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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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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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


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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"
Visit MigraineDisease.com


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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"

Visit MigraineDisease.com

 

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