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,

 

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

New Migraine and Headache Blog Network

Blogs about Migraines and headaches have been multiplying like bunnies recently. Have you noticed?

If you do a search for Migraine or headache blogs, the results are overwhelming. What's more, you can waste a lot of time going to blogs that are nothing more than advertisements. Don't you hate that?

I love reading good blogs. I learn from them, and they make me feel less alone and isolated with my Migraines and headaches. They remind me that I'm part of a huge online community. There's solace in that.

This week, I started a new web site, the Headache Disorders Blog Network. The purposed of the site is to compile a directory of good blogs on Migraine and other headache disorders - blogs by patients, advocates, health care professionals, and nonprofit organizations. To be listed, blogs need to:

• be accurate in any information posted on them.
• be updated fairly regularly.
• contain information related to one or more headache disorders.
• be free of commercial bias.

Blogs will not be listed if:

• the information is incorrect or outdated.
• content has been plagiarized.
• the content comes from "free article" sites.
• the sole or primary purpose is to promote goods or services.
• they contain claims of a "cure."

Since Twitter is considered to be "micro-blogging," there will also be a section for listing Twitter ID's of those Tweeting about headache disorders.

The Headache Disorder Blog Networ will be an ongoing project with blogs being added on a regular basis. Please bookmark it so you can refer to it often. If you have a blog that you'd like to submit for inclusion or know of one you'd like to suggest, please email your submission.

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 25, 2012.

Migraine Pearls or Onions, 1/23/12

When it comes to finding Migraine information online, there's no problem finding a voluminous amount. The problem is whether it's accurate and unbiased. Online information can be bright polished, and valuable - like a pearl - or it can be... well, rough and stinky - like an onion.

This feature, "Migraine Pearl or Onions?," highlights both the gleaming Migraine pearls I come across and the malodorous "Migraine Onions."

Today's Pearl and Onion come from the same YouTube video. The video itself is good and well worth watching...

Today's Pearl goes to FOX 26 News for this interview about Migraines. The one problem I have with it is that Dr. Payman Sadeghi says, "In order to have Migraine, you gotta have servere headache." That's inaccurate. The headache of a Migraine attack can be mild to severe, or you can have what's called acephalgic or silent Migraine - a Migraine that has no headache at all. Other than that, he does quite well. He does a good job listing triggers and encouraging people to keep a Migraine diary. He also make the point that treatment should come from the appropriate specialists.

Today's Onion goes to the person with the YouTube ID "MyMigraineTreatment." I'll refer to this person as "MMT." As far as I can tell, MMT has no affiliation with the television station that aired this news segment ore Dr. Sadeghi. It's interesting that the video was general information about Migraine, BUT the title MMT put on it on YouTube is "Migraine Treatment - Get Rid of Migraine Pain Completely." Th edescription of the video says:

"Migraine Treatment - Discover How To Get Rid Of Migraine Pain In 48 Hours... For More Info Visit http://bestmigrainetreatment.net/"

Curious, I visited the site. Lo and behold, it's yet another person trying to sell "The Migraine Relief Guide." If that sounds familiar, it may be because I've written about it before. Back in July of 2009, someone asked me if I knew anything about it. I didn't, so I paid the $37 to buy and read it. There wasn't a think in it that couldn't be found somewhere else online free. And it certainly doesn't tell you how to "Get Rid of Migraine Pain Completely" or in 48 hours.

"The Migraine Relief Guide" has a money-back guarantee, but I had trouble getting a refund. Fortunately, I had paid with PayPal, and filing a complaint with them resulted in my getting my money back.

It just seems wrong to me that MMT posted someone else's video to YouTube to promote their site, which exists to sell this ebook. Interestingly enough, when I posted a comment to this effect on the video on YouTube, they deleted it and blocked me from commenting again. This may be a violation of YouTube's Terms of Service as well.

Do you have suggestions for Migraine Pearls or Onions? If so, pleae leave a comment to share your suggestions!

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 23, 2012.

Living with Migraines - Thoughts on a Sunday

Good morning, all. It's Sunday again, and once again, a Migraine is kicking my behind. Grrrrrrrrrrrr. Still, I'm observing my Sunday routine of taking time for reflection and applying some of my more spiritual thoughts to my world.

It seems that 2012 is off to a rocky start for quite a few of the people I know who have Migraine and other headache disorders. The constantly changing temperatures in parts of the country are a big Migraine trigger for some, and some are feeling the stigma of Migraine diease even more strongly than ever.

Migraine is often referred to as an "invisible illness." There are no visible cuts or bruises, no casts on arms or legs. Many of us look perfectly "normal" to other people, even when we have a raging Migraine. So often, people just can't understand when we can't do things with them, when the perfume they wear in the office triggers a Migraine and sends us running to the restroom. They don't understand that over-the-counter products such as Tylenol, Advil, and Excedrin Migraine are about as effective for many of us as swallowing a couple of breath mints.

Even among Migraineurs, there is often a lack of understanding. Those who have a few mild Migraines a year sometimes thing that people who have Migraine daily or near daily and are totally incapacitated by them are exaggerating. They don't understand why some of us "insist upon calling these headaches a disease" or why some of us are "making such a fuss" that we're taking a petition for Congressional hearings to Congress in March.

OK. By now, you may be wondering where anything spiritual comes into this. Here it is - I think the most important thing in living a "good" life is how we treat other people. If you believe in the Bible, do you remember in the book of Matthew when Jesus is asked "What is the greatest of the commandments?" He replies:

"Thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind. This is the first and greatest commandment. And the second is like unto it, Thou shalt love thy neighbour as thyself." (Matthew 22:37-39)

If you're not into the Bible, just think of the "Golden Rule." Do unto others as you would have others do unto you."

So, to me, it all boils down to loving God and being good to the other people in our lives, and that (and probably having a Migraine) brought me to thinking about the how people with Migraine are often treated - by those who don't have Migraines and by some who do.

Then there's one of the most valuable lessons my father ever taught me - that it's not enough to talk about your principles, you have to live them too. That you teach by example. Of course, there are times when I'm better at that than others. I have to keep trying.

In the end, what I'm getting at is that before we dismiss someone's illness or that something seemingly trifling that we do could actually make them ill, let's stop and think for a moment. Give them the benefit of the doubt. If a friend or coworker has an illness, we need to not just dismiss it or them. Learn a bit about it, to be a considerate human being. And, we need to teach and lead by example. If we're more considerate of a coworker, another person may be more considerate of them, then another and another. How we treat other people makes a huge difference, not just to them, but to us as well. It feels good to be nice.

To close, here's a darling video that demonstrates this point...

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 22, 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,

 

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 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.

Migraine Pearls or Onions, 1/18/12

There's a great deal of information about Migraine online, but not all of it is accurate and unbiased. It can be bright, polished, and valuable, or it can be... well, rough and stinky.

This feature, "Migraine Pearls or Onions?," highlights both the Migraine Pearls I come across online and the stinky Migraine Onions.

Today, I'm going to save the best for last and start with the Migraine Onion...

Today's Migraine Onion goes to Dr. Andrew Jones of the Women's Health Institute of Texas. On his site, Jones says you can "Kiss your Migraine Headaches Goodbye Once and for All, claiming...

"There is a CURE – one your doctors probably never heard of. And even if they did – they’ve dismissed it out of hand. This isn’t some charlatan’s snake oil treatment or a yam and herb remedy better suited for the kitchen table than your infirmity."

As you read on, you find that Jone's "cure" involves bioidentical hormones. He's also "proud to announce" that his book is now listed on Amazon. Well, it doesn't take much to be listed on Amazon. All you need is a book to sell.

The page of the site about the Women's Health Institute says...

"The WHI explores new, natural and even controversial non-mainstream alternate methods for addressing health and wellness issues concerning women in the 21st century. As a research center, WHI does not see or treat patients directly."

So, why an Onion for Jones?

• Migraine is a genetic neurological disease for which, at this time, there is no cure.
• Not all doctors dismiss other people's theories out of hand. Some excellent Migraine specialists also work with hormone therapy for their patients, and they will be the first to tell you that, even if it's helpful, it is not a cure.
• Jones claims to have "cures" for other diseases too. Just do a search. You'll find them. Thyroid, PMS, depression, and more.
• Since he actually is an MD, some desperate people are going to listen to him.

And, today's Migraine Pearl. Today's Pearl goes to The Migraine Research Foundation.The Migraine Research Foundation (MRF) funds "innovative research to further the understanding of the causes and mechanisms of Migraine, to develop improved treatments for sufferers, and to find the cure."

All of the operating expenses of the MRF are underwritten by private donors, so every penny donated to the MRF goes to Migraine research. The MRF has recently announced their third annual round of research grants. You can read more about the 2011 grants in Migraine Research Foundation's 2011 Grants Announced.

My thanks to the MRF for their dedication to Migraine research, and congratulations to their grant recipients!

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 18, 2012.

Magnesium Sulfate for Migraine? May be Affected by Shortage.

An IV infusion of magnesium sulfate can be one of the most effective treatments when a Migraine has gone on too long.

This simple treatment has fewer potential side effects than many other treatments, and it can actually abort a Migraine rather than just masking the pain and other symptoms for a few hours. Some Migraine and headache clinics are set up to do IV infusion. Some doctors refer patients to the ER or a hospital infusion center for these treatments. You can read more about IV infusion treatment for Migraine in Effectiveness of IV Therapy in the Headache Clinic for Refractory Migraine.

If you rely upon magnesium sulfate IV infusion, you should know that there is currently a shortage of magnesium sulfate for IV infusion. My colleague and friend Ellen has written about it on Migraine.com. You can read more in Nationwide Magnesium Sulfate Shortage May Affect Migraineurs.

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 17, 2012.