Archive for the ‘educating others’ Category

AHDAlogoThe second  Headache on the Hill will be held in Washington, DC next Monday and Tuesday, February 23rd and 24th. The long-term goal of AHDA is to have the National Institutes of Health increase its spending for research for Migraine and other headache disorders. This event’s purpose is

to educate members of Congress and their staff about the problem of NIH underfinding of headache research and to suggest remedies.

In addition,

we intend to make specific progammatic requests of Congress during HOH that should have lasting benefits but that will require relatively modest short-term increases in NIH expenditures.

This particular HOH is important because we have a new president and a Democratic Congress who promise action an a variety of legislative actions.
What can you do to help? Join AHDA’s mailing list and you will receive legislative alerts when it is appropriate to contact your Congressman.

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photo courtesy of All About Migraine

photo courtesy of All About Migraine

So often the image of a Migraine is a woman, like the one to the left, rubbing her head and with her brow knit in severe pain. I had a Migraine today. It was different from the usual “Where is the nearest cave so I can die in peace?” type Migraines. In fact, if I had told someone that I had a Migraine, I am not sure how believable I would have sounded. It was different because my head didn’t hurt that much.

 However, I couldn’t work. I couldn’t focus on what I was doing. I was lethargic; all I wanted to do was curl up in a chair with a cup of tea and be a vegetable for a while. Oh, even though I swore I would not take a triptan unless my pain exceeded a 5, I succumbed to both the triptan and my awaiting chair.

All this got me thinking. Migraineurs rightly say that Migraine is NOT a bad headache, but when I ran a search for Migraine images nearly all of them emphasized the head pain. I am wondering if the image of Migraine as being “just a bad headache” would change if Migraineurs, doctors, and drug companies would emphasize some of the other common symptoms. Just a thought; what do you think?

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I promised Parin that I would address this topic again and explain my point a bit clearer. It all comes down to semantics of the words dependence and addiction. I hope that it is sufficient to say that some medical websites use the words interchangeably, referring to the physiological need for a particular drug. For instance, here is the definition of dependence taken from the e-Medicine Health (a part of WebMD.com) website:

Drug dependence is the body’s physical need, or addiction, to a specific agent. Over the long term, this dependence results in physical harm, behavior problems, and association with people who also abuse drugs. Stopping the use of the drug can result in a specific withdrawal syndrome.

The Mayo Clinic also uses these words interchangeably. I think that for consistency, dependence should refer to physiological need and addiction should add the characteristics of psychological need and drug seeking behaviors.

To answer Parin’s question, no I would not consider someone taking insulin or thyroid medicine addicted or dependent because neither are drugs, but rather replacements for a hormone that is missing.

Getting back to the article. The author’s headline is down-right WRONG on 2 points. First, neither of these drugs (Fiorinal and Percocet) are Migraine drugs. The FDA has not approved their use in the treatment of acute Migraine, although some physicians prescribe them as Migraine rescue drugs.

As I stated in the original post, these medications carry with them a double whammy. Not only can unwary Migraineurs develop medication overuse headaches (MOH), but they also run the risk of becoming dependent on the butalbital in Fiorinal or the oxycodone in Percocet.

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Focus GroupYesterday I participated in a focus group hosted by WegoHealth. It was sponsored by GlaxoSmithKline, makers of Imitrex and Treximet. The independent moderator asked us various questions regarding a support program GlaxoSmithKline hopes to launch very soon.

My experience was very positive. It was great having the moderator, who doesn’t have Migraines, be truly interested in my experience with Migraines. He truly wanted to know what format and information would be supportive. The moderator was also independent without any ties to GlaxoSmithKline. We could be honest in our answers and could say the whole idea was ridiculous, if we wanted to. But it isn’t ridiculous, although there was one design that none of us liked.

courtesy or Tina's Hobby and Art Design

courtesy or Tina's Hobby and Art Design

The other part was hearing others’ voices talk about THEIR experience, which was very different from mine, and their ideas. I haven’t realized how supportive it is to hear another voice. I know there are many forums and support is only a keystroke away, but this was different. And I LOVED it! It was as if I were wrapped in a warm sweater.

So if you know someone who has Migraine and want to offer some special support this Christmas season, pick up the phone and say “Hi, I have been thinking about you.” That would be the best Christmas present ever!

Have an AWAP day,


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photo courtesy of All About Migraine

photo courtesy of All About Migraine

On December 10 Teri Robert posted an excellent post concerning the difference between Migraine and tension-type headache. Dr. Robert Lipton, one of the nation’s top headache experts presented a clear picture of the difference between the two.

That said, after the YouTube video ends, there are slides on the bottom of the screen that have titles, such as “How to Cure a Migraine Headache Naturally”Cure for Migraines, and Migraines: EFT Tapping Releases Root Cause Part 1. The last one has Michelle explaining what a Migraine is. She has her facts straight about the signs and symptoms or Migraine, but that is about all that is correct in this video clip. She states that right-sided Migraine is a masculine energy relating to past experiences. The opposite is true for left-sided Migraine. Steam started to flow from my ears when I heard:

The body mind connection for migraine [no capital here. This description doesn’t deserve it] has to do with meeting demands and the feeling of not being able to fulfill them. Now we have to ask ourselves why we want to avoid these demands in the first place…..by manifesting a migraine we have a way to take a time out and get extra love and attention.

Right, as if I would conjure up a Migraine so I can miss my son’s graduation party. That was enough for me. I couldn’t listen any more.

Here’s another one: Possible Cure for Migraine

Migraines are very debilitating. I have cured lots of them. Many of them come from guilt that you’ve laid on yourself.

The gentleman then promised that all of the negative input I have concerning Migraine will “be forever disconnected when I sound the buzzer”.  He then sounded a buzzer and said “disconnect”.  I guess now my migraines are cured. I’d laugh if it wasn’t so pathetic.

So gentle reader, be careful. Just because one YouTube video in a series is valuable, doesn’t mean that all of them are.

Have an AWAP day,


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Catchy title isn’t it. News releases, magazine articles, books, lectures and Sunday sermons all have one thing in common: catchy titles. They serve two purposes: one to get readers or listeners, the other to make the content believable. Sometimes, more believable than it really is.

Mathes, Malone, Davis, Lucas, Porter, and Li [1] released their findings in an article entitled, Migraine in Postmenopausal Women and the Risk of Invasive Breast Cancer, in the journal Cancer Epidemiology, Biomarkers, and Prevention earlier this month. Ever since, such reputable sites as Scientific American and MSNBC and the National Headache Foundation Newsletter have carried the news story. Is this finding worth all the media hype?   

Maybe not.
Unfortunately, for most of us, news reporters do just that: report the news. I guess it isn’t up to them to interpret it or analyze it, just report it. That leaves interpretation to those for whom it is important. Watchdogs and Migraine bloggers. I am one of the latter, although I hope, one day to be both. I have several questions and I will address them in turn.

Why is this big news?
     I have to admit it, but when I first read the article, I told my DH, “Ok, that’s interesting, but so what? What is the big deal? This doesn’t necessarily help manage or explain Migraine disease and women can’t “catch” Migraine disease to lower their risk of breast cancer. It doesn’t help women who already have breast cancer. Why is everyone so excited??” I don’t find this kind of research very helpful.

Why did this story hit the mainstream papers before the ink was dry on the journal article?
     I asked my DH this question and he answered, “Follow the money.” Good idea; no, a great idea. This is what I found.
     The researchers received a grant from National Cancer Institute, which is under the umbrella of the National Institutes of Health. I remember that, in March, Teri Robert and the Alliance for Headache Disorders were encouraging Migraineurs to send email to our represetatives to press the NIH for research funding for Migraine Disease. Well, it seems that they have granted our request. Not only that, but research on breast cancer, too. Two with one blow. If this is what the NIH considers valuable research, I am disappointed.
In addtion, the authors suggested hormone treatments for Migraineurs:
Although not typically used as a first-line treatment for menstrual-associated migraine, hormonal treatments, particularly those administered during the hormone-free week of oral contraceptive users, may have a beneficial effect on female migraineurs unless there is a contraindication for estrogen supplementation.

In light of this statement, it is important to note that Lucas, one of the authors, has a connection to GlaxoSmithKline, Merck, Pfizer, Ortho-McNeil. Each of these drug manufacturers make either medications for Migraine (GlaxoSmithKline, Merk, and Pfizer) or oral contraceptives (Ortho-McNeil). Interesting association. Readers can form their own conclusions.

 Study results

Mathes et al. stated:


Our results suggest that a history of diagnosed migraine may be associated with a reduced risk of breast cancer in postmenopausal women and particularly with a reduced risk of ER+ tumors. These reductions were observed in women with either IDC or ILC tumors and did not vary by history of prescription migraine medication use or age at migraine diagnosis.

The big question is as to the reason why there is an association between Migraine disease and lowered risk of breast cancer.  The authors first established that incidence of migraine attacks is associated with changes in estrogen levels (menses, pregnancy and menopause). They then noted “the well established postive association between endogenous circulating hormones and risk of hormone receptor positive breast cancer.  Therefore,

…it is plausible that migraine is associated with a reduced risk of IDC [invasive ductal carcinoma] and ILC [invasive lobular carcinoma] through hormonal pathways. Several studies have observed an association between hormonally associated events (i.e., menarche, menses, pregnancy, and menopause) and migraine frequency and severity.

What do the statistics mean?  

Statistics are peculiar. It all depends on how they are portrayed. Researchers can make a smal number look big. For example, 30 is a pretty big number, but .3 is a small number. Researchers can make .3 look big by changing it to 30%. Now the number looks big, but it really is small.
Now, what does 30% less risk mean? Thirty percent less than what? I have to know my baseline. My current lifetime risk of breast cancer is 10%. Now that I have Migraine Disease, I can lower it by 30% to 7%. Not a huge decline, in my book.

Are the results believable?

To me, this line of reasoning is not believable. For this line of reasoning to be accurate, the incidence and frequency of migraine attacks must be associated with lower circulating endogenous hormones. The authors do not show that this is the case. In fact, in the introduction, they stated that rather the withdrawl of estrogen precipitated a migraine attack and that stable estrogen levels are “inversely associated with migraine frequency.

In addition, every woman experiences these types of estrogen fluctuations. But not all have Migraines nor do all get breast cancer.

Headache experts are also dubious of these results. Dr. Ellen Drexler is one of them. The associate director of the Division of Neurology at Maimonides Medical Center explains:
 Migraine brains are more sensitive to many exogenous and endogenous factors, of which falling estrogen levels are an important one for many female migraineurs. However, female migraineurs are not known to have consistently lower levels of estrogen than are non-migraineurs. [as cited in 2]

Authors Mathes et al. have established that there is some kind of relationship between Migraine disease and breast cancer. Despite what they claim, hormones are probably not the cause. What is the bottom line? Is this information helpful to women who are at high risk for hormone sensitive cancer? Dr. Len Lichtenfeld, deputy chief medical officer of the American Cancer Society, says no. He stated:

There is a decreased risk for women with migraines to develop breast cancer. But in practical implications — what should a woman do differently — there is no action a woman or her health-care professional would take as a result of this report.

[1] Mathes, R. W., Malone, K. E., Daling, J. R., Davis, S., Lucas, S., Porter, P., & Li, C. (2008). Migraine in postmanopausal women and the risk of invasive breast cancer. Cancer Epidemiology, Biomarkers, and Prevention, 17, 3116-3122.
[2] Reinberg, S. (2008, November 6). Migraine might lower breast cancer risk. HealthDay. Retrieved December 4, 2008 from http://www.healthday.com/Article.asp?AID=621050


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I intended to post this a while back, but something got in the way :O!

Megan Oltman’s post about this was music to my ears. I have been looking for an answer to my friends’ inquiries about my health that would be upbeat, but wouldn’t dismiss or invalidate my illness. I usually swing from one extreme or another: “I am fine”, which is a lie or by saying, “Terrible” or “Yuckky” even if that is not entirely the truth. So, as well as possible fits like a glove!
As well as possible: My garden is beautiful (even if I didn’t pull any weeds today); movies make me laugh (Ledgend of Bagger Vance); my hubby is very understanding; I am making progress on the socks I am knitting (I LOVE to knit socks, but that’s another show); and I got some editing work done. That is a long list! So, be as well as possible (AWAP).

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