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"
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Sunday Thoughts on Living with Migraine: Time for Ourselves

HappySundayBlossomsHappy Sunday to my extended Migraine and Headache family, and happy Mother's Day to all the Moms!

Mother's Day brings to mind something that's important for all of us, whether we're mothers or not — Being sure to take time for ourselves. Regardless of everything else in our lives, we need time for ourselves to maintain our overall health, including our emotional and mental health. That's an undisputed fact that's become too often overlooked as our society has evolved and people become busier and busier.

As the internet and technology evolved, live has changed dramatically:

  • We used to wait for the newspaper or the noon and/or evening news broadcasts to catch up with the news.
  • We wrote letters or made phone calls to catch up with family members and friends.
  • We sat down once a month with our bank statements and bills to take care of financial matters.

No longer. The evolution occurred quickly: personal computers (desktop) ---> laptop computers ---> smart phones --->tablets. As each of these technologies were developed, news, communication, financial management, and more became more and more easily accessible. Mobile apps were developed for them with each app wanting to send us alerts and notices. Social media outlets, our banks, airlines, credit card companies all want to send us alerts for just about everything. My phone got to the point where I finally turned off the sounds for the alerts because there were so many of them coming so frequently that the phone was constantly dinging, beeping, chiming, or making some noise — even at night.

When I look at the statistics about how people access what I write, it's amazing. Here's last week's breakdown:

  • 59.54% mobile
  • 30.54% desktop
  • 9,92% tablet

All of this eats into the quiet time we might previously have had for ourselves. Have a family? A job? Volunteer activities? All of those can feed into the feeling that it's selfish to want time for ourselves. It's not selfish. It's necessary. If we're going to be and do our best for our family, jobs, and volunteer activities, we need time for ourselves to recharge so we can be at our best for everyone and everything in our lives.

BinxOfficeChair170503I've found that the best way to make sure I have some time for myself every day is to take time first thing in the morning. I fix my coffee and take it to my office. Once there, I take 30 minutes for prayer and meditation before starting my day. That helps me be more focused for the day and to get more accomplished. Lately, I've been taking some time most afternoons too because Binx, our new cat, is young, playful, and demanding of attention. Taking some time every afternoon to curl up and cuddle him has made for a good transition between my working hours and our evenings.

Whether you're a Mom or not, I hope you'll give some thought to how good it can be for us and everyone in our lives for us to have time for ourselves.

To all the Moms with and without Migraine...

MothersDay17

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"
Visit MigraineDisease.com


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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 - Driving

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

This week, I want to share an email I received and my thoughts about it. Here's part of the email:

"I read something you wrote on Facebook saying that nobody should drive with a migraine. Just who the hell died and left you in charge? I don't get an aura with my migraines so I'm just fine to drive thank you very much. I have a migraine 20 or more days a month. I have to drive to pick up my kids, get groceries, go to the pharmacy. If your migraines were as often and bad as mine, you'd sing a different tune..."

 

EmojiSinging-200So, for those of you who don't know, I've had periods of chronic Migraine during which I've had up to 30 days of Migraine in a month. I couldn't work, take care of our home, or do anything for my family. This isn't a contest, but I feel I should address that part of the email. And, I don't need to change my tune. It's just fine as it is.

The question of whether it's safe for us to drive when we have a Migraine is quite simple. No, it is not safe. It doesn't matter if we have visual aura symptoms. It doesn't matter if we're extremely sensitive to light. The quite simple fact is that a Migraine attack slows our reaction times, making it unsafe for us to drive. Period.

If we drive when we have a Migraine, endanger ourselves AND others. Some people may say that we have the right to take risks. That's debatable. Even if we say we have the right to take risks for ourselves, we do NOT have the right to risk the safety and very lives of others.

Maybe this needs to be put in very practical terms. A fellow Migraine patient shared her story about driving with a Migraine with me. She doesn't mind my sharing the story, but she does wish to remain anonymous. One day, she decided she just had to drive to the grocery store instead of waiting for her husband to get home. On the way back, she wasn't able to stop the car in time and hit another car. The car carried a man, a woman, and their daughter. The woman with the Migraine walked away from the crash. The people in the other car sustained injuries. Fortunately, they weren't very severe, and they were all discharged from the hospital in just a few days. The police cited the woman for the wreck. She paid a large fine and spent a few months in jail. Her problems were just starting. The family from the other car filed a civil suit for damages, and the jury awarded them a huge settlement. She and her husband lost everything, including their home. Her husband filed for divorce.

She said something to me that is so horrifically sad. She said, "I simply didn't believe what you said about not driving with a Migraine. I believed I was fine. It took losing everything — our home, our boat, our fancy cars, and my marriage to the love of my life — to make me listen. And now it's too late. My life might as well be over. The only thing I can be thankful for is that nobody died."

So, there you have it. Migraine specialists and researchers have told me that our response times are slowed. If that's not enough to convince you, please consider what happened to the woman who shared her experience. We absolutely should not drive when we have a Migraine.

Live well,

PurpleRibbonTiny Teri1

 

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

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

Migraine is one of the hottest topics online, especially in social media. There are myriad Facebook pages and groups about Migraine, and #Migraine is the #1 disease hashtag on Twitter.

Unfortunately, many people who use Facebook and Twitter to find Migraine information and support are missing out. They're missing out because they read only the headline, and don't click through to the information provided.

There's only so much that can be conveyed in a title, headline, or a Tweet, so there's often not much context. Therein lies the problem. If we read only the title, and don't click the link to read the actual content, we may:

  • miss the point entirely,
  • totally misinterpret what the piece is about,
  • ask questions that were answered in the piece.

It's not unusual for me to see a link on Facebook or Twitter and think I know what the piece is about, only to find I'm totally off-target when I click the link. Especially on my Facebook page, I notice other people falling into the same little trap. Quite often, when I post a link to an article I've written, some of the comments show that people are commenting only from reading the title. It's obvious for any number of reasons:

  • The person may be upset with me because they totally misunderstood what I was saying because they only read the title.
  • The comments may be roughly on a relevant issue, but not really related at all to the article.
  • The comments contain questions that were answered in the article.

 

WinkyLashes-500I don't know how many times I've leaned back in my chair and said, "Well, duh!" because I clicked a Facebook or Twitter link, and once I got to the piece of content felt silly because the topic was so obvious AFTER I clicked the link.

Does this happen to you too? Some days, I choose to blame it on "Migraine brain." Other days, I blame in on age. Still other days, I just chalk it up to a blond moment. I really think part of my problem is that, like many other people today, I've become accustomed to instant gratification - having information instantly available. Perhaps it's that and a bit of laziness that have brought me to make incorrect assumptions about content because I read only the title.

In any case, I've put a sticky note on my monitor. On that sticky note, I wrote, "Click the link!"

Live well,

PurpleRibbonTiny Teri1

 

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


MigraineNinja200Visit Migraine.ninja

 

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