Sunday Thoughts on Living with Migraine: Balance and Harmony

SundayThoughtsGood morning, and happy Sunday to my extended Migraine and Headache family!

The past week gave me much to think about as I spent time in several Migraine groups on Facebook. There was so very much going on, including:

  • Wonderfully constructive conversations about diagnoses, treatments, and awareness.
  • Great questions asked, then answered by community members who truly care about helping each other.
  • The sharing of links to some truly splendid articles and blog posts.

Unfortunately, there was also a downside to some of the activity, including:

  • A heart-wrenching post from a young man who has lived a long time with chronic Migraine, is losing hope, and is talking about giving up.
  • Some genuinely nasty comments from people who disagreed with what someone else had said, but seemed unable to be civil about it.

These last two items frustrated me for two main reasons:

  1. Hope is our best tool for living with Migraine and other headache disorders. It gives us the strength we need when our treatments aren't working, and the burden of our disease/disorder seems especially heavy. We must cling to that hope and share it with others. There are some ground-breaking treatments in development for Migraine and Cluster Headaches. With help so close, this is not the time to lose hope or give up.
  2. I simply don't understand the nastiness. It hurts not only those on the receiving end, but those being nasty. When someone is needlessly nasty toward others, I can't help but think that they're deeply unhappy people. 

It all comes down to balance and harmony...

We will always have both joy and sadness, pain and relief, hope and despair. That's a basic fact of live we can't change. What matters is how we deal with sadness, pain, and despair. And it matters a great deal how we treat other people along the way. Being nasty is a good way to end up isolated and alone. 

We need to seek balance and harmony. If there are times when we're in pain or despair, we need to exercise caution in how we interact with others. If we're interacting in writing, such as participating in Facebook groups, we need to reread what we've written before posting. If it's unkind, edit it, or just don't post until we feel better. During such times, it's also perfectly fine to post, explaining how we're feeling, and get support from others.

I'm an administrator or moderator for several Facebook groups for people with Migraine and other Headache disorders, and it's difficult. Last week, at the same time that I was trying to reach out to someone in real trouble, I was also dealing with people who were being so nasty to other people that I wanted to reach right through my computer monitor and smack them.

To those of you who manage to stay kind and helpful when you're in pain yourself, bless you! To those of you who post nasty comments to others, please stop and think. You're hurting both others AND yourself. Please look for balance and harmony.

Migraine-We-Can

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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

 

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Sunday Thoughts on Living with Migraine: I Need Your Advice

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

June will soon be upon us, and it's Migraine and Headache Awareness Month. As I've been making plans for Awareness Month, I've been thinking about what we did in previous years, and find myself a bit stumped. So, today, I'm turning to you for some advice.

Every year, several organizations and individual advocates devise Awareness Month activities hoping to engage as many Migraine and Headache patients as possible. The purpose of these activities is to raise awareness of Headache disorders in the general public and reduce the social stigma associated with them. These activities include:

  • printing an awareness sign, taking a picture of yourself with it, and posting it to social media
  • the sale of awareness month shirts and other items
  • daily prompts for writing blogs and posting to social media outlets such as Facebook and Twitter.

The problem is the low rate of participation in these activities, and this is where I turn to you for advice. Would you pretty please, with a cherry on top, either post a comment below or use the email button in the right column of this blog to share your thoughts with me? I'd love to hear your thoughts on why Awareness Month participation is low. Do we need different or additional activities? If so, what might they be? Do you have ideas about why participation is low?

I'd be remiss if I didn't take this opportunity to thank everyone who has participated in Awareness Month activities in previous years, so thank you! Together, maybe we can find ways to get more people involved this year and in the future.

Live well,

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

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Matt Harvey Owes People with Migraine an Apology

DiseaseNotExcuseIn case you haven't seen this news, New York Mets player Matt Harvey called in sick from Saturday's game, saying he couldn't play because he had a Migraine.

The events leading up to his calling in sick aren't totally clear, but what is clear is that he was out past curfew Friday night, drinking champagne, vodka, and tequila. Saturday morning, he was out playing golf. For missing Saturday's game, Harvey was suspended for three games, which cost him $84,016.

One report quotes a friend of Harvey's as saying that he did have a Migraine Saturday afternoon, but Harvey didn't mention having one when he publicly apologized for his behavior yesterday. Harvey apologized repeatedly and profusely to his team mates and to Mets fans.

Did Harvey have a Migraine Saturday? I don't know, but if he did, I have to wonder if it was triggered by the partying Friday night, a lack of sleep, and/or the golfing Saturday morning. What I do know is that Mets rules include a curfew the night before a game, and he definitely broke that. I also know that a responsible person with Migraine disease would have been at home getting plenty of rest Friday night and taking care of himself in order to avoid a Migraine and be prepared for the game.

While Harvey apologized to his team mates and Mets fans yesterday, he left out another group of people to whom he should have apologized — people living with Migraine. We live with more than enough social stigma and more than enough doubt when one of us needs to miss work because of a Migraine. Harvey's very public behavior reflects badly on all of us. It's a very public example of someone who used Migraine as an excuse.

Mr. Harvey, Migraine is a disease, NOT an excuse. You owe us a very big, very public apology.

To all of you reading this who have Twitter accounts, please tweet this post, use the hashtag #Migraine, and tag Mr. Harvey. His Twitter ID is @MattHarvey33.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"
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Enter the Frames of Mind Migraine Art Contest

Frames-of-MindThe American Migraine Foundation and Allergan are collaborating on an exciting new campaign that gives people with Migraine an outlet for their creativity that will be used to raise awareness about Migraine disease.

Frames of Mind is an interactive campaign to promote awareness of the impact that Migraine can have on patients' everyday lives. People living with this often debilitating condition are encouraged to submit original artwork depicting how the symptoms of migraine personally affect them.

Dr. David Dodick, Chairman of the American Migraine Foundation said,

"We are excited to collaborate with Allergan on this eye-opening campaign that we hope will unify the migraine community. While the symptoms of Migraine can occur in a myriad of unique ways, we hope to underscore the common needs of this community and empower patients to better manage their condition, advocate for access to care and appropriate treatment options, and inspire funding for research into the causes and better treatments for Migraine."

People living with Migraine are encouraged to create art submissions that visually depict how the various symptoms of Migraine affect them — both physically and emotionally. Digital, high resolution versions of the original works of art should then be submitted via email to FramesOfMind@toniclc.com, noting the artist's name, location, and contact information.

Select submissions chosen by notable migraine experts will be displayed at the 59th Annual Scientific Meeting of the American Headache Society from June 8 – June 11, 2017 at the Westin Boston Waterfront in Boston and other Migraine-related events throughout the remainder of 2017. Additionally, art submissions will be displayed on the My Chronic Migraine Facebook Page.

David Nicholson, Chief R&D Officer at Allergan, commented:

"Allergan is dedicated to supporting the millions of Americans living with the debilitating effects of Migraine and educating the public about this condition in order to encourage proper diagnosis and treatment. In addition to our focus on advancing research and treatment options, we are committed to offering education and support that will make a true difference in the lives of this patient community."

The timing of this campaign is perfect since the works of art will begin being displayed during Migraine and Headache Awareness Month.

Where does your artistic talent lie? Painting, sketching, sculpting, photography? Whatever talent you have, now's the time to use it to help promote Migraine awareness. Get your submissions in now to FramesOfMind@toniclc.com.

FramesofMind_callforEntries

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"
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Migraine, Spammers, and Twitter - Time to Act

Smiley-thumbs-downI follow the Twitter hashtag for Migraine — #Migraine — so I can keep up with news about Migraine disease, read interesting articles and blog posts, and offer my support to people that Tweet when they have a Migraine. Unfortunately, those of us who follow that hashtag are seeing more and more spam Tweets. The most annoying are those that Tweet links for a Migraine "cure." 

Some of these spammers only Tweet to try to sell us on their "cure." Others think they're being clever. They'll Tweet a few times to share facts about Migraine, then Tweet their "cure" Tweet.

Let's be very clear here. Migraine is a genetic neurological disease for which, at this time, there is NO CURE. Spammers and charlatans are Tweeting to get us to pay for eBooks, supplements, instructions for breathing exercises, and more. And here's a truly sad point — Some people are so very desperate for relief that they'll pay to try these so-called "cures." If these spammers weren't profiting from their Tweets, they'd stop.

Even if these spammers were willing to spend the money to advertise, laws about truth in advertising would block their way. But, they can continue with their misleading and predatory Tweets because Twitter doesn't stop them. There's one particular Migraine cure spammer on Twitter whose Tweets I have reported hundreds of times, to no avail.

I'm infuriated that these spammers continue to prey on my extended Migraine and Headache family, so I've decided to take action. I've set up a petition on Change.org addressed to Jack Dorsey (@jack), the CEO of Twitter, and Anthony Noto (@anthonynoto), the COO of Twitter.

Today, I'm asking everyone who reads this two do two things, each of which takes just a few seconds of your time:

  1. Please sign the petition. There's a box below to do that.
  2. Please share the link to this post or the link to the petition with everyone you can think of.
       
 

I hope you'll join me. It's going to take many, many signatures on the petition to get the attention of Twitter executives, and I can't get them by myself. Please, please, join me?

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Sunday Thoughts on Living with Migraine – Show Me the Science

Fall-SundayHappy Sunday to my extended Migraine and Headache family. I hope your heads are being kind to you today and that you're having as good a day as possible.

Yesterday, I published a review of an eBook that a friend had brought to my attention because the author claimed to have cured her Migraines and was offering advice to others as a possible cure for theirs. To her credit, she did say, "I can’t guarantee your migraines will be cured, because everyone’s migraines are different," but the claim of her cure was made. (See 5 Steps to Solving Your Migraine Mystery - A Review.)

Because of that review, I received a message on Facebook, asking me to review another book about Migraine. In that book, the author claims to have discovered the cause of Migraine. I don't put much stock in that statement because scientists have theories, but the best of them say that the cause is still not definitively identified or fully understood.

Over the years, so many people have told me that they have the cure for Migraine disease, that they've discovered the true cause, or made other claims such as having developed miraculous treatments. I couldn't even begin to count how many people have come to me with their claims or how many other claims I've come across because other people pointed them out or I came across them myself.

Medical-scienceSo, how do we determine what claims to consider and which ones to dismiss? This is where we need to employ simple logic. Some people would say, "Show me the money!" I say, "Show me the science!" I want to see science-based evidence if someone tells me they have an effective treatment. Testimonials aren't going to convince me. Nothing works for everyone, and the placebo rate in clinical trials is often around 30%. So, show me published data from a double-blind, placebo-controlled clinical trial that shows the treatment to be more effective than placebo.

Some of the people who have come to me with their claims have a second claim — a claim that the world doesn't know about their discovery because pharmaceutical companies are conspiring to keep their discoveries hidden to protect their profits. Some have even said that doctors who specialize in the treatment of Migraine and other Headache disorders are conspiring to keep their discoveries hidden because they would have any patients if the discoveries came to light.

Again, let's employ some basic logic. Let's just say there are conspiracies to keep these discoveries hidden. In today's world of communication, technology, and social media, it wouldn't work. There are any number of journalists who would jump at such a story — and a chance at a Pulitzer for reporting such a heinous conspiracy. The world would know in pretty much no time at all.

There are many possible motivations for someone to claim they have the cure to Migraine disease, and not all of them are villainous. Some people write that they've cured their own Migraines. Science says there's no cure yet for this genetic neurological disease. BUT, trigger identification and management can be very effective for some people. When you read some of these stories, you notice that many of them talk about a lot of lifestyle changes — avoiding certain foods, sleep patterns, proper hydration, etc. These all represent avoidable Migraine triggers. Thus, some people who offer their "cure" advice to other people may have eliminated their triggers to the point of having very, very few Migraines. They may truly believe they're "cured."

In any case, using logic and looking for the science can help us sort our way through many of the claims that are being made in the Migraine community.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

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