Putting Our Heads Together

Living with Migraines - Thoughts on a Sunday

It seems to be a recent trend for a Migraine to be kicking my backside on Sundays. Maybe it's just that it's been a trend for the weather to be changing on Sundays lately, and my doctor and I are still waiting to see if the change we've made to my treatment regimen is going to be the right one to reduce my Migraine frequency. In any case, I hope your head is being kinder to you today than mine is to me.

Last week was a busy week with several opportunities to talk with other Migraineurs who are working hard to get their Migraines better managed and some who are entering into the advocacy arena, some in new and creative ways.

Kelly, who writes the blog Fly With Hope, has started a magnificent new project - Project Migraine Hope. Here's a snipped from her description of Project Migraine Hope:

"Project Migraine Hope is a community of videos where individuals who have Migraines (chronic or episodic) and loved ones/caregivers/friends of those who have Migraines of all ages and backgrounds share their stories with Migraine disease and share a message of hope for others going through what they are going through."

When you have a big of time, it would be well spent checking out the Project Migraine Hope web site.

Several other people with Migraines or cluster headaches were busy working to get more signatures on the Alliance for Headache Disorders Advocacy (AHDA) petition urging Congress to hold hearings on the impact of Migraine and other headache disorders. Many of these peole have Migraines or headaches that are frequent and severe enough that they're seldom able to leave their homes, but they want to be part of an advocacy effort to make things better for all of us. In the left column of this blog, you'll see a widget with a clock counting down to the deadline for signing the petition. if you haven't already signed it, you can click on that widget to sign it or CLICK HERE.

Someone with chronic Migraine also asked me about attending Headache on the Hill (HOH). HOH is an event organized by the AHDA. During this event, advocates meet in Washington, DC, to visit the offices of their Senators and members of the House to bring their attention to issues of vital importance to people with Migraine and other headache disorders. This year, HOH advocates will be taking the petition with them.

From Kelly to people attending HOH to people working to get more signatures on the AHDA petition, there's a common thread. All of these people know that one person CAN make a difference. That reminds me of one of my favorite YouTube videos, so I'll share it with you...

Live well,

 

Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2012
Last updated January 28, 2012.

Migraine Favorite Things - My "Bed Buddy"

When you have a Migraine, are things that make you more comfortable helpful? During a Migraine, creature comforts become more important to me. In addition to a dark, quiet room, I just feel better with my favorite blanket and pillow. There are some other items that are "Migraine favorites" for me too.

The Migraine I had last night kept me awake for a bit, and I was thinking that we could share our Migraine favorites. My hands and feet are always cold in the winter, but it seems that me feet are always cold when I get a Migraine, and in the winter, that's especially uncomfortable. Actually, it's somewhat painful. My feet get so cold that they hurt. That's part of what kept me awake last night.

So, I turned to my "Bed Buddy" to warm my feet. I'd heated it before I went to bed, but it had cooled down, so I heated it a second time, and it felt so good! As my feet got warmer, I could feel that I was better able to relax my entire body, and I finally drifted off to sleep.

The Carex Bed Buddy Hot/Cold Pack is easy to use. You just pop it in the microwave to heat it. Or, if you prefer, you can put it in a plastic bag and put it in your freezer to get cold. How warm it gets depens on how long you leave it in the microwave, and it stays warm for a couple of hours. It also drapes across the shoulders or back of the neck pretty well if you prefer to use it there.

I hate shopping and trying to find items in "regular" stores, so I shop online whenever possible. I found my Carex Bed Buddy Hot/Cold Pack on Amazon for under $10.00.

Live well,

 

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© Teri Robert, 2012
Last updated January 20, 2012.

In the Words of Those with Migraines and Headaches

This cold winter morning I've been scrolling through page after page of comments and stories from people who have Migraine disease and other headache disorders. These people are my heroes. They live with pain and other symptoms, the losses in their lives that Migraines and headaches have wrought, and the stigma that still pervades our society. 

Reading these comments and stories brought tears to my eyes, but they also called out to be shared so these people aren't just screaming into the wind.

If you're living with Migraine or another headache disorder, you may recognize yourself in the words of others, and those words validate that you're not alone. If you don't live with Migraines or headaches, what these dear people have said can serve as a windown into the lives of people who are.

Here are some of those comments and stories:

"If you only knew what an epidemic it really is! I have spent at least 10 out of the last 20 yrs. in bed. Know one is paying me disability, because I didn't hold down a job long enough in the first place. We desperately need your HELP!!"

"I have suffered for so many years with mgraines I often contemplated suicide because of the pain, it has left me finacially bankrupt and mentally devasting missing years of my childrens and grandchrildrens lives, thanks to hard work and the new techknowledgy and medicines my migraines are getting better but they still control my life I still miss out on so much living, there is still so much to do"

"In the first two years after my diagnosis in 2007 I had over 200 days of migraines. First, I lost my job, then my husband, my home, 85% of my hair, and friends that I don't have the energy to keep up with. I have tried almost every treatment protocal in the past 4 years with mediocre success. I am 45 and taking an Alzheimers medication as a preventative treatment. Treximet which was recently released by the FDA has been a lifesaver. We need more solutions like it. There has to be attention to understanding and curing this dehabilitating disease."

"I have chronic migraines, ones which impact me severely and daily. I have an Engineering degree but can only hold down a basic computer repair job because it's difficult to think when you're in so much pain. I've had to cancel every one of my hobbies and activities, either due to the pain itself or simply from skipping so many days due to this illness. It's easy to dismiss these as "just another headache" if you've never experienced them...I foolishly once did this as well...but please understand that when any light and sound causes you immense pain, you effectively cannot do a single thing. You lose friends, you miss out on activities and special events, and your life essentially just stops as you can do nothing else."

"Nobody knows what a living hell constant migraines can be; you just want to give up your will to live b/c life is not worth living w/this pain."

"This biological, neurological disease that I have suffered for over 50 years has taken precious time from me, and has cost me my job of 18 years...I have had open heart surgery with quintuple bypass, and a bifemeral artery bypass...I have no health insureance so my migraine drugs costs 40 dollars per pill....I could go on and on...."

"I live in bed due to neverending headaches and take multiple narcotics to keep the pain to a dull roar. I have no life, no fun. I leave the house to go to the doctor, rarely for other reasons. There needs to be more research into why people end up like this. This is no way to live."

If there's someone in your life who has Migraines or headaches, I hope this has given you some insight into their lives. They need your help and understanding. For those of you who live this yourselves, let's keep each other in our thoughts today and hope everyone is having a day that's as pain-free as possible.

The problems of living with Migraines and headaches seem monumental, and they are. But, decidated researchers are trying to improve the available treatments and quality of life for everyone affected. To be successful, these researchers need more funding, and to get more funding, we need the American people in general and Congress specifically to better understand Migraine and other headache disorders and what they do to the lives of American citizens. To that end, the Alliance for Headache Disorders Advocacy (AHDA) is currently asking people to sign a petition, one that AHDA advocates will personally deliver to members of Congress on March 27. It takes less than a minute to sign it. You simply follow the link and enter your first name, last name, email address, and ZIP code.

If you've signed this petition, thank you from the bottom of my heart! If you haven't signed it, please take just a moment to do so. Please use your real, full name or Congress will disregard your signature. Your name will NOT be revealed to anyone else. Please use a different email adddress for each signer. Also, if you would, please, share the link with your friends, post it to Facebook and Twitter? We all appreciate any help you can offer.

SIGN THE PETITION

Live well,

 

Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2012
Last updated January 19, 2012.

Living with Migraines - Thoughts and Video on a Sunday

Migraine, Migraine, go away! So, how are you this Sunday afternoon? The crazy weather changes aren't being to kind to me. I hope you're faring better.

It's been a strange weekend, one filled with some "drama" watching people online get upset with something I said while trying to be helpful. My explanation fell on deaf ears, and I've found myself pretty much in the dumps today. But, that too shall pass.

Overall, the online Migraine disease community is filled with some truly exceptional people who never cease to amaze me with their compassion, intelligence, and courage. The people who are upset with me at the moment are no exception to this. Pain and frustration with diseases and illnesses can predispose us to be cranky and misinterpret people's words and intentions. There are times when this happens, and the best solution is to just remove ourselves from the situation. There are other elements at play here too, I think. I often wonder if people would say some of the things they say online if they were face-to-face with the other person. Plus, Internet communication doesn't covey facial expressions or tone of voice, so it's easier to misinterpret intent.

Anyway, all of this has left me thinking about kindness and compassion today. Along those lines, here's a video I'd like to share with you...

Live well,

 

Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2012
Last updated January 15, 2012.

Living with Migraines - Thoughts and Music on a Sunday

Sunday is often a contemplative day for me when I think about last week, plan next week, and think about all kinds of things, including my Migraine "family."

This week is no exception. Well, maybe it is in a way. It's been a hectic couple of weeks with wrapping up 2011 and starting into 2012, and several things have kept everyone who lives with Migraine and other headache disorders in both my thoughts and my actions.

This morning, I received an email that brought tears to my eyes and a spectrum of emotions along with the tears. WEGOHealth is running a Health Activist Awards campaign, and nominations for 2011 awards closed the end of December. The email I received this morning notified me that I've been nominated as a "Health Activist Hero" It included a copy of what the person wrote when they nominated me. Wow. They didn't give me the name of the person who nominated me. I could make a few guesses, but I really don't know who it was. Every day, I count myself fortunate to do the work I do because I'm able to help people with Migraines and headaches, people I can relate to because of how Migraines have made a mess of my life at times. This email left me both humbled and elated. It confirmed for me that we can make a difference, one person at a time. Wow. To whomever nominated me, thank you.

On Facebook, Nancy Bonk, Ellen Schankenberg, and I created a new group, Migraine Info & Support for the Proactive Migraineur. We made it a "closed" group so people have to ask to join. That lets us keep the spammers out or kick them out if they fool us into letting them in. It also lets us make it a safe place for Migraineurs to come for support in a place where they can talk with people who understand and will support them, then help them find proactive solutions to their problems. It's doing really well.

The Alliance for Headache Disorders Advocacy (AHDA) continues to ask everyone to sign our online petition urging Congress to hold the first ever hearings about Migraines and other headache disorders. We need 20,000 signatures before March 27, when AHDA advocates will personally present the petition to our Senators and members of the House during Headache on the Hill.

Here's why we're working on this petition - One of our biggest problems is lack of good treatments, and a big part of that problem is lack of adequate research funding. That, in turn, is largely a result of Congress and the public not understanding the impact of Migraine and other headache disorders. The shorter term results would be better Congressional and public understanding of all of the disorders and their impact. The longer results would be that understanding leading to more research funding, better treatments, more well-trained health care professionals, improved health for Migraine and headache patients, and a decrease in the stigma surrounding the disorders.

If you haven't signed the petition yet, please sign it? It honestly will take you less than one minute, and you'll be helping millions of people. Sign the Petition.

Now, just for fun, I want to share something with you. Someone sent me a YouTube link on Twitter this morning. I enjoyed it so much I thought I'd pass it along. Enjoy!

Live well,

 

Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2012
Last updated January 8, 2012.

Migraines or Not - Best Wishes for 2012!

Whether you have Migraines or headaches or not, I want to take this opportunity to wish you the very best in 2012.

2011 was a difficult year for many people I know. Well, it was a difficult year for many people, period. The first few days of 2012 have been very busy for me, but I don't want to get any farther into this new year without wishing you well.

I'm not going to spend a lot of time and space writing here about managing Migraine disease and headaches in the new year. I've already done that in two other places, so it makes far more sense to give you the links to those pieces than to do it all over again here. I took two different approaches to the new year and Migraine / headache management for 2012. I hope you find one of them helpful to you or someone you know...

Sometimes, we set ourselves up for disappointment by setting lofty goals for ourselves that just aren't very realistic given our situation. I've done that to myself, and I hate to see any of us do it. So, for the HealthCentral Migraine community, I wrote Realistic Migraine Management Goals for 2012. There's a slideshow that goes with the post, and I hope you'll find it both helpful and encouraging.

On MIgraine.com, I wrote about my personal favorite approach to Migraine management, the proactive approach, which means taking charge of my own health and my health care. Yes, I do know how difficult that is, and I realize that will make that piece less than popular with some people. But, I have to share that until I got angry enough about going to doctor after doctor and not getting any better, took charge, and traveled that horribly difficult eight hours each direction to see a specialist, I was stuck in bed five or six days a week with the Migraine from hell. I wanted better than that for myself, and I want it for you too. So, on Migraine.com, I wrote Migraines and My Promise for 2012.

As we head into 2012, I wish you the moon and the stars and all things bright and good!

Have you set goals, made resolutions, or made promises to yourself about your health for 2012? Post a comment to share them with me. I'd love to hear from you!

Live well,

 

Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2012
Last updated January 4, 2012.

Merry Christmas, a Flash Mob, and Migraines

Good morning, everyone! Are you ready for Christmas? I'm as ready as I'm going to get.

Looking around on YouTube, I came across a video of a Christmas flash mob in a mall food court that's unique and wonderful. I want to share it with you...

I hope the video brought a smile to  your face. I wish you a joyous Christmas free of Migraines and full of happiness.

Live well,

 

Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2011
Last updated December 24, 2011

"Bah humbug!" to Holiday Migraine Triggers

Each year, many Migraineurs miss out on holiday activities or enjoy them less because of Migraines. An obvious statement, right? Yeah, I know, but let's take a look at it anyway.

There are triggers we can avoid and triggers we can't avoid. We can't really avoid triggers such as weather changes or hormonal fluctuations, but we can avoid some triggers such as foods and our sleep schedule.

There's also that third category of Migraine triggers, those that could be avoidable, but... Take fragrance as an example of this kind of trigger. If perfumes, scented candles, and the like are triggers for us, we can avoid them, IF... If we keep them out of our homes, don't go out, and don't let other people in. Bah humbug! That's certainly not in the holiday spirit.

So, what do we do? I certainly can't tell you that we can avoid all our Migraines during the holidays. Well, I could, but it would be a lie. We CAN, however, take steps to minimize our exposure to some triggers and to reduce the impact of any Migraines we do get.

Let's take a look at how we can work on this:

If we're going to try to avoid our triggers to reduce the number of Migraines we have, we need to know what our triggers are. The best tool for identifying triggers is to keep a Migraine diary. If you need a diary, you can download a free diary workbook with diaries in several formats for you to choose from HERE.

Once we know what our triggers are, planning ahead is our best weapon. For tips on managing avoidable holiday triggers, take a look at 10 TIps for Enjoying the Holidays Despite Migraines and Navigating Holiday Parties with Migraines: Five TIps from Marcia Cross.

Since it's impossible to guarantee no Migraines during the holidays, it's vital to have a plan in place to handle any Migraines we do get...

• Check your medications - prescription and over-the-counter. If you need medications, make sure to get them in advance, especially if you need a new prescription from your doctor.
• Traveling? Be sure to take your medications AND anything else that you need during a Migraine. Remember those things that you use for comfort too. They can be important. I have a bag that I keep packed with the things I need during a Migraine - everything except my prescription medications. When a Migraine strikes when I'm home, that makes it easy for my husband to get me the things I need and want. When we travel, I add my medications to the bag, and I'm ready to go. Want some suggestions for putting a bag together? See MAPP Your Migraines.

Living with Migraines for over 50 years has taught me always be prepared for a Migraine, then try not to worry too much about getting one. Not worrying is definitely easier said than done, especially when important events are coming up, butif all these years have driven one point home it's that worry about it won't keep it from happening, but it will dim my enjoyment of the family, friends, and all that goes with the holidays.

Try to let go of any need to push for perfection that you may have. Perfection is highly overrated and virtually impossible to achieve. People who care about us are more concerned about enjoying our company than whether holiday meals are just right or whether all the gifts are beautifully wrapped. Let go of striving for perfection and of any guilt and embrace the joy of the holidays.

Happy Holidays!

 

Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2011
Last updated December 8, 2011