An Interview with Mark Mitchell
By Eileen Brewer, President, Clusterbusters
Clusterbusters is always interested in sharing information about current treatments with our community. Last week I was introduced to Mark Mitchell, who has been living with cluster headache since 1996. He generously shared his journey with me and what treatments are working to improve his life.
The Long Road to Diagnosis
In the fall of 1996, Mark began having devastating headache attacks once a night. For four weeks these attacks continued and then they stopped, only to return the next fall. He visited numerous doctors in search of answers and was told it was his sinuses. He tried various medications for sinus issues and pain relief, but nothing was effective.
Finally, in 2014, after 12 doctors and dozens of treatments, he received the correct diagnosis of Cluster Headache. The headache specialists at the Jefferson Headache Clinic in Philadelphia helped him to understand what was happening in his body and how to better treat it. However many treatments for Cluster Headache failed to provide adequate relief. He experienced access difficulties, side effects, and out of pocket expenses. These medications came with dangers of overuse and the possibility of serious side effects, but they also had the promise of escape from the pain.
Clinical Trial Brings Hope
Participating in trials for new treatments is something that many people with Cluster Headache are willing to try. Anything that will potentially improve the quality of life is worth a shot to someone with this disease. When Mark’s doctor suggested participating in a trial of a device called gammaCore, Mark took the opportunity, with the hopes it would help him and others.
GammaCore is a non-drug, non-invasive vagus nerve stimulator. The vagus nerve connects the brain with many parts of your body, including the gastroenterology system. This nerve is also a messenger of pain. The electric impulses generated when using this medical device aim to disrupt those pain pathways. The device is approved for daily use to prevent cluster attacks as well as to treat an acute attack.
Gamechanger for Mark
Mark lives with his wife of 22 years, their 17-year-old son, and 16-year-old daughter. Having Cluster Headache has always put a strain on his family, especially when he is unable to be fully present for his kids during a cycle. However, Mark reports that he is now living a better life with the help of the gammaCore. “The best part of gammaCore is that you can use it anywhere,” says Mark. It’s small, portable, and discrete. It allows him to miss less work and other life activities. He can take the device with him without fear of being stranded during an attack with no available treatments.
With many preventive and rescue medications used to treat Cluster, sometimes the side effects are worse than the treatment itself – such as nausea, dizziness and rebound headaches. “There are no side effects from the gammaCore” Mark noted from his own experience with the device. Overall his attacks have become less severe with acute use of the gammaCore.
It doesn’t mean that Mark is cured. There is no cure for Cluster Headache…yet. The goal of treatment for any headache disease is improvement in quality of life. Mark still has three attacks a day during his cycle. He can combine the gammaCore treatment with other options like oxygen to stop an attack. “It’s not perfect, but I am in better control.” GammaCore is an additional tool that can be incorporated into your treatment plan.
Unfortunately, many insurance companies in the United States do not cover the gammaCore device at this time. However, electroCore, the manufacturer of gammaCore, offers a 12-month savings program to some affected individuals. CHAMP has created interactive financial assistance guides to those interested in trying gammaCore (as well as many of the newly approved medications). Mark is taking advantage of this program and reports that once it is over—if his insurance will not pay—he will pay out of pocket. “It’s worth it.”
Disclaimer: electroCore is a sponsor of Clusterbusters, however this is not a sponsored post or endorsement of their gammaCore product. Information contained herein is for educational purposes and should not be construed as medical advice. Please consult your doctor before trying any new treatment.
