AHDA HeadNotes

Migraine and Headache Comments from the Petition

We're currently working toward Congressional hearings to bring out into the open the facts about Migraine and other headache disorders, including their resultant disability, stigma, suffering, inadequate treatments, and federal neglect.

When you sign the petition, you also have the opportunity to make a comment to go along with the petition. We've been reading these comments, and to say that we've been touched by them would be an understatement in the extreme.

This morning, without disclosing any names, we want to share some of those comments with you:

"17 years of constant headache...sudden onset...severe headache...headache every day since...I was 35 at the time...life changing"

"I have suffered from Migraine headaches for more than 26 years. Due to Migraines, I left active duty military, I have missed out on much of my daughters' lives growing up, I have placed un-due stress on my marriage and have been on full disability for the last four years. This is not living."

"I have a 7 year old daughter who suffers these horrible migraines every 2 weeks. We were told there isn't enough research being done on young children and migraines. We are crying for help.."

"i suffer from migraines and have over 10+ years--i have suffered a stroke from them--i also live with a migraine every day to some degree or other. i have days where i live on my couch away from my life. i have seen numerous drs no one can help me."

"Signing this with a migraine, hoping someone we elected will listen to us for a change."

"As someone who was given a diagnosis of an intractable, literally constant headache that will not respond to any curative treatment, I beg of you to help in any way you can."

"My father suffered from cluster migraines. In 1980, he chose to end his life at age 52 rather than live with these headaches any longer. 32 years later and there are still no good answers."

"my husband is a military soldier with ptsd, and migraines.. i myself have cluster migraines. Day to day life is rough to say the least."

"I have suffered with migraines since age five. I am now sixty-two. I have lost precious time from school, family/friends, and work due to this debilitating disorder. I have been told "it's all in your head", "just shake it off", and "it can't be that bad"! I have tried every new migraine drug that comes onto the market; many of these with terrible side effects. I have spent much time and money at doctor's offices and hospitals. I was promised by doctors that once I reached menopause my migraines would disappear. This did not happen in my case. I have also experienced mini strokes due to migraine, which are evident on imaging. I have come to the conclusion that I am a "lifer"! I strongly support this petition! A migraine induced stroke could end my life at any moment!"

"I was forced to seek social security disability at age 45 for migraine. I have now been on disability for over 18 years. I never realized my full potential in earnings nor did I really utilize my college education. Indeed, I was forced to declare bankiruptcy and will probably spend the remainder of my adult life on public assistance, food stamps and HUD housing assistance to augment my Social Security Disability income. The financial loss includes lost taxes on a professional income, loss because of bankruptcy and a loss to the Nation in public assistance to support me that includes almost 20 years of medical costs for migraine drugs at between $1200 - $2000 per month!"

"PLEASE, PLEASE, PLEASE increase funding for research and clinical trials to find the cause of CLUSTER HEADACHE attacks. Over the past 20 years, I have been to countless doctors and tried over 35 ineffective medications with horrible side effects. I just want to be able to live and enjoy life rather than dreading with fear my next CLUSTER HEADACHE attack."

"Migraine all day every day and they can't help me nobody understands..."

"I have not shut myself off from life, my head pain has shut life off from me. I would hate to see another person go through life as lonely and afraid as I am at this very moment."

"After suffering with migraines for the past 45 years I know how they touch so deeply your personal life, family life and work life....affecting each dramatically, though in different ways."

"It is necessary for an awareness of the debilitating, insidious nature of migraines. They steal ones life away. The dizziness, nausea, sensitivity to light and sound, fatigue, and of course the pain. The inability to make any plans. The destruction of relationships. It is the time for answers and solutions for all of us that suffer on a daily basis!"

"So many of us have to stop working and live on government aid because of headache disorder disabilities. With lack of education, funding for research, and new treatment options, we are have no other option than to continue living this way. Give the nation education, research funding, and new treatment options, and I guarantee that you will be shocked at how many Americans will benefit and be able to go back to work, thus paying back into the system. Help us so that we can help you."

"Many more people are suffering than anyone knows as you can't see it like if someone had a broken arm for example. Millions of us are suffering in silence and only more research will bring and end to our problems..."

We hope sharing these comments gives you a better view of why we're fighting for Congressional hearings, why AHDA advocates will be on the Hill on March 27 to personally present the petition to members of Congress.

If you've signed the petition, thank you. You've stepped forward to help the people who wrote those comments and millions of other people. If you haven't signed it, we hope you'll take just a minute to do so now. It's very quick and simple. Just follow the link and enter your first name, last name, email address, and ZIP code. Please be sure to enter your full name rather than initials so your signature will be counted.

One more thing you can do to help is to ask all your friends to sign the petition, whether they have Migraines or headaches or not. Send the link to everyone in your email address book, post it to your Facebook page, Tweet it, share it any way you can.

SIGN THE PETITION, PLEASE.

With our sincere thanks,
Bob Shapiro
Bill Young
Brad Klein
Teri Robert

Cincinnati Children's Awarded NIH Grant for Migraine Trial

Andrew Hershey, MD, PhD, and Scott Powers, PhD, who co-direct the Headache Center at Cincinnati Children's will be leading a five-year study to be conducted at up to 40 sites across the United States. The study will be funded by a $12 million grant from the National Institutes of Health. The AHDA asked the study team to talk about the grant here since it relates to AHDA activities to increase NIH research funding. Here are the points they chose to share with us...

(1)  How Research Comes Through the NIH:
Research is submitted to the National Institutes of Health (NIH) through many different institutes.  Not only are there a variety of institutes, but there are a variety of types of grants that one can pursue.  Research comes through the NIH through research training and fellowship grants (T award series), research project grants (R award series), research grant collaborative agreements (U award series), research program project or center grants (P award series), career development awards (K award series), and resource grants (various series of awards).  The opportunities are oftentimes limitless, while at the same time, a conundrum of where one should begin.  Depending on where an investigator is within their career and what the investigator is hoping to accomplish, the approach taken and grant type chosen will vary.

(2)  How Hard it is to get a Grant:
In the current economic climate, while the available funding money at times seems frozen, there is a plethora of pathways and many avenues of research presented through grant submissions.  The NIH is presented with thousands of promising grants each year by distinguished investigators and meritorious research teams.  Many of these grants go unfunded each year.  Earning a grant in today’s economic climate is a difficult task.  One with persistence, zeal, and a team of great supports would consider themselves lucky to reach the full-funding, finish line.  It is a sincere trial to earn grant funding.

(3)  How We Got this Grant:
This grant was originally submitted as an R01 research project in 2010.  With a promising score from the NINDS, we were asked to revise and re-submit as a U01 trial, a research grant collaborative agreement with the NINDS.  At least 3 years of thought and planning went into making this grant a reality.  During the planning stages, such efforts as attending Headache on the Hill in Washington, DC; consulting the top headache specialists in the nation; weekly conference calls between the data coordinating center and the clinical coordinating center; and team development and editing of documents helped to keep us in the running for a successful submission.  With the recommendation to revise and resubmit, we diligently worked to respond to reviewers and aim at perfecting our original submission.  We had an overall team meeting in Cincinnati connecting both the University of Iowa and the Cincinnati Children’s teams and tackled the grant reviewer’s responses one by one.  Following that productive, in-person, meeting, each team assisted one another in preparing our grant re-submissions.  The solid and well-concerted efforts within our teams and between our teams were of both promise and hopefulness.  We really believed in our finished product.  We had faith in the support and guidance of headache specialists across the nation.  Paramount was the sentiment that this trial was both necessary and urgent, a true need to help serve the millions of children and adolescents who suffer from headaches not only in the United States, but around the world.  The feedback from headache societies, groups, and specialists, even the NINDS, in their review of the initial grant submission, indicated this necessity.  Our goal was to develop a grant that would respond to this void in evidence-based practice.  Answering this call was the forefront of our work over the last three years.  We received this grant by working together between our teams, as well as with headache societies, groups, and specialists, even the NINDS, as we responded to their revision requests for this pivotal project.  We were honored to hear that the NINDS study section found merit in our refined approached to this international need to relieve headache and migraine pain in children and adolescents… a hope to help change the outcome and facilitate young headache suffers to develop into fully, functioning healthy adults; not missing out on work and life to deal with on-going migraine pain.

(4)  How Big this Grant is:
This grant is an 18 million dollar award ($12 million to the Clinical Coordinating Center at the Headache Center of Cincinnati Children’s Hospital Medical Center and $4 million to the Data Coordinating Center at the Clinical Trials Statistical and Data Management Center of the University of Iowa) from the National Institutes of Health, specifically the National Institute of Neurological Disorders and Stroke.  It will be the first grant of its kind; hoping to determine the best medication for preventing migraines in children and adolescents by comparing amitriptyline and topiramate (two medications often prescribed by headache specialists to prevent childhood migraine).  With this grant, over five years, Cincinnati Children’s Hospital will train and reach out to 40 research sites across the United States to help answer this question on a national front.  Overall, this study will involve 675 children and adolescents between the ages of 8 and 17.  With this grant comes the opportunity to lessen the $36 billion national economic impact of migraine, as more than six million children and adolescents suffer from migraine in the United States.

(5)  What this Grant may Accomplish:
This grant may elucidate which preventative medication works best to prevent migraine in children and adolescents.  It would not only lead to the development of an evidence-based treatment paradigm, but economic relief for society – generating a potential impact within schools, family life, and the overall growth and development of youth dealing with migraine.  Since the negative impact of having migraines on quality of life is similar to cancer, heart disease, and rheumatic disease within children, successful completion of this trial could profit today’s youth in many positive ways.  Amitriptyline and topiramate have long been used in adults, but there has been little research in children.  By comparing these preventative medications within this trial, headache specialists would have a better understanding of their (the medications) effectiveness in achieving relief of migraine pain in children and adolescents.

(6)  What this Grant could do for Headache Medicine and for Patients:
This pivotal project could provide a pathway for headache medicine in the treatment of migraine in children and adolescents.  Not to mention, the relief for patients and their families.  Some patients have a daily, continuous headache that never goes away.  If one or both of these preventative medications is found effective in preventing migraine headache, a significant burden would be lifted from the shoulders of this patient and their family.  Clinician’s world-wide would have an evidence-based approach in the treatment of pediatric migraine.

(7)  What Patients can do to get involved in this Grant:
Our greatest hope is that patients will get involved in this trial.  We will need 675 patients between the ages of 8 and 17 to complete this study.  Any patient suffering from at least 4 headaches per month is eligible for this research project.  There will be 40 sites across the United States where patients can go to be screened for enrollment.  If they meet the study criteria and agree to participate, we would be happy for them to be involved.  To be involved, they would need to keep a record of their headaches on a daily headache diary, take their study medication each day, answer check-in phone calls and/or come in for study visits (depending on the time-point in the study), and complete questionnaires at their visits.  Our overall goal is to get many patients who suffer from migraines across the various research sites within United States involved in this trial.

(8)  Receiving this Grant is a Big Step, Headache Still has a Way to Go – How to Bridge Funding Gap:
Bridging the funding gap is just as daunting a task as building that first, well-constructed bridge in history.  There are many great research ideas out there, but not all of them will appeal to the funding supporters.  Dollars are limited during this time period.  Ideas are many.  One major focus could be on gleaning which projects would have the most profound impact within the disease populations of society, what teams can develop a proven track record of conducting research within these populations of people, and how can the dollars be divvied out in such a way to support the success of study patients and their families, the progression of the careers of those conducting the trials, and the capabilities of the overall funding sources to thus support the greatest number research projects at any one block of time.  A healthy marriage of both economics and health care research could bridge this gap; however, as a body of scientists, no one wants to be floating down-river without toll to the other side.  Working as teams of scientists might make bridging this gap achievable and allow for an overall encompassing, solid research project, one of exceptional promise and fortitude to influence the health care community upon completion.  Writing economically-friendly grants will also leave funds in the coffers of institutes, societies, and funding bodies to serve other scientists and thus support on-going improvements within medical treatment, health care, the field of science itself, and most importantly, society overall.

Janelle R. Allen, MS,
Andrew D. Hershey, MD, PhD, FAHS,
and Scott W. Powers, PhD, ABPP, FAHS
on behalf of The CHAMP Study team (Childhood and Adolescent Migraine Prevention Study). 
MS Allen is a research coordinator, and Drs. Hershey and Powers are Co-Directors of the Headache Center at Cincinnati Children's Hospital.

Help Sustain Progress in Headache and Migraine Research

In May, 2010, the NIH held a planning workshop to develop strategies for headache research and to identify consensus areas for focused research. Now, 18 months later, the meeting proceedings and recommendations of the workshop have finally appeared in a report, “Opportunities and Priorities for Headache Research." A brief 2-page update attached to the report also details federal responses to date to the Workshop discussions and recommendations.

These responses include:

1. NIH funding of a large comparative effectiveness clinical trial to study pediatric migraine preventative medications. This trial addresses a major problem never before studied. (It will be the topic of an upcoming full HeadNotes entry.)
2. Sponsorship of five further meetings. Three workshops were devoted to pain conditions other than headache (chronic fatigue syndrome, TMJ, and vulvodynia). The fourth workshop, a 5-hour conference held last June 1st, was devoted to “Advancing Translational Headache Meeting”. The fifth workshop on grant opportunities and writing skills was also held in June at the American Headache Society Annual Meeting.
3. Announcement of the FDA “Analgesic Clinical Trial Translations, Innovations, Opportunities, and Networks (ACTTION). This is a public-private partnership initiative to improve and expedite development of new analgesics.
4. Announcement of the “NIH Pain Consortium Centers of Excellence in Pain Education.”  This initiative is intended to develop curricular tools to facilitate pain education for health professionals at multiple levels of training. 
5. Announcement of an initiative to develop common data elements (CDEs) for standardization of data collection across clinical trials for headache disorders. This initiative is intended to permit greater ease of design, execution, and interpretation of clinical studies. 

These initiatives and developments are very welcome and represent significant progress towards improving the context and environment for performing research.

However, what is still lacking is a commitment by NIH, aside from the pediatric trial, to increase funding of actual research on headache disorders. More than sufficient concrete suggestions are contained in the workshop report to form the bases for NIH programs that are critical to jump-starting headache research and training. Where are the specifically funded initiatives (e.g. Request for Applications, Program Announcements) to follow-through on the outcomes of the workshop? A tremendous amount must be done and too few resources are currently devoted to the effort.

Furthermore, why did it take 18 months to issue the brief report from the May 2010 Workshop? Nothing in its contents explains why it could not have been available more than a year ago. Equally puzzling, the June 1st translational research workshop was almost 6 months ago and no report is available for that workshop either. When the data for 2011 NIH funding are released in February of next year, we will see whether the actions and inactions of the past year have appreciably changed the level of research funding for migraine and headache disorders.

In the meantime, we need to keep our concerns directly before our elected officials who have oversight of NIH.

We are seeking a congressional hearing, the very first of its kind, to air publically the facts about headache disorders, including their resultant disability, stigma, suffering, inadequate therapies, and federal neglect. We are asking you to sign a national on-line petition at this time.

We will present the signed petition to members of Congresss to urge them to hold such a hearing. Please sign the petition and ask everyone and anyone you know that cares about someone suffering with a disabling headache disorder to sign as well. Only with your help can we expect to have a congressional hearing scheduled and have the current state of inadequate research publically recognized and addressed.

Click here to sign the petition now.

Thank you very much in advance,
Bob Shapiro
President, Alliance for Headache Disorders Advocacy

Botox Games: Insurance Company Strategies to Make the Chronic Migraine Patient Lose

In late 2010, the FDA approved Botox for chronic Migraine. In February of this year, it became possible to code and get Botox paid for by Medicare, and insurance companies followed suit a few months later. But they did it reluctantly, and are doing everything they can to deny, delay, postpone, or otherwise impede chronic Migraine patients from getting the only FDA-approved treatment for their disease.

With traditional insurance companies, the criteria for qualifying for Botox are 1) – having chronic Migraine (more than 15 headache days per month), and 2) – failing 3 or more preventives in at least 2 classes (antidepressant, seizure medicine, or blood pressure medicine).

I know the criteria, and I don’t play games and submit patients I know don’t qualify. My patients are usually so overqualified for Botox they should have tried it last century. I have been collecting chronic Migraine patients for 20 years, and many have tried 20 or 30 preventives.

But, unfortunately, Botox is expensive. The drug itself runs about $1100 for the right amount of units, four times a year. So the insurance companies:

1. Require the doctor to fax tons of records, including all the clinical information from previous physicians, lab & blood tests, medications tried, all clinical information from our facility, and sometimes an additional letter of medical necessity. We send about a half-inch of medical records to most insurance companies.
2. Don’t read the faxed records. We summarize the record, and use the required verbiage: “The patient has chronic migraine. They have headaches more than15 days per months which are linked to Migraine (the exact wording of the FDA approval). They have failed adequate trials of these antidepressants, these seizure medicines, and these blood pressure medicines, all of which are proven to be effective against Migraine.” They still don’t read it!
3. Lose faxed material. (Our record is three consecutive lost faxes on the same patient.)
4. Require the same material faxed for each and every treatment, and require us to prove once again the patient still has chronic Migraine. This gives them an opportunity to once again not find the relevant information they were eventually able to find the last time, or lose the records again. If we have to get a patient re-authorized, we have to re-fax everything we previously faxed for the initial authorization, as well as any other recent office visit notes and/or Botox office visit notes with procedure notes.
5. Require us to show a percentage change in headache frequency or a reduction in number of hours of headache per month after two injection cycles. So a patient does not get to decide if he or she had meaningful headache improvement. If your daily headache goes from an 8/10 to 3/10, but you don’t have headache-free time, will this be good enough?
6. Jack up the co-pays. Everybody is experiencing increasing co-pays. Not only might the patient have a co-pay for the procedure itself, which is then added to the regular office visit co-pay, he or she might have a co-pay for the drug through the specialty pharmacy. But with Botox, this is taken to a new extreme. What insurance companies have done for other medical treatments was just practice for what many of them have done for Botox.
7. Delay decision until after the procedure. Some insurance companies won’t make the determination of whether you meet criteria until after the procedure has been performed. The insurance company not only wants to know how much our facility bills for the procedure, but how much we charge for the drug itself because, ultimately, we have to use our stock, which we have purchased, and bill for it. Imagine: “Have the procedure, and then we will let you know if we will pay or if you are on the hook for over a thousand dollars.”

Is there a vendetta by the insurance companies against chronic Migraine patients, because they are not worthy of an expensive treatment? I don’t know, but that is what it feels like to me.

I think part of the strategy is to make it unappealing to take care of headache patients. If the number of doctors willing to do this procedure is reduced, maybe insurance companies can increase their profits. The AHDA must defend the practice of headache medicine.

William B. Young, MD, FAHS, FAAN
Vice President, Alliance for Headache Disorders Advocacy
Jefferson Headache Center; Philadelphia, Pennsylvania

A Third Space for Migraine Patients

by William B. Young, MD:

When my daughter was about to go to college, I happened to see a patient who had just gotten her master’s in college counseling.  I asked for one piece of advice for my daughter.  She answered that based on the literature, the kids who have only classes and dorm activities were much less likely to be well adjusted and successful than the kids who participated in at least one other activity.  It didn’t matter what that third activity was, just as long as it involved something that was meaningful to them.  Whatever it was, it was tremendously protective against stress and social isolation.  For my daughter it was synchronized skating, and when she dropped out in her sophomore year because of scheduling conflicts, she became much more stressed and unhappy.

It recently occurred to me that this is a good model for everyone, really, but especially for chronic migraine patients.  Migraine disease is so consuming, and has such an impact on family and work relations, that finding this third-space sanctuary becomes an ever more critical inoculation against becoming overwhelmed.  One of my patients who has severe chronic migraine that at times leaves her unable to work, would sing in synagogue.  I thought that this was not the wisest thing for someone with a migraine, and she admitted it could temporarily worsen her migraine.  She pointed out that it was only for 1 hour a week and this is what she loved to do, and she could pull it together in trade for the joy and sense of normalcy it gave her.  By the way, she is now headache-free, got another degree, and is teaching and working.

I think that finding a good third space can be very hard for a person with bad migraine, but that finding something is truly important. I think it works best when it requires interacting with people outside of work or home and consumes someone in such a way that it becomes very hard to focus on pain.  I don’t think it needs that much time, and if an hour a week is all you can find, that is fine, if you have found a true sanctuary. Find something, try it on and if it doesn’t fit, keep trying until you find something meaningful. Fight for one tiny, special activity that takes you away from the places in your life that the pain resides. Keeping a seed of contented normalcy somewhere in one’s world is critical, and provides hope in the darkest times.

I say these things, and I believe them.  But I really don’t have any scientific evidence to prove them.  Persons with diabetes are supported, based on scientific evidence, with services like dietary consults, and encouraged to exercise.  Surely persons with severe migraine disease deserve scientific study of social strategies that help, and then support to get them. The Alliance for Headache Disorders Advocacy is dedicating to doing these things.

by Sarah Gomez, PsyD:

Migraine patients often come into my office and talk about how their lives have significantly changed due to their frequent pain. They discuss feeling that their world has been taken from them, how they used to do so much more, generally feeling a myriad of emotions in regard to their disease.  They mention anger and frustration at their decreased capacity to function, sadness and loss about missing social and family gatherings, feeling misunderstood and often guilty about their inability to participate in activities, and frequent dissatisfaction about the state of their lives. They worry about when the next migraine will come, how much pain may be expected, and what associated symptoms may arise. By and large, migraine sufferers are often consumed by feeling completely out of control of their own lives, experiencing the migraine as the entity in power.

Time and again, the migraine experience has the capacity to greatly diminish joy and happiness is in one’s life.  Additionally, depression and anxiety are common to migraine sufferers, making it doubly challenging to hang on to anything wonderful, bright, and good in life.  The pain and isolation that migraines produce commonly rob migraine sufferers of the things they enjoy most.  This is tremendously taxing; managing both the symptoms that migraines bring with them, as well as what they take away is exhausting. In psychotherapy we spend a lot of time processing this complex experience, as well as exploring ways to counteract the clutches of the disease.

My suggestion, as a psychologist and echoing the sentiments of the college counselor, is to keep up with something that brings you joy.  In appropriate moderation, do something that you love.  Try to keep the migraines out of one small aspect of your life.  See if you can identify and nurture a third space that is yours alone.  Granted, the pain may come, or be exacerbated by your activity, as the patient above described, but the price may be worth paying. To own something, to take something back in your life, to exert a sense of control over the obstinate migraine may provide a payoff that’s twofold. You are in charge of yourself for that moment in time, and secondly, joy enters back in your life! It sounds almost too simple, I know. However, recent research suggests, and my experience supports, this is often a major step for many patients toward feeling some sense of normalcy again. Increasing the sense that you can do something may make a world of difference. Over time, patients who become dedicated to this concept seem to develop and maintain migraine health better than others.  Of course, finding a third space isn’t a quick fix or a surefire way to reduce the pain, but it’s a little taste of the life you’re striving for. 

Little research has been done on social and psychological factors that have the ability to aid and hinder the migraine experience.  It is imperative for patients to feel that they have some tangible way to be involved and manage their health aside from simply taking a prescribed medication. The Alliance for Headache Disorders Advocacy supports this approach and is dedicated to working toward further understanding of these methods.

William B. Young, MD and Sarah Gomez, PsyD
Jefferson Headache Center; Philadelphia, Pennsylvania

Representative Michele Bachmann Casts Light on the Neglected Burden of Migraine in America

Burlington, Vermont – July 20, 2011 - US Representative, and presidential candidate, Michele Bachmann reported yesterday that “I experience migraines that are easily controlled with medication," and that “…my ability to function effectively has never been impeded by migraines and will not affect my ability to serve as commander in chief.” Representative Bachmann’s reassuring remarks require no further clarification; several distinguished US presidents, including Ulysses Grant and probably Thomas Jefferson, suffered severe migraine attacks during their terms in office.

However, Representative Bachmann’s candid disclosures bring to public awareness the stark fact that, for millions of other Americans, migraine attacks can be severely disabling, as well as a compulsory undisclosed private matter due to the widespread stigmatization of the disorder.

This year nearly 1 in 5 Americans will experience some form of migraine attack, and 1 in 25 Americans will have headaches at least 15 days per month. Available migraine therapies are few in number and often limited in effectiveness and tolerability. Over the past 49 years, only one innovative drug, discovered and developed specifically for migraine treatment and given priority review by the FDA, has been approved for clinical use. Since breakthrough drugs are typically discovered by publicly funded research investigators, rather than within pharmaceutical company laboratories, it is alarming that US federally funded migraine research totaled only $15M in 2010. The World Health Organization estimates that migraine is responsible for more lost years of healthy life in the US than multiple sclerosis, epilepsy, ovarian cancer, and tuberculosis combined, yet these disorders received more than 45 times more research funding from the National Institutes of Health than migraine last year.

In light of the pivotal role for NIH funded research in the discovery of novel drugs, the Alliance for Headache Disorders Advocacy strongly urges Congress to prioritize marked increases in federal research funding to understand the causes of migraine and to discover novel effective treatments for it.

The Alliance for Headache Disorders Advocacy is comprised of ten not-for-profit national and regional member organizations advocating on behalf of patients with migraine and other headache disorders. http://www.allianceforheadacheadvocacy.org/

Contact:
Robert E. Shapiro, MD, PhD
robert.shapiro@uvm.edu 

Why the Disparity in Attention and Support for Migraine and Headache Disorders?

While I was attending Headache on the Hill and the 53rd Annual American Headache Society Meeting in Washington, DC, my attention and nationwide media coverage shifted to the weekend bike race taking a place across the country. Several of my friends were riding in the MS150, a widely publicized event raising money for multiple sclerosis. While I know only one person who suffers from MS, I am personally asked each year to support this cause and I do, not because MS affects my life but because my friends ask me to donate. Then it occurred to me that I have never asked a friend to donate to the cause of migraine research nor have I ever participated in a large-scale fundraising event for headache disorders even though I am a very active advocate.  This got me thinking about how we can become more successful and effective at supporting the headache disorder cause.

According to the National Multiple Sclerosis Society, approximately 400,000 Americans have MS, and every week about 200 people are diagnosed. World-wide, MS affects about 2.5 million people.  In America alone, 60 million people are believed to be affected by migraine so why is there such a disparity in attention and support for these diseases? I believe the responsibility resides squarely on the shoulders of patients like myself, as well as physicians caring for patients with headache disorders. That’s right, people like you and me are to blame. I’ve arrived at this conclusion after listening to and participating in discussions over the last several years regarding how we can best champion the headache disorder cause. While some of the talk in my opinion is not much more than finger-pointing, whining and complaining, some of the more uncomfortable points have validity. Collectively, we have not pulled together to the best of our abilities to solve these problems nor have we maximally fulfilled each of our roles.

As patients, we have not done a good job of imploring those around us to take up our cause, nor have we effectively taken up our own cause. When was the last time you donated to a headache organization or asked someone to make a donation on your behalf? Have you ever attended a conference for patients with headache disorders? When calls to action for advocacy alerts go out from Alliance for Headache Disorders Advocacy with forms that take approximately 1 - 2 minutes to complete, a scant 1,000 – 2,000 people respond, and the largest headache organization in the US has a mailing list of only 16,000 supporters. When we know millions of patients are suffering, the dismally low numbers of those responding or participating are very discouraging to the physicians, researchers, and patient advocates working hard to make positive changes for us all and I dare say I understand why we are not making more progress. Patients can do much more, despite our illness, to support the organizations that have formed to provide patient education, advocate or support research on our behalf. We can also do much more to involve our friends and families in awareness, fundraising, and advocacy activities. We can and should hold each other accountable. Diseases with many fewer patients have hundreds of thousands more people supporting their cause. So what do we have to say for ourselves? Every single one of us has some way in which we can contribute no matter how small. We cannot let our illness and disabilities serve as an excuse for complacency and inaction. What we have now is not good enough, and it is time we change that.

On the physician side, we patients would ask that you see your patients as extremely capable and necessary champions of your work. We ask that you not write us off as being too sick to shoulder the burden with you, even though you see us at our lowest moments. Additionally, when we are too ill to manage our daily lives or forward the headache disorder cause those standing helplessly by our sides would feel empowered if called upon to take action on our behalf. Please remember each patient has at least one if not more persons in their lives that are suffering along side them and feeling powerless over a disease. Give these caregivers and family members direction and connect them with appropriate resources so they too may become champions of the cause, just as you should each patient coming into your practice. As for researchers, keep sending out announcements about your work, and don’t forget to send them to online patient groups. We need to hear about your ongoing good work to keep headache disorders in the headlines. And any one of these groups can write a blog and help shine a light on the cause from our varying perspectives.

The next order of business is to collaborate, collaborate, collaborate! I am proud to serve on the board for the Alliance for Headache Disorders Advocacy because we are comprised of ten different organizations working on various areas of the headache disorder issue, but yet we all come together with our resources to bear once a year to support legislative actions that forward the headache disorder cause for all. I challenge us to do this more often. I believe we need more collaboration, and I urge us to draft a 10-year strategic plan to end the suffering from headache disorders outlining the roles individuals and organizations can play. There is room at the table for each one of us and a strategic plan to end the suffering from headache disorders in the US could benefit us all no matter what our interests.

If you have not already done so, please connect with a headache organization of your choosing.  The mission statements and contact information are listed below. Patients, each one of us needs to do our part if we want our treatments and futures as headache patients to improve. Physicians, believe in us, see us a valuable partners in this cause, and be sure anyone coming into your office gets connected to a headache organization.  Please also consider contacting AHDA about writing a blog for the cause.  We need to hear from you! 

Together we can make a difference much faster than any of us going it alone!

• Alliance for Headache Disorders Advocacy is comprised of nonprofit organizations who are vitally concerned about the health of patients with headache disorders including migraine disease, cluster headaches, chronic daily headache, new daily persistent headache, tension-type headaches. All headache disorders.  The AHDA is dedicated to advocacy efforts that can result in better treatment for all headache disorder patients. http://www.allianceforheadacheadvocacy.org
• American Migraine Foundation’s mission is to support innovative research that will lead to improvement in the lives of those who suffer from migraine and other disabling headaches. http://www.americanmigrainefoundation.org
• Migraine Research Foundation is dedicated to ending the debilitating pain of migraine. We fund innovative research to further the understanding of the causes and mechanisms of migraine, to develop improved treatments for sufferers, and to find the cure.  http://www.migraineresearchfoundation.org
• Miles for Migraine is a concerned group of medical, allied health, and laypersons who have recently formed a non-profit group to inform the public about the serious underfunding for research in the prevention, causes, treatment, and cure of headache disorders, provide website links about various headache organizations for further information, and create a fun outdoor event that especially welcomes those who suffer from headache disorders, and their families, friends, and all those who support them through their pain. http://www.milesformigraine.org
• National Headache Foundation exists to enhance the healthcare of headache sufferers. It is a source of help to sufferers’ families, physicians who treat headache sufferers, allied healthcare professionals and to the public. The NHF accomplishes its mission by providing educational and informational resources, supporting headache research and advocating for the understanding of headache as a legitimate neurobiological disease. http://www.headaches.org

Bray Patrick-Lake| President and CEO
PFO Research Foundation
www.pforesearch.org

Migraine and Headache Treatment: Entering the Botox Era

A few days ago I was asked to give a talk at a nearby prestigious university – grand rounds in fact, in the department of plastic surgery on Botox for chronic migraine.  Now, let me explain, being asked to give grand rounds is a great honor, the kind of thing you put in your CV, and it has special attraction in this case because we are a little competitive with the institution who invited me – and I know if they had anyone there who was close to as qualified as me, they would have chosen them.

After some deliberation I responded:

I would be happy to speak about chronic migraine, and botulinum toxin use in the context of a very complex disease.  I believe anyone injecting toxin for chronic migraine should be prepared to manage the full extent of the disease, including recognizing mimics, understanding and prescribing alternative treatments, diagnosing medical and psychiatric comorbidities, treating these and referring if appropriate. They should also be prepared to manage the abortives, and recognize and treat medication overuse. If this is the lecture you want, I'll be glad to give it, but I don't think physicians without a deep knowledge and interest in this disease should be treating it.

I doubt my offer will be accepted.

In medicine, procedures pay much more than cognitive work such as talking to a patient, understanding their disease, understanding the impact of the disease on the patient, its’ triggers, and finding the abortives, preventives, and non-medicine treatments that work best for the patient.  What I hear in this request is that the plastic surgeons are suddenly interested in treating migraine because they might make some money doing it.  There are many neurologists and primary care doctors, and even a few ENTs who have spent years learning about migraine, and who are therefore  much more appropriate people to perform this procedure, and who are not just in it for a buck.  Are we going to see fly-by-night operations spring up, run by people who could care less about treating the person with migraine, and just want the opportunity to do the little piece that makes money, while letting everyone else (or nobody) do the rest of the work?

On the other hand, the Botox era offers the chance to bring more people into the practice of headache medicine if it is not so very difficult to keep a practice afloat in this field.  Ironically, since patient pain and suffering is apparently not enough, as treatments become more expensive to insurance companies and to government, it also could bring welcome attention to our field,  putting emphasis on preventing the chronification of migraine and learning how to measure long term treatment outcomes.

We need to think about the future of headache medicine.  I am not sure what the answers to the challenges of the  Botox era are, but advocacy organizations like the AHDA, and groups like the American Headache Society will need to actively confront them.

William B. Young, MD, FAHS, FAAN
Vice President, Alliance for Headache Disorders Advocacy
Jefferson Headache Center; Philadelphia, Pennsylvania

Headache and Migraine Medications: When Too Much Is Not Enough

What would you call it when someone with headache becomes trapped in a vicious cycle of an increasing number of attacks, needing more and more medicine to stop them, with a sinking feeling that the next headache or migraine is fast on the heels of the last pill swallowed? When ever stronger medicine is sought to halt the attacks, but this only seems to fuel the fire? When someone becomes trapped by headache, and might even start behaving like he or she is addicted to migraine medication?

A number of labels have been attached to this phenomenon over the years. They all seem to have negative connotations: “rebound headache” sounds like a misguided relationship (and could apply to a withdrawal headache—a different thing), “medication abuse headache” implies the patient is at fault, “medication overtreatment headache” pins the blame on the doctor, and so on. These labels may reflect what we see happening on the outside, but the real cause is not captured by them, nor is it fully known. The “accepted” term these days is “medication overuse headache;” it’s a little less blameful, but still doesn’t encapsulate the whole picture, including what could be happening biologically.

What IS happening, really? The more a person takes a medication, does it just wear off faster and faster, and are ever higher doses needed to achieve the same result, as in tolerance? Maybe, but does “medication tolerance headache” sound appropriately inclusive? What pushes someone to keep taking more and more medication, even to the point of self harm, when it’s obvious it’s an exercise in futility? That sounds like addiction, doesn’t it? Is it addiction? Traditionally “addiction” is applied to repeated behavior directed toward attaining pleasure or reward despite negative outcomes. But patients aren’t doing this for kicks, they’re trying to get relief. Some would say a better term is “pseudoaddiction,” but is it really? Perhaps it is a little more precise, but not only does it fail to describe fully what is happening, it sounds fake (pseudo), and still has that negative flavor of labeling someone as an addict.

Many old medical terms have been pushed to the wayside, some because their use became commonplace insults in casual conversation (idiot, moron, retard – these words historically referred to specific IQ levels), some because they label a patient as a disease (we don’t refer to people with epilepsy as “epileptics” anymore). So isn’t it time we updated “medication overuse headache?” 

Going back to the possible biology, some believe that repeated use of medication to relieve headache actually causes physiological changes in the nervous system which cause a person to experience migraine more readily. An animal study with sumatriptan (Imitrex) supports this. Individuals seem to have different thresholds for becoming susceptible to this, though. One person might be able to take their medication several days per week and never get worse or lose the effect of their medication, while someone else might get into trouble with just a few doses of an opioid. So what then constitutes “overuse?” One could say it is how the nervous system “adapts” in this scenario, so a fitting name could be “medication adaptation headache.” That does sound better indeed.  Another neurologist, an English professor, a Philosophy professor, and I have discussed various names and their appropriateness or inappropriateness based on where the center of blame or cause lies (see below). We wrote a paper (our Philosophy professor was the first author) in which we suggested “medication adaptation headache” should officially replace “medication overuse headache.”  We will be petitioning the Headache Classification Group to make this change.

Blame the Patient	Blame the Doctor	Mechanism-Based
Medication abuse headache	Medication overtreatment headache	Medication induced headache (maybe with type 1, type 2, etc.)
Drug abuse headache	Iatrogenic headache	Freed-forward headache
Medication misuse headache		Drug-transformed (or amplified) headache
Medication Overuse Headache		Medication Adaptation Headache

The picture will become clearer as research sharpens our focus and helps to uncover the real facts behind …. whatever this should be called! But research takes time, expertise, and funding. We all know how precious time is. All experts are at one time novices, who need to be trained by other experts, which takes time and funding!  With greater awareness of these needs and a big push to fulfill them, the landscape of headache medicine can change. You can help by letting your friends know about AHDA, writing to Congress, talking about these issues with your doctor, encouraging young scientists- and doctors-in-training you meet to take interest in our cause, and so many other ways. Be creative! And remember, too much is not enough.

Stephanie J. Nahas, M.D., M.S.Ed
Jefferson Headache Center; Philadelphia, Pennsylvania

The Art of Being a Headache Disorder Patient

Nobody studies or practices how to be a patient, but when you are diagnosed with Migraine or any other headache disorder, being a patient becomes part of your identity. You can’t hide from it, but there are things that you can do to maintain perspective and not let your headache or Migraine control you as you strive to gain control over them. Keep the following principles in mind, and the experience can be treated as part of your growth and development – even if it’s not a lot of fun.

1. Don’t let your headache or Migraine be the central part of your self-definition. Think of the various rules that you play in life. You may be a spouse, parent, friend, and member (or former member) of a specific career group. You may also be a sports enthusiast, a lover of art, a reader, a gardener, or movie fan. You may also be a headache patient, but remember that isn’t all that you are.
2. Always plan and look forward to doing things despite your limitations. If your headache or Migraine becomes too severe to follow through with your plans, you can always change them – but don’t let inactivity be the default. There is a great difference psychologically between expecting to be active and expecting to be sick. If you have nothing planned, you will probably do nothing with your time even if you are feeling pretty good. You may then be tempted to fill that void with overthinking – about your pain and the unfairness of your condition, and you know that’s not a fun thing to be doing.
3. Get excited about the task of figuring out new activities that you can do despite your limitations. Make it a challenge, and then take pride in your accomplishments. If you are working, think of ways to make yourself efficient despite your pain. If you are retired or disabled, look to the internet, books, and classes where you can develop interests without spending a lot of money doing so. The internet also offers opportunities to get involved with others who share your interests. Volunteering can be a rewarding way of using your skills and background on a schedule that may be able to be accommodating to your headache. Also, volunteering for activities that help others can take your mind off your pain and enable you to feel less like a patient.
4. Never stop asking, “What can go right?” Time is on every patient’s side. New medical breakthroughs are occurring all the time. Stay alert to new discoveries in the headache disorders field. When you hear of something new, ask your doctor whether you are a candidate for a new medication or procedure or non-pharmacological treatment. Be an active partner in your own care.
5. Guard against low frustration tolerance. Your body may not be on the same timetable as your mind. Improvement may not be happening fast enough for you, and it certainly is reasonable to question your physician about your progress and expectations regarding your course of recovery. At the same time, it is important to recognize that headache disorder is a complex biochemical disorder. Everybody’s biochemistry is different, and if you are a chronic headache or Migraine patient, you have already demonstrated that treatments that work for most people don’t work for you. One of the advantages of not making the headache or Migraine too central is that you have other things to think about while you and your doctor are working toward improved pain control.
6. When you start feeling better, it is best to ease back to normal activities. Don’t go from nothing to everything – or you risk having a setback. If your headache or Migraine is controlled, you don’t have to accomplish everything today because there are more good days ahead of you.
7. Be an advocate for yourself. The Alliance for Headache Disorders Advocacy (AHDA) wants your help and participation. Getting a note off to a congressman or senator is a good example of being active and helping yourself and others. The AHDA will contact you when your message will be most politically effective. If you have not signed up, please do so at www.allianceforheadacheadvocacy.org.

I have observed that patients who have an active orientation and who stay positive tend to have good things happen to them. It’s not a guarantee but it is a good strategy for coping – and it beats feeling depressed any day of the week.

Ronald S. Kaiser, Ph.D.
Jefferson Headache Center; Philadelphia, Pennyslvania