Migraine Scholar Canada

16/09/2021

Hi all!
Here is a podcast interview I did with Migraine Canada/Migraine Talks. Have a listen! https://podcasts.google.com/feed/aHR0cHM6Ly9taWdyYWluZS10YWxrcy5jYXB0aXZhdGUuZm0vcnNzZmVlZA/episode/ODcwZDkyMTktOTUwMS00NDc4LWE3YjMtNGNlZTIyZTRhODg4?sa=X&ved=0CAUQkfYCahcKEwjA8t3qxYTzAhUAAAAAHQAAAAAQAQ

As our social environment often reinforces inaccurate perceptions of migraines, it can be a very isolating condition which sometimes engulfs those living it in a vicious circle of anxiety and depression. Social worker and support group leader Susan Cape offers valuable insights from her ongoing rese...

12/08/2021

Anyone ever question this??
It's hard to explain to others, but I have no idea what "well" feels like or looks like anymore. I have good days, bad days and many day in between where I've learned to tolerate pain, dizziness, visual disturbances, numb limbs ect. You know the drill! 😛 I was raised to do this. As a woman I've been socialized to expect pain and discomfort are part of life.
For example, today everything is super duper bright! My left arm is numb, I have a ridiculous amount of pressure in my jaw, temples, my neck hurts, I can't stop yawning, my body is vibrating and there is a low level pain in behind my left eye that will probably get worse throughout the day (maybe not?). I'm up, I'm showered, I'm heading to the orthodontist for an appointment, I have a consultation with a new clinical supervisor when I get home that I need to jump in gear for, I have to spend some time chipping away at my research today and I have some errands to run in preparation for a move. Do I feel "well" enough to have an action packed day? Absolutely not. Am I gonna anyways? Yup. How?? 20 years ago I'd be in bed if I felt like this. Many of us become used to these symptoms over time and learn to tolerate them and I often work with clients around learning to do this but...is that level of acceptance (or denial) healthy? Am I not entitled to feel not up to things? Am I not entitled to take a time out? Is this inclination to suppress how I really feel helpful or does it hurt me? Idk the answers. I do know we are socialized to participate in society in particular ways, and when we can't due to disability we face an incredible amount of guilt and pressure. Idk if I'm ok with maintaining the status quo but I'm not sure of an alternative 😕

31/07/2021

Remember that "let's talk about migraine" event I spoke at in May? The videos of all the talks are up on the Pain Society of Alberta YouTube channel. Check out my talk at https://youtu.be/xXzEhQZevqo ☺️📚🎙️

20/07/2021

I know I've been quiet these days. Migraine attacks are rampant, not sleeping because of this new little guy but it's worth it. Meet Gordon, the great Pyrenees pup! 8 weeks old. He is pushing me to my physical limits the past few days but I have made peace with that. Besides...look at that face!! ♥️♥️

05/07/2021

Who identifies with this?
When I was doing interviews for my last research study, one of the questions I often found myself asking participants was "what percentage of your day is consumed or preoccupied by migraine". Of course the answer was always quite high. Migraine attacks themselves can be quite lengthy and as many of you know complicated by numerous phases. Additionally, preventing, treating and anticipating migraine attacks is a lot of work and takes up a substantial part of the day!
What is amazing about all of this (I gotta find the positive!!) Is that chronic illness warriors often reveal themselves to be creative, master problem solvers!! Let's cultivate and honor those skills! At the end of the day, it wasn't the medication that helped me figure out how to find safety again post Illness during attacks, walking my dog, going to work or while just living life..., it was me!! 🙃
You know your body. You know your mind. You often know what's best for you.
While it's important to reach out to healthcare providers and each other, you have an innate sense that guides you. Listen to it. 🙏☺️♥️

28/06/2021

Shame
I go back and forth on this
If it wasn't for my diagnosis, would I be where I am? Would I have made the leap to private practice? Would I have gone back to graduate school? Would I be doing a PhD doing research on a subject that is deeply personal to me? Probably not...
If it wasn't for my diagnosis would I suffer from regular panic attacks, strange neurological symptoms and exhaustion? Would I be so regimented with my schedule? Would I deny myself msg, chocolate, processed food, alcohol and caffeine out of fear of what might happen if I eat it? Would I be constantly aware of my surroundings and know how to escape if needed? Also probably not...
I know my experiences have made me who I am, and who I am is pretty damn awesome, but I still grieve who I was and wonder what life would have been had I not experienced chronic vestibular Migraine.
Grief and working towards acceptance is a huge part of how we heal from shame. How are you processing the loss of your former self and embracing who you are today?

24/06/2021

Check out my story as well as others stories at
Let's continue to raise awareness! ♥️🙏☺️

21/06/2021

Hey all! It's day today! 😎 Let's all continue our work to bring awareness to Migraine and what it means for those who are impacted by its effects.
How are you spreading awareness? What do you think would help with awareness initiatives? Feel free to comment below. ☺️
Hope you are all having a migraine attack free day!

15/06/2021

A friend sent this to me in the mail today and I can't wait to read it!
How many times have you gone to the Dr., clinic, ER and were sent off without answers, guidance, help, relief or direction?
How many of you were told you "just have anxiety" or that "nothing is PHYSICALLY wrong with you"? How many times did you give up and try to carry on as best you could despite pain and debilitating symptoms eating away at your sense of safety as time passed by?
How many times in your life were you told you were just a very "sensitive person", that it was just your "nerves", you were "dramatic" and how many of you internalized those messages as guilt and shame?
We know our bodies
We know when something is off
BELIEVE US!!! ✊💪💜

09/06/2021

Did anyone else read this amazing article by Estave et al. that was in the journal of Headache and facepain recently? If not I highly recommend it! I believe it can be accessed publically!
There aren't many papers that highlight patient stories with some depth so this is a step in the right direction!! I feel like our community got a win here!

07/06/2021

Help! 😁☺️
I've been thinking a lot about my research lately, what do I want to accomplish? who do I want to align my interests with (other patients, healthcare providers...)? What will make the biggest impact? And what type of work is most authentically me?
I've been working very hard to be diplomatic. I chose a research method that I felt would be heard by those in the medical profession rather than a methodology that would push buttons and ruffle feathers. I think a part of me was hoping I would be taken seriously as a professional if I went that route and that would open the door to me being accepted into the "professional" club rater than remain solely in the patient role. But recently I've realized that, I'm not really a good diplomat. I WANT TO RUFFLE FEATHERS!! 😁 I have strong opinions, i started this research in order to address the issue of dismissal at the hands of our current medical system, and for that reason I will always align my interests with patients above anyone else. So after a productive meeting with my PhD committee today, I want to know more about what other patients want! Do I pursue research that focuses or the organization of Migraine care in very bureaucratic, policy oriented ways in Ontario? OR is it more important right now to highlight the stories of patients (which are more universal) their experiences living with Migraine and explore the larger systemic issues that complicate their lives? Tell me your thoughts!

01/06/2021

It's Migraine awareness month everyone! 💜 It's also pride month 🏳️‍🌈, and while I'm thinking about how we can continue to bring awareness to Migraine and address issues around ableism, I'm also thinking about how we can be mindful of and bring awareness to the ways oppression plays out in very complicated ways, especially considering the various intersecting identities of our members based on race, sexuality, gender identity, socioeconomic status, education level etc. Some of us hold more privilege than others (myself included) and we need to remain mindful to allow space for, and advocate alongside others whose fight might look different than ours. Let's continue to build a supportive community!

31/05/2021

It's not a big grant like CIHR BUT!! Finally, someone thinks my research is worthwhile ♥️♥️☺️☺️
I seriously needed this. I've been in such a slump lately physically and emotionally. I've been fighting so hard to show that what I'm doing is necessary and to be taken seriously and sometimes that little bit of recognition is all we need! Gotta keep fighting 💪🙏❤️

25/05/2021

Migraine, Shame and Guilt 🤯
I struggle with this daily.
I know Migraine is not my fault. My symptoms started in my mid 20's. While I know now that I experienced episodic Migraine before then, it made no impact on my life until my symptoms suddenly occurred daily. This changed me!
While intellectually I understand Migraine is not something I'm responsible for, I still feel responsible for my symptoms, my attacks and how they might impact others. This makes me not want to socialize. I constantly fear that I'll have an attack and need to bail on plans, cancel or that I'll make someone uncomfortable. Hell, I HAVE made people uncomfortable! Some people don't know how to be around someone in distress. As a community we've conditioned ourselves to avoid discomfort, both within ourselves and others rather than show compassion and empathy. So I hide my symptoms, I downplay my distress, I make jokes, I minimize, I pretend I'm ok to please others and make them feel at ease. I don't meet my own needs, I ignore them. I disconnect. I disassociate. If I sense discomfort in you my back goes up. You're not my kind of person, but unfortunately those are *mostly* the only kinds of people I know so I carry on.
I'm learning to break these patterns of behaviour because they don't serve me. I'm learning to choose my people wisely and set boundaries. I'm saying no. I'm trying to show myself the same compassion I ask my clients to show themselves. I remind myself that Migraine IS NOT MY FAULT!l I'm a work in progress ☺️🙏 How do you cope with guilt and shame? How does it impact your life?

19/05/2021

Alcohol and Migraine 🍺🤨
For the longest time I completely cut out alcohol because it seemed like everything I drank triggered an attack. It didn't matter if it was a sip, or an entire beverage... alcohol was a super trigger for me. To add insult to injury, amitriptyline made my tolerance plummet and I started to get a lot of flushing even with tiny amounts.
I don't know what changed, but a year ago I started to test the waters again. I'm not a big drinker, but there are times when I feel really socially isolated because I can't eat something, or participate in something for fear it will trigger a Migraine attack. This has created a lot of shame or guilt, and it shouldn't...but I just feel like anything I ingest, short of ice cubes 😝 is a potential issue.
I've learned to allow myself certain things, in small amounts on "good days". It's a gamble. I don't do it often with company or if I need to be "on" that day. My threshold needs to be pretty good, but those are the days I might enjoy a beer, a glass of wine or chocolate. I've learned that not all chocolate is created equal. I love dark chocolate but it's a bigger trigger than milk chocolate. I love red wine, but it triggers me more often than not, Riesling however I tolerate pretty well. I still need to be careful, but I allow myself to test those waters once in awhile.
We're expected to change so much, omit so much, quit so much and honestly, I just want to be a bit saucy to myself once in awhile 😉😝 what are your thoughts? Do you completely avoid triggers? Or test the waters once in awhile?

15/05/2021

For those who watched the "Let's talk about Migraine" event yesterday I wanted to address something I said during the question period that I've reflected on quite a bit since yesterday...
Sometimes I get imposter syndrome. I completely forget the fact that I'm an allied health professional with years of experience or that I'm also a developing academic with a significant amount of education. I forget that I hold a unique perspective on certain issues and I stop myself from speaking my truth at times out of fear.
When I was asked about alternative health treatments during the question period, a part of me was really annoyed by the discussion around placebo. This caused me to give an answer where I kind of rambled on instead of saying what I wanted to say because I was afraid of being contrary. This is what I should have said! I AGREE placebo is real, it's probably the best medicine we have! I also completely respect others knowledge of clinical trial information. They are important. That said, my feminist, medical antho sensibilities are saying I think we need to be really careful about what we label placebo because we can't say for sure what is happening in anothers body or determine their experience. Some alternative therapies have been a game changer for me despite me resisting them. Telling me that's placebo, is very dismissive to me, it's White, Western Colonial and pushes a biomedical agenda, which is the dominant health knowledge base but not the only knowledge base. There is also a lot of valid criticism around how clinical trials are conducted and how we are socialized to believe positivist conclusions are absolute.You know your body best. Let's be cognizant of that and while something may not be appropriate treatment for us, we can at least acknowledge it may work for others ☺️❤️💪

14/05/2021

But it's NOT all in your head!
Getting out my last minute jitters before speaking at the Let's talk about Migraine conference that's happening today!
Over 1000 people have registered! Wow! So exciting!
I hope to see some of you there! ☺️☺️♥️♥️

10/05/2021

Rating scales!
Do you find them useful? Or do you find them frustrating?
I always struggled with rating scales because often what has prompted me to seek out medical attention for Migraine attacks has not been pain but has been Vertigo, visual aura, numb limp body parts or other strange sensations/symptoms. But when you say, I'm here due to Migraine, all they care about is pain level in order to quantify/qualify if you should be there, how to treat you and how to categorize you. When Ive said, I'm not in pain, I've been told the rest of my symptoms are anxiety related. "Oh that sounds like a panic attack" but it's not a panic attack because I get those and I know what they feel like, just like I know what Migraine feels like!! 🙄 If I play the game and say "it's a 10! An eleven even!" I have a 50/50 shot at being taken seriously...either the shiney new causious resident will run me through every scan to ensure I'm not having a stroke, or at least will hook me up with some meds (that probably won't help because I'm not actually in pain!). Oooorr they'll label me "addicted", no evidence, trial or jury! And strongly suggest I go home and "rest" and"drink water". I don't like pain scales. As an allied health professional I don't like scales. I prefer conversations. They take longer but they're more accurate, therefore my plan of care is more accurate. Scales are meant to simplify, provide a snap shot and silo patient experience, sectioned off by severity. But the human experience, embodied experience is much more complicated than what 10 numbers can describe #️⃣🔢 thoughts? Comment below! ♥️