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"
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5 Steps to Solving Your Migraine Mystery - A Review

5-Steps-0-StarsYesterday, a friend brought my attention to a Tweet about a "Real Migraine Cure." Here's a screenshot of it:

Real-Migraine-Cure-Tweet

One of the problems with self-publishing is that anyone can publish anything they want without any checks and balances. In self-publishing, there's no publishing house, editor, fact checker, or anyone else to hold people accountable. Still, there are some self-published books and eBooks that are worth a read. Even when the titles are overblown, sometimes there are tidbits of decent information in them.

So, I followed the link and downloaded 5 Steps to Solving Your Migraine Mystery by Dawn Gregory and started reading it. I'm sorry to say that I found no redeeming sections in this book. The outrageous statements made about "curing" Migraine disease far outweighed everything else in the eBook.

Here are some of the most egregious statements in this eBook:

  • Kick your drug habit: If you are one of the lucky few who have finally found a medication that manages your migraines, giving it up is going to seem nearly impossible. But if you want to fully restore your health, you are going to have to do it eventually.
  • Medication is a poison.
  • It is your choice, but you will never be truly healthy while you are using medication. That’s not a conjecture, it’s a definition. Healthy people don’t need medication.
  • Curing migraines is possible, if you are pro-­active, knowledgeable, and determined to make it happen.

Gregory does say, "I can’t guarantee your migraines will be cured, because everyone’s migraines are different," but even that statement isn't redeeming. At this time, there simply is no cure for Migraine disease. That's what evidence-based science tells us, and I put my trust in evidence-based science.

Would you love to solve your Migraine mystery? Would you love to cure your Migraines and be rid of Migraine disease? I certainly would! But we live in the real world where Migraine is a genetic neurological disease for which there is no cure yet. Consider this — Based on today's statistics at www.census.gov, nearly 41 million people have Migraine just in the United States. Migraine is a leading cause of disability, lowered quality of live, lost productivity, and more. If someone had a true cure for Migraine, it would be in headlines all over the world, and the person who discovered it would be receiving a Nobel prize for Medicine.

In the biography on her web site, Gregory says that she had Migraines for 18 years and "created the Real Migraine Cure to share what I’ve learned about migraines and help you cure your migraines once and for all." At the same time, she has a blog where she continues to blog about topics including new Migraine treatments in development. She also provides links to web sites and blogs, including this one. All in all, I don't understand her insistence that Migraine can be cured. Nor do I understand making the blanket statement, "Medication is poison."

This eBook was free, but she does have a Migraine book for sale on Amazon. In any case, she doesn't seem to be trying to make a big profit from the suffering of others as some people do. Perhaps she's just misguided. As far as 5 Steps to Solving Your Migraine Mystery goes, however, I must give it 0 out of 5 stars. It's just not worth reading. In fact, it has the potential to add to the social stigma of Migraine because of its incorrect claims of a possible cure.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

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wikiHow Article on How to Fake A Migraine Insulting and Disgusting

StigmaPuzzleThose of us who live with Migraine and other headache disorders do our best to live in our society, something that's often beyond difficult. We live in a society where these disorders are pathetically misunderstood and we face social stigma that leaves some of us often distraught, angry, and hurt.

People tend to fear what they don't understand, and that fear manifests in ridicule, discrimination, ostracism, and other hurtful and harmful attitudes and behaviors.

Friday (August 15, 2014), a friend posted a link on my Facebook page. Maybe you can imagine my horror at the title: "How to Fake a Migraine Successfully." The article was published on wikiHow.com, and it was spelled out in "8 easy steps," complete with photos.

I went to the site and read both the article and their terms of use document. The article was clearly in violation of their terms of use and met their criteria to be "nominated for deletion" under three categories:

  1. It failed to meet the wikiHow character article standards
  2. The topic was a joke. Their document says, "Don't use on achievable topics that happen to be funny."
  3. It was also mean-spirited.

I followed their procedures for attempting to handle it. In fact, I tried over and over and over again. Every time I'd put in the codes for nomination for deletion and add comments about it being a bad idea, someone (I'd assumer one of the original so-called authors) came back and put the same insulting tripe back.

One wikiHow staff member did email me about my "concerns" and tried to be helpful. Unfortunately, his ability to be helpful is limited by the site's asinine rules and processes. Evidently, they have no guidelines or policies that let staff simply delete potentially harmful content. There's a long process that culminates in the "community" VOTING on whether to delete it or not. WHAT?! That's ridiculous beyond any rationality.

Has the moral and ethical fabric of our society gone totally to hell? If this article and wikiHow's anemic response to the complaints about it are any indication, the answer to that is a resounding and horrifying, "Yes."

I must give credit to some of the administrators on wikiHow today though. On the article page today, the original content does not show. The page contains a note that the page has been nominated for deletion along with a couple of paragraphs about faking being ill and that it's not a good thing to do. Hopefully, this whole episode will end with the article being deleted and wikiHow rethinking all of the similar articles on their site.

It's perhaps understandable that some people wonder, "What's the big deal?" Here are some points that I and other members of the online Migraine community offer:

  • Migraine is a potentially debilitating and disabling neurological disease. Diseases are not amusing. How would people have reacted if the article had been about faking a heart attack, cancer, multiple sclerosis, leukemia, Parkinson's, or other diseases?
  • Too many Migraineurs are already being accused of faking Migraines to miss work, school, and other activities. An article on how to do it would only serve to make people think we really do this. Such an article would have no value. It would only serve to perpetuate the stereotype and increase the stigma associated with Migraine.
  • Research has shown that the stigma associated with Migraine increases the burden of the disease. It make it even more difficult for us to live with it.
  • The old saying, "Sticks and stones may break my bones, but words will never hurt me," is a bunch of nonsense. Words can indeed hurt, terribly. They can indeed cause harm. Words can stigmatize.
  • Migraineurs need help, support, and understanding. There have been several suicides in the online Migraine community over the last year, including a 14-year-old boy. Feeling hopeless and stigmatized helped lead to those losses. We must find a way to turn this around.

There is so much more I could say here, but I've made my point. If you want to see the text from the wikiHow article as it was before the editing wars started, you can download this PDF file. The wikiHow admins have changed the title, but if you want to see how the article appears now, you can follow this link. If you wish to comment on the article, follow the discussion link that appears above the article. Calm, rational comments may help as wikiHow decides whether to permanently delete the article and other similar articles.

In closing, I wish all of you well and would like to share something positive with you...

Change the world

Live well,

PurpleRibbonTiny Teri1
 

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

 

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© Teri Robert, 2014
Last updated August 17, 2014.

 


Migraine and Stigma - Migraine Gems

MigGem166Say the word "Migraine" to a group of people, and you'll get two disparate reactions. From those with Migraine, you'll get cringes of understanding. From those who have never experienced Migraine, you're likely to get eye rolling and people making comments that show them to be totally clueless. This demonstrates, unfortunately, that we live in a society where there is still stigma attached to Migraine.

Predictably, research has shown that the stigma associated with Migraine worsens the burden of living with the disease. To read more about the research and for links to two podcasts with researchers who investigated Migraine and stigma, take a look at Stigma Worsens Burden of Migraine.

While we're on the topic of stigma and Migraine, I have to share with you the best video on the topic that I've ever seen...

Live well,

PurpleRibbonTiny Teri1
 


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© Teri Robert, 2013
Last updated June 12, 2013.



Migraine Awareness Month 26: "From The Outside Looking In"

AwarenessMonth2012BC2Good morning, and welcome to day 26 of National Migraine Awareness Month!

Today's prompt for the Awareness Month blog challenge is:

Migraine Awareness Month #26: "From The Outside Looking In."
Write about what you think your family, friends and others think a day in life, a day with Migraine disease is like.

From the outside looking in...

Most of my family and friends are only vaguely aware of my job as a patient educator and advocate.  It might surprise you to know that the majority of them don’t even know where I work other than ‘online’. 

I have never asked them what they think my days are like, but they occasionally give me a little insight with the things they say.

Sadly, some of my friends think that I spend all day long visiting Dr Google, obsessing over my health conditions.  In reality this couldn’t be further from the truth.  Most of my time is spent either writing, or helping other patients online.  Most of these people think that spending time online must make me feel worse, when in reality the opposite is true.  Helping others gives me purpose and keeps me concentrating on everything but my pain, so I can often be found even working while in bed in the dark, iPad on my lap.  I stop for the day only when a Migraine is completely out of control. 

A few relatives think I waste my time each day in front of a television eating bonbons.  I wouldn’t know a bonbon if it stood up and introduced itself to me.  Although a radio or the television is often on for background noise to drown out my tinnitus (ringing ears) I rarely watch TV unless I happen to be passing through the room at an especially interesting time.  I average approximately 12 hrs a day working as an educator/advocate.  It’s true that part of this time is my job.  However, the vast majority of it is volunteer.  Patients are my priority.  Even with those numbers, I still feel that I let some patients down because there just aren’t enough hours in the day.  I do my best and hope they see that.

A few friends and relatives think I waste my time on useless or frivolous sights such as Facebook and they see no purpose in it.  The reality is that I visit many online social media platforms, participating in too many of them to really count.  Sometimes I ask questions myself because I am always learning, but usually my time is spent helping others who are asking questions or looking for support.  I also keep in touch with other patients through these social media platforms, and we are often found sharing prayer requests and comfort for each other.  Hardly a waste of time in my book. 

I take my meds when I’m supposed to.  I distract myself from my pain every day.  I take out a little time each day to concentrate on things that cause me to pause with wonder and smile.  I enjoy the time I spend with my dogs and cat, and although my heart aches for the interaction, I enjoy watching the daily activities of the horses that surround my home.  I plan to go somewhere at least once a week because this makes me feel like my life is a little more regular.  I struggle to be as normal as I possibly can, with a very *not normal* situation. 

It’s my fault that my family and friends aren’t more aware of how I spend my days as a Migraineur because I could just talk about what I do and how I spend my time, but nobody is asking questions and I don’t feel the need to sit them down and bore them with the details.  I think they don’t ask questions because the reality is that they don’t want to know the answers.  They know I live in pain and that makes them feel uncomfortable.  They don’t know how to talk to me anymore.  Mostly, they are uninterested and busy with their own lives.  That happens with all of us from time to time.

My hubs and kids know how I spend my time because they live (or used to) with me each day.  My kids are Migraineurs too, so they understand from that perspective.  My world became very small when I got sick and that’s okay.  It’s okay that they are the only ones who “get me”  because they are the ones who matter most.  And the most important part of this equation is I am blessed that they DO understand and know me, and I am not alone.

 

~Ellen


Migraine Awareness Month 15: We're Like Pennies

AwarenessMonth2012BC2Good afternoon, and welcome to day 15 of National Migraine Awareness Month!

Today's prompt for the Migraine Awareness Month blog challenge is:

Migraine Awareness Month #15: Free Blog!
Blog on a Migraine related topic of your choice.

I like this one! My topic will seem a bit strange to you at first, so please bear with me...

I want to talk about how people are like pennies. Yes, pennies.

See, I told you it would seem a bit strange. Allow me to explain...

I spent about 10 years after my divorce living single, alone, and working a job that didn't pay all that well, and no health insurance. One of my biggest frustrations was that I love, love, love to give presents, especially at Christmas, but there wasn't a lot of money during that period of time. What I decided to do was keep a big jar in my closet, and when I came in every evening, take the change out of my purse and put it in the jar. No matter what happened, I never touched that change until time for Christmas shopping. I was always truly amazed at how much a few cents here and a few cents there added up to.

Are you starting to see where I'm going? People and advocacy efforts are much like pennies in a jar. It's all cumulative. Every person one of us can educate about Migraine disease is one less person out there who "doesn't get it," who thinks Migraines are "just bad headaches," who gives us a hard time at work or doesn't understand why the chronic Migraineur next door hasn't left their house for six months, who feeds the stigma associated with Migraine. One less. And one more who can help spread the word. One more. And just like that change in my jar, it's amazing how quickly all of those people can add up.

AwarenessMonthContest166So, here's the question - How do we do that? How does that chronic Migraineur I just referred to who hasn't been able to leave her or his house for the last six months do that?

If we use our imaginations and creativity, we CAN answer that question. One of my goals for Migraine Awareness Month is go put together a list of some ways individuals can help raise awareness even if they're not well, ways that cost little or nothing. To do that, I'm having a contest on the HealthCentral Migraine community site. One of our readers there has already give us a great suggestion that I'll share with you here as an example of what I'm looking for:

How about changing our phone answering messages to include something brief and upbeat about June being Migraine Awareness Month? Something like,

"Hi, this is MJ, I'm out spreading the news that June is Migraine Awareness Month, but I'll get back to you soon, so leave me a message!"

Or, "Hi, this is MJ. It's June 14 and I'm inviting you to wear a purple ribbon along with me in support Migraine Awareness Month. Leave me a message!"

AwarenessContestPrizesTo enter the contest for a chance to win the prize package on the right, go to Enter Our Migraine Awareness Month Contest!

Live well,

PurpleRibbonTiny
 

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© Teri Robert, 2012
Last updated June 15, 2012.


Migraine Congressional Hearing - Answers to Your Questions

WhySign

For a while now, I've been asking you to sign the Alliance for Headache Disorders Advocacy's petition urging Congress to hold hearings on the impact of Migraine and other headache disorders.

The response has been... well, underwhelming at best. It occurs to me that perhaps I haven't done a very good job of explaining what a Congressional hearing could do for everyone with Migraine or another headache disorder and some other issues about the petition.

So, today, that's what I want to do - Explain some things about the petition, what it could accomplish, and why it's urgent that we get as many signatures on it as possible. To do that, I've reviewed some of the questions about the hearing and the petition and created a FAQ of sorts:

Question: "But Snopes.com and others say online petitions are bogus!"

Answer: Actually, Snopes doesn't say that. In reality, some online petitions are worthless, and some are scams.

This particular petition is legitimate and legal. In addition, it doesn't stop online. Advocates for the AHDA will be hand delivering it to members of Congress during our Headache on the Hill event on March 27, 2012.

Question: Why should we want Congress to hold a hearing about the impact of Migraine disease and other headache disorders?

Answer: Whether we look at the general public or at members of Congress specifically, Migraine and other headache disorders are still terribly misunderstood and surrounded by myths and stigma. At a hearing, patients, advocates, and health care professionals would have the opportunity to testify before a Congressional committee. These "witnesses" would share factual data such as statistics and share comments and stories that have been shared through the current AHDA petition. But more than that, some of these witnesses would be patients who would testify about what Migraine and other headache disorders have done to their lives and the lives of their families.

Question: What would a better understanding in Congress accomplish?

Answer: Short-term, a better understanding in Congress must be accomplished before we'll see any significant increase in federal funding for Migraine and headache research funding.

We depend on pharmaceutical companies to develop new medications. The problem with that when it comes to Migraine and headache medications is the difficulty with developing medications for diseases and conditions when scientists don't yet understand them well. Pharmaceutical companies develop medications. They don't do the kind of basic disease research that's yet to be done into the cause and pathophysiology of Migraine and other headache disorders.

Longer-term, increased research funding can lead to better treatments. At this time, there are no treatments on the market that were originally developed for the prevention of Migraine and headache. This must change.

Also, we would hope that a better understanding in Congress would help lead to a better understanding among federal agencies and the general public, including employers.

Question/Comment: "I'm busy and don't have time for this."

Answer: Everyone has time for this. It's a simple matter of following the link then entering your name, address, and email address. It can be done in one minute, literally.

Question: What's done with my personal information I enter when I sign the petition?

Answer: It goes into a database on a secure server. Only two officers of the AHDA have access to that information. Each Congressional office will receive a list of only the people in their districts who signed the petition. For Senators, of course, that will mean the whole state. For members of the house, that will mean only their own Congressional district.

We NEVER share or sell our data or our mailing list, not even with the organizations that are members of the AHDA. We may email you in the future when there's action to be taken, but that is the only email you will receive as a result of signing the petition. We take your privacy very seriously, as seriously as we take our own.

Question/Comment: But the country is already in a financial mess!

Answer: We realize that. At this point, we're asking for a Congressional hearing. Do we also want an increase in research funding? Certainly, we do, and we absolutely understand. But please hear me on this. At this point in time, when it comes to federal funding for medical research, there is no correlation between the amount of funding and disease burden. By disease burden, I don't just mean the number of people who have a disease or condition. I mean the total burden of it -- how many people it affects, how severely it impacts people, the economic cost of the disease, the social cost of the disease, and more.  In previous years, when we've gone to Congress asking for increased research funding, we've also talked to them about there needing to be a better correlation between funding and disease burden so that the federal funding for research is allocated in a manner that is most beneficial.

Question: Who can and should sign the petition. Do you have to have Migraines or headaches? Do you have to live in the U.S.?

Answer: We'd love to see as many signatures of U.S. citizens over the age of 18 as possible. No, you don't have to have Migraines or headaches. Yes, you do need to be a U.S. citizen. If you're not a U.S. citizen, you can still help by sharing the link with your family and friends in the U.S. and asking them to sign the petition.

I hope this post answers any questions you may have about this petition. This issue and petition are vitally important to so many people.

If you haven't signed the petition, please take just a minute to sign it now...

Sign the Petition.

If you've already signed it, please share the link with your family and friends and ask them to sign it. If you have a Facebook page, please share the petition or his blog post on your Facebook page. Tweet about it, please?

Live well,


 

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© Teri Robert, 2012
Last updated March 14, 2012.


Living with Migraines - Thoughts on a Sunday

ThoughtsSunday2

It's been a tough week in the Migraine and headache community, and that's really an understatement. Everywhere I turn, people are suffering, physically and emotionally.

The weather seems to have a personality disorder - it can't decide if it's winter or spring. That's triggering Migraines for many of us. Cluster sufferers are having a tough time too.

There was a suicide in the community last week. I don't know if I'm more sad or angry about it. I'm sad for the woman who took her life, but I'm so angry at her ex-husband that he should be glad he'll never have to face me. He's one of those not-a-freakin-clue jerks who is so selfish that he divorced her over her Migraines. If I had my way, he'd meet the fate that servants used to face in ancient Egypt and be buried with her. The stigma of Migraine stuck again.

OK, taking some deep breaths here. A friend of mine, Mary Seroski, sent me a link to a YouTube video that I just have to share with you. It's undoubtedly the most beautiful video I've ever seen. I watched it and marveled at the beauty of it and of all of God's gifts it depicts. It gave me hope. I hope it will do the same for you...

Live well,


 

Puz-only-btn
Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2012
Last updated February 26, 2012.