“Never Give Up Hope That A Breakthrough Is Right Around The Corner”
Michelle Tracy is a blogger, US Pain Advocate and the Grand Prize winner of our #MigraineHeart Campaign. We wanted to know a little more about how Michelle deals with migraines, her blog and why she chose the 36 Million Migraine Campaign for donation. Here’s what she had to say…
1) How have you learnt to cope with migraines?
I got my first migraine when I was 19, about 11 years ago. I’ve come to realize that a part of learning to cope is just the sheer amount of time you’ve experienced something in particular. In my case, I think I am better at coping with migraines now than when I first started having them. My coping mechanisms include educating myself as much as possible, blogging and advocating for migraine awareness and funding, and surrounding myself (both in person and online) with compassionate people who either understand or want to understand. Both Dialectical Behavior Therapy (DBT) and Mindfulness Based Stress Reduction (MBSR) have played a key role in how I learned to cope with chronic migraines and in learning how to live my “new normal.”
In terms of what I do to prevent/abort migraines, I’ve tried almost everything with limited success. I receive Botox injections from my neurologist every three months as a preventative measure. I also go for regularly scheduled acupuncture appointments. In addition, I’ve recently decided to give Depakote another try. As for aborting a migraine in progress, I use Sumavel Dosepro and Relpax (both triptans) as my first line of defense, along with ice on my forehead, heat on my neck, and a Coke to settle my stomach and give me a jolt of caffeine. If those fail, a trip to my primary care physician or the Emergency Room might be in order to receive intramuscular injections or IV infusions of pain medication, anti-nausea medication, steroids, and Benadryl.
2) Why did you pick 36 Million Migraine Campaign for donation?
In a nutshell, as discussed in their “Core Message Points”, The 36 Million Migraine Campaign is “is the first of its kind ever in headache medicine — dedicated to increasing our nation’s research investment in migraine and raising public visibility for one of the world’s most disabling disorders.” 36 Million refers to the number of Americans suffering from migraines, although that number is believed to have increased since the Campaign began back in 2013.
The main reason that I chose The 36 Million Migraine Campaign as the recipient of the $1,100 donation from Migraine Buddy is their concept of a migraine patient registry and biorepository. Their website explains this better than I could:
‘Imagine the power of an enormous database with information about millions of migraine patients, packed with demographic data (age, sex, residence, family history) and medical information (type, severity and frequency, treatment history, etc.). Now, add a “biorepository” to this database (patient-provided physical samples of saliva, blood and other genetic and biological material), along with a library of brain images that show sources of pain or impact of therapies. If you were a scientist accessing this treasure trove of information, you might find powerful clues to the causes and treatment of the disease. If you were a migraine treatment specialist, you might see how others have successfully treated patients with the same profile as yours.
Registries are growing more common.
There are statewide and national patient databases for most neurological diseases including Alzheimer’s Disease, Epilepsy, Parkinson’s Disease, Amyotrophic Lateral Sclerosis, Huntington’s Disease and many others that have uncovered clues to the genetic cause, risk factors, prognosis, and treatment for many of these diseases. Unfortunately, there is no state-wide or national patient registry for migraine, or any other headache disorder. We are way overdue to start one.” -excerpted from http://goo.gl/XVFMjl
I invite you to check out the following two videos to learn more about The 36 Million Migraine Campaign:
Dr. David Dodick (professor of Neurology and Director of the Headache Program at the Mayo Clinic, as well as the chair of The American Migraine Foundation) discusses the launch and the purpose of The 36 Million Migraine Campaign:
Cindy McCain (chair of The 36 Million Migraine Campaign) discusses The 36 Million Migraine Campaign on The Today Show:
3) What made you start blogging?
I began blogging partially as a way to reclaim a passion that I felt migraines had stolen from me. For as long as I can remember, I have always been writing something, whether it was poetry or short stories or any number of other things. When migraines began to take over my life, I turned to writing as a way of sorting through my feelings. Soon, I realized that writing in a public forum could be a form of education, as well as advocacy.
Raising awareness for chronic migraines, chronic pain, and invisible illness became a new kind of work for me, since the migraines had rendered me unable to hold down a “typical” job. But it was and always has been more than just work: this type of advocacy is my passion. Not only do I want to engage those in the migraine community to let them know that they are not alone, I also want to garner the attention of people who do not suffer from migraines. By blogging and engaging in social media advocacy, I am able to be a part of the solution, a part of the movement that will eventually treat, cure, and prevent this disease that has caused me so much physical and emotional pain. Sometimes, when I’m flat on my back in a dark room with a migraine, I start to feel useless. Then, I remember that someone could be reading my blog or clicking on my fundraising pages at any time. My writing can still have an impact even when I am totally incapacitated. Obviously, I’d love for a cure for migraines to be found in my lifetime but even if it’s not, I will never feel that my work has been wasted. It is enough to know that I may be some small part of a movement that will help other people down the line.
My blog can be found at www.migrainewarriorblog.wordpress.com
I’m on Twitter as @CheDeco
My fundraising page for The 36 Million Migraine Campaign can be found here:
My fundraising page for The 2015 American Headache
& Migraine Association Annual Patient Conference Scholarships can be found here: https://www.crowdrise.com/2015ahma/fundraiser/michelletracy
4) Do you have any advice or tips for chronic and occasional migraine sufferers and for those who may not know they have migraines?
My biggest piece of advice is to take control of your personal journey. There may be things that help your migraines that don’t help others and vice versa. This is okay. You don’t ever need to feel like a failure just because a treatment that works for many doesn’t work for you. Conversely, just because a treatment does help you doesn’t mean that your migraines are any less legitimate. Different things work for different people, which seems like a really obvious observation. However, I have to continuously remind myself that this is the case. Also, never give up hope that a breakthrough is right around the corner. I’ve sludged through the chronic life for 11 years and I’ve certainly had my ups and downs but I’ve never given up the idea that I can find new and different and better ways to manage my migraines, in addition to my dreams of both a cure for migraines and a way to prevent them altogether.
If you are beginning to suspect that you have migraines, there is one key question that can usually be answered pretty easily: do any of your biological family members suffer from migraines? Because migraines run in families, this could provide an early clue about whether you’re dealing with migraines. If one or both of your parents has migraines, you are much more likely to experience migraines as well.
Secondly, tracking your migraines is an important step for any stage in your migraine journey. This will help you identify symptoms, triggers, which medications work and which ones don’t, and a whole host of other information that will be helpful for your primary care physician as well as your neurologist or migraine/headache specialist.
Lastly, I’d like to highlight this last part as the most important piece of advice I have: Please remember that you are not alone in all of this. Over 36 Million people in America alone are battling migraines. Some of them are chronic, like me. Some of them are episodic. Wherever you fall on the spectrum, please know that there are people out there who get it, who understand, and who want to help. There are support groups online and in-person, there are bloggers and Tweeters, there are Facebook pages and websites. Reach out and connect with what I like to call the “migraine tribe.” Migraines can be an isolating disease. Never underestimate the power of talking to someone who’s been there, who knows the struggle, who might be able to answer some of your questions. I’ve met some incredibly kind and compassionate people on my own migraine journey. They’re out there. You just have to know where to look.
Thanks so much for speaking with us Michelle- you are a great inspiration for all of us!
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