How long have you had migraine and what type of migraine do you have?
Chronic migraine (migraine without aura), for 57 years.
How does migraine disease impact your life?
When I was very young and there were no short-term drugs apart from disprin and minimal preventative drugs it affected my whole life.
During pregnancy and breast feeding they stopped completely – but who wants to stay pregnant all their life ! HRT has helped a bit.
In the past when I was younger (they started at age 13), it impacted on school and then my work hours. I ran out of sick leave very quickly. Some school leaders or colleagues became very doubtful and annoyed about my absences. This was worse 15 years ago but as knowledge about the condition became available, understanding improved. They left me exhausted and going back to teaching afterwards was a challenge. As a parent, it affected all our family life. As a singer and performer it affected performances.
As you can see and all of you have realised, it can impact your life dramatically Fortunately now the drugs and support have become more effective and available.
It still impacts my life as I have become a chronic migraine sufferer. I have several attacks start every week, but sumatriptan gets rid of them most times. I am able to get by with taking 25 mg at the start of the migraine.
Menopause didn’t help but I have friends for whom it did. I think I am one of the few like this so don’t despair!
What medications, treatments or lifestyle changes have you tried to help manage your migraine disease?
Long term: beta blockers, epilepsy medications such as topiramate, dilantin, most of the more common preventative drugs . Some have worked but once I increase the dosage I have to stop them because of side effects.
Newest preventive drug – Emgality – this was marginally useful but not enough for me to persevere with the cost per month. And HRT
Short term: sumatriptan – my life saver. No painkillers help, even fentanyl when it is a bad one (which thankfully is not often now), anti-nausea drugs.
I have used chiropractor, osteopath, acupuncturist, yoga, meditation, diet, medical help books, massage, headache clinic, Botox, occipital nerve block, naturopath and counselling. The occipital block and Botox were done through Auckland Hospital.
What are your biggest migraine triggers?
Lack of sleep, anxiety/stress, some foods – too much sugar, MSG and dark chocolate.
How do you manage during a migraine attack?
Take sumatriptan and lie down if at home. Sleep. If I’m out I take sumatriptan and carry on as the early stages of the drug working make the headache worse and make me feel a little bit fuzzy.
How do you stay positive living with migraine disease?
- Have a strong support group of friends and family or join the Migraine Foundation online support group.
- Sometimes you can’t always stay positive, and both my daughter and I are on a low dose antidepressants, which helps.
- Talk about it/share – it seems to be more people today have migraine or are aware of it. From anecdotal conversations there seems to be at least one or two people in each place of work or leisure group that have our disease.
- Treats.
- Have a good cry every now and then though crying is sometimes a trigger for me!
- Exercise or an activity that boosts you, for e.g I sing in a choir, outside in the environment.
- Tell myself that I am lucky and there are thousands of others who are worse than me or have more life challenging diseases (this only works well after a migraine).
How can migraine care improve in New Zealand?
- Setting up physical groups in communities so you can get support with physical communication, or Zoom groups.
- More education for GPs.
- More support from Pharmac to fund new drugs that have proved very successful for a large number of sufferers.
- Migraine awareness meetings and/or information for employers so they understand what their employee is going through.
- Support materials more obvious in chemists and doctor’s, even schools, so people can pick them up – the Migraine Foundation postcards and pamphlets are amazing.
What advice do you have for other people in New Zealand living with migraine?
- Keep a diary (an ‘at a glance’ monthly one with big squares works best for me). Mark the migraine days and detail events/foods/sleep patterns on the days prior to the migraine. What drugs did you end up taking, e.g 2 sumatriptan to ward it off or drugs to help with pain. Note severity and how long it lasted. Lack of sleep is a common trigger (it is for me). This kind of noting allows you to see patterns and triggers if there are any – a good thing you can share with your doctor.
- If your GP doesn’t seem too concerned or has much knowledge about migraine (thankfully there are not many of these) or just gives you a handout as one of mine did, change GPs if you can.
- Get a neurologist straight away if the migraines start to dominate your life. Be prepared to wait several months to get into one. I go privately because I have Southern Cross, so it may be longer if you have to go public.
- Call your condition a disease (it is), especially when people are dismissive and say “oh it’s just a headache why do you need to take time off school/work?”
- Join the Migraine Foundation Aotearoa New Zealand support group – the ‘sharings’ on there have helped and given me perspective of my migraine, as well as the odd thing I can try (I never stop hoping!) It helps you to talk to others in the same boat, so you don’t feel so alone.
- Be careful that in your desperation to find a ‘cure’ you don’t end up spending a lot of money on supplements or practitioners who promise all sorts of things.
- Don’t give up – research is finding new drugs all the time and one day something great will come along and “be funded by the government!”
- Let your employer or school management (for children) know about the disease and have information about migraine.
- Try not to make it ‘who you are’ i.e. the focus of your life.
