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 called the PREEMPT Protocol specific to migraines. This protocol has about 30 injection sites on the forehead, over the top of the head, neck and shoulders. I’m needle phobic so these treatments were difficult, but 100% covered by medical insurance in Canada.
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. After this time I experienced a recurrence of chronic pain again to where I basically have pain every day at some degree. I also started getting vestibular migraines, which are not necessarily painful, but result in dizziness that can make it feel like I am walking on a waterbed all day.
I am now 55 and perimenopause/menopause definitely brought a lot of changes with it for my migraines. In the past few years I have tried the Watson technique from the Headache Clinic, which didn’t help. My GP also injected just my forehead with Botox, which only resulted in the rest of my scalp tightening and being intolerable. I was then referred to Auckland neurologist Dr Rosamund Hill. I have been with her for several years now. At first in private practice, and then was lucky enough to get a spot in her severely underfunded Botox for migraine clinic at Auckland Neurology Daystay Clinic.
I am currently living in Wellington because my husband has a contract with the government and having to fly back up to Auckland to receive my treatment every 3 months. Unfortunately, the hospital does not schedule people into appointments until a few weeks before they happen so I have had some very large airline bills to pay. Sometimes I will be given a time and then it gets cancelled, so I have had some times I have paid for a flight and then not been able to get my treatment. When the treatment is extended past the regular 12 week period it results in increased severity of pain.
How does migraine disease impact your life?
I live in a constant state of uncertainty and can fall into depression and definitely irritability which affects my relationships. 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 kids 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.
For the past 3 years I have been working as an Art Therapist in private practice. I find this work very rewarding but can only do this part time because my migraine pain tires me out and I need to rest a lot. I could not imagine having to work full time. I am also doing a lot of my own art creating. Quite a bit of it has to do with my journey living with this condition. I hope to exhibit this soon to call attention to how debilitating migraine is. I have given up several other things that I have been doing in the last few years, like a 5-day retreat that I was teaching each year in the Mindful Self-Compassion programme, as it was too tiring, especially if I was having more migraine pain during that week. I also gave up a volunteer evening spot for guiding online meditations because it was too difficult to maintain my commitment to this depending on my level of pain.
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. I come from a place of privilege in that I don’t have to work to support myself completely. I could not imagine where I would be if this were the case.
My self-compassion practice and creative practice are both a life savers 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. I have to restate though that I come from a place of privilege where I can make these decisions relatively easily.
I keep a daily diary of my pain levels, the medications I take and other information that may be helpful to monitor if the interventions are actually helping me. I recently tried an unfunded anti-CGRP medication that cost $360 a month and had to be taken daily. It had some uncomfortable side effects, and according to my diary, did not help much more than the Botox was already helping. I tried it for a six-month period and then gave it up. There are other unfunded medications, but I don’t want to keep spending more money when I am currently functioning ok. I would be really happy if there were more funded medicines to try and more funding for Botox.
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 kids 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.
