In an interview last June, Chris Hannah, the founder of Cluster Headache Support Group (CHSG), discussed his experience with and thoughts on cluster headaches, clinical trials and more. We recently caught up with Chris to learn how he uses PatientsLikeMe to manage his condition, and the advice he gives to others living with cluster headaches.
1. Chris – we’re so happy to have you as a member of the PatientsLikeMe community. How did you first hear about PatientsLikeMe, and what prompted you to join?
One of our board members, Anita, actually met a PatientsLikeMe representative at a pharma event in Philadelphia. At the time, we were working on a collaborative effort to establish a new patient registry for Cluster Headaches. Frankly, we try to avoid involvement in product development and especially support as that is not our primary function as a non-profit patient-centered organization. Anita raised PatientsLikeMe as a possible better path for that purpose and also for ongoing data collection which was another key objective for us. We set up a meeting right away and found immediately a willingness to work together utilizing the great platform PatientsLikeMe had already developed. The fit was not 100%, but it was close enough and we have been able to easily work around any gaps that did not fit our original requirements. The PatientsLikeMe team has been awesome! We meet regularly and it has become a truly collaborative partnership. We are meeting our needs without the pain of software development and maintenance, and in fact, enjoy the benefits of having an excellent partner in the industry. The PatientsLikeMe platform is robust, flexible, and well-supported. It was a great directional change for CHSG.
2. You’ve told us you use PatientsLikeMe to track your cluster headaches. Can you tell us more about how the site helps you manage your condition?
When we first looked at PatientsLikeMe for managing cluster headaches, it seemed to not match some of the ways we track headaches, such as multiple headache types with multiple incidences per day to track, both good and bad. There is a daily reminder asking how you feel today, and that was a huge benefit…a daily reminder to log our headaches. However, daily is just not frequent enough. Many said it won’t work for headache tracking at first, but what we realized pretty quickly is that there is no limit on the number of entries that can be made in a day. Simply by using the PatientsLikeMe tool, we could quickly – with one or two clicks – log every single incident and also track when we were feeling better. Both are important. We did a test with a small group of cluster headache sufferers to try it out. What they all found was that it worked very well to log each and every headache, pain free times, and even medications taken. The graphs were very telling and some even began to see specific patterns in their day they were not previously aware of. It helped them to adjust their medication timing and actually improve their overall condition.
3. How does the Doctor Visit Sheet (DVS) help keep your doctor up-to-date with what’s been happening in between your visits?
The Doctor Visit Sheet has proven to be a highly valuable tool and is very well received by neurologists at what are typically infrequent visits. They can see the entire history over the prior months including pain tracking, symptom changes, medications, etc. This is a critical component in ongoing treatment plan adjustment for cluster headache and migraine which still do not have effective preventive medications. Medications are often adjusted, new medications tried off-label, etc. With the Dr. Visit Sheet, it is a more informed decision process, and honestly, a better dialog between patient and doctor.
4. What advice would you give others who are living with cluster headaches and are looking for ways to better manage their condition, and connect with others living with cluster headaches?
First and foremost, don’t go it alone. We have great resources and patients just like you to bounce things off of, rant, cry, or shout about being pain free. No one else truly understands your pain or the life you live, but other sufferers truly get it. Join us at chsg.org and PatientsLikeMe! Information, discussion, support, and new research initiatives are all available to you, and you WILL find ways to better cope and reduce the impact of this debilitating condition on your life.
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