I would forget to do my homework and other times I would forget I had done it — and would get into trouble for both. I didn’t realise that confusion and memory lapse was to do with migraine. I thought it was a character flaw.
“I would also not be able to remember names of friends or family during an attack. This carried on throughout my life and I could be at work and reporting back after a meeting, and would not be able to remember the name of the person I had just been with, even though I may have worked alongside them for years.
“I had other symptoms I didn’t immediately associate with migraine, including a need to urinate frequently prior to an attack and nausea, which would often come a day before the migraine. It took a long time for me to associate the two. I also had aura before and during an attack and have had visual distortion for years, so I would always see colours as being washed out.
“I remember as a child asking one of my sisters why the summer was always in black and white because everything seemed almost sepia to me. It wasn’t until I was 40 years old and had effective treatment that I realised summer was a colourful time of year, as I could see it for the first time.”
The 50-year-old, who works in further education, says she endured severe headaches “practically every day” of her life until she was in her 30s and received preventative medication for the first time.
However, after suffering side effects such as depression and severe drowsiness, she stopped taking the medicine and sought a second medical opinion.
“I had very bad side effects to the beta blockers I was put on— I remember being so tired that I once fell asleep at the traffic lights while driving,” she says. “I went back to the doctor who prescribed them and he said there was nothing he could do for me, so just gave me an over-the-counter prescription for painkillers. The pharmacist told me there were better options on offer and when I said my GP didn’t know about them, he suggested I should change GP.
“So I did — and my new doctor was more open to finding a solution. She put me back on the beta blockers on a lower dose but I had the same reaction, so she referred me to a neurologist as she had reached the limit of her expertise in that area. At this point, I was around 39 and the specialist prescribed a new medication called a calcium channel blocker, which began to work gradually — about three months after I started taking it, the migraines shortened and lessened in frequency — I might have two in a week instead of seven.
“I got a good spell out of this medication and had about a year of lessened attacks. I was told that successful migraine prevention medication works for 50pc of people, 50pc of the time, so the aim was to reduce it by half. But I got an even better result from it. However, I was told that I couldn’t take it indefinitely, so I weaned myself off it and got another good six months before they started to come back in the same frequency as before.”
The Dublin woman went back to her doctor and was advised to try the medication again. But once she started taking it, she began to suffer from different side effects, such as restless legs and arms while trying to sleep at night. She was at her wits’ end, as not only was she working full time but was also doing a Master’s degree, which she had to study for at night time using a “dim headlamp”, as the main light may have triggered an episode.
Desperate to find a solution, she attended seminars and undertook her own research. Together with her GP, she decided on a new possible course of action. “I am so lucky to have my GP as she is absolutely brilliant, and while I had been looking into what medication I could try and had a good idea of what the next possibility could be, she had also been doing the same,” she says.
“So I started on Amitriptyline which worked really well in the beginning, but then I stopped responding well to it. We increased the dose and it worked again, but then it stopped — and so the cycle continued. But as the dose increased, there were diminishing returns, as the more you take, the more sleepy you get.
“At this point, my GP said that she was going to refer me to a migraine clinic, and I got an appointment at St Vincent’s at the end of 2019. I was told that because I had tried three different families of medication and they had all been unsuccessful or had intolerable side effects, I qualified for the Ajovy programme of medication, which is a preventative medication designed specifically for migraine. I was shown by a specialist nurse how to inject it once a month into my abdomen, and so far it has been working brilliantly. It has been utterly life-changing for me.”
Having lived with migraine her whole life, Siobhan didn’t realise how much it was affecting every moment of every day. But now she is on a successful treatment, she can appreciate how her life has been transformed — especially as her wife also suffers from migraine, and she can see what an effect it is having on her too.
“When I see the impact migraine has on my wife, how it affects her every single day, how she has to cancel engagements and how much it is affecting her ability to study and work, I can see how draining it is for her,” she says.
“When I was going through it, I didn’t realise how much it was affecting me, as when you’re in the thick of it, your only focus is on trying to get through it — but now I can see what a crippling effect it had on my life.
“My advice to anyone who is suffering from migraine is to firstly make an appointment with a doctor and, if they haven’t already done so, keep a diary of when attacks happen and any triggers.
“The Migraine Association is good for providing templates for that, as the doctor will need to see a pattern of when a migraine occurred and what medication was taken. I would also encourage people to try and see a specialist if possible, as it is important to see someone who has expertise in that area.
“Because of the specialist help I have had, I don’t get many headaches any more. I still get aura and a bit of confusion, but it usually only lasts for a couple of hours — so it has improved my life so much.”
For more, go to migraine.ie