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Access to Migraine and Headache Care Threatened - Take Action!

TakeActionNow166 Access to headache care is threatened:
Contact your US Representatives now!

Take Action!

Neurologists provide specialized, coordinated, and often life-long care for patients with disabling headache disorders including migraine and chronic daily headache. Neurologists also provide comparable care for patients with other major and costly diseases such as Alzheimer’s, Parkinson’s, stroke, ALS, epilepsy, MS, peripheral neuropathy, fibromyalgia, and traumatic brain injury (TBI).

The recent health care reform act, the Patient Protection and Affordable Care Act (ACA), provides incentives to encourage primary care but failed to include neurologists among the eligible health care providers. This omission could worsen the shortage of headache specialist physicians.

The Alliance for Headache Disorder Advocacy believes that this issue is vital to preserving headache patient access to neurologists.  We have joined 19 other national neurology patient-oriented advocacy groups in urging Congress to resolve this problem immediately.

On Tuesday, September 21, your US House member on Capitol Hill received a letter from Congressmen Michael Burgess (R-TX) and Russ Carnahan (D-MO) asking for support on including neurology in the ACA primary care incentive.

Please contact your US Representative and ask him or her to sign the Burgess/Carnahan letter! Follow the link to send an email message to your US representative as soon as possible.

Each of us CAN make a difference. When you follow the "Take Action" link, it takes less than 10 minutes to email your representative.

Email your member of the House with this link...

 Take Action!

Live well,


 

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© Teri Robert, 2010
Last updated September 23, 2010.


Medication Overuse Headache Is NOT Addiction!

ThumbDown I don't like to write about articles that others have written about Migraines or headaches when it's to say that the articles are bad. I prefer to share good articles with accurate and useful information. An article on Suite 101 that was pointed out to me by a Migraineur brings me to make an exception to my preferences today.

Geraldine Ketchum has published an article on Suite 101 entitled "Migraines and Rebound Headaches." Medication Overuse Headache (MOH), aka rebound, is an important issue to those of us with Migraines or other headache disorders. Good articles about MOH are always in demand. However, Ketchum's article is fraught with misinformation, misinterpretations, and errors.

Rather than going into all of them, I'm going to focus on this statement:

"This type of addiction is neither a moral nor a psychological issue. It is a pain issue. But once the body has gotten used to having a drug, it will not voluntarily give it up. It wants more of the wonderful relief that a lack of pain brings – that sense of being lighter and able to think again."

Addiction? Let me make this very clear:

Medication overuse headache is NOT
a form of addiction!

Ketchum needs to do some research into what addiction is. It's different from dependence and tolerance, but too many people make the mistake that Ketchum has made -- writing without learning the difference FIRST. I'm going to quote from an excellent article, "Opioids: Addiction vs. Dependence," by Karen Lee Richards.

"Addiction is a neurobiological disease that has genetic, psychosocial, and environmental factors. It is characterized by one or more of the following behaviors:

  • Poor control over drug use
  • Compulsive drug use
  • Continued use of a drug despite physical, mental and/or social harm
  • A craving for the drug"
"Physical dependence  is the body's adaptation to a particular drug. In other words, the individual's body gets used to receiving regular doses of a certain medication. When the medication is abruptly stopped or the dosage is reduced too quickly, the person will experience withdrawal symptoms."
"Tolerance is a condition that occurs when the body adapts or gets used to a particular medication, lessening its effectiveness. When that happens, it is necessary to either increase the dosage or switch to another type of medication in order to maintain pain relief."

Wondering what qualifies Ketchum to write about Migraine and other headache disorders, I followed the link to her biography. She's a librarian with degrees in English language and literature and library and information science. I see no medical background or any other information in her bio that would indicate her possessing knowledge of or experience with Migraines or headaches. Her background would indicate, however, an ability to research topics well. I find it disturbing that she didn't research this article better.

Myths and misunderstandings about Migraine abound. When an article such as this one is published, it does nothing to rid us of these myths and misunderstandings. It does the opposite; it perpetuates them.

Additionally, Migraineurs bear enough burden from the stigma associated with Migraine. We don't need people publishing poorly researched and written articles that equate medication overuse headache with addiction.

Ms. Ketchum, if you happen to read this, I hope you'll research better before writing more about Migraines and headaches.

To anyone in a position of authority at Suite 101, I urge you to do more to verify the accuracy of articles published on your network. Review by physicians who specialize in the areas about which Suite 101 articles are written could prove helpful. Your slogan is, "Insightful writers, informed readers." Ketchum is hardly insightful when it comes to this topic, and reading this article will not lead to informed readers.

____________
Resources:

Ketchum, Geraldine. "Migraines and Rebound Heaaches." Suite 101. September 10, 2010.

Richards, Karen Lee. "Opioids: Addiction vs. Dependence." ChronicPainConnection. December 1, 2008.

Live well,


 

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© Teri Robert, 2010
Last updated September 20, 2010.


Back to School: Sept. 2010 Migraine Blog Carnival

BlogCarnival125 Welcome to the Sept., 2010, Headache and Migraine Disease Blog Carnival!

The Headache & Migraine Disease Blog Carnival has been created to provide both Migraine and headache patients and people who blog about Migraines and headaches with opportunities to share ideas on topics of particular interest and importance to us.

The theme of the September carnival is "Students and headache disorders - How have migraines & headaches affected your schooling? How has a headache disorder affected your school age child? How did you cope with balancing school and headaches or migraines?"

This month's carnival is hosted by Diana Lee, the founder of the carnival, on her blog Somebody Heal Me.

Are you ready to read some great posts? On to the September, 2010. Headache & Migraine Disease Blog Carnival: Back to School.

Live well,


 

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© Teri Robert, 2010
Last updated September 13, 2010


Botox for Migraine: Sept., 2010, Update

Botox100 Clinical trials to determine the efficacy of Botox (botulinum toxin type A) for Migraine prevention have been underway for several years. During this time, some doctors have used Botox off-label for their patients. Let's take a look at where things stand now, in September of 2010.

A bit of background: Off-label prescribing or usage of medications is very common. "Off-label" simply means using a medication for a purpose other than those for which the FDA has specifically approved it. Once a medication is approved by the FDA for human use, it's both legal and legitimate for doctors to prescribe it for other conditions when they believe it will be helpful. Migraine preventive medications are a perfect example of off-label prescribing. Of the more than 100 medications in use today, none of them were originally developed for MIgraine treatment. They were all developed for other conditions, then found to work as preventives for some Migraineurs. Four of them were put through the additional clinical trials to win formal FDA approval for Migraine prevention:

  1. propranolol, a beta blocker, brand name Inderal
  2. timolol, a beta blocker, brand name Blocadren
  3. divalproex sodium, a neuronal stabilizing agent (anticonvulsant), brand name Depakote
  4. topiramate, a neuronal stabilizing agent (anticonvulsant), brand name Topamax

What's NOT permitted:

It's legal to prescribe medications off-label, BUT it's not legal for pharmaceutical companies to promote or advertise a medication for any purpose for which it's not FDA approved. That means that Allergan, the manufacturer of Botox, may promote and advertise it for the purposes for which it is already approved - cosmetic purposes, blepharospasm, cervical dystonia, hyperhidrosis, strabismus, and upper limb spasticity. Promoting it for off-label use constitutes what the FDA calls "misbranding," and it's illegal.

Recently, Allergan was in the news when they agreed to pleas guilty and pay a $600 million fine to resolve allegations that they had promoted Botox off-label.

A point that needs to be understood about this is that the issue was NOT about doctors using Botox off=label. It was entirely about allegations that Allergan had promoted it for purposes other than those for which it was FDA approved. So, it has nothing to do with the medication itself, but about marketing and promotion practices.

Good news of progress:

Botox was recently approved in the UK for treating Migraine. In the U.S., the FDA is currently reviewing clinical trial data about Botox and Allergan's application for FDA approval of Botox for Migraine treatment. Many Migraineurs are hopeful that FDA approval will come soon. I've heard from many Migraineurs who would like to have the option for trying Botox for MIgraine prevention, but their insurance companies decline payment, saying that the treatment is "experimental" or "investigational."

If you've been wondering about Botox, you might be interested in reading Allergan's information about Botox History and Development, which includes a time line of when Botox was approved for various uses.

Live well,


 

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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, 2010
Last updated September 13, 2010


Off-Topic: Remembering 9/11

I've had the now historic 9/11 on my mind a lot today, but I just couldn't get my thoughts to go from my brain through my fingers to blog. The day is nearly over, and I give up.

Alan Jackson's song, "Where Were You When the World Stopped Turning," is more eloquent than I ever could be, so to share my thoughts and feelings, I offer you this video...

Oh, my. I'd no sooner posted this than someone Tweeted about another piece of video I'd forgotten. Watching it again brought a tear to my eyes. I HAD to come back and add this one...

Live well,


 

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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, 2010
Last updated September 11, 2010


Migraines, Headaches, Expressing Ourselves

image from terirobert.typepad.com Did you know that we have an annual Putting Our Heads Together Migraine Poetry Contest? Yes, we do!

Around the first of February, we announce our call for entries and accept poetry about Migraines or headaches for the contest. We read and reread all of them and announce the winners in April in time for National Poetry Month. We publish not only the winning poems, but all the entries.

To make the poems easier to find, I've added a page to this blog with links to the poetry from over the years. Just look at the top navigation links, just under the image header at the top of the page, and click the "Poetry Contests" link to explore.

Live well,


 

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© Teri Robert, 2010
Last updated September 9, 2010


Migraine Friends - Light a Candle with Me

WorldSuicidePreventionDay166 Migraines can lead us many places, including that place where we have trouble finding a reason to live and contemplate taking our own lives. This is something we don't like to think or talk about, but leaving it in the dark or only whispering about it, only leaves it to grow.

This is National Suicide Prevention Week. Friday is World Suicide Prevention Day (WSPD). There are activities and events planned in various places around the U.S. for the week and around the world for WSPD.

What about those of us who'd like to do something, but can't get to any of the events and activities? That's a question the International Association for Suicide Prevention (IASP) is addressing this year by starting a new activity that anyone can do from their own home. It's called Light a Candle on World Suicide Prevention Day at 8 PM.

Come Friday evening at 8 PM, I'm going to be lighting a candle in memory of those who have taken their lives and those who have considered it or are contemplating it now, to remember two specific Migraineurs I knew who took their lives because they lost hope.

LightACandle2010BFull

Please. Will you join me Friday evening and light a candle in a window of your home? I hope so. Another thing each of us can do is tell as many people as possible about this event. If you blog or have a web site, please write about it. If you don't want to write about it yourself, please link to this entry. Post it to Facebook and Twitter, email everyone in your email address book.

This is something we can do not only in memory of those who have passed, but in support of everyone who is still here. For each other, for ourselves.

Please. Join me?

Live well,


 

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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, 2010
Last updated September 9, 2010


Migraine Awareness: Vital Everywhere

MigraineMatters175 Last week, I wrote about this week being Migraine Awareness Week in the UK.

Today, I want to remind everyone not only that it's Migraine Awareness Week in the UK, but that there are reasons all of us should spread the word, regardless of where we live.

Consider these statistics:

  • Migraine affects 18% of women and 8% of men.
  • The World Health Organisation has listed migraine in the 20 most disabling conditions.
  • More people have Migraine than diabetes, epilepsy and asthma combined.
  • According to a World Health Organization analysis, Migraine alone is responsible for at least one percent of the total US medical disability burden, and severe Migraine attacks are as disabling as quadriplegia.
  • The US annual direct and indirect economic costs of Migraine and other headache disorders exceed $31 billion.
  • Greater than 1400 more US women with Migraine with aura die annually from cardiovascular diseases compared to women who do not have Migraine.
  • Based on a sample of Americans, suicide attempts are three times more likely in individuals with migraine with aura compared to those with no migraine, whether or not major depression is also present.

Whether you have Migraines yourself or care about someone who does, won't you please help promote Migraine awareness? If you have a blog or a web site, you can write about it yourself or link to this blog or others on the topic. If you don't have a blog or web site, share links via emai, post to your Facebook page, Tweet about it. One pserson can indeed make a big difference by helping raise awareness.

Live well,


 

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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, 2010
Last updated September 7, 2010