Updates on Advocacy

It's been nearly 2 years since my last post.  So much has happened during this time.  

I became a spokesperson for Fremanezumab. An entire production team was at my house for a day. It was exciting and a bit terrifying because I had a migraine attack. We worked around it, and I am proud of the the videos they produced. Here is one of three videos in which I appeared. It's my favorite.  

Since using Ajovy, my monthly headache/migraine days have gone from about 17 to 5 or 10. It's truly been life changing. 

I did a spot for Biohaven for "Demand More for Migraine" on my local TV station.  

I retired from my part-time job as the supervisor of reproductive health for Okemos Public Schools in Michigan.  Before I retired in June, 2020, I made sure all the lessons for grades 4 through high school were available digitally. I also did a presentation on using the Google Suite of classroom tools for the Eaton RESA in October of 2019. Little did we know at the time how prescient that instruction would be in this year of Covid. 

I volunteered to be the treasurer of the Alliance for Headache Disorders Advocacy. We do an annual Hill Day, which will be virtual in 2021. I am learning the online version of Quickbooks, which is keeping me busy. We hired Carole Bernard, our amazing new executive director, and I participated in this search with other members of the board. 

I became the secretary for the National Headache Foundation. I am also the chair of the NHF Patient Leadership Council, which consists of a diverse group of about 16 advocates. We provide feedback, ideas, and the patient perspective to NHF initiatives. Our executive director, Mary Franklin, retired in November.  Because of my previous experience with the AHDA search, I volunteered to lead the search committee.  I am very pleased with our new Executive Director, Tom Dabertin. He brings a different set of skills to the NHF.  

I volunteer for CHAMP, and am currently on their stigma committee.  It is our belief that stigma and misunderstandings about headache diseases are the root cause behind the lack of employer, educational, physician, patient, and care-giver education.  We are creating tools to address this.  One project is called Migraine at School, which was designed for students, parents, and educators.  

At one point, I think I was working more hours on my volunteer projects than I ever did with my paid position with Okemos Schools. I have a hard time saying "no." The work is very rewarding, and there is so much more to do.  

Like most people, I am looking forward to 2021 with renewed hope, commitment to addressing the disparities and stigma associated with headache, and educating patients, physicians, educators, and care partners.  

Here's to 2021!

Seasonal Affective Disorder and Migraine

Here is a  Facebook Live presentation for the Move Against Migraine Facebook Support Group on 1/18/18. It had nearly 6K hits!  It was a HIT!

I still use my "happy lite" on a regular basis during our dark Michigan winters.  Otherwise, I feel sluggish, as if I just can't accomplish anything.

I added the purple streak in my hair as a nod to migraine awareness and advocacy.  When people see it and ask me about it, I am proud to let them know.  I fight the stigma of Migraine Disease wherever and whenever I can.

Here's to more light in YOUR life!

Being your Own Best Advocate: FB Live Presentation for Move Against Migraine

My Facebook Live advocacy presentation done on 6/18/18 for the Move Against Migraine Facebook Support Group.  It had 2.4K views.

Yes, I had a migraine that day. My brain was running in slo-mo.  What we do?  We plug along and do the best we can. We push through. 

Migraine: Navigating the Emergency Room

Here is a Facebook Live presentation I did for Move Against Migraine called "Navigating the Emergency Room with Migraine."  I am posting it here because the Move Against Migraine Facebook group is private, and the information is too important not to share.

This video was created on 7/12/17, and was viewed by 2.2K people on the Move Against Migraine Facebook site.

Here are the slides if you're interested:  

Please let me know if you have any questions!

My Journey with Patient Advocacy

I have been a patient advocate for as long as I have been a nurse, which is a LONG time!  In fact, throughout my careers as nurse, teacher, and health educator, my overarching goals have been to advocate for and empower people to take charge of their health. This was crucial when I became disabled by chronic migraine in 2006. Even though I am a nurse, there was much for me to learn about migraine. I felt overwhelmed by my disease. So, I set out to educate myself, find out what I could do to feel better, and to empower myself. This led me to the National Headache Foundation (NHF) website. 

The NHF has always been a great source of information for people with headache disorders. For example, I found a diary I could use to track my headache days and the meds I was using so I did not over-use.  I found out about triggers and set out to find my own. 

To learn even more information about migraine and headache, I started attending conferences which were designed to educate health care providers caring for people with headache. This is where I met other advocates, including Mary Franklin. Mary is the executive director for the NHF and is also a nurse. We hit it off right away. 

In February of 2018, I was looking for a meaningful way to apply my skills as a patient advocate, and Mary asked me to become the chair of the newly-created Patient Leadership Council. I said yes without hesitation. It was then that I came to realize just how devoted the NHF really is to patients.  Everyone I’ve worked with at the NHF has been tremendously supportive and encouraging. Their patient-centered approach really appeals to me.

As chair of the Patient Leadership Council (PLC), I was asked to find a diverse and committed group of people who would be willing to help the NHF in their mission to “cure headache and end its pain and suffering.” I found 14 men and women from different areas of the country with a wide range of headache disorders. Some are new to advocacy and some are seasoned veterans. We had our first formal meeting in San Francisco in June of 2018.  We learned about the history and mission of the NHF and the role of the PLC, which is to advise the NHF on ways to improve patient awareness, advocacy, education, and research, acting as an in-house focus group. Some of the ideas generated at that meeting are already coming to fruition just one month later, like support for college students struggling with headache disorders.  It’s exciting to be a part of such a dynamic organization. As far as I am concerned, the NHF was the perfect fit for me to utilize my past experience and skills.

Over the past several decades, I have held many positions that have gotten me to this place. I worked with my husband (a physician) as we started his internal medicine practice in Lansing, MI. Not surprisingly, patient education and advocacy were my favorite jobs. After earning bachelor’s and master’s degrees in education and public health, I became a Certified Health Education Specialist (CHES). I worked as an adjunct college professor in health sciences. I was advised to get my PhD, which I nearly did until chronic migraine disease got in my way. This is when I really became a patient advocate, for myself and for others. 

My headache advocacy began in 2011 as a board member, then chair of the now disbanded American Headache and Migraine Association (AHMA). I have been to Washington DC to advocate and lobby my legislators for the past 3 years with Headache on the Hill. I am currently on the boards of the Coalition for Headache and Migraine Patients (CHAMP) and the Alliance for Headache Disorders Advocacy (AHDA).  I am also a volunteer for Miles for Migraine. 

I find it immensely rewarding to put my past experiences into practice and continue to advocate for and educate people. I extend my thanks to the staff and board members of the National Headache Foundation who have welcomed me with open arms and made me feel like part of their family. 

From My Friend Julie Fleck: A Life on "Standby"

Life with migraine is like living on standby. Standby may be viewed as negative, like the standby passenger all disheveled after sleeping three days in the airport.  But standby also describes someone who is ready to deploy, jump into action, and -- last but not least -- a person that is available for emergencies.

So, living with migraine, I stand by, ready and available for immediate action:

• To STAND UP against stigma
• To use my voice in all mediums
• To educate myself to be the best advocate for myself and others and NOT stand by while others try to pull us down



Julie Fleck

• I'll STAND BY with hope for the new treatments in development.

There are over 300 different headache and migraine disorders.  Over 36 million individuals in the US are afflicted with this disease. Many go undiagnosed and untreated.

Standby -- IT'S NOT JUST A HEADACHE!  These attacks are defined by neurological symptoms that may include head pain, sensitivity to light, sound, nausea, vomiting, inability to speak, as well as a myriad of other symptoms.  Some never fully recover from an attack and ride along the roller coaster with daily symptoms.

Migraine has no boundaries.  It affects men, women, boys and girls; all socioeconomic classes and races.  Sadly, many have to STANDBY for adequate treatment and care. They all deserve attack-based treatment paradigms.

There are only 510 headache specialists in the US. That's about one practitioner per 85,000 headache/migraine patients. That's a LOT of people standing by.  I've been fortunate, but I WON'T stand by and be silent. It's hard enough to have an invisible illness, but to feel invisible too?  Well, lI don't want to stand by for that.

I've always said that through all pain there is a gift. You may not see it at first, but it always shows.  I've had many gifts and more will continue.  Stand by me on this adventure.

LET'S MAKE A DIFFERENCE!

AHMA Facebook Live Presentation: Our Journey with Migraine and Cluster

Current and former members of the American Headache and Migraine Association met to discuss their journey with migraine and cluster headache. 
Our journeys are different, but the results were similar.  We kept looking for answers, and refused to give up. 
Thank you Jamie Valendy, Michele Vargas, Bob Wold, and Eileen Brewer. 

New Migraine Infographic.

The American Migraine Foundation published this infographic 1/11/17.

Care and Empathy at a Cardiologist's Office

I see a cardiologist every year.  In addition to having a family history of heart disease, I have high blood pressure. I also have some mitral valve thickening, possibly a consequence of taking a migraine preventive, Methergine, for a year. It can cause the formation of fibrotic changes in the body.   

I had my yearly echocardiogram a week ago to make sure the valve issue had not progressed. I had an appointment with my cardiologist yesterday to review the results.  

I woke feeling hung-over, like I was in the post-drome or prodrome phase of migraine. I used my Cefaly and my Spring TMS to see if I could stop whatever was happening without using my NSAID, diclofenac.  I am very careful about Medication Overuse Headache (MOH), which can happen with regular use of NSAIDS, Triptans, and other analgesic meds used by people with head pain disorders. I keep track of its use, and my usage was getting into the danger zone of more than twice a week.

By the time I got to the clinic, I knew i was in trouble. I was dizzy and nauseated. I checked in and sat down, right next to a guy who smelled of cigarettes. I got up, moved to an empty area of the waiting room and tried to get in my "Zen Zone." I put my earplugs in, rubbed some essential oils under my nose, positioned my hand and neck scarf over my eyes to shut out as much fluorescent lighting as possible, and tried to concentrate on my breathing. I was miserable.  

Here is where the amazing part begins.

After what seemed like forever, the medical assistant called my name. I stumbled toward her and she asked how I was doing. "Migraine." I muttered.  She took me into the exam room and shut off the light. "My boyfriend gets migraines," she said." "I can see fine from the light of my laptop."  She took my vitals, and began to ask me about my med list. I handed her my (very long) list. She took it, and told me she could type everything in at her desk, and to feel free to lay down to wait for the doctor.  

It felt great to lay down. I went into my Zen Zone again, and started to feel somewhat better. An EKG tech knocked on the door.  I told her she could turn the light back on because I was feeling better.  She told me that she also gets migraines, and was having lasik surgery on Friday to make sure that her vision problems were not a migraine trigger. She did the EKG and turned out the light as she left.  

A short while later, Dr. James, my cardiologist, knocked on the door. In addition to being his patient, we have been friends for a long time. "Migraine?" "Yes," I said.  "But you can turn the light on. I am feeling a lot better."  He flipped the light on, got a big grin on his face and said, "You got an A on your test."  Then handed me my results. 

I was very grateful for the respect and compassion shown to me by the staff and my physician at the Thoracic and Cardiovascular Institute. To most people, this event would seem inconsequential. To a migraineur who faces the stigma of her disease on a regular basis, this was a breakthrough. 

Thank you, Dr. James.  Make sure you show this to your staff.  I want you all to know how much your kindness meant to me.  

Concurrent Use of Cefaly Device with Botox is Not Recommended

A user on the Remedy Health - Health Central Facebook site recently asked if it was okay to get Botox while using the Cefaly device.  (www.cefaly.us)

I have been using both for about 3 years now, and wasn't sure, so I emailed the folks at Cefaly. Their response was surprising.

Me:  "Is there any reason to avoid using the Cefaly after getting Botox?"

Von (customer service rep): "Botox and the Cefaly device work by different mechanisms. Botox paralyzes the nerves, and the Cefaly stimulates them. As the results obtained with the Cefaly device could be altered if you have Botox injections at the same time, we generally recommend our patients to use the device at least 4 months after Botox injections, so that they can better see the result they will obtain with the device."

I requested further clarification. The response: "To clarify, you can use Cefaly if you've ever used Botox at all in the past -- but we advise not to use the two treatments at the same time (my italics and bolding).  Meaning, if you've had a recent Botox injection, you should wait at least 4 months before trying Cefaly, so you can see accurate results."

I asked about 4 specific scenarios that others might like to see addressed. These are below, along with their attendant responses from Adeline at Cefaly.

1. A New Cefaly user who is already successfully using Botox. 
Given the opposite actions of Botox and Cefaly, a successful Botox patient would probably not benefit from the Cefaly device. But if they still want to try it they need to wait at least 4 months after their last Botox injection. 

2. A New Cefaly user who would also like to begin using Botox.
Same here: they can use Botox but wait 4 months after the injection to start using the device again. If the Botox therapy works, then they will probably not need the cefaly device anymore (like for scenario 1).

3. An Experienced Cefaly user having positive results, who would like to begin using Botox. 

Again, given the opposite actions of Botox and Cefaly, a successful Cefaly patient would probably not benefit from Botox. However if they want to try, there is no need to wait after using the Cefaly to start Botox.

4. Someone like me, who has been using both for a while because I did not know about the recommendations. 

In your case, if you did not wait 4 months after Botox to use the Cefaly device, the action of the device probably was not as efficient as it could have been. Botox is a pretty radical treatment whereas Cefaly is a gradual one, so if you use the device on the same day you got a Botox injection, it will be overpowered by the Botox and not work as well. If you want to try the device fully, you need to wait around 4 months after your latest injection.

These recommendations were not found on the Cefaly website, nor were they mentioned by the Cefaly reps in the exhibit hall at a recent AHS conference. I suggested that they make sure it is addressed by both in the future. 

"What's Under the Hat?"

In conjunction with the European Headache Alliance and AHMA's "What's Under the Hat" Initiative: 

What's under MY hat? I am a wife, mom, grandma, nurse, health educator, and health advocate. I have been a warrior against my chronic migraines for nearly 10 years. The guiding theme of my adult life has been the empowerment of others. Throughout my battle, I had to practice what I preached. My purpose has not changed; the focus of my purpose has. Through my work with AHMA, I hope to empower others with headache disorders and migraine disease to find the answers they seek, the help they need, and the support they deserve.

http://www.europeanheadachealliance.org/under-the-hat/

‪#‎underthehat‬ ‪#‎MHAM‬ @AHMAOrg

Jill Goes to DC

Jill Goes to Washington DC
02/08/16

I am in DC this week to advocate for migraine research with our elected officials.  I will speak to Senators Debbie Stabenow (D-MI) and Gary Peters (D-MI), as well as several legislators and their representatives.

Here are my thoughts so far:

Hello Elected Official.

I am a migraineur. My journey with migraine began at age 32. I began having regular migraines at age 45, and started on preventive therapy which helped the frequency of the migraines, but had nasty side effects.  I began having more than 25 days of migraine in 2006.  I gave up my work, my hopes, my dreams, and much of my time with family and friends.  I was never able to reach my full potential.  Even now, with migraines "only" 8 days per month, I also suffer from the side effects of the many drugs I take to prevent them.   None of these drugs were created specifically to treat migraine.  

This is not just my story.  It is the story of 36 million other Americans.  

Migraine is an inherited condition.  I “caught” it from my mom and my paternal grandmother.  There is no cure for migraine, and NO drugs have yet been approved to prevent its attacks.  

Head pain is but just one symptom.  It is more than a headache. It is sensitivity to light and sound; nausea and vomiting; smelling things that aren't there, sensitivity to odors, brain fog, and dizziness. Sometimes, I have a migraine with no head pain, just dizziness, visual disturbances, and cognitive problems. 

I come here today to ask you to consider increasing the funding for the research of migraine, and the development of treatments for this disease.  

Thank you. 

Other Thoughts: 

•  Imagine how it would feel knowing that you had the potential to be a highly functioning person, but that potential was unrealized because of a disease suffered by you and 36 million other Americans. 
•  Imagine being a wife/mother/co-worker/friend who continually lets people down because she is in bed, disabled with this disease. 
•  Now, imagine feeling abandoned by your government because the funding for research on this disease is less than 1% of the NIH budget.  

What is this disease?

MIGRAINE.

• Migraine is among the 12 most disabling conditions; even more disabling than MS or quadriplegia, costing over $31 BILLION (indirect/indirect cost). 
• Migraine affects 25% of women in their most productive years, and 19% of veterans.
• Four percent of migraineurs spend over 15 days per month with migraine symptoms and its related co-morbid conditions, including: heart disease, stroke, fibromyalgia, and depression. 

NO medicines have been approved specifically for the prevention of migraines.

Migraine Awareness Month Blogging Challenge, Day 4: Large Migraine and Headache Hopes

1. An increase in funding for the study of migraine.
2. Public awareness of this chronic, genetic neurological disorder and its consequences.
3. Medicines developed specifically for migraine disease (and not some off-label product that may or may not work).
1. This may include genetically engineered meds that are created for the needs of a specific person or phenotype.  
4. Compassionate physicians, friends, family, and co-workers.
5. Pain-free days.
6. Living a life without having it revolve around avoidance of migraine triggers.
7. All doctors having a working knowledge of the treatment of migraine.  

Migraine Awareness Month Blog Post #3: Small Headache and Migraine Hopes

My assignment for this post is to name some of the small-ish hopes I have for headache and migraine.

My hope is that I continue to have family and friends who understand and support me when I am not feeling so hot.

I hope that people who have migraine can find a support group or network of friends that will help them understand the disease.

I hope each day that I wake without head pain, and I wish that for you, too.

Migraine and Headache Awareness Month 2015. Day 2: Who Helped you?

Today, the migraine blogging challenge is to name someone who helped me. 

The one person that comes most to mind is my husband, Barry Dehlin.

When I was first diagnosed with chronic migraine, neither of us knew much about it.  He did some literature reviews to find more about it, including the algorithm used by neurologists for trying different preventive medications for migraine.  He pulled up the slack when I was at my most frail and vulnerable.  He never made me feel guilty about being in bed, being crabby, being unpredictable.  

Even now, he knows when I have a migraine before I even tell him, and always asks what he can do to help.  Then he quietly shuts the bedroom door so I can try to sleep.  

Thanks, darlin', for sticking with me through these difficult years. We have definitely addressed the "for better or for worse" part of our marital vows!

Migraine Awareness Month, 2015

June is Migraine Awareness Month, and I am participating by blogging each day, 
using a prompt provided by Migraine and Headache Awareness Month. 
I am 9 days behind, so here I go.

The first prompt is to name my favorite "hope" quote.  

This is not so much a quote, but a poem that has given me inspiration since I was working on my dissertation at Michigan State. It illustrates the benefits of perseverance and always gives me hope. 

Two frogs fell into a deep cream bowl,
One was an optimistic soul;
But the other took the gloomy view,
“We shall drown,” he cried, without more ado.
So with a last despairing cry,
He flung up his legs and said, “Good-bye.”
But the other frog with a merry grin,
said “I can’t get out, but I won’t give in.
I’ll just swim around till my strength is spent,
For having tried, I'll die content.”
Bravely he swam until it would seem
His struggles began to churn the cream. 

On the top of the butter at last he stopped,
And out of the bowl he happily hopped.
What is the moral? ‘Tis easily found:
If you can’t hop out, keep swimming around.

—Walter Knight, Knight’s Master Book of New Illustrations

Farewell to My Wonderful Mother

The deer on Wednesday, June 10, 2012

Deer on Thursday, June 21st, 2012

As many of you know, my mom, Gwendolyn Oglesby, passed away on Friday, June 22nd, 2012 at the age of eighty-seven.

Here is our 100% true (and amazing) DEER STORY:

Ever since my dad passed away in October of 2010, Mom has prayed that Dad (Floyd) would come to get her so she could join him in heaven.

In April this year, Mom decided that she was no longer interested in going to the emergency rooms, being in the hospital, or getting dragged to doctors' appointments when she didn't feel well. On April 22, 2012,  Mom and my sisters met with the Hospice doctor for a hospice intake evaluation in her apartment at Sunrise Assisted Living in Grand Rapids. There were birds, squirrels and chipmunks at the bird feeders outside her living room window. It was like a scene from Snow White.

Right after the hospice doctor left, Gwen looked out the living room window and saw a deer in the distance in the empty 5 acre lot located behind the facility. Mind you, the only other time she had seen any deer at Sunrise, she was with Floyd. They marveled at the deer in the backyard of Sunrise, which was located between I-96 and busy 28th Street. My sister Jo-Ellyn remarked that it must have been Floyd checking in on her.

On June 10, less than two weeks before she passed away, I was visiting. A small deer with a bad leg came up to the bird feeder. It looked right into the window of Mom's living room as it approached, stepping about two feet away from the window. It lingered for over 10 minutes. I thought it was unusual for the deer to be that close, so I took a picture of it and shared it with my sisters. Sisters Jo-Ellyn and Mary were pretty convinced that Floyd had come to visit again. Unbeknownst to our family at the time, the staff at Sunrise - who would take breaks on the wooden bench just outside Gwen's back window - had also noticed the deer. The deer would approach from behind.  When they saw the deer, it simply looked at them; rather than running, it seemed to say, "I am staying here, so you'd better get on with your business."

Fast forward to June 21st, the day before Gwen passed away. She had been unconscious for about 8 hours, and had been moved to her bedroom in a hospital bed facing the window.  As our family took turns sitting by Mom's side, we noticed something moving outside the BEDROOM window. The deer, still lame and limping, came up to the bedroom window. It did not initially go to the bird feeder in front of the living room as it did in the past. The deer just stood outside the bedroom window and peered in for about 5 minutes. It was not afraid of staff members moving about outside on the bench, or the many people moving about in Mom's apartment. It just stood there and looked at us.

We all said hello to Dad at that point. We took lots of pictures, videos, and were pretty stunned. We knew then that dad was there to take her home.

And wouldn't you know it, the morning we were laying Mom to rest at Fort Custer National Cemetery in Augusta, Michigan, there was a deer peering at us through some trees about 100 yards away. As it ran into the woods, there was another deer scampering right behind it. I guess Dad wanted us to know that that he and Mom were together at last, and that they would always be watching over us.

Migraine Awareness Month - Post #19: "The Match Game"

"Describe your perfect doctor to treat your Migraines."

• The perfect migraine doctor is a neurologist whose practice primarily treats head pain disorders.  
• He or she is kind, compassionate and knowledgeable about the latest research, or participates in research studies about head pain disorders.
• The doctor empowers the patient by facilitating shared decision-making in the patient's care.  
• The doctor and patient treat each other with respect. 
• The practice is staffed by competent and efficient personnel. 
• There is a nurse available to answer questions during office hours, and there is an emergency contact number where someone can be reached for problems that crop up during evenings, weekends and holidays. 
• General questions are answered within one business day
• There is a prompt response when the patient has an urgent or emergent need.  
• They honor most insurance plans and are willing to set up a reasonable payment plan for those with no insurance, or for the items not covered by insurance. 
• The doctor listens when you say that you don't want drugs that will further impair your cognitive abilities or that you are a light-weight when it comes to certain classifications of drugs. 

I am pretty lucky in that my internist referred me to a migraine specialist right at the onset of my battle with chronic migraine.  He listened to my suggestions and the suggestions of other health care professionals, incorporating those ideas into my care plan. He did not advocate the use of narcotics, which I appreciated. 

My current neurologist (who looks a lot like the guy in my photo) spent an hour with me at my intake appointment and did not seem hurried, distracted or worried about getting behind schedule. I felt as if his entire focus was devoted  to solving my problems.  He asked me at the end of our visit if I had any other questions.  I appreciated that.

I have heard horror stories from many other migrianeurs about their physicians, and feel very fortunate to have found competent physicians in my geographical area.   Despite the fact that I have a chronic incurable disease, when it comes to my medical care, I feel  blessed.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Migraine Awareness Month - Post #18: "The Price Is Right"

Today's blogging prompt is "The Price is Right."

 "What one thing would you do for the Migraine community if money were no issue?"

http://fortreatment.blogspot.com/p/migraines.html

This is a tall order indeed, as the "migraine community" is such a large demographic.  It is estimated that about 10% of the general population are diagnosed with migraine, but many people suffer from migraine without even knowing. They think it's a tension or sinus headache.  Here are a few facts about migraine, and areas that need more research:

• Migraine is a syndrome that affects many other bodily systems besides the head.  It is difficult to treat because the preventive medicine that works for person A may not work for person B or C. Because migraine has a constellation of different presentations, it is a tricky disease to treat.   It's taken me 5 years, 5 doctors and about 50 different medicines to begin to believe that I am on the right track.  

"Researchers are still unsure about the root cause of migraine disease.  Migraine remains poorly understood and frequently mistreated. Researchers still do not understand many things about the causes of migraine, the role of genetics, the nature of pain, and the reasons why medications work only on some people and in some situations. As a result, sufferers often endure a lengthy process of trial and error to discover an effective treatment. Once a treatment is determined, it may not alleviate every attack, and it may prove ineffective over time." (http://www.migraineresearchfoundation.org/about-migraine.html)

• Migraine is among the 20 most disabling medical conditions, yet very little federal funding is targeted toward migraine research and development of medications and other treatments. In fact, most of the meds we use to treat migraine (with the exception of those in the triptan family) were developed for other purposes, primarily seizure and bipolar disorder. 
• About 10% of children also suffer from the disease. These young people are often ignored or misdiagnosed.  Development of medication for pediatric patients is very difficult because it is hard to find children whose parents will allow them to participate in drug trials.Virtually NONE of the medications used to treat migraine in adults have been approved for pediatric use.
• This is a disease that affects three times women as it does men, and includes menstrual migraine.  
• About 2% of the US population suffers from chronic migraine. This means that we are out of commission with migraine for 15 days a month or more.  Try having a normal life with that kind of disability.  It's nearly impossible.   
• We try everything and anything to get our lives back, including alternative or complementary treatments such as meditation, massage, reflexology, chiropractic or osteopathic medicine and acupuncture. There is very little research on the efficacy of these complementary treatments. Nearly all of this is an out-of-pocket expenditure. Couple that with the fact that few of us with chronic migraine can work full time, and you've got a very financially stressful situation. 

How can I possibly choose "one thing" to tackle first?  Here is my wish list:

1. More money toward research on the root causes of migraine, which may lead to more migraine-specific treatments.  
2. More training for physicians about migraine disease to facilitate early diagnosis so people can have effective treatment from the outset.
3. More migraine specialists. Neurologists are fine, but migraine specialists are trained to deal with the myriad of migraine presentations and complications. 
4. More education of the general public so they understand what a truly disabling condition this is.  It's not a hang over or a bad headache. It's nausea, vomiting, diarrhea, dizziness,  cognitive processing difficulties, difficulty speaking, reading or writing, extreme sensitivity of the senses (vision, light, sound, taste, smell and even touch). 
5. More research on the efficacy of traditional western medicines and of complementary therapies.  
6. Insurance coverage for evidence-based traditional and complementary therapies proven to work. 

"There is no condition of such magnitude - yet so shrouded in myth, misinformation, and mistreatment - as migraine."

Joel R. Saper, MD, Chair, MRF Medical Advisory Board

http://www.migraineresearchfoundation.org/about-migraine.html#chronic