How long have you had migraine and what type of migraine do you have?
For 52 years, I get aura migraines.
How does migraine disease impact your life?
It means I often can’t do my job to the best of my ability, which is massively frustrating as I set myself high goals.
I get maybe a dozen a year, sometimes more. I get coughs, colds – and now Covid – at the same rate as other people. Migraines are my terrific little ‘extra’. This means when I get one, I have often tried to ‘work through it’ as my sick leave will get used up.
To those on the outside looking in, there does not appear to be anything wrong with me. Saying ‘I have a migraine and have to go home’ can make me feel people are judging me as a skiver. Even when they proactively say they are not. It helped me to have a manager who also suffered migraines, which I did for four years.
What are your biggest migraine triggers?
Stress. And the removal of stress. I don’t look forward to day one of a holiday.
Friday my wife went into the ED at the hospital for urgent tests. Tuesday, I had a migraine.
I often get them as I get off the train, ready for work, after a stressful day before.
What medications, treatments or lifestyle changes have you tried to help manage your migraine disease?
Migraleve did nothing as far as I can tell. (Note, Migraleve not available in New Zealand). Rizamelt did nothing as far as I can tell. Systemic antifungals did nothing as far as I can tell. Paracetamol and Ibuprofen don’t seem to be able to dent the pain, nine times out of ten.
I once took sumatriptan with aura and the headache did not materialise, but I have occasionally had headache-less aura migraines, so I don’t know if it worked or not. I took one yesterday and it did not stop the migraine (which I still have).
I've tried exclusion diets, giving up caffeine and so on, when younger. This didn’t work for me.
How do you manage during a migraine attack?
‘Manage’ suggests that I am somehow in control.
Depending on the virulence of the symptoms I can sometimes tell if it is going to be a bad one or not. If it looks like it is not going to be a bad one, I keep going. I don't have the time or patience to be sick. Yes, I know.
Otherwise I go home to bed and sleep. As I’ve got older, they are lasting longer - presumably in the same way as I’m not bouncing back as quickly from any illness, which makes the next two or three days back at work very hard and tiring.
How do you stay positive living with migraine disease?
Knowing that there are lots of people out there who also have migraines. I’m not alone and not suffering as badly or as regularly as others. I have a nice life, otherwise.
How can migraine care improve in New Zealand?
Genuine awareness amongst non-sufferers can be quite low. Their expectation is it is a bad headache, but symptoms can be closer to Long Covid – brain fog, tiredness, irritability and aphasia, loss of control.
What advice do you have for other people in New Zealand living with migraine?
Don’t feel ashamed to talk about it. At the very least, be honest with your close family about how it makes you feel and how you want to be spoken with, and so on.
For instance, I’d tell my family: Don’t talk to me aside from asking closed questions as I can’t really handle complex conversations (‘Do you want dinner?’, not ‘What do you want for dinner?’). Don't touch me, especially not my head. Don’t wake me up when it's dinnertime. I’m sleeping to escape the pain.
Remember that after the migraine has gone, I will be totally emotionless for a day or so. (My former manager, the fellow sufferer, loves this bit. To her it’s like floating on a cloud. To me it is like being totally hollow.)
Similarly, try your very best to be honest with your employers. I know you might live in fear of being ‘let go’ for being difficult, but suffering in silence doesn’t help when you know you are not doing your best. With Covid, we all have a model for how people with serious illness can be treated. It pains me to realise that this level-headed sympathy was there all along, maybe I didn’t need to ‘work through’.
Anything else you'd like to share?
Quite a few people, when you tell them you have a migraine, will tell you that they once had a migraine and will then describe the time they got a headache.
Remember, not all migraines are the same, not all sufferers suffer as frequently or as badly, or with the same symptoms. Even if this person does not suffer migraines, they are trying to be sympathetic, even if a little hamfistedly. Don’t bite back at the ‘headache sufferer’, you don’t know the extent of their symptoms, nor how it affected them. It won’t help your cause if you make them feel bad, in any case.