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Hope for Headache Sufferers

 

Amy Lubenetski went without hope for long stretches of time,but a hint of a song now plays in her soul. She is still cautious about expressing optimism because debilitating daily migraines have dashed so many of her dreams before, but since receiving treatment through St. Rose Dominican Hospitals’ Inpatient Headache Program, Amy will quietly admit that her hope is to one day live a healthy, full life that includes love, marriage and motherhood.

Chronic daily migraines have ruled nearly half of Amy’s life making it impossible for her to work or maintain much of a social life. Just listening to Amy describe her migraines is enough to make someone wince. They begin as a small twinkling light – a visual aura – followed by a sharp, stabbing pain that she says feels like a rod being rammed through her eye and into her brain. Amy’s pain has typically led to nausea, projectile vomiting and uncontrollable shaking. What’s more, just about the time her pain would subside to the point that she could get out of bed and clean up her bathroom, the next visual aura would appear and the process would repeat itself.

Inpatient treatment hasn’t cured Amy’s migraines (there is no known cure), but it has significantly reduced the frequency and intensity of her episodes. Amy finds the results of her treatment both remarkable and ironic. “I’d gone to UCLA, Scripts, Duke and Mayo for diagnosis and treatment, so I balked at the idea that a local headache specialist and hospital could tell me anything I hadn’t heard before,” says Amy.

“Yet, here I am feeling and functioning better than I have in years.”  Amy was admitted to St. Rose’s Inpatient Headache Program by Dr. Abraham Nagy, a neurologist who is one of only about 300 certified headache specialists in the United States. “When I met Dr. Nagy, I could instantly tell how knowledgeable and passionate he was about headache treatment,” says Amy. “He’s also very caring. He really listened to me describe my migraines, the endless forms of treatment I’ve gone through and the impact it has all had on my life. He used what I shared to help design a treatment plan just for me.”

While in the hospital, Amy received powerful (non-narcotic), intravenous drugs that broke the cycle of her migraines and helped control her nausea while she was weaned from a plethora of prescription drugs that weren’t effectively managing her chronic condition. Doing so enabled Dr. Nagy to introduce medications that have proven far more effective in providing her relief. She also received access to an integrated team of nutritional counselors, physical therapists and chaplains that offered her support and recommendations to further prevent or minimize her migraines.

It’s been just over a year since Amy first participated in inpatient headache treatment and she has had to return for additional treatment aimed at interrupting the pattern of her migraines. “The treatment has definitely given me relief and a better quality of life, but it isn’t a cure, and quick fixes for a headache free life aren’t guaranteed,” says Amy.

That is a concept another young patient, Jenny Scott, has come to understand. Her first intense headache came on the day after she graduated from college and soon her headaches never let up, day or night. Primary care physicians, pain management specialists and neurologists repeatedly tried to help quiet the hurt in Jenny’s head, but five years and 50 medications later, the spiral pattern of pain pulsating through her head, diagnosed as chronic migraine, was still present.

It may sound unusual – even alarming – that Jenny was prescribed 50 different medications, but it’s not entirely uncommon. Headaches are the result of a complex set of interactions between the brain, blood vessels and surrounding nerves that aren’t fully understood. As such, the average headache sufferer first seeks help from their primary care physician and may, over the course of a number of years, see several other doctors and be prescribed numerous medications before receiving an accurate diagnosis. Even with an accurate diagnosis, finding the best medications to treat a patient’s symptoms may take several tries and periodic “tweaking.”

Inpatient headache treatment helped break the cycle of Jenny’s pain and safely remove her from several prescription medications allowing Dr. Nagy to introduce new treatments and track Jenny’s response to them. Dr. Nagy discovered that Jenny suffered from hemicrania continua, rather than chronic migraine. Rare and relentless, hemicrania headaches affect one side of the brain and are difficult to diagnose but respond well to specific treatment.

With a correct diagnosis, Dr. Nagy prescribed Jenny just one prescription drug and asked her to have patience and to hold out hope (she did) to give the medication time to work (it has).

“I was taking numerous medications every day and still suffering from pain that I would rank as a five to six (0 being no pain and 10 being unbearable pain) every day of my life,” says Jenny. “I’d now rank my daily pain as a highly manageable 1. My headaches are now more of an afterthought than something that always demands my attention.”

Jenny refers to the care she received as “life changing” as does Dorla Dautrich, another Inpatient Headache Program patient. While hospitalized, Dorla took advantage of spending quiet, meditative time walking the hospital’s outdoor labyrinth, that – with its gray twists and turns – rather resembles the brain.  

“Dr. Nagy and St. Rose really worked to get inside my head, to know me and to understand my headache experience,” says Dorla. “I think that level of caring leads to quality treatment.”

 Truly understanding patients is something Karen Jones feels proud of as the Inpatient Headache Program coordinator – and one of the program’s former patients. “I can empathize with our patients,” says Karen. “I know how hard it can be to live with headaches. I’ve suffered from them since I was 5 years old.”

 Karen knows that it might sound cliché but says that when she was discharged from the program, she went home and opened the curtains in her living room for the first time ever. “It was such a liberating feeling to let the light shine in,” says Karen.

Shedding light on the help available to people who suffer chronic headaches and migraines is something St. Rose Dominican Hospitals will continue to do. 

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