I’ve had some level of headache every day for 7 years now – Niamh Maher, Patient Story

By 7 September 2022October 12th, 2022MAI News, Patient Stories, Support

To most people migraine is simply a headache that goes away when you take some painkillers… Unfortunately, that couldn’t be further from the truth!

Migraine is a complex neurological condition with symptoms that range far beyond a headache and that can last for days at a time. It can vary widely from person to person. or me, it manifests as Hemiplegic migraine. I don’t always get the intense headache people would usually associate with migraine. My migraine symptoms mimic a stroke, leading to hours or days, sometimes weeks with numbness, tingling or weakness down one side of my body. This can be accompanied by dizziness, slurred speech and difficulty concentrating. As you can imagine, this comes with its challenges.

I have chronic migraine, which means I have more than 15 headache days per month, 8 of which are migrainous. I’ve had some level of headache every day for 7 years now.

At my worst, I was housebound for a year as my attacks were happening so regularly. I was unable to do simple tasks for myself and had to train myself to walk unaided again. The misconceptions surrounding the condition led to a lot of unnecessary shame and stress within the first few years. Employers didn’t understand the complexity of migraine as a condition and the accommodations that can make a huge difference. Friends didn’t understand why I started to cancel plans at the last minute, this was through no fault of their own, I was too embarrassed to explain it to them. I carried the unnecessary guilt and stress of this around with me for a long time. Thankfully things have changed dramatically since then.

I recently attended an online talk from The Migraine Association of Ireland with Dr. Nick Silver, who noted that migraine treatment should always start with lifestyle, and that’s certainly proved to be the case for me. After a number of failed treatments, I chose to stop waiting for a silver bullet and focused on controlling the controllables — while still working with my neurologist.

I view migraine management like steadying a Jenga tower.

I picture each brick of my “Jenga Tower” as an element of my lifestyle that keeps me on an even keel. Each time one shifts out of place the tower gets a little more unstable. Too many missing bricks, the tower crashes down and a migraine attack begins. This buildup of triggers or “wobbly bricks” causing an attack is called Migraine Threshold Theory. When I feel my tower wobbling, I focus on tapping each little brick back into place.

The main “bricks” for me are:

– Good sleep hygiene

– Regular healthy meals (especially keeping blood sugar balanced)

– Regular exercise (whatever I can handle at the time)

– Rest/mindfulness

– Hydration (if I feel an attack looming, I immediately reach for an electrolyte drink)

– Time in nature, particularly sea swims.

Some bricks are out of my control, for example, hormones or the weather. I now know that in the week before my period, I need to nail every other brick down! This way, if I do have an attack, it tends to be less severe. I’ve also found magnesium to be very helpful in my migraine management. I never leave the house without my sunglasses as glare of any kind can trigger an attack.  I’ve gotten comfortable taking breaks when I need them as I know that pushing through generally only leads to one thing. I have learned to have empathy for my body as it’s doing the best it can rather than condemning it for the things it can’t do.

I talk openly about my condition, not in a constantly complaining way. I found it’s too big a part of my life to try and cover up and often leads to additional worry about an attack happening in front of people – particularly when one of my attacks can look like a stroke and cause a bit of panic. This has also helped in my relationships as my friends and family now understand if I need to cancel plans or leave early that it’s because I need to and they make accommodations for me, which I absolutely love them for. It also helps to educate others and most importantly, remove the stigma surrounding the condition.

Has this approach “cured” my migraine? No.

Has it made my life much more manageable? Absolutely.

In the last 7 years, I’ve gone from housebound to getting back hiking. I’ve gotten back to being ‘ME’ and doing many of the activities I enjoyed before – even if there are modifications needed at times. Some days I climb a mountain, some days I climb under a blanket and that’s ok. More and more I feel hopeful for what is possible, focusing on the little wins every step of the way.

If you live with migraine, know that ‘You are not alone’, especially when there are amazing organisations like the Migraine Association of Ireland around. Chip away at the little things you can do, control the controllables and hold onto hope.

If you have someone in your life who lives with migraine, reach out, ask them how they are – how they REALLY are… And most of all try to understand and support them in any way you can. Migraine won’t kill you, but it can really take the joy out of life sometimes.

Niamh Reid @exploringireland, Patient Story.

*Please note, this story is for educational purposes only. It cannot be reused without permissions from The Migraine Association of Ireland to protect each patient’s GDPR rights. If you would like to use this story, please contact us first to request permission. Thank you.*