The Will Erwin Headache Research Foundation was created in 2014 by the Erwin Family and friends after their loss of a courageous young man, Will Erwin, who suffered from cluster headaches and took his own life to end his severe pain. The Foundation’s mission is to find a cure for debilitating headaches. Since its inception, The Foundation has teamed up with Memorial Herman Health System and The University of Texas Health Science Center at the McGovern Medical School to fund leading research dedicated to these neurological disorders, and more importantly, to bring an end to the pain they cause.
The month of June is recognized each year as Migraine Awareness Month. In order to celebrate Migraine Awareness Month this year, The Will Erwin Headache Research Foundation launched a campaign designed to raise awareness of this debilitating disease by featuring four migraine or cluster headache survivors. These are their stories-
Hi, my name is Heidi and I suffer from cluster headaches. I would like people to know that cluster headaches are nothing like the common, throbbing headaches one might experience from dehydration, or caffeine withdrawal. It’s a relentless, violent, stabbing pain that feels like someone is carving your eye out of its socket while you’re awake. For me the attacks last about an hour if untreated. In the worst moments before I was diagnosed and had tools to relieve the pain, I would get through episodes by fantasizing about ways to end my life quickly. During my ‘cycle’ which is currently January to May, I’m constantly on oxygen and other strong medicines to combat the cycles and pain. Even with treatment options, it takes every ounce of my optimistic nature to not fall into a depression. It’s important for the public to be aware of and understand cluster headaches because it can easily happen to anyone. Very little is understood about how or why someone has these attacks. It’s my hope that we increase awareness and support research to better understand debilitating headaches and migraines. Together, let’s change this – for ourselves and those who we care for.
Hi! My name is Tony Taipale and I have cluster headaches – which I choose to call Horton’s neuralgia. I’ve had them for over 30 years. During this time they have taken everything from me and also given me much. When I was a teenager, I was an episodic, having 2 weeks of extreme pain twice a year. 25 years later I was chronic, having extreme pain almost non-stop, one after another. Today I am grateful for surviving. To me, I’m the victim of a series of violent assaults that no one knows are happening. You can’t escape and nobody can help you. You are alone. But when you find others who are surviving through the same pain, everything changes. You find hope and you’re no longer alone. I am currently working as an expert by experience at Horton’s Neuralgia in Finland. Helping raise awareness about my condition will save lives of fellow patients every day, all over the world. It is the most important thing we can do for the world and for others who are still suffering. I survived through the help of others and will pay it forward as long as I live.
My name is Anna and I have chronic cluster disease, migraine disease and trigeminal neuralgia. This journey has been tough. Being a female with cluster disease, it took me a very long time to get diagnosed. I was told for years, “Since you have migraines, all of your headaches are just migraines.” My grandfather had episodic cluster disease and I recognized the signs in me. For me, a cluster attack feels like I have a hornet stuck in my eye socket and it’s stinging me over and over again relentlessly for about two hours. The pain is severe, my eye is watering, my nose is running and stuffing. I pace the floors and rock when I can no longer stand. When the preventative medication stopped working and the disease worsened, I begged my doctor to allow me to see a different specialist. This specialist actually listened. Then the new battle began, figuring out how to treat my cluster attacks. I finally found success with a new preventative treatment, but I still had no abortive. After six months of really digging in my heels, I finally was able to access oxygen. I continue to find preventive and abortive treatments I can add to my toolbox. If you suffer from this terrible disease, know you are not alone.
Those that do know about CCH are aware that the pain is like none other. It is listed in the medical field as being more severe than amputation without anesthesia. I got my first attack at the age of 19. I was misdiagnosed until the age of 30 and my attacks were episodic until then. I currently suffer from 4-5 attacks every day with each one lasting an hour. My first attack of the day wakes me out of my sleep each night, ensuring that I don’t even deserve to rest. When an attack comes, I immediately hide away until the suffering has subsided as I have never enjoyed people seeing me in such pain. I’ve missed out on a social life and the feeling of being able to go out and spend time with my family without going into a cluster attack. (David Johnson)
The Will Erwin Headache Research Foundation also did a two-part interview with Fox 26 Houston to raise awareness for The Foundation as well as Migraine Awareness Month.