How long have you had migraine and what type of migraine do you have?
I had thumping blood rushes when I woke up, and times of visual aura with head pain from when I was about 10 years old. I was X-rayed and given medication in my teens so I thought that was it. Headaches = painkillers (Panadol, Nurofen). Those painkillers didn’t work.
In my thinking, a headache was a lesser form of a migraine and therefore migraine = stronger painkillers (Brufen, Codeine). I would have a bit of a headache, and knowing that it could be worse (after all it could be a migraine) I would wait to take painkillers. I lived with a bit of a headache and then it would get worse so I’d take painkillers.
I counted ‘a migraine’ as floating air waves and sparkles moving inwards, the sensation of falling even if I was lying down, sensitivity to sound, really hot eyes and head pain up to an 8/10 with a metal rod poking into my head and twisting like medieval torture. Maybe that’s a 10/10 pain for some but I’ve never been shot or passed out with pain so I leave a bit of room on my pain scale for other terrible pain.
I have chronic migraine but have recently found relief so may be able to drop the ‘chronic’ term.
How does migraine disease impact your life?
It takes effort to live in pain. I have to focus hard on words, and that is tricky as I use words a lot in my line of work. I feel frustrated at small impositions. I wander aimlessly trying to remember what I was at the supermarket for and which aisle it is in. I look and sound grumpy. I find it hard not to actually be grumpy, particularly if I’m given a suggestion of something to try for my headache.
Avoiding triggers and trying things that might help all takes time and money. I have spent money on things that don’t work. Avoiding triggers also means not going to some events that I think I might enjoy if I didn’t think it would cause a migraine.
What are your biggest migraine triggers?
My biggest migraine triggers are:
- Broken sleep/staying up late.
- Food – caffeine, alcohol, chewing hard muesli bars and possibly soft cheese?
- Thirst/Hunger – not eating regularly and getting hungry often means the next day I have a headache.
- Glare and bright lights.
- Temperature – if I get cold, especially feet and hands or really hot it means the next day I may have a headache. I avoid sweaty exercise/activities.
- Weather – I feel like a barometer for a thunderstorm, I hate heavy humidity (cold or hot) and the ‘stuffy’ atmosphere.
- Stress or relief of stress – significant change, or emotional stress out of the ordinary. Sometimes I would get a headache when the stress of something came off.
- Smells – Exit Mould smell, incense smell.
- Bending down – a feeling of a blood rush in my head, e.g. tying my shoes and the downward dog pose in yoga is a no go.
What medications, treatments or lifestyle changes have you tried to help manage your migraine disease?
Six years ago, I moved city and changed GP. It was about three years ago that I had mentioned that I was sick of taking strong pain medication for migraine and my GP mentioned there were preventative medications for migraine. News to me, great, sign me up!
I started taking Propranolol, a beta blocker, and it seemed to flatten out the number of bad pain days and the length of what I called a migraine. I still had most days with ‘just a headache’ but that was an improvement so I allowed myself the side effects of general tiredness, and night hallucinations and screaming. That potentially was a worse side effect for my husband and daughter to be fair.
Eventually, early this year I decided Propranolol was working less on the migraine, and the side effects on my sleep were increasing. My husband could well be punched in the night if I turned the wrong way to fend off the bodyless heads that kept appearing before me.
I started to look into what medications were out there for migraine, and that necessitated learning about migraine. I didn’t know what I didn’t know about migraine! I started listening to the UK National Migraine Centre podcast called Heads Up.
I quickly realised that I had chronic migraine, and I had been approaching them completely wrong. I also heard the term ‘clear head day’ and started to ask around if that was a normal state of being. Once I heard that is the case, I wanted one!
The next anti-migraine medication I tried was Nortriptyline, often given for improving mood. I did find I had an improved mood – definitely less tiredness than after Propranolol, but not much change in migraine, and terrible dryness. I could barely talk my mouth was so dry! My entire body dried up and there were added side effects there that needed different medical management. I didn’t want to keep taking a medication that I needed other medications to combat so on to the next anti-migraine medication.
The third anti-migraine medication I tried was Topiramate, an anti-epileptic drug. So far, the worst as I was dizzy, nauseous and an insomniac on this, and I lost a few kgs in just the first week… and still having migraine too. I really tried to get used to it but five weeks in nothing was improving so I came off that for a break and to better observe whether there was a pattern to my migraine.
Finally, I saw a neurologist in November and there were another four funded medications suggested for me to try, or an unfunded medication for migraine called Emgality (there were others but Emgality was ‘the cheapest’). I was not at all keen on the $325 per monthly injection price tag of Emgality so decided to try another anti-hypertensive medication called Verapamil. It looked like it might have less side effects than the other three medications listed. Alas, it affected my sleep and gut health immediately. I would have been willing to stick with it for a bit longer had it not been for the sudden and intense drop in mood to the point of depression. That is not me at all, so definitely not a medication that I would want to continue and have to increase to have any chance of a positive effect on migraine.
Rather than try another medication that might work for migraine, but likely have horrid side effects, I decided that the price tag of Emgality may not be so bad if it actually worked. I definitely liked the sound of something created specifically for migraine prevention so asked my GP to prescribe Emgality. Emgality belongs to a group of preventive medicines that stop the activity of a naturally occurring substance in the body called calcitonin-gene-related peptide (CGRP). Increased levels of CGRP have been associated with migraine. I don’t understand the science of it so much but am happy to report for me, no side effects whatsoever. I have had a record number of days without painkillers or triptans already. On day 6 and day 7, I had a feeling of pressure around my head from the hot humidity and thought a migraine might come on, but getting in to a cool environment and using the Mynd device put paid to that. Amazing! I’ve never gone that long without painkillers.
How do you manage during a migraine attack?
Thanks to the Heads Up podcast and exploring the Migraine Foundation Aotearoa New Zealand website, I learned about things that might reduce the number and severity of attacks. I take supplements (Migradol), manage blood sugar levels, and use a TENS machine called Mynd. I added these things into my daily life and threw in some osteopathy and massage (monthly) just in case that helped too. I avoid triggers as much as possible.
During a migraine attack I take Rizatriptan or Naproxen when it starts to come on into head pain. I have usually recognised myself having word finding difficulties and yawning a lot prior to that but I don’t want to take them too early or frequently so wait for the pain stage, but 1-2/10, not waiting for a 4-6/10 like I used to.
I also try and create nice sensations for myself e.g. I use essential oils on my scalp, base of neck and temples to give me a nice smell to focus on. I use ice on my eyes, and a warm wheat pack on my neck. I might have a shower or a nap if the day allows. I try and avoid scrolling on my phone and instead watch leaves or the clouds.
How do you stay positive living with migraine disease?
I’m generally a hopeful person and have a discipline of gratitude and finding joy. Perspective helps me to – looking at what others are dealing with; I have plenty to be grateful for.
I don’t always stay positive about migraine disease or the long path it took to get some relief this year. However, I am feeling hopeful about the science around anti-CGRP medications. I celebrate clear head days and am talking more about migraine with anyone who will listen.
How can migraine care improve in New Zealand?
It took me until my early forties to hear about prevention medication and my mid-forties to hear about triptans and how to use pain killers (i.e. don’t wait for aura/strong pain, take them asap). I feel like that is basic information to know that I missed for years. I think a simple pamphlet or a few leading suggestions or questions from a GP would have made a huge difference to my life.
What advice do you have for other people in New Zealand living with migraine?
Learn as much as you can. Advocate for yourself. Make some changes. Know that you’re not alone. Science is on now and increasingly on our side.
