Thoughts on Living with Migraine: Raise Awareness, Reduce Stigma

SundayThoughtsGood afternoon and happy Sunday to my Migraine and Headache family!

Living with Migraine, Cluster Headaches, NDPH, and other Headache disorders isn't for wimps! The physical burden alone can be debilitating and sometimes more than we think we can bear. Then there's the emotional burden — the grief of losing parts of our lives, the guilt for not being able to work or care for our families as we'd like to, the too-frequent feelings of hopelessness, and more. When we add the burden of the social stigma attached to these diseases/disorders, it's staggering.

All of that said, we have far more power over Migraine and other Headache disorders and their impact than we might think. I recently attended the American Headache Society's Annual Scientific Meeting in Boston, and am so excited and encouraged by the news of new treatments in development. Great progress is being made with four new CGRP Migraine treatments. One of them has now been submitted to the FDA for approval, and the other three are getting close. GammaCore's vagus nerve stimulator has now been approved for the acute treatment of episodic Cluster Headache. The ATI Neurostimulaton System is doing well in clinical trials, and I expect we'll see it win FDA approval for treating Cluster Headache soon. We still, of course, have a long way to go, but I'm very encouraged by all of these new developments.

Unfortunately, we haven't made as much progress in increasing public awareness of these diseases/disorders or in reducing the social stigma. There are many reasons for this, but I fully believe that part of the responsibility lies with us, the patients who live with them. If we sit back and expect others to raise awareness and reduce stigma for us, it will never happen. We must each stand up and speak out. We can't continue to hide if we want things to get better. Everyone who is able to read this is able to join in awareness activities to some extent. It can be as simple as putting awareness statements on your Facebook page, Tweeting or reTweeting, or simply sharing a good article we find. 

We're more than half-way through Migraine and Headache Awareness Month (MHAM), but there's still plenty of time for each of us to participate to the extent that we're able. Visit Migraine Ninja or my Facebook page if you don't know where to start. 

Here's a little cartoon I created for MHAM. You're welcome to post it and share it as long as you don't make any changes to it.

MHAM-4-Panel

If you're already involved in raising awareness and reducing stigma, THANK YOU! If not, what are you waiting for?

Live well,

 because a migraine is NOT "just a headache"
Visit MigraineDisease.com

 

MigraineNinja200

 drawing on our inner Ninja to live a full life
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Donation to American Migraine Foundation for Migraine and Headache Research

AMF-R4R-AHMAIn San Diego last month, it was my great pleasure to present a donation of $17,434 for Migraine and Headache research to Dr. David Dodick, Director of the American Migraine Foundation.

The donation came from two Runnin' for Research runs/walks held in Morgantown, West Virginia, and Louisville, Kentucky, last year. Runnin' for Research had placed the race profits with the American Headache and Migraine Association (AHMA) for disbursement.

Although the name is the American Migraine Foundation (AMF), the AMF does a great deal to help people with all Headache disorders, including implementing a program to assist in the development of headache clinics in academic medical centers and the American Registry for Migraine Research (ARMR). ARMR is a database containing information about patients diagnosed with migraine and other headache disorders—including their age, gender, headache type and characteristics, severity and frequency of attacks, treatment history, family history, and other medical information including physical samples (known as a biorepository) from each patient for genetic analysis. ARMR is a valuable tool to advance research to help scientists understand the causes of migraine and other headache disorders and move closer to finding safer, more effective treatments to eventually find a cure.

The mission of Runnin' for Research is "to improve the quality of life of those who suffer with headache and migraine disorders through fundraising for quality research and the promotion of patient empowerment, community awareness, and local and national advocacy."

The American Headache and Migraine Association is the patient arm of the American Headache Society. AHMA's mission is "to help those affected by Migraine and other Headache Disorders find and use our voices to empower patients, family members, friends, and care partners. Through education, support, advocacy, and research we will bring hope and banish the feelings of hopelessness that too often accompany these disorders. We will work to dispel myths and misconceptions, thereby working to eliminate the stigma we face all too often and replace it with compassion and understanding."
    

AMF-Donation-160609

For more information on any of these organizations, see their web sites:

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

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Under the Hat for Migraine and Headache Awareness

Under-the-Hat-AHMAAs a part of Migraine and Headache Awareness Month, the American Headache and Migraine Association (AHMA) is participating in the European Headache Alliance's "What's Under the Hat?" initiative to raise public awareness of Headache Disorders. AHMA has selected today - Saturday, June 25th - to be our "Under the Hat" day.

Do you live with a headache disorder? Share your story!

Share your story, along with a photo of yourself wearing a hat, to Facebook or Twitter OR create a video story and post it to YouTube, including the hashtags ‪#‎underthehat‬ ‪#‎MHAM‬ and Twitter handle @AHMAOrg

You can find helpful tips on participating here: http://www.europeanheadachealliance.org/under-the-hat/

Please include the logo shown here.

Spread the word to your friends and family so they can join in the fun!

 

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

Follow me on    or 
 

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Sunday Thoughts on Living with Migraine

Embrace-HopeGood afternoon to my extended Migraine family. I hope this Sunday afternoon finds you feeling as well as possible.

The strange weather of this past winter and this spring has been really tough on Migraineurs for whom weather changes are a Migraine trigger. Almost nobody has escaped unscathed. Since weather changes are one of those dastardly unavoidable triggers, I'm at a loss to offer many suggestions to help. One thing I can tell you is that truly effective preventive treatments, while they can't help us avoid every Migraine, can often help even with weather-triggered Migraines.

My own Migraines have gone back and forth between episodic and chronic, mostly because issues with other health conditions made it necessary to reduce the dosage amounts on some of my preventive medications. Thankfully, they're back to episodic thanks to not one, but two treatments that are effective for me. Botox treatments helped me go from 25 Migraine and Headache days a month down to six to eight days a month. Last summer, when the Spring TMS device became available, I started using it both to treat my Migraines when the occur and twice a day for prevention. Amazingly, it's been aborting most of my Migraines without medications. That's more than I had hoped for, but it got even better. With the Spring, I'm down to only one or two Migraines a month! Dr. Watson and I have been extending the period of time between Botox treatments to see what would happen, and it appears that the Spring is doing such a wonderful job of Migraine prevention that we may be able to discontinue the Botox. If you want to know more about the Spring, take a look at Spring TMS for Migraine - Progress and Insurance Update.

 

AHMA-is-hope250There's a lot going on in the Migraine community right now. Are you familiar with the American Headache and Migraine Association (AHMA)? AHMA is a nonprofit organization for patients with Migraine and other Headache disorders as well as their family members and friends. It was started for two main reasons:

  1. Patients who were looking for an organization where we can all come together - an organization run by patients, not staff or doctors.
  2. To address a valid question asked by a staff member of the National Institutes of Health. At a meeting of NIH personnel and Migraine and Headache researchers that I was invited to, an NIH staffer was talking about other diseases that get more NIH research funding and saying that a huge reason for that is that those diseases have patient organizations that work hard to raise awareness and also some research funding. The next thing she said to me was, "If your patients don't care, why should we?"

AHMA is still a fairly young organization, but it's growing. Right now, we're in the midst of election of officers, and our annual patient conference is coming up on June 12. Annual dues and conference registration are kept extremely low. Interested? Check out the AHMA web site.

 

NMAHM2016B250June will soon be upon us, and it's Migraine and Headache Awareness Month. This year's theme is Rule Your Headache Disorder.

We'll be having a social media challenge that's really easy to participate in via Facebook, Twitter, or a blog if you write one. I'll have more details for you on that soon.

Purple is our awareness color, so get out your purple, and wear it proudly.

If you have ideas for raising awareness, please share them. You can leave a comment on this post to share your ideas with the rest of us. Please remember that every little awareness effort counts. They all add up to something much bigger, and raising awareness reduces stigma.

 

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

Follow me on    or 
 

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4th Migraine and Headache Patient Conference - Why Are You Waiting?

2016Conf-325The date will soon be upon us for the American Headache and Migraine Association's (AHMA) fourth annual conference for patients, family members, and friends. This year's conference will be held on Sunday, June 12, in San Diego, California.

There are great sessions scheduled including:

  • What's New and Coming Up in Migraine and Headache Treatments
  • Living with Headache Disorders and the Psychological Fall-Out
  • The Future Role of Technology in Headache Medicine
  • Integrative Headache and Migraine Treatment
  • The Three Forms of Advocacy

The speakers for this year's conference include:

  • Dr. Elizabeth Seng
  • Dr. Richard Lipton
  • Dr. Rob Cowan
  • Dr. Brian McGeeney

There will also be a special session for family members and friends who need information and support for helping those they care about who are living with Migraine and other Headache disorders.

Morning and afternoon breaks and a reception at the end of the day will give you time to meet and get to know other conference attendees. Lunch is included in the registration fee, and the annual AHMA membership meeting will be conducted during lunch.

Frangance-Free-100

 

Since fragrances are such a strong trigger for so many people with Migraine, this is a fragrance-free event. Please do not wear perfume, cologne, aftershave, scented lotions, or other products with fragrance.

 

San Diego is a busy place in June. So, why are you waiting? Register for the conference and make your hotel reservations now!

For more information, or to register for the conference, please visit AHMA's conference page.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

Follow me on    or 
 

Page copy protected against web site content infringement by Copyscape© Teri Robert, 2016.

 

 

 


Happy Holidays to My Migraine and Headache Family

As my gift to the online Migraine and Headache Community, I've made two gift donations...

2013HilidayGiftCard2

If you'd like to know more about why I made these donations to the 36 Million Migraine Campaign and the American Headache and Migraine Association, check out my post on HealthCentral: 2013 Holiday Gift to the Online Migraine and Headache Community.

Whatever holidays you're celebrating, I wish you love, peace, and joy - and as much Migraine-free and Headache-free time as possible!

Live well,

PurpleRibbonTiny Teri1
 

Make a difference... Donate to the 36 Million Migraine Campaign!

 

Follow me on    or 

 

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© Teri Robert, 2013
Last updated December 24, 2013.