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.
Each person living with migraine experiences different outcomes when it comes to pharmaceutical and non-pharmaceutical treatments. In this article for Longevity, I share how a procedure called a SPG Block, helps with both my vestibular migraine and cluster headaches.
***Disclaimer: I was originally gifted this product in 2014 for testing purposes.
All opinions are my own***
Over the past 30 years, I’ve sampled a wide variety of products geared towards people living with migraine. Finding relief; even if it’s only temporary, can make a world of difference for a person facing intolerable amount of pain. Whether it was based on the companies claims or testimonies of reliable sources, I’m always up for testing a new item without harmful side effects.
In my online quest to find a reliable and safer alternative to lessen or eliminate head pain, I came across the Catalyst™ Cryohelmet website.
So, what is a Catalyst™ Cryohelmet?
It is a device that applies targeted cold therapy to the head. With proper use your Catalyst helmet may be effective in reducing inflammation from head injuries, lowering body heat, and lessening migraine pain.
I was immediately sold on the idea of a helmet that could lessen migraine pain. Well, that and the part about staying cold for up to 90 minutes while wearing it. For those of us that endure debilitating symptoms during a migraine attack, the very last thing you want to do is move around. Not having to run back and forth to the freezer to replace a depleted gel pack every few minutes would truly be a blessing.
I didn’t waste any time reaching out to the company to share my current situation with chronic migraine and shortly after, received a complimentary helmet to test out.
I felt like a kid on Christmas day the moment UPS showed up with my Cyrohelmet. I didn’t waste any time ripping open that box to see that it included the following:
CryoMax™ Cold Packs in UltraCool™ fabric pouches with Velcro
Insulated carry bag and CryoMAX™ square to keep Cryo-Helmet frozen for hours
I immediately tossed my new helmet in the freezer so that it would be ready the very second I needed it, which would be in the evening.
During the first night of using my Cryohelmet, I was fighting a level 7 migraine attack that included aura, nausea, being lightheaded and my head throbbing non-stop. I slipped the helmet on then tightened it as much as it would get and waited for some type of relief to kick in. Within a half hour, I managed to fall asleep with my helmet still on. 4 hours later I woke up without feeling nauseous or lightheaded and best of all, minimal head pain.
I was quite impressed with my first go around of this product. I loved that I could get out of bed and walk around the house without the helmet falling off my head. I could never get those gel packs with those plastic straps to stay in place for long. I even added extra Velcro straps to those things only to have them fall off the second I tossed or turned in bed.
If day 1 went that smoothly, I wondered how my Cryohelmet would hold up the next time I needed it for migraine relief. The very next day I got my answer when woke up to stabbing pain on the right side of my head with dizziness so severe I couldn’t move without making it worst. Luckily, my daughter had placed the helmet back in the freezer while I slept. It was at the perfect temperature to be effective enough to lessen my head pain to a tolerable state.
Because I have chronic migraine that meant I spent at least 15 or more days dealing with various symptoms. The three symptoms I often experienced during each migraine attack was dizziness, nausea and head pain. My Cryohelmet helped to manage my attacks which meant spending less time stuck in bed and more time doing things with my family. How could you not love a product with those wonderful capabilities?
Once I became well enough to travel long distances again, I discovered that the Catalyst™ Cyrohelmet was airport friendly. I’ve gone through several TSA checkpoints around the U.S. carrying my helmet inside the insulated bag provided by the company with no issues. I’ve even used my Cryohelmet while on the plane. It helped me to relax and experience less head pressure making the rest of the flight more bearable.
Cryohelmet came to my daughter’s rescue after she developed a terrible ear infection. This infection quickly caused her to have a high temperature that eventually skyrocketed to 103 degrees. Not only did the CryoMax™ Cold Packs inside the helmet soothe her ear pain, it lowered her temperature and kept it below 100° the rest of that night. Even our family physician was impressed at the fact the helmet was more effective than the fever-reducing medications she received.
I even began using my Cryohelmet in the 15 minutes leading up to each of my Cluster Headache attacks. I found it helped me to be in a more calmer state of mind. For anyone that has endured these horrific beasts of a headache understands you become desperate and any type of relief is welcomed.
After I learned my son developed chronic migraine, the team over at Cryohelmet shipped a helmet for him to test out. My teen noted a decrease in head pain within the first half hour. In a matter of fact, he prefers to use his Cryohelmet over his migraine abortives. There are no strange side effects with icing your head and it helps him to relax a bit more too.
My son not only uses his Cryohelmet during a migraine attack, he wears it to cool down after football practice and games. Between lifting weights and running plays its easy for any athlete to get overheated. My teen knows the importance of icing his head and now so does his teammates.
Within the last two years, Cryohelmet has graciously donated a total of 5 helmets to my son’s middle and high school football department. Although my teen is currently the only person with the migraine disease on the team, a few of the players discovered the amazing benefits of using the Cryohelmet’s during the hotter temperature days. Just knowing my child and his team mates have a product specifically designed for head injuries on the sidelines, puts my mind a bit more at ease.
What more can I possibly say about a company that has followed my teen and I through our journey of living with migraine and cluster headaches, other than if they put that much thought into two of their customer’s well-being, then imagine how much time and effort went into the development of their line of products for potential customers.
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
With another school year about to start, I have much more responsibilities to get my teen ready for his Freshman year than my middle schooler.
Not only do I have to attend orientation and more activities as a parent of a high schooler. I have to prepare my son and his new teachers for migraine prevention 101.
With 5 years worth of experience of educating the school’s staff on how my young migraineur has certain treatment requirements based on the severity of each migraine attack, I was more than happy to share my tips with Migraine Again.
To read my guest post on Migraine Again, please click on the link provided.
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.