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"
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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"
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"
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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

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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"
Visit MigraineDisease.com


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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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