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The Importance of Migraine Advocacy – Why We Need to Speak Out!

I’m sharing my personal migraine story in partnership with Promius Pharma as a paid spokesperson. The story, thoughts, and opinions below are expressly my own. Promius Pharma is not responsible for any other content on this site.

2018; a new year, a new plan, a new chance to make a difference. Last year, I checked several things off my bucket list, including making self-care a number one priority.

One example of this was my participation at Miles for Migraine Philadelphia, an event raising funds for research and migraine awareness, with my number one caregiver, my mom.

It was very powerful to be surrounded by fellow migraine sufferers and caregivers in a shared effort to make a difference for the condition. I felt for the first time that I was empowered to take a stand against my migraine monsters.

I’m tired of suffering in the dark. I’m tired of missing out on moments with my children that I know I will never get back. Participating with the No Time 4 Migraines team was literally and figuratively a step in the right direction.

If you suffer from migraines, you understand how it is impossible to truly ever be fully prepared. Every migraine attack is a different monster—the onset, speed, severity, even how long it takes for each one to go away. Every migraine requires different management strategies, which I’ve learned is key to recovering after each attack.

I can say with conviction that I am affected by numerous migraine monsters, often during or because of unique environmental or situational experiences. Every time I fly, I get a migraine. On the first day of my period, I get a migraine. Every time it snows or rains, you guessed it, I get a migraine!

How can I better manage these awful migraine monsters? I suppose I could move to Arizona and never leave my house again. But we all know that this isn’t a real solution, so what do I do instead?

I try to avoid as many triggers as possible and remain completely informed so that I can be as prepared as possible for when an attack strikes. 

Being informed is critical to having meaningful conversations with our neurologists to get the help we need. This requires research, communication, and most importantly advocating for ourselves.

That’s why I am so thrilled that there has been an up-tick in migraine visibility through advocacy and event opportunities. Did you know that, this February, Headache on the Hill will empower patients to lobby their representatives in Congress about the need for additional migraine research!?

Organized by the Alliance for Headache Disorders Advocacy (AHDA), this event brings together health professionals, migraine advocates, and patients with a goal of increasing awareness and to advocate directly for research funding.

Thank goodness there are men and women out there fighting the good fight! It’s so important to have people in front of our government making sure migraine isn’t an invisible illness. Others can’t always tell what is going on inside our heads or understand the impact migraine attacks have on us.

A few weeks ago, I was on a tight work assignment in New Orleans. Of course, it was pouring that morning (one of my triggers) and of course, I had a migraine brewing.

Can you tell I was in pain just by looking at my picture? If you walked by me, you probably wouldn’t have, but I remember how much pain I was in and how hard it was to get through that day.

How will you make a difference with migraine awareness and education? Will you start to be more vocal about your headaches and the pain you feel associated with the syndrome? I feel like the more we talk about migraines the better! Here are some ideas to get you started.

5 Tips for Raising Migraine Awareness

  1. Write about your experience and share content on social media with #NoTime4Migraines
  2. See if migraine awareness events like Miles for Migraine and Headache on the Hill are happening in a city near you and get involved
  3. Speak with your doctor about how to improve your migraine management, including exploring options that can provide relief in as little as 10 minutes. You can learn more about migraines at NoTime4Migraines.com
  4. Speak with your family, friends, and coworkers about how migraines impact you and find ways you can all work together when a migraine attack strikes
  5. Stay informed of new migraine-related developments on social channels like the No Time 4 Migraines Facebook and Twitter pages

It’s up to us to be our own migraine advocates and to be empowered to take ownership of our migraine management! Be sure to visit NoTime4Migraines.com to learn more and jump-start your migraine related education.

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arlene

Monday 12th of February 2018

Hi, my name is Arlene and I have had severe migraines since I was 15, I am now 65 years old, so that is 50 years of missing out on life, using all my sick days at work for migraines. I have tried many meds, acupuncture, chiropractic, Tai Chi Chih, Reiki, essential oils. Nothing seems to work. I haven't given up yet, though, I am planning on getting back to practicing yoga, in the hope that it will somehow help! I am definitely interested in hearing more about advocating to get the word out to more people, because a lot of people think a migraine is "just a headache"!!

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