Sunday Thoughts on Living with Migraine: Choosing Civility & Kindness

Migraine-SignGood morning, and happy Sunday to my extended Migraine and Headache family.

Sorrowfully, this week's thoughts on living with Migraine aren't at all pleasant. In fact, they deal with a situation that made me not only extremely sad this past week, but physically ill. The various terrorism attacks around the world have  been really bothering me, as I'm sure they have all of you. The attack in Manchester last week had me crying every time I watched a news broadcast. For months now, another issue that I've found absolutely heartbreaking is the gratuitous public displays of people speaking so rudely and nastily to and about other people. People of power and authority — people who are role models — are employing name-calling and worse when speaking publicly. Instead of being leaders, they're sinking into the muck rather than speaking intelligently and in a manner befitting leaders. This horrible example is being emulated by others, either consciously or subconsciously. It's all been bad enough that I recently told my husband that if we were young newlyweds, I don't think I'd want to bring children into this world.

One way I've dealt with such sadness and grief has been to spend extra time with other Migraine and Headache patients, largely in closed Facebook group that's intended to be a safe place for all of us to share information and support without having to worry about spam and nastiness. I've also been spending some extra time on my own Facebook page, sharing links that I think will be of interest to my Facebook friends, both on Migraine and Headache, and on related issues such as health care.

Whether it's on my Facebook page or in the Migraine management group I own and manage, I don't expect people to always agree. It's not a black-and-white world. Besides, it would be horribly boring if everyone always agreed on everything. Disagreeing and discussing are just fine. That said, being rude and nasty are not fine — either on my Facebook page or in the Migraine Management group. People can disagree with each other and comment about that disagreement with civility and kindness. Whether one responds with civility and kindness or rudeness and nastiness is a choice people make when they write their comments and responses.

Last week, several people chose to respond with rudeness and nastiness both on my Facebook page and in the Migraine group. It was pretty quickly apparent in the Migraine group that part of the problem was members who commented about an article that was posted based on the title, without clicking through and reading the article. Even so, the rudeness and nastiness was an unnecessary choice.

In writing you to implore everyone to stop and think before they post comments and replies, and to choose civility and kindness over rudeness and nastiness. I'm convinced that the increase in this kind of posting is directly related to the increased rudeness and nastiness that we've observing publicly, especially in politics. Still, each of us has a choice in our behavior.

I said earlier that this had made me physically ill this week. It did, and that was enough to make me realize that I needed to do some serious stress management. One of the first things I learned in the college psychology classes I took is that only the person who owns a problem can solve it? I can't solve the problem of the way people talk to and about each other, but I can work toward solving how it impacts me. So, here's how I'm handling it. My Facebook page is just that — MY Facebook page. Any inappropriate comments posted there will be deleted, and the person who posted them will be blocked from my page. In our Migraine management Facebook group, rules have been posted about what is and is not appropriate behavior. Anyone who violates those rules will be removed from the group and banned from coming back. When it comes to the group, I owe that not only to myself, but also to the other members who count on it being a "safe" place.

Are any of you having problems with similar issues? If so, please feel free to comment and share your experiences and/or your suggestions for coping with them.

Live well,

 because a migraine is NOT "just a headache"
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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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Sunday Thoughts on Living with Migraine: Pre-Migraine Life

HappySundayBlossomsHappy Sunday to my extended Migraine and Headache Family. I hope the day and your heads are being as kind to you as possible.

I came across a sadly interesting conversation online last week. Someone asked if people remembered their pre-Migraine lives. The reason I say "sadly" is that so many of the people participating in the conversation are having problems with wanting their pre-Migraine lives back.

My Migraines began when I was so young that I really don't remember a time when Migraine wasn't part of my life. I do, however, remember before they became chronic the first time. Since then, I've gone back and forth between chronic and episodic Migraine because of preventive medications losing their effectiveness or having to reduce their dosage because of other health issues.

So, would I want my pre-chronic-Migraine life back? Certainly I would, but that's just not going to happen. There may be a cure for Migraine disease sometime in the future, but I don't think it will happen during my lifetime.

Why torture myself wishing for something I can't have? If I spent my time wishing to return to that part of my life, I wouldn't really live, would I? Here's the thing — It's one thing to wish for something we can attain. Wishes of that kind can be healthy aspirations that help us keep pushing forward. It's quite another thing to wish for something that can't happen. Wishes of that kind can lead to frustration and despair.

I mourned and grieved for my old life years ago. It's "normal" and healthy do grieve a part of life that we can't get back. What I want now is to get as much out of life as I can, to live it as fully and as well as I can.

MigraineNinja200Writing this post has brought me to realize, at least partially, why I recently started a new blog and site, www.Migraine.Ninja.

I'm drawing on my inner ninja to live the life I want. Migraine cost me my job and some relationships, but in the end, I gained a great deal as well. I have a job writing content about Migraine to help other people with Migraine. Many volunteer opportunities have come my way to advocate for myself and all of us with Migraine and other headache disorders. 

I've found a wonderful Migraine specialist to partner with. Right now, my Migraines are very well managed and back to episodic. There may come a time when my current treatment becomes less effective for me, but worrying about that now won't accomplish anything positive. It would just steal good days from me. So, I'll worry about that when it happens, but even then, I know my doctor and I will work together to find another effective treatment.

What about you? Are you stuck wishing to go back to your pre-Migraine life, or have you moved on to live your life as fully and well as you can?

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"
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Sunday Thoughts on Living with Migraine - Emotions

HappySundayBlossomsHappy Sunday to my extended Migraine and Headache Family!

Last week, I had an interesting conversation with a fellow Migraine Ninja who has been frustrated by how her moods and emotions are impacted by Migraine. This is a topic we've discussed several times recently. For her, the impact on her moods and emotions begin during the prodrome phase, a couple of days before the rest of the Migraine attack hits.

When we began our discussions, she had just put it together that her emotional swings were part of her prodrome. Her doctor had never mentioned the possibility to her, let alone explained why this can happen. When we have a Migraine, it can cause levels of neurotransmitters in the brain to fluctuate. We've known for some time that levels of serotonin and norepinephrine fluctuate. A study has now shown that our dopamine levels fluctuate also, and the drop in dopamine may be behind our need to retreat to a dark room and avoid stimulation.

My friend had shared with me that she finds herself feeling very anxious and cranky when the prodrome begins. Then she feels guilty for having been cranky with the people around her. That's a problem I can definitely relate to because one of my first signs that a Migraine is starting is crankiness. Bless my husband who will sometimes point out that I'm being cranky and ask if I'm getting a Migraine.

Once I realized that my crankiness can be part of the prodrome, I tried to figure out a way to handle it. When I notice it (or when John points it out to me), I employ meditation and deep breathing exercises. Then I play some of my favorite music. When we talked last week, my friend happily reported that she'd tried those counter measures, and they had helped her. They helped her to not feel as cranky, which also meant that she didn't have the guilt that went with being cranky with other people.

Another issue I've had is total panic during a Migraine attack. One night, I told John that I knew something was terribly wrong, and that I need to go to the emergency room. My doctor has prescribed rescue medications for me to use when my first-line meds fail, specifically so I don't have to go to the ER. John knew I hadn't used them, and that it hadn't been very long since I took my first-line meds. So, he asked me if it was the worst Migraine I've ever had. I told him it wasn't. He asked if my symptoms were new, unusual, or worse than usual. Again, no. By then, his questions had made me think, and I realized I needed to go to bed, not the ER.

Do your emotions sometimes run away with you during a Migraine? If you've found things that help you during these times, please leave a comment below, and share them with us.

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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Sunday Thoughts on Living with Migraine - Desperate and Vulnerable

HappySundayCloudHappy Sunday to my extended Migraine and Headache family!

Anyone who has lived with Migraine disease very long knows what I mean when I say that we can become desperate for relief and effective treatments. I've been there myself, and may well find myself back in that situation, so I know how it feels.

Many issues can crop up as a result of feeling so desperate. Perhaps one of the most potentially threatening is that feeling desperate can render us vulnerable. We can become oh so vulnerable to every quick fix, instant remedy, and cure pitch that comes at us.

We're living with Migraine — a genetic neurological disease for which, at this time, there is no cure. It's not that we haven't heard about the cure. There simply isn't one yet. Trust in this — If and when a cure is found, we'll all hear about it very quickly. Conspiracy theorists would have us believe that there is a cure, but it's being hidden by the pharmaceutical companies because they don't want their profits to drop. If someone had indeed found a cure, any journalist would jump at reporting about it and any conspiracies to hide it because it would be Pulitzer Prize material.

The same applies to all the claims or quick fixes and instant remedies. If they were legitimate, we'd have heard about them because major media would be reporting about them.

Then there are all the eBooks that so many spammers are trying to sell us. These spammers promise that their eBook holds THE secret to ridding ourselves of Migraine permanently, or managing our Migraines with breathing exercises, and so on. Once again, if that were true, the book would be a best-seller, and it would be in the news — big time!

What really matters here is not letting ourselves fall victim to these false claims. When someone approaches me with quick fix or cure claim, I have responses that I fall back on:

  • Show me the science!
  • Show me the peer-reviewed journal articles with the results of your double-blind, placebo-controlled clinical trials!

Spammers and scammers have no proof. "Testimonials" aren't to be trusted because they can be falsified all too easily.

The Internet is truly wonderful. It gives us access to more information than ever before. Unfortunately, it can be quite difficult to spot what's correct, and what isn't. We must not let spammers and scammers take advantage of how vulnerable we are when we're desperate for relief. Sadly, people must be falling for their claims, or they wouldn't continue to spam and scam. Remember the old axiom: If it sounds to good to be true, it probably is. When in doubt, we can always check with our doctors. In fact, we SHOULD check with our doctors before trying anything. Please, take care of yourselves, and give spammers and scammers the boot!

No-Cure-Cartoon-Bite-Me

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"
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Sunday Thoughts on Living with Migraine - Human Barometers

Happy-Sunday-CapGood morning, and happy Sunday to my extended Migraine and Headache family!

How many of you think the weather is out to get us? The temperature got up to 79° here in West Virginia on Friday. In the wee hours of Saturday morning, we were hit with two to three hours of thunderstorms. Then, the temperature got up to only 40° yesterday. What kind of weather is that? It's the kind of weather that's the perfect recipe for a Migraine for those of us for whom changes in barometric pressure are a trigger!

I've been crossing my fingers and feeling extremely grateful that the Spring TMS device, used preventively, spared me from a weather triggered Migraine over the last couple of weeks. At the same time, I've felt so awful for all of you who have been hit hard with Migraine attacks triggered by this quickly changing weather. I know how difficult those Migraines can be, and I know I'm bound to get hit hard sooner or later.

Looking back at how changeable the weather has been and ahead at the weather forecasts, it doesn't appear that we're going to get a break from the weather changes any time soon, so I've been making sure I have what I need on hand so I'm not caught unprepared. So, I thought some of you might find it helpful if I share my preparations so we can compare notes.

Here's what I've done to prepare:

  • made sure my Migraine attack pack is stoked with:
    • my favorite little pillow
    • my favorite cuddly blanket
    • tissues
    • peppermint Migraine smelling salts
    • peppermint Migraine roll-on
    • my iPod and its charging cable
    • my bluetooth speaker to use with the iPod (I love the music, but the allodynia that accompanies my Migraines makes earbuds or headphones very uncomfortable.)
    • an extra pair of warm socks because Migraines make my feet colder
  • set several natural peppermint tea K-cups beside our Keurig machine
  • set several Irish Breakfast Tea K-cups beside the Keurig for quick doses of caffeine
  • made sure there's Diet Dr. Pepper in the fridge
  • made sure there are crackers, canned soup, and comfort foods in the Migraine section of our kitchen pantry
  • charged my Spring device
  • put my Migraine abortive and rescue meds on the kitchen table where my husband and I can both grab them quickly
  • warned my husband that the weather from hell is continuing

Of course, I'm still hoping not to get smacked down with a Migraine from the barometric pressure changes, but it doesn't hurt to be prepared. Do you have suggestions to share? If so, please post a comment below!

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"

Visit MigraineDisease.com

 

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