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The Reality of Living with Chronic Migraines

Over the past several months my frequency of posting on The Scheffette has dwindled, not because I haven’t wanted to post but because I’ve been struggling with my physical health. Over the past 18 months or so, migraines have become an increasingly large part of my life and in particular, in the last 4 months, they’ve often formed a daily part of my life. What makes this significant as it relates to the Scheffette is that when I’m having a migraine attack, most of the time I’m incredibly light sensitive and nauseous which as you can imagine, makes it quite difficult to think about or compose a post for the Scheffette. Then when I have a good day, I spend that day catching up on all of the things I wasn’t able to do during my attack.

I’ve been grappling with whether or not to write about this particular topic especially because I’m not looking for sympathy, but I felt like I needed to offer an explanation for my sudden decrease in activity on The Scheffette; especially because The Scheffette has been my passion project and something I’m extremely proud of. As a result I’ve started to feel a sense of guilt for not keeping up with the precedent I set, which was posting twice a month.

One thing that I’ve noticed since I’ve started experiencing migraines is that most people don’t have any idea what it’s like to have one; and a lot of people think that migraines are just very intense headaches and mislabel ordinary headaches as migraines. Therefore, the second reason I wanted to write on this topic is to offer a bit of insight into what having chronic migraines are like and how they can affect day-to-day life.

As I write this, I am in an active migraine attack. I’m currently in the middle of an 8-day status migraine (which is a migraine attack that lasts longer than 72 hours) where I’ve had a migraine 6 out of those 8 days. Earlier in the month I had another 8-day status migraine; however, that time it was a continuous 8 days with only 6-12 hours of relief each day and then a recurrence. Out of the last 30 days, I’ve had migraine symptoms 20 out of 30 days.

There are different kinds of migraines, but I primarily suffer from vestibular migraines which bring a whole host of migraine triggers with it. Anything from bright light (like headlights on the highway at night; bright indoor lighting; or gym lighting) to loud noises (like when I’m trying to enjoy my niece or nephews birthday party; or at an event with many people in a small space) to movement – perceived or actual (like playing volleyball; moving my neck too much when stretching; or home videos / FaceTime) to the weather and pressure changes (living in Lethbridge is a dream when it comes to barometric pressure). It seems like anything and everything can set off an attack and most of the time I have no idea which of the triggers it was.

When I’m in an active migraine attack I have a wide range of symptoms depending on the severity. Every migraine I have has nausea and either light or sound sensitivity, or both. I call those my “core” symptoms. From there, I usually also get “bonus” symptoms depending on severity. I get everything from the stabbing, throbbing, pulsating, or pounding headache; becoming so dizzy and disoriented that I can’t walk; uncontrollable movement in my neck; tooth and jaw pain; neck pain; and touch sensitivity.

What this means for me is it’s extremely difficult to predict when I may have one and how severe it will be; which makes it extremely difficult to plan my life. Luckily, I have a fabulous family doctor who has been helping me with acute and preventative medications; but we’ve now reached the limits of her expertise. I’m now waiting to see a specialist to take the next steps – but its unknown right now how long it’ll be before I am able to get in to see them and I’m going to have to see them in Calgary.

Until then, I get to live in a limbo with band-aid medication solutions that only seem to help the severity and don’t seem to be helping with the frequency as we’d hoped.

The hardest part about living this way is that for the first time in my life I feel like others can’t rely on me. Depending on my symptoms I may have to cancel commitments, re-schedule clients, and miss or leave early from social events and recreation activities. Lately, my RSVP’s sound like “If I don’t have a migraine, I’ll be there.” As someone who has always prided herself on being reliable and sticking to my word, I am really struggling with this forced unreliability.

It’s also difficult to be my best self at work and even more difficult when I start the day without a migraine and end up with one mid-day. Often, I have a day full of appointments and unless I’m having such a severe migraine that renders me unable to function at all, I end up pushing myself to get through the day. This usually comes at the cost of completely crashing when I get home with more intense migraine symptoms than I had earlier in the day.

This creates a difficult choice every time I have a migraine – tap out or ride it out. The frequency has gotten to the point where I can’t drop everything every time I’m experiencing symptoms because if I did, I’d be off work for days at a time – which just isn’t feasible when you’re trying to build a practice – so most of the time I end up riding it out with a cocktail of medications, sunglasses, ear plugs, and ice. My struggles with not wanting to be away from work come from an internal battle with myself and not from any doubt that I would be supported if I needed to take time off. I know I would be unequivocally supported, but the truth is, I don’t want my work to be another thing on the list that migraines seem to be taking from me.

Home is another dimension entirely because during those status migraines where I’m suffering for days at a time, if I put all of my energy into getting through my day, I’m often completely useless at home at night. Most of those nights are spent in my bed, in the dark, ice on my head, sleeping or trying to sleep. When I have to do that, I’m not able to spend time with Mark, do housework, make dinner, or during a severe migraine, fetch myself my own medication and ice. Mark has been an incredible support and even though I can’t control my migraines, I still feel incredibly guilty for the extra load I’ve placed on him.

Suffice to say, the last few months have been a lot. To those that have already been so incredibly understanding and flexible with me, I appreciate you more than you know.

About the Author

Charlene Scheffelmair is a partner with Davidson & Williams LLP in Lethbridge, Alberta. She practices primarily in the areas of corporate and commercial law; residential and commercial real estate; estate administration and planning; and foreclosures.

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