How She Fights Back
Last year, the FDA approved the first drug ever developed specifically for the treatment of cluster headache. Since then, the quality of life, amount of disability and the decrease in frequency has been life-changing for many people living with cluster headache, including Leslie Kingston.
“I thought I was dying.”
Three years ago Leslie underwent surgery to remove an acoustic neuroma, a benign tumor that typically affects the main nerve leading from the inner ear to the brain. The traumatic surgery left her deaf in one ear.
To make matters worse, two weeks after surgery, Leslie experienced a whole new kind of pain, unlike any she could have ever fathomed. Unknowingly, she was having her first cluster attack. “I went to the ER three times because I thought I was dying,” said Leslie. “I couldn’t get into see a neurologist fast enough.”
In addition to cluster attacks, Leslie developed vertigo, seizures, and suffered severe fall injuries. She required several hospitalizations and often encountered staff that didn’t understand cluster headaches or how to even begin to treat them.
“I wouldn’t be here without… “
Still her neurologist did not give up, even with her complex set of neurological conditions. “My doctors are great! They threw everything they had to help me” Leslie said. “I credit my neurologist and my husband for saving my life many times. I wouldn’t be here without their support.”
Leslie shared that her relationship with her husband and her daughter has actually improved through all of this, however illness forced her to leave parts of her life behind. Prior to this experience, she operated a grooming shop.
In 2015, Leslie’s poodle, Sylvia, helped her win the All American Grooming Contest in 2015. While she still owns her shop, she rents it to a groomer who can meet the demands of the job. “I didn’t have the heart to close it down. I couldn’t be defeated.”
“I couldn’t imagine not using it.”
At her worst, Leslie experienced four attacks a day that lasted two hours each. Her neurologist prescribed a multitude of different treatments to attempt to control the beast inside her head. During all these trials, she endured side effects with little reduction in cluster headaches attacks.
Finally, her neurologist prescribed Emgality, the first preventive treatment approved for cluster headache. She was also referred to a pain specialist. The specialist helped her to create a multi-pronged plan to fight her disease. That plan includes Emgality, highflow oxygen and a vitamin regimen.
Leslie gives herself an injection every 30 days at home and it helps to keep the cluster attacks at bay. “I still get occasional morning headaches but they are at the worst 6.5,” said Leslie. “I’ve been taking Emgality for a year now. I couldn’t imagine not using it.”
While Emgality is not successful for every person with cluster headaches, it is worth celebrating this new tool in our fight against this beast. Leslie’s story is one of hope and perseverance over a disease that can take so much from those who live with it.
Mrs. Kingston lives in Indiana with her husband, daughter, and adorable dogs.
Disclaimer: Eli Lilly is a sponsor of Clusterbusters, however this is not a sponsored post or endorsement of their Emgality 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.