Suzanne, Canterbury

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

I am honestly not sure. I just have headaches pretty much every day, sometimes 3 migraines a week. I started getting them in my teenage years and they have progressively got worse. Sometimes I think there is an aura where black flecks pass across my eyes either before I get it or during but I also have pterygium and dry eyes so it’s hard to know if it’s that.

In my 20s, I managed on painkillers in the UK for a long time, was told the headaches were rebound because I took too much medication and that I had depression (which I have had on and off over the years). I’m a school teacher, but the only way I could get through teaching each day was to keep the pain at bay a bit. It was only when I moved over to New Zealand 9 years ago that I was prescribed migraine meds. These usually help with the pain although there have been a couple of occasions more recently when I phoned Healthline because the meds didn’t work and I actually thought something was seriously wrong. Of course, they just said to take more of the meds.

How does migraine disease impact your life?

In every way. When they were not so regular, I used to be super fit and healthy, running, going to the gym, playing squash, cycling. More recently, even walking can affect my head. I don’t sleep well, every day I wake up unrefreshed wishing it was bedtime. I feel completely wiped out all the time, like having chronic fatigue syndrome (CFS). Most days I have brain fog, trouble finding words/getting them out in the right order, focusing my eyes on anything, focusing on work. I feel like I am a grape that has had every last bit of juice sucked out of me and I am shrivelled! Every day to get through work it is like crawling along in thick mud and never getting to the end. In fact, my Grandad who is aged 97 has more focus/cognitive energy than me.

I am short-fused and my tolerance towards my children and husband is very low. I just want to be a good mum but each day I am just functioning to get through rather than living. Since having my 2nd Covid jab, it got a lot worse for a period of about 2.5 months. I have just had 5 days headache free, which is the first time in a long time although they were not anywhere near ‘crystal clear’ days. In fact, I can’t remember the last time I had a day where I felt well and clear in my head/body. A lot of the time I struggle to complete sentences and often get my words in the wrong order when I am trying to have a conversation. I used to be able to articulate myself well and now find this a challenge.

I feel like I have CFS all the time (have felt like this since I was late teens after glandular fever) or a very bad hangover. I find I cannot focus my eyes. I have had my eyes tested and glasses changed multiple times but my brain fog never clears long enough to read much any more. This is a huge issue for me as I used to read at least one book a week and I love reading. I manage to force myself to read at work but it is like looking through a blur all the time. I love my job and I cannot do half of what I want to do so I am just ‘getting through’. I am tired from managing the migraine attacks and just want to live a normal life. I want to be able to exercise, muck around with my kids, be spontaneous, all the things I see other parents doing.

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

I have tried exercising more to work through the migraine attacks. This just makes it worse. I take a huge amount of painkillers; have tried amitriptyline, nortriptyline, (which seemed to help until the Covid jab then I ended up with weird side effects if I took that then migraine meds), paracetamol and codeine, ibuprofen. I was taking sumatriptan which seemed to stop working a few years ago so I then tried rizamelt, which was better but seemed to give me scary effects more recently so I have swapped back to sumatriptan.

I now only work 3 days a week and I REALLY struggle just to do that. I have to pretend all the time that I am fine. I pay a cleaner to clean our home because it’s too much for me but even weeding the garden, I can only manage 15 mins before I feel like I have been hit by a bus or start getting a migraine.

What are your biggest migraine triggers?

I’m not sure because some things trigger sometimes and sometimes they don’t. White wine can be one although not always. I don’t really drink it anymore. Tiredness is a possibility although I only sleep around 5-6 hours (interrupted) a night and sometimes can go quite a few days without a migraine. Nor Wester/heat, again sometimes and sometime not. Raising my heart rate or bending down doing weeding can trigger at times.

How do you manage during a migraine attack?

I start by taking panadol etc then if it gets bad, I take sumatriptan. I put ice on my head and drink coke sometimes to try and counteract side effects from the meds. Once the pain goes, I carry on with what I am doing because I generally have to. I wonder if I was able to, whether the effects would go quicker if I had a lifestyle where I could lie down during an attack. I have occasionally done this and it has helped but unfortunately I can’t always do this. My kids need me and I have to work. My doctor has prescribed Topamax but I really want to try and find a better way of managing it all. I know I tend to overdo things so have a bit of a boom/bust cycle.

How do you stay positive living with migraine disease?

To be honest, I am REALLY struggling with this at the moment. To the outside world, I just act and stay positive because I have to. To my family, I am probably the most miserable person ever!!

How can migraine care improve in New Zealand?

I would like migraine specialists to exist who you can go to and have an actual plan for managing things rather than the GP trying to do it all. It sometimes feels like everything is disjointed and I just get lots of suggestions/meds thrown at me but no overall holistic plan.

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