I will attend the Migraine World Summit in 2020, here’s why!
Patient advocate Kelly Hayes-Crook shares how this online event helped her to manage migraines better
Migraine snuck into my life almost 30 years ago, shortly after a couple of bungee jumping experiences and has never left. Although, the flavour and texture of it has changed, the constant has been disabling pain, stomach problems, extreme sensitivity and very challenging cognitive issues. My efforts to seek help left me insulted, angry, confused and deeply discouraged. I understood my condition but I had great difficulty finding a medical professional to listen.
Finding the Migraine World Summit gave me hope. I listened to every speaker, took notes and went to my doctor appointments armed with knowledge. Migraine is a lonely, invisible disease but I now knew I was not alone. I no longer fear migraine; I dislike it immensely but now I understand it. I understand that I have a neurological disease – a highly sensitive neurological system – that needs consistency. I have a myriad of medicinal and non-medicinal tools thanks to the interviews on Migraine World Summit.
After 15 years of chronic migraine, I have recently experienced periods of episodic migraine so I know it is possible. I am volunteering with the Migraine World Summit for the second year, and the videos once again are jammed with valuable information and hope – hope for more pain free days, hope for more people including our doctors to understand that it is so much more than a headache.
Join us for 10 days of expert interviews and top notch science starting March 18. Learn from experts and researchers from all around the world, patient advocates and medical professionals including our own, Migraine Canada founder Dr. Elizabeth Leroux.
Knowledge is power!
Kelly Hayes-Crook, patient advocate
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My migraines started after the birth of my first child when I was in my early 20’s. At first they were episodic but increased in occurrence and strength throughout the years as I raised my family and worked full time. (In the early years I was prescribed “pills for my liver” with the belief that my digestive system was involved)!
In the beginning an extra strength Tylenol was enough to stop the pain, but the headaches were worsening and becoming more frequent. It was then I discovered Tylenol with codeine, an over the counter drug in Canada, in addition to being prescribed Fiorinal. Depending on the intenseness of the headache, I was taking all of these pills regularly (not all at the same time!) after a Manager in the company where I worked accused me of faking headaches to get time off. So many years I spent living in a “fog”, and continue to do so.
Last year I discovered this annual Migraine World Summit after subscribing to the Quebec Migraine Group in Facebook. It was a shock to read the stories of others who were experiencing worse migraines than I was, and taking medication I had never heard of. It was then that I saw that intense research was going on to find cures and treatments for all types of migraines. After listening to every speaker, and taking notes during each interview that was available to us online following the 2019 summit, I realized a big part of my problem was rebound headaches, and migraines. Not a minute of listening to these speakers was wasted time. My thanks go to everyone at the organization for their hard work and dedication in providing us with so much information on this disease which is now finally recognized in the medical field as being a real one.
Unfortunately my quest for relief from my migraines was delayed somewhat, BUT bad also comes with some good. In the Spring of 2019 I was diagnosed with Non Hodgkins Follicular Lymphoma which overlapped my plans for treatment for my migraines. Then I came down with Shingles towards the end of my cancer treatment where I was prescribed Pregabalin (Lyrica) medication for my nerve pain. Ironically, this pain killer has helped control my migraine episodes. I see my neurologist in March 2020 (soon!) and am eager to see where I go from here. I was initially supposed to begin taking Topamax last December but have opted to wait until I see my neurologist before making any change to the medication I am currently prescribed.
I am really looking forward to following the interviews scheduled for this year and to learn about all the research that has been done during the past year.
Thank you again to all the dedicated workers at the Migraine World Summit! Maybe help comes to me late in life (over 50 years), but better late than never!
I had the chance in November 2019 to be chosen by the QNJP (Quebec association of young students and searchers on pain) to present, as an ex-patient, the method that I have adopted in order to relieve me from my daily migraines that I was having for 16 years. Since the method worked for me (no more opioïd, no more BOTOX, no more cortisone) since May 2018, I thought I had to share this. As I say, it is not for everyone but if one other person can benefit in using that method…I will be happy ! You can learn about it if you go on the QNJP Facebook site or simply going on YouTube looking for Geneviève Filion.
Unfortunately I can not follow this year World Summit since I will be on holiday where the Wifi is limited but I wish everybody a good summit.
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Thanks for your story Kelly. Looking forward to working with you again at the summit.
Just reading stories of others who live with migraine. I have had chronic migraine for the last 10 years or so. Some days are manageable, others are not. To say that migraine has affected my life would be an understatement. There are days that it seems to control my life.
I take a preventative, have botox treatments and with migraines that are even more invasive started aimovig. Had my 1st injection with my doctor today. I want to be very hopeful but am a bit scared of that. However, my aim is to be hopeful. I wish that others didn’t have to suffer but you are my brothers and sisters as we travel this journey. May we all find a reason(s) to be hopeful that better treatments will be found or a combination of the ones we use will be successful.