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"

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Sunday Thoughts on Living with Migraine - Your Valentine

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

Tuesday is Valentine's Day, and many of us have been making plans to show our appreciation for our Valentines. I want to take a few minutes to suggest that we each need to remember to also be our own Valentine. Yes, I realize that sounds a bit strange, but allow me to explain.

Valentine's Day is a holiday I always want to be very special for my husband. When we married, I promised myself that I'd never take him for granted or fail to let him know how much I love and appreciate him. Over the 31 years we've been married, he's been very supportive of my struggles with migraine disease and other health issues. He's never once complained or even seemed disappointed when I've had to cancel plans. He truly sees it as a gift when I'm feeling well, smiling, and feeling up to teasing him. He's told me that he'd rather have me feeling well than to receive a material gift or a special holiday celebration.

AirKiss-468899678So, one of the best Valentine's Day gifts I can give my husband is doing all I can to take care of myself and improve the odds that I'll be feeling well. In essence, I need to treat myself as my own Valentine. See what I mean?

Here are some things we can employ to work toward a happy Valentine's Day:

  • Plan ahead.
  • If food triggers are a problem, consider a celebratory dinner at home, where you can control what's served.
  • Remember if your Valentine is a good Valentine, he or she is more interested in you than in gifts, going out, etc.

We should do our best to take care of ourselves all the time. I've found that once self-care becomes a habit, it really can make a significant difference in our health. Please take a look at Recognizing and Meeting Migraine Self-Care Priorities.

Here's hoping that everyone has as great a
Valentine's Day as possible!

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Sunday Thoughts on Living with Migraine - Kindness, Please

Happy-Sunday-CoffeeGood morning, and happy Sunday to my Migraine and Headache Family!

Last week was interesting, but not altogether pleasant. On HealthCentral, I published an article about a unique virtual study to look at the impact of activity on Migraine. Once the article was published, I posted it on my Facebook timeline. To see if you're eligible for the study, you install an app on your iPhone, answer some questions, then wait for an email. Some people let me know that they hadn't received an email. Although I'm not involved in the study, I reached out to someone I knew could get answers. It turned out that some people's email services were "seeing" those emails as spam and not delivering them.

It took less than 24 hours to get that answer, but one woman who was commenting on my Facebook page seemed to not have the patience to wait for me to get a reply. She began making truly nasty comments on my page. Nothing I or two other people said to her calmed her. I don't know if she wasn't feeling well, or what else may have caused her to be so angry, but I deleted her unpleasant remarks and accusations from my Facebook page. She then took to Facebook Messenger to berate me about the issue. When she got to profane name-calling, I was through. I urged her to get help and promised to pray for her.

As I sit and reflect upon the incident, I think of the post I wrote here a couple of weeks ago about being kind. I simply don't understand people who can be so nasty to other people as that woman on Facebook was to me. I wasn't responsible for any issues with applying for the study, but I was working to get an answer for people. I don't understand why she went off on me. Why did she feel justified in calling me a "whore" and other names that I can't repeat here? Where was her sense of decency? Where was her kindness for others? Doesn't she understand that I was trying to help... that I'm a Migraine patient with health issues of my own? I have to admit that it can be difficult to not let experiences such as this erode my sympathy, compassion, and empathy for my fellow Migraineurs. It's not easy to brush it off and continue to be open and available when others need help when one of them treated me so unkindly.

I came across a recent article that talked about how being kind benefits the person being kind as much as it does the recipient of said kindness. Researchers at the University of British Columbia reported that random acts of kindness can help lessen anxiety. Their study involved having people diagnosed with anxiety perform six random acts of kindness weekly for four weeks. Those acts of kindness helped them be less prone to social avoidance and improved their relationship satisfaction.

Being kind and empathetic increases production of oxytocin, a hormone released by the pituitary gland that some have called the "cuddle hormone." Research shows that people have more negative thoughts about their lives during stressful times, BUT when they're kind to others during those times, they don't have those negative feelings. A series of experiments at the Harvard Business School revealed that people who do things for others have higher levels of happiness.

All of that said, I realize that Migraine attacks can wreak havoc on our emotions because of the fluctuations of neurotransmitters that occur during a Migraine. Trust me, having had Migraines for 56 years now, I know how that feels. Still, I refuse to use that as an excuse for being unkind and nasty. When I have a Migraine, I'm very careful to either respond to people appropriately or wait to respond to them until I don't have a Migraine messing with my emotions. I know that I can be very cranky during a Migraine, and it's wrong to take it out on others.

All in all, kindness benefits both the giver and the recipient. It's definitely the way to go!

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Sunday Thoughts on Living with Migraine - Being Kind

WinterSundayMigraine disease can make us feel very alone and isolated. That's one reason there are so many Migraine groups on Facebook and one reason why #Migraine is often the most Tweeted hashtag. We seek information, we seek support. We look for somewhere we belong despite this disease that so often makes us feel separated from other people.

I'm a member of quite a few Migraine groups on Facebook, and I manage a couple of them. I also talk with administrators of other Migraine groups, and we've been struggling with managing our groups. There are two main problems:

  1. Spammers. People who tell us they have Migraines and they want to join our groups for information and support. These groups have rules against spamming - trying to sell group members products or services. Yet, these spammers, once we let them into our groups, very quickly post links to sell things.
  2. People being just plain nasty in their comments to other group members. It's fine to disagree with something someone posts. It is, in fact, inevitable that people aren't going to agree with everything posted by others. That shouldn't be a problem, but it becomes a problem when people get rude and nasty. It's simply not necessary.

Spammers are a huge problem on Twitter too. I've seen days when spam Tweets outnumbered legitimate Tweets for hours at a time. Some promise a "cure" for Migraine disease, something that isn't yet possible. Others are selling crystals and other things on eBay, still others have nothing to do with Migraine, yet they use the #Migraine hashtag. Last week, there were a couple of days when women were doing that to promote their nude photo web sites.

Twitter also has its share of nastiness. A couple of weeks ago, someone Tweeted a link to a web site to me. She was trying to interest me in having surgery for my Migraines. When I wasn't interested, she said that I didn't want help, that I only "wanted pills," and some other pretty nasty things. She then said she didn't know anything about me. Even though she was being nasty, that made me laugh and shake my head. My Migraines are very well managed right now with the FDA approved Spring TMS device. I explained to her that I'm having only one or two Migraines a month, and that the Spring aborts about 85% of them. Why on earth would I want to have a surgery at all, let alone surgery for which there isn't any double-blind, placebo-controlled clinical data to support? The discussion got nasty enough that I blocked her on Twitter.

My point is that there's enough nastiness in the world without Migraineurs being nasty and rude to each other. We should be sticking together. We should be kind to each other. The fluctuation of neurotransmitters that occurs during a Migraine can definitely affect our moods and make us cranky. We need to be aware of that and either take it into account when commenting to other people, or wait until we feel better. Even if we're commenting to disagree with something someone said, it can be said in a kind and respectful manner. People who want to sell things should do so in places where it's allowed, not in places where it's prohibited. Anyone selling something needs to be honest and not claim to have a "cure" for Migraine. These people need to stop preying on people who are so desperate for relief that they'll try just about anything. They need to get a real job and be kind to others by not preying on them.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Migraine and The Year of Conquering Negative Thinking

Worth-a-lookEarlier this week, I wrote about living with Migraine and being positive in 2017. Fortuitously, I came across a wonderful article from The New York Times this afternoon. Here's a brief excerpt:

Here’s a New Year’s challenge for the mind: Make this the year that you quiet all those negative thoughts swirling around your brain.

All humans have a tendency to be a bit more like Eeyore than Tigger, to ruminate more on bad experiences than positive ones. It’s an evolutionary adaptation that helps us avoid danger and react quickly in a crisis.

But constant negativity can also get in the way of happiness, add to our stress and worry level and ultimately damage our health. And some people are more prone to negative thinking than others...

“We were built to overlearn from negative experiences, but under learn from positive ones,” said Rick Hanson, a psychologist and senior fellow at the Greater Good Science Center at the University of California, Berkeley.

But with practice you can learn to disrupt and tame negative cycles.

Please take a few minutes to read the full article via www.nytimes.com

There is great power in how we think. Thinking positively or negatively can shape every area of our lives, making things better or worse.

Yes, we still need more research to fully understand Migraine; and, yes, we need better treatments. The good news is that there are four Migraine medications in clinical trials now that look very promising. These medications will bring an enormous positive change to the treatment of Migraine. In the meantime, we can help ourselves tremendously by remaining hopeful and positive.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Favorite Books for Folks with Migraine - Chronic Christmas

ChronicChristmasI must confess that I'm a bibliophile who voraciously reads books on many subjects including Migraine disease and other health issues. There are many reasons I love books. I read to learn, for inspiration, to relax and escape a bit, and more.

Recently, I read Chronic Christmas, written by Lene Andersen, a friend and colleague. I admit that I'd read anything Lene writes, BUT I wouldn't be telling you about this book if I didn't truly believe it to be a good one for your library. I can't describe it any better than the description that's on Amazon.com, so here's their description:

"Chronic Christmas is an Advent calendar full of self-care tips to help people with chronic illness savor the holiday season as never before. Author Lene Andersen has lived with rheumatoid arthritis for most of her life and is a health advocate and writer. Using her distinctive conversational style infused with warmth and humor, she has crafted a unique guide to an enjoyable Christmas season. Each Advent entry will enable the person with a chronic illness and their friends and family to connect in ways both effortless and fun. Chronic Christmas is guaranteed to help you relax and save your time and energy for what is truly important. The book also includes a few surprises along the way!"

One of my criteria for a great nonfiction book is that author does their research and truly knows their topic. Lene definitely knows her topic. She has lived with rheumatoid arthritis since she was four-years-old. RA hasn't stopped Lene. She's a very talented woman and an excellent and compassionate writer. To learn more about Lene, check out her story in Living with Rheumatoid Arthritis.

One of the best features of Chronic Christmas is that each day's entry also contains tips for helping someone with a chronic illness. That makes it not only a superlative book for those of us living with a chronic condition, but also for anyone who cares about us.

Chronic Christmas is available in both paperback and Kindle formats on Amazon. That's another great feature of the book — The Kindle format is so flexible that it can easily be gifted to anyone who likes to read books in electronic format because you do NOT need a Kindle to read it. With Amazon's free Kindle app it can be read on computers, laptops, and mobile devices of all kinds.

Review_stars_5Whether you're shopping for a gift, or looking for a book for yourself, Chronic Christmas is a perfect choice. Whether you're living with Migraine, RA, or another chronic condition, it fits your life. It's one of the best books I've read in quite some time, and I give it a full five stars!

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

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