Mara, Auckland

How long have you had migraine and what type of migraine do you have?

I had my first migraine attack at around age 12 and continued to suffer episodic migraine attacks during my teens and twenties. After the birth of my second child my migraine attacks became more chronic and I started to try more migraine-specific medications. Preventative medications didn’t decrease the attacks enough, and some of the medicines were too hard on my stomach as I suffered from gastric ulcers in my 20’s. By age 39, I was taking way too many NSAIDs and triptans to be healthy. I also ended up in the hospital every 3 months or so because of weeklong episodes that just wouldn’t respond to treatment. It was at that time my doctor (in Canada, where I’m originally from) booked me in to see a neurologist. The neurologist discussed all of the different treatments with me, from beta-blockers to Botox, and because of my medical history and side effects I’d had from other medications, decided we should try Botox. He used a migraine protocol of about 30 injection sites on my forehead, over the top of my head, neck and shoulders. I’m needle phobic so these treatments were difficult, but 100% covered by medical insurance. I continued with Botox for 2 years every 3 months and my migraine attacks diminished to where I was only using minimal triptans and NSAIDs about twice a month. I went from an average of 21 days of pain per month to about 8 days. In 2014, my family and I moved to New Zealand from Canada and Botox was barely known here. There was only one doctor in the Auckland CBD who was injecting with the full protocol at a cost of $1,600 each treatment. I went twice, but couldn’t justify the cost, so stopped. To my surprise, my migraine episodes stayed relatively few for 3 years. However, in the past 6 months, I’ve become severely chronic again, likely due to perimenopause, and there are also changes in where I feel the pain and its severity. I now have no pain-free days, and only about 3-5 days a month where I am almost pain free, enough that I feel like a normal human. I tried the Watson technique from the Headache Clinic, which didn’t help. My doctor also injected just my forehead with Botox, which only resulted in the rest of my scalp tightening and being intolerable. I have an appointment with Auckland neurologist Dr Rosamund Hill soon, so I’m keeping a daily diary again of my pain level and medications.

How does migraine disease impact your life?

I can suffer from depression and irritability, and I live in a constant state of uncertainty. However, I have done a lot of work with this and stopped working in the mainstream when my kids were young (I’m lucky that my husband makes enough money to support our family). I now work for myself and make rest a priority. In the past, when my kids were young, it was awful how much they and I missed because of my pain. Both my sons are very sensitive to my pain levels and ask me all the time for permission to play music etc. They’re great kids, but I do still carry a lot of guilt for all the time migraine stole from me. I’m now studying to be an art therapist and I’ve put most of my teaching on hold (I teach Mindful Self-Compassion courses) so I can give myself lots of time to write and read because I never know when I may be laid up for a week at a time with a migraine attack. Basically, this disease controls my life to the point where I have to make it a priority so I don’t commit to things that I may not be able to complete. My self-compassion practice and creative practice are both a life saver for me, letting me give myself permission to rest when needed, forgiving myself for these needs and knowing I’m doing the best I can. Art/creativity makes me feel like I’m productive when this may be all I can do, and lets me process my pain, or give myself a break by becoming absorbed in creativity.

What medications, treatments or lifestyle changes have you tried to help manage your migraine disease?

Medications: NSAIDs, acetaminophen, several triptans, prophylactic migraine medications and Botox. Lifestyle: Quit working in the regular workforce (I was a preschool teacher), attend meditation retreats yearly and practice daily. I make rest a priority, eat healthily (gluten-free for 2 years and tried anti-inflammatory and keto diets), drink lots of water, exercise regularly and listen to my body. I’ve spent years keeping diaries of everything I did and ate and dealt with to try and figure out my triggers. I’ve eliminated all triggers except those I can’t control.

What are your biggest migraine triggers?

Hormones and large pressure changes, such as the weather or airplane travel.

How do you manage during a migraine attack?

I usually take a rizamelt and 600 mg of ibuprofen. I also use diclofenac suppositories if the ibuprofen doesn’t work, or my stomach is off because of the amount I’ve taken. I sometimes take paracetamol as well, to alternate with ibuprofen. When my migraine attack is really bad, I lie down in a dark room with earplugs and an ice pack as well.

How do you stay positive living with migraine disease?

I use my creative practice and meditation as well as self-compassion practices regularly. I’ve been attending 10-day silent meditation retreats since 2010 and this has hugely impacted my life. When I found Mindful Self-Compassion as a course (I had basically found the practice myself by attending retreats) I decided I had to learn how to teach it. I now teach this programme to people and hope to work with others with chronic pain to make self-compassion and creativity available to them, because it’s such a wonderful way to find some equanimity with this uncertainty. I also have a wonderful husband and 2 amazing boys who support me tremendously.

How can migraine care improve in New Zealand?

I’m shocked how little GPs know about this disease and how readily they just prescribe more medication instead of looking to a specialist. I’m also shocked how much specialist care and treatment costs here. New Zealand is disappointingly behind in the availability of treatments, especially the newer treatments that are readily available in the USA and other countries. It’s prohibitively expensive to access treatments such as Botox, and these should be covered to make them more available to people.

What advice do you have for other people in New Zealand living with migraine?

I’m still finding my own way with this, only having lived here since 2014. I think getting the word out there about migraine is hugely important, and as tiring as it is, self-advocacy and being vocal about wanting specialist care and access to more varieties of treatments are important as well.
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