We’ve joined the American Migraine Foundation to fight debilitating head pain together
As part of our ongoing commitment to providing meaningful information, resources and support for those living with migraine, Adventures of a Spoonie Mom is thrilled to announce our new partnership with the American Migraine Foundation.
The American Migraine Foundation is the official resource for millions of Americans living with migraine seeking reliable information about diagnosis, treatment and advancements in research. Launched in 2010 as a patient support and advocacy effort of the American Headache Society, AMF’s mission is to mobilize a community for people living with migraine and their support networks, and to drive impactful research into the third most common and sixth most disabling disease around the globe.
“Adventures of a Spoonie Mom is a cornerstone organization in the migraine world. It is truly an honor to work alongside them as we #MoveAgainstMigraine,” says American Migraine Foundation Executive Director Meghan Buzby. “We look forward to continuing to make an impact together.”
Like Adventures of a Spoonie Mom, the American Migraine Foundation is dedicated to helping people with migraine live meaningful and pain-free lives. We’re so excited to join forces with AMF to provide support, advocacy and treatment innovations to people living with this disabling disease.
***Disclosure: The U.S. Pain Foundation sponsored my trip, and my teenage son’s to Washington D.C. this year. I’ve served as a U.S. Pain Foundation Ambassador for the State of Wisconsin for the past four years. All opinions are my own***
I had the privilege to attend my 3rd Headache on the Hill this year. My son, Colton, was able to join me as well. This was his 2nd time to lobby on Capitol Hill. We both have a history of living with the migraine disease and were more than willing to share our own experiences with our state’s congressional members.
What is Headache on the Hill?
This is an annual lobbying event in Washington DC, organized by the Alliance for Headache Disorders Advocacy (AHDA). The AHDA brings health professionals, migraine & cluster headache advocates and patients themselves to unite on our requests or “asks” of Congress. These asks are typically focused around improving awareness about the impact of Headache Disorders and in turn impacting the available research funding.
Headache on the Hill (HOH) is a two-day event each year; The first day includes an issues briefing and advocacy training session. The second day is for HOH participants to visit the offices of their respective congressional delegation on Capitol Hill. The AHDA will pre-arrange appointments with the offices of at least one congressman and two senators for each HOH participant.
Colton and I traveled out of Green Bay at 7 A.M. which wasn’t too bad except for when we arrived in Chicago with only 30 minutes to catch our flight, and I was hit with a migraine attack while running to our departure gate.
The smell of something burning immediately triggered an attack. I always carry my migraine emergency kit with me at all times which made it easy for me to down my abortive as I tried to dash through the crowds of people. Unfortunately, I wasn’t able to successfully able to rid myself of this level 5-6 migraine and had to fly with dizziness, nausea, and sensitivity to light.
Upon landing at Ronald Reagan International, Colton had the misfortune of getting hit with a migraine attack. His symptoms weren’t as debilitating as mine were on the plane, but he still needed to let his nausea subside long enough so that we could get a taxi to the hotel.
Once we made it to the Ritz Carlton in Pentagon City, I checked into our room and planned on meeting up with the other attendees before our training session, but my head had other plans. I was now experiencing a second migraine attack of the day. This time my vertigo became so overwhelming that I had to lie down for an hour to avoid falling while I walked.
When the symptoms finally subsided, Colton and I made our way down to the conference room where the training was already in progress. The room was filled with so many new faces. Most of those people where ones I’ve only met online through various headache disorder support groups.
The focus during this meeting was to discuss our “Ask”. An “ask,” is the actionable request we were making to our Congressmen and Senators. We needed a clear understanding of bill HR4733, aka “Opioids and STOP Pain Initiative Act of 2017” and ask our representatives to co-sign this bill.
According to the AHDA, the chronic pain and opioids crisis is the most costly healthcare problem ever. This crisis costs over $1.1 trillion per year, making it the most costly health care problem in our nation’s history. Pain costs $560 to $635 billion (4), and opioid addiction costs $504 billion. The AHDA states that this is equal to the combined revenues of 4 of the largest U.S. companies or 5.6% of the U.S. government’s revenue.
As we took a short break, I had a chance to meet the other advocate from Madison, Wisconsin. She was excited about attending her first Headache on the Hill, and I was elated to have another person from my state to spend the day lobbying with on Tuesday.
The second part of our training continued for another hour and a half. Unfortunately, Colton was slammed with his 2nd migraine attack in the middle of that session. I helped him up to our room to rest while I returned to pick up great pointers from a respectable neurologist on how we could efficiently approach our congressional members on Super Tuesday.
When our training wrapped for the afternoon, I opted out of meeting the new attendees to go check up on my teen. Usually, he needs to sleep with his medications to feel better. In this case, Colton required 8 hours of sleep and additional meds to lessen his debilitating symptoms.
I kept my cell on ring incase Colton needed help with something and returned downstairs for the sponsored Dinner by CHAMP (Coalition for Headache And Migraine Patients.) After the meal, the attendees were treated to a sneak peek of the new documentary Out of My Head, with a Q&A to follow with the filmmakers.
With a busy Tuesday ahead of me, I retired to my room for the night hoping my health wouldn’t be an issue like it had most of that day. Unfortunately for me, my body rebelled and in a huge way. I woke up with severe vertigo and nausea that none of my natural treatments and prescription abortives, could lessen.
Getting dressed then making it to the charter buses on time was a considerable challenge. Thankfully, Colton and Mia, our other advocate from Wisconsin, was there to help me navigate from one side of the congressional offices to the other.
A sponsored lunch was provided by The Headache & Migraine Policy Forum. It gave the advocates a chance to rest, grab a bite to eat and listen to a panel discuss the issues that our active duty and veteran military members with neurological disorders face when seeking medical care. I walked away, completely baffled by the fact the VA hospitals are not equipped to handle the volume of military patients looking for relief from their debilitating symptoms. These men and women served are serving our country deserve better options. Hopefully, with more advocates fighting on their behalf, that will soon be a possibility.
With so much going on earlier that morning with my health, I wanted to continue to the last two meetings with my state’s congressional members. That just wasn’t going to happen. Once again, my vertigo reared its ugly head making me come to the upsetting decision to go back to the hotel to sleep.
Colton knew I was in pretty rough shape is that I could barely walk without assistance. He joined me in the taxi and made sure I got safely back to our room. Mia continued to the last two meetings for Wisconsin. I am so ever grateful to have her on Team Wisconsin! She is an amazing and strong-willed woman that has become one of my good friends in the migraine community.
Back in my hotel room, I did everything possible to abort my migraine attack. I hated the fact that after attending my 3rd Headache on the Hill, I had no choice but to sit out because of my neurological disease. The main reason why I came to Washington D.C. in the first place was to share how migraine has affected my life. Now all I could do was lie in bed feeling the worst pang of guilt for not fulfilling my obligation as a patient advocate.
It took a good 5 hours before I could safely get out of bed without falling over my own two feet. What most people don’t seem to understand is that having vestibular migraine is often so debilitating that the simple task of walking is almost impossible. How can you function if the world around you won’t stop spinning and your head feels like an anchor, trying to pull your whole body to one side or the other?
I lost a job over my neurological disease from not being able to drive for 18 months. When a person tells me to throw sunglasses on, pop some over-the-counter meds and get on with my day, I take big offense to that. I wish it were that simple! I’d love nothing more than to “pretend” my health isn’t an issue, but my body likes to remind me that it is.
These past two days in Washington D.C had taken a significant toll on both Colton and I. We fought numerous migraine attacks with very little success. The weather had a big hand in how poorly our heads behaved while we traveled. Of course, that was a factor for so many other advocates besides us. They do say misery loves company and there was an overabundance of it on Monday and Tuesday.
At least my evening improved. I was able to attend the dinner hosted by the U.S. Pain Foundation for their ambassadors and other participants that are involved with them. Colton and I had the honor of sitting at the table with 3 of the people from the Out of My Head Documentary. We had a great time learning more about this family, and I can, in all honesty, say they were the perfect fit for that film.
The two days in Washington D.C seemed to fly by as it usually does when I’m in town for Headache on the Hill. It filled my heart to see the 150 advocates representing 40 states. The biggest group of people to date!
What this translates to is that more people are becoming aware that the only way we can make a difference is by sharing our stories with individuals that have the power to change things for us. Having a voice is vital for any type medical condition. Migraine may have taken away some of the most parts of my life away from me, but I feel a sense of vindication each, and every time I overcome an obstacle, my neurological disease puts in my way.
Excedrin® has, once again, creatively intervened to help foster empathy for people with migraine.
In September, a new program was unveiled to help get the conversation going between co-workers with the launching of Excedrin® Works. This latest platform from Excedrin® offers videos with different perspectives of an Interpreter, Pastry Chef, and Emergency Medical Technician moments before and during a migraine attack.
This brilliant use of 360-degree virtual reality technology, places users in real-life migraine workplace experiences, allowing them to see, hear and experience the effects of a migraine – everything but the pain.
Not only is Excedrin® using the 360-degree virtual reality technology to spark a dialogue in the workplace about the impact of migraines it empowers sufferers to talk about their condition with their colleagues.
What’s even more appealing about this program, is how Excedrin® compiled a great discussion guide that is available for downloading to share among employers and co-workers.
After viewing the individual videos of Maggie, Sarah, and Han I felt an overwhelming sense of compassion towards each of these migraineurs. I personally know what it is like to not want to discuss migraine in the workplace. There was always that fear of others doubting your symptoms and worst, assuming your using your medical condition to get out of an important work matter. It was always emotionally and physically draining on me.
A recent survey from Excedrin® found that[iii]:
● 7 out of 10 Americans with migraines say working during a migraine attack negatively impacts their work performance
● Nearly half of migraine sufferers have had to debunk migraine myths – like coworkers claiming they are actually hungover!
● Almost two out of five (38%) feel limited in their professional life due to their migraine
● 63% of migraine sufferers will power through and pretend they’re OK, making this the most common reaction to a migraine attack at work.
No one should ever have to downplay their health to avoid uncomfortable confrontations from co-workers.
That’s why I truly appreciate how Excedrin continues to use of innovative measures to further educate others about a neurological disease that approximately 38 million Americans suffer from.
Another applause worthy move Excedrin® made for this program, was announcing Nascar’s Danica Patrick, a migraine sufferer herself, as their new spokesperson.
As migraineur of 30 years, mom to a teen living with migraine, and patient advocate I fully agree with the decision to bring Danica on board.
Although I’m not a professional stock car driver, I do know that during a migraine attack, the thought of being surrounded by crowds is furthest from my mind. I want a dark, quiet room where I can lie down and wait out my often-debilitating symptoms.
Being a longtime avid fan of Nascar, I was ecstatic about the opportunity to interview Danica. I not only learned how she manages life in the fast lane as a migraineur, but also how her involvement with the Excedrin® Works plays an important role to raise migraine awareness in the workplace.
INTERVIEW WITH DANICA PATRICK, SPOKESPERSON FOR EXCEDRIN® WORKS
1. About how old were you when you first started to experience migraine related symptoms?
I’ve been suffering from migraines for about the past 2 years, so since I was in my early thirties.
2. How long after that, did you receive your migraine diagnosis?
For a while, I wasn’t quite sure what was going on. I thought I may have had carbon monoxide poisoning – from being in the race car – or maybe that it was even a food allergy, since I often got nauseous as well. After testing a few theories, and working with my doctor, we determined that I was suffering from migraines.
3. Speaking of symptoms, what type do you normally experience before, during and after a migraine attack?
I know pretty immediately when a migraine is coming on – it’s a familiar sharp pain – and when that happens I treat it right away. When I get migraines, they start mild and increase in severity. I often experience auras – which look like floating halos. Sometimes I also experience sensitivity to light.
4. Out of those symptoms, which one is the most debilitating for you?
I don’t think any one symptom is more debilitating than the other. Collectively my symptoms make suffering from migraines a very painful experience. Couple the pain and visual symptoms with the nausea I often experience, and it can derail your entire day – sometimes longer.
5. Could you please share your known migraine triggers? (ex. Environmental related-humidity or barometric, certain foods/drinks/fragrances)
I have many different triggers, there is no one specific thing that I can attribute them to. However, I’ve noticed that I most often experience migraines on the days that follow my races. Those weekends can be especially grueling since my schedule is crazy – I always need to make sure I am eating enough meals, drinking enough water, etc. so that come Sunday night I am not completely wiped out.
6. Does anyone in your immediate family (maternal or paternal side) have the migraine disease?
7. Do you currently seek the medical expertise of a Neurologist, Headache Specialist or Migraine Specialist for your migraine disease?
The majority of my medial insight comes from my primary care physician.
8. Do you take anything as a migraine preventive? If yes, would you please share what those things are?
Because migraines are very unpredictable, I do not take anything as a migraine preventative. However, the moment I feel a migraine coming on I take Excedrin® immediately.
9. Were you just a little hesitant about sharing that you have the migraine disease with your team and car owner?
I wasn’t hesitant about speaking about my migraines with my team. If I’m not there or fully functional, the race can’t go on so it was important for me to be as open as possible with those around me so we can all help each other.
10. What piece of advice can you offer to anyone living with migraine that might be afraid to have the conversation about their diagnosis with their employer or co-workers?
Sharing your medical information with people can be scary. I totally get it. But I also think that the people you work with – people you may spend the majority of your time with – would appreciate your transparency. Who knows, the people around you may suffer from migraines too. You’ll never know until you open up the discussion.
As part of Excedrin® Works, Excedrin® has created some helpful tools so that migraine sufferers can have more productive conversations about their condition at work. At Excedrin.com you can check out our 360 degree VR videos which depict the real migraines of two sufferers. There is also a migraine discussion guide available for download, which has some helpful tips and tricks for how to talk to your boss, coworker, etc. about your migraines.
To download your own guide and other helpful materials to share with co-workers, please visit Excedrin.com
***Some information in this article was provided by these additional resources: [iii] Excedrin® Works Survey
A few months back, the U.S. Pain Foundation contacted me about having my 13 year old migraineur, Colton, as one of the featured participants for their first migraine edition of the INVisible Project.
Without hesitation, Colton accepted the opportunity to share his story about the daily struggles he faces as a teen living with the abdominal and chronic migraine disease.
Colton felt it was important to speak up about the stigma that often accompanies a person battling against an invisible illness and how his chronic pain contributes to him missing out on so many school activities that he loves.
As a mom, I couldn’t be any more proud of my son’s courage and strength to overcome so many medical hurdles just to be a normal teen.
As a migraine and headache disorder advocate, I’m honored to have this young man alongside of me, fighting past the barriers of delimnas a patient faces to have a better quality of life while hoping a cure is found for a neurological condition over 37 million Americans live with.
To learn more about Colton and the other migraine INVisible Project participants, visit:
From February 2014 until the Fall of 2017, I spent countless hours with my son, Colton, in our local ER and with his neurologist searching for a solution to put an end the daily agony his migraine disease was inflicting upon him.
It wasn’t until this spring that the past 3 years of sleepless nights and worrying about the future of Colton’s health, was put to ease. We had finally discovered an effective treatment plan for his abdominal migraines.
My now 13 year old was back to living a better quality of life. He was attending school more often than not and looking forward to becoming a freshman in high school this upcoming year.
In efforts to help educate others about the common types of headaches and symptoms in kids, Diamond Headache Clinic put together this very informative slide show and asked that I share it with my readers.
When the U.S. Pain Foundation announced they drafted a template to submit to the Governor’s offices for Migraine Awareness Month, I gladly offered to help obtain one for the State of Wisconsin.
My past efforts as a Pain Ambassador for Wisconsin was successful during Pain Awareness Month. Twice, I successfully gained Governor Walker’s signature to declare September Pain Awareness Month and had no doubt he would continue showing his support for the Wisconsinites living with this neurological disease that currently has no cure.
Once again, Governor Walker came through for a cause I strongly believe in. He signed the first proclamation declaring June 2017 Migraine Awareness Month throughout the State of Wisconsin.
As someone that was diagnosed with the migraine disease 30 years ago and a mom of a teen that lives with abdominal migraine, this was a huge step for the whole migraine community.
When I first met Jaime it was through one of the many online support groups for people living with chronic migraines. She was a friendly face amongst the sea of migraineurs that always had insightful content on Twitter and Facebook. Her positive outlook on the worst of days is part of what makes this spoonie mom remarkable.
A few months back I finally had a chance to speak to Jaime about the exciting things happening in her life.
During our very long conversation I learned that we had quite alot in common. The 30 years of living with migraines, more failed treatments than successful ones, the debilitating physical/emotional pain all the while trying to be the loving wife and mom was something we both connected on.
Her blog is a true reflection of who she really is. She’s very open about the way each of her ailments complicate her every day life. This woman does not hold anything back when she writes her posts. I admire that!
Despite all of the challenging obstacles that Jaime endured in her lifetime, she knew it was those unfortunate circumstances that would give her the courage to help educate others about chronic migraines and depression.
This is a photo that features the More to Migraine Panel at the 2016 BlogHer event. Jaime joined Dr. Susan Hutchinson, a headache specialist and migraine sufferer, Shannon Albert, a patient speaker, and Serene Branson, who served as the moderator.
She even had the opportunity to join an Excedrin campaign that focused on fostering empathy from those that might not understand why migraines are not just headaches.
2016 marked my 2nd year as an Advocate for Migraine and Headache Disorders, as well as, an Ambassador for the U.S. Pain Foundation.
In February I attended Headache On The Hill in Washington DC with my 13 year old son. We spent the day speaking with our State’s (Wisconsin) Congressional members about living with debilitating chronic migraines and cluster headaches. We both shared how our neurological diseases impacted our daily lives and how there’s a desperate need for more funding towards research.
Not only did our State’s representives listen, they truly empathized with us. The best part was how they learned it is not always easy to find an effective treatment plan because each paitent responds differently than the other.
Case in point, the same medication and dosage that worked wonders for my son put me into a comatose state for weeks and landed me in the ER several times.
This was the first time I left Capitol Hill feeling accomplished as an Advocate.
I was especially proud of my son. He braved through his own migraine attack from the night before to join me and the other advocates hoping to gain the support of their own State’s congressional members.
My advocacy efforts did not end there.
In June I took to social media along with other paitents, caregivers and medical professionals to help raise awareness on migraines and headache disorders.
The entire month of June is dedicated to this cause as a means to end the unnecessary stigma that stems from individuals whom view migraines and cluster headaches as an unimportant health issue.
I furthered my dedication to raising awareness by doing a podcast with Joni Aldrich of Treatment S.O.S. We spent 45 minutes discussing various topics related to my health over the past 3 decades of my life and how I manage to care for a child that has just as debilitating migraines as my own.
Anytime I can openly discuss how my life has been negatively and positively impacted by migraines or cluster headaches, you better believe I’m going to do so.
With the rest of summer causing multiple health delimnas for myself and 13 year old, I took some time to rest and work on regaining control over my overactive immune system.
Once fall approached, I finally felt well enough to advocate locally.
In September, I joined other U.S. Pain Ambassadors by helping beautify cities and towns throughout my State in blue.
Beautify in Blue is a campaign created by the U.S. Pain Foundation that highlights the bravery, courage and perseverance of pain warriors during the month of September.
With the permission of business owners and the Mayor of Green Bay, I decorated designated areas with blue ribbons and signs.
In total there was 8 participants. 12 signs and numerous ribbons was displayed for Pain Awareness Month.
I would have loved to put more ribbons and signs out, but in the world of a spoonie the state of your health has the ability to render those ambitions.
Which brings me the advocating goals I’ve set for 2017.
With the State of Wisconsin electing a new congressmen for my district, I felt it was important that I be in Washington D.C. for this years Headache On The Hill. If anyone can convince a person why they should fully support paitents living with neurological diseases like migraines and cluster headaches, I am the right gal for the job.
The entire month of May will be my busiest.
The Arthritis Foundation and other partners observe Arthritis Awareness. The 12th is designated as Fibromyalgia Awareness Day. Not only does my mom have Rheumatoid Arthritis, she just received her latest test results and now we both have Fibromyalgia. It’s definitely not something I want to have in common with my mom, but we can take a little comfort in knowing we have one another for moral support.
Next on my list is taking part in my very first walk/run marathon in May.
Miles for Migraines will host a 2 mile walk/5K/10K run at the Diversey Harbour in Chicago. They are dedicated to raising awareness and funds towards migraines and other headache disorders.
Running isn’t in the cards for me, but I’ll gladly walk the miles with anyone else that is willing to join in our cause.
In June I’ll be on full mission mode for Migraine and Headache Disorder Awareness Month. I’ve been doing my part to help raise awareness throughout the month going on 4 years. I have to admit, it’s pretty amazing how many people will open up about their own experiences with migraines or cluster headaches once you’ve shared how your life has been impacted by these neurological conditions.
That alone, makes me feel that I’ve done my part as an Advocate.
As September approaches, I will contact Governor Scott Walker’s office to ask him to sign his 4th proclamation for Pain Awareness Month. This time around, I’d like to display Beautify In Blue signs around the State’s capital in Madison and setup an educational table at several health fairs or hospitals in Wisconsin.
Now that my goals are set, I am going to do my very best to achieve each and every one of them.