September is Pain Awareness Month
Did you know that some patients with episodic cluster headache have described bashing their head into a wall, putting their head in a freezer, writhing or rocking on the floor in pain, screaming, or even hitting themselves in the head in an attempt to stop the attack? Have you ever heard of cluster headache? Cluster headache is regarded as one of the most painful conditions known, and some patients even describe it as having an ice pick jabbed into their eye socket. Cluster headache affects nearly 250,000 American adults and men are three times more likely to be impacted by cluster headache than women. Cluster headache has a typical onset between ages 20 and 40.
Episodic cluster headache attacks are unlike other headache or migraine attacks. True to its name, the attacks from this severe headache come in clusters – from once every other day to up to eight times per day, often at the same times per day, for a cycle that can span anywhere from two weeks to three months. For people with episodic cluster headache, the bouts (or “clusters”) of severe head pain usually occur at the same time every year, often in the spring or autumn. A period of cluster headache attacks can be separated by a cluster headache-free period of at least three months.
Cluster headache attacks are characterized by the following signs and symptoms:
- Excruciating pain generally situated in, behind or around one eye, but may radiate to other areas of the face, head and neck
- Restlessness or agitation
- Excessive tearing
- Redness of the eye on the affected side
- Stuffy or runny nose on the affected side
- Drooping or swelling of the eyelid on the affected side
Cluster headache, although severely debilitating, is challenging to diagnose because of limited awareness and, for some, may take five years or more to diagnose on average. It has been historically challenging to conduct clinical trials that identify treatment options that help reduce the frequency of attacks. Despite its reach – cluster headache affects more than 10x the population of those with ALS (Lou Gehrig’s) – cluster headache remains largely unknown.
September is Pain Awareness Month, which brings to mind the excruciating pain surrounding cluster headache and learning that the FDA recently approved a new treatment option for adults with episodic cluster headache.
Join me in a recent interview with Bryan Garrison, a patient with episodic cluster headache, and neurologist, Dr. Kavita Kalidas, who discusses the cluster headache symptoms associated with cluster headache and a new treatment option to help someone suffering from this type of agonizing pain.
See the entire interview here:
About Bryan Garrison
Bryan Garrison is a 38-year-old Tampa, Florida, resident who has experienced cluster headache attacks for over 18 years. Bryan was diagnosed with cluster headache in 2008 after seven years of experiencing consistent cluster headache periods. Bryan’s cluster headache is cyclical, and he experiences approximately two cluster headache periods a year, typically around the change of seasons (one in the fall and one in the spring) with each cluster period lasting about six weeks. He would experience, on average, four cluster headache attacks per day during this timeframe with each lasting for about an hour and a half. Bryan describes his pain as similar to having a knife stabbed through one side of his head. During an attack, he needs to retreat to a dark, quiet room, even while at work, until the attack subsided. He’s found important support from his colleagues at work, who accommodate him and make sure that he has a comfortable room to push through his cluster headache attacks. In order to cope with the pain, Bryan will often take deep breaths and use portable oxygen to relieve the pain. He described the attacks as agonizing for even his loved ones to witness. In 2018, his doctor recommended that he enroll in a clinical trial of an investigational compound. During the trial, he experienced significantly fewer cluster headache attacks per week.
Bryan is a kinesiotherapy supervisor at the Tampa VA Medical Center, where he manages a sizable staff within the Department of Veterans Affairs with patients who have suffered traumatic brain injuries, amputations, spinal cord injury and other orthopedic disabilities. He’s also a certified rehab specialist who teaches patient how to operate a motor vehicle with adaptive equipment and helps to improve their quality of life after an illness or disability. Bryan regularly discusses his cluster headache symptoms with his patients with traumatic brain injuries, in the hopes of advocating for greater disease awareness and a supportive community.
About Dr. Kavita Kalidas
Dr. Kavita Kalidas is the Director of the Division of Headache Medicine and Associate Professor of Neurology at the University of South Florida in Tampa, Florida, where she also serves as the Fellowship Director of Headache Medicine. Dr. Kalidas received her Bachelor of Science degree from the University of Miami in 2001 and her medical degree from the Ross University School of Medicine in 2005 before completing an internship in Internal Medicine at Long Island College Hospital in Brooklyn, New York in 2006. She was the Chief Resident in Neurology in 2009 at the University of South Florida where she also completed her fellowship in Headache and Facial Pain in 2010. Dr. Kalidas is board-certified in Neurology with a subspecialty certification in Headache Medicine. Her research has focused on therapies for patients with such diseases as multiple sclerosis, migraine and cluster headache, and her work has been published in such journals as Cephalalgia, Expert Review of Neurotherapeutics and Headache: The Journal of Head and Face Pain.
About Cluster Headache Patient Advocacy Organizations
- Clusterbusters, Inc.
- Clusterbusters® is an IRS-approved 501 (c) (3) non-profit research and educational organization dedicated to researching treatments that show promise for reliable, effective and long term relief from cluster and related headaches.
- Website: https://clusterbusters.org/
- Email: email@example.com
- Facebook: https://www.facebook.com/clusterbusters/
- The Cluster Headache Support Group, Inc.
- The Cluster Headache Support Group, Inc. is dedicated to improving the lives of those suffering with cluster headache. Our mission is to provide a safe, supportive community for patients and caregivers affected by cluster headache that offers providing patient-directed support and education that empowers patients to advocate for and raise awareness of cluster headache. CHSG also collaborates with health care systems to drive and support scientific research that results in treatment advances for patients with cluster headache and other trigeminal autonomic cephalalgias.
- Website: https://chsg.org
- Email: firstname.lastname@example.org OR use the Contact Us form on their website
- Facebook: https://www.facebook.com/ClusterHeadacheSupport/
- Twitter: http://www.twitter.com/CHSupport/
Phone: (785) 330-5108 for people in the U.S.
- People with WhatsApp or in Europe may call +49 151 1679 3055
 Data on File. Lilly USA, LLC. DOF-GZ-US-0069.
 Headache Classification Committee of the International Headache Society (IHS). The International Classification of Headache Disorders, 3rd edition. Cephalalgia. 2018;38(1):1-211.
 The Cluster Headache: Just Like Clockwork. Columbia University Department of Neurology. http://www.columbianeurology.org/neurology/staywell/document.php?id=1411
 Cluster Headache. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/cluster-headache/symptoms-causes/syc-20352080
 Rozen TD, Fishman RS. Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden. Headache. 2012;52(1):99-113.
Interview courtesy: Eli Lilly and Company