2015 3rd Annual AHMA Patient Conference
The 3rd Annual Patient Conference of the American Headache and Migraine Association (AHMA) took place on June 22nd in Washington, DC. AHMA exists to provide support and education to patients with migraine and other headache disorders and their loved ones. If you are reading this, then you probably qualify to become a member.
Socializing with people who understand
This was my first AHMA Patient Conference. Finally getting to meet people whom I had only known online was a refreshing surprise. We had shared so much for so long that it was like finally seeing old friends. I would go again just to see my friends.
There were detailed instructions on how to create a Migraine Action Plan and tips on how to entertain little ones quietly when Migraine strikes. There was also a guide for finding a headache specialist. A purple shoulder bag and “Ask me about AHMA” pins were nice additions, too.
First on the schedule was a keynote address by former POW, Jessica Lynch. She shared details of her capture and rescue, as well as the long road to recovery. Throughout her treatment, she complained about headaches. Neither the military hospitals nor the VA did anything to help her. They focused on the rest of her body. Finally, she found a good headache specialist who helped her get relief. Her story is all too common among wounded veterans. I was impressed with her courage to speak about her experiences. The trip to DC would have been worth it just to hear her speak.
Meeting the headache doctors
We enjoyed several sessions led by leading headache doctors and researchers. I was surprised by how approachable the doctors and pharmaceutical reps were. They sat among the patients, shook our hands, and answered our questions. There wasn’t an ego among them. The ones who spoke to us expressed their appreciation for our presence and stated that they enjoyed the patient conference even more than the AHS Scientific Meeting. Their passion for headache disorder patients was obvious. They really cared about each of us.
Dr. Todd Schwedt
I referenced his work in the November 14, 2014 headline Allodynia between attacks may contribute to your next migraine. It was such a privilege to meet the actual researcher! His findings show empirical evidence that migraine symptoms persisting even between attacks. It was fascinating to see the scans that prove our symptoms have a physical cause. It is all in our heads, but definitely not imaginary.
Dr. Larry Charleston
He shared some of the details about Medication Overuse Headache. Much of it we have covered here in other features. However, the one that stood out most was the evidence that MOH causes long-term changes in the way our brains respond to preventive treatments. Even after MOH is resolved, a patient can continue to have daily pain for a long time. They can also have more difficulty finding an effective preventive treatment. That information motivated me to continue the careful monitoring and limiting my use of pain medications.
Supporters who were present enjoyed their own session on self-care and education while patients learned about the scientific research into the treatment of chronic migraine.
Dr. Andrew Charles
Dr. Charles led the session with case histories of patients with chronic migraine. He walked us through their history and subsequent treatment. It was fascinating to learn how doctors go about finding a diagnosis of chronic migraine, distinguishing it from secondary headaches, hemicrania continua, new daily persistent headache, and chronic tension-type headache. He covered potential factors affecting the frequency of attacks including lifestyle, comorbid conditions, and medications (even those for other conditions). The thing that surprised me most were the number of treatment options that can treat chronic migraine. He emphasized the need for behavioral interventions in addition to medication to provide support and teach coping skills.
Then we took a break for lunch. There were several healthy, trigger-free options to enjoy. The creamy tomato soup was a big hit! As we finished up, our Chairperson, Teri Robert, called the annual membership meeting to order. We had a brainstorm session to generate ideas to increase membership. Everyone was encouraged to participate.
Dr. Elizabeth Loder
After lunch, Dr. Loder shared ways for patients to be involved in setting research agendas. She addressed important issues such as patient access to study results. Currently, most studies are only available for a fee. There is a group trying to change things so that all published research is available to the public at no charge. She also mentioned Patients Like Me. It is a voluntary clearinghouse where patient with any kind of disease can register, enter data, track symptoms, and meet other patient just like them. The data is then anonymized (personally identifying data is removed) and made available to researchers.
Dr. Brian McGeeney
Near the end of the day, we were introduced to Cluster Headaches. When asked for a show of hands from anyone diagnosed with Cluster Headache, only Bob Wold (president of ClusterBusters) and I raised our hands. It felt strange to be in such small company. I was pleased with his presentation. He admitted that his source for the presentation was Bob, so I know why it was so accurate.
Dr. Dave Watson
Our last presenter is one of my favorite headache doctors. His humor made the topic enjoyable as he shared how to build a good doctor/patient partnership. It was refreshing to hear a doctor’s perspective, especially from one with so much empathy for migraineurs. The point that resonated with me the most was when he said that if a doctor tells you that a treatment is your last option, you should look for a new doctor. That’s pretty good advice.
Q&A with Drs. Watson and McGeeney
It was a great conversation between the audience and these two amazing doctors. When the topic of depression and suicide began, I was impressed with Dr. Watson’s explanation. He said that we only have one brain that is responsible for pain perception, thinking, and feeling. It only makes sense that mental illness will affect migraine. Migraine will also affect mental illness. Both doctors encouraged all migraineurs (especially those with chronic migraine) to consider cognitive and behavioral therapies.
It was worth it.
I learned a lot and enjoyed meeting my migraine friends in person. If you have the opportunity to attend next year’s conference, take it. Membership is only $15 a year and conference registration is just $25 (and they feed you snacks and lunch!). All you have to do is find a way to get to Los Angeles. I did it by saving a little bit each month, watching for airline ticket sales, and recruiting a roommate to split the cost of the hotel room. With a little planning, you can do it, too.
In the coming weeks, I will share more details. If you’d like to know more about AHMA, the patient conference, our conference call support groups, and research fundraising, please visit http://www.AHMAisHope.org. You won’t regret it.