Headache on the Hill 2018

 

***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.

Healthline Article: When Migraine Runs in the Family

I was given the opportunity to write an article for Healthline.com about my family’s journey with an uncommon type of migraine.

To read my article, click on the link provided below:

https://www.healthline.com/health/migraine/migraine-all-in-the-family?utm_source=Facebook&utm_medium=opt&utm_campaign=TEVAMigraineRetargeting

 

Migraine Again Guest Post

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.

The Best Ways to Juggle School and Migraine

 

INVisible Project: Migraine Edition

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:

Colton De Keyser and Family

 

 

Common Types of Migraine Headaches and Symptoms in Kids

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.

You can learn more about the Diamond Headache Clinic here.

 

Today’s Parenting Team

 

I decided that my first Today’s Parenting Team article would be about my 13 year old son who lives with chronic migraines because people don’t seem to grasp that his migraines are not “just headaches.”

To read this article, click on the link below to be directed to the Today’s Show website.

http://community.today.com/post/how-to-help-your-child-cope-with-a-debilitating-chronic-illness