June is Migraine Awareness Month. The U.S. Pain Foundation submitted this extensive story about one of their Pain Warriors and how she battles migraines.
JP Summers has lived with migraines since adolescence. Growing up in Abilene, Texas, she had a strong family support structure and an ideal childhood, playing soccer, learning ballet and attending school. When puberty hit, her world turned upside down. Immediately she went from being that happy-go-lucky, active child to a young girl who suffered needlessly.
By the time she entered high school, JP found herself constantly hospitalized due to severe headaches and blackout episodes. The strong medications she had to take required a visit to her doctor in Dallas once a month – a three-hour car ride – for blood work. Depending on the results, her neurologist either changed her medication dose or added a new prescription. Each time she felt a new symptom she would undergo further tests to make sure nothing else was wrong. It became an unending cycle of tests and exams followed by medication increases and changes.
By her junior year, JP relied on Imitrex injections. Imitrex is a drug that treats the severe, throbbing headache, nausea and sensitivity to light and sound. Anytime she felt a migraine coming on she would give herself an injection, which would usually improve her symptoms. However, because of the frequency of her migraines, she reached the maximum dosage by the beginning of her senior year of high school.
College life at Texas Tech consisted of ups and downs. While better able to manage her symptoms of blurred and double vision, nausea, and extreme sensitivity to sounds and smells, JP had to be prepared at all times. She carried Imitrex with her everywhere. While she wished she didn’t have to take such precautions, JP was proactive. Looking to find possible triggers, she documented how weather changes, fluorescent and flashing lights, smells such as perfume or incense and certain foods affected her symptoms. She also made sure everyone around her knew about her issue. Her roommates, friends, boyfriend and dorm members knew where she had her medicine and how to inject her if needed.
Two years after she began college she married, had a daughter and moved to her husband’s hometown in Wisconsin. Her once episodic migraines – which occurred four to seven times a month – decreased to about two a year after the birth of her daughter. For the next five years, JP continued to do well. She worked as a personal banker and was the wife and mother she wanted to be.
Unfortunately, the progress she made during her first pregnancy didn’t carry over to the next one. Her migraines came back with vengeance – the 40 weeks were brutal. Unable to take medications due to safety concerns, she was in tremendous pain by the time her son was born.
It wasn’t long before JP became pregnant with her third child. Two years after his birth, her health began to slowly deteriorate. Every day she dealt with some form of head pain. She wore sunglasses against the fluorescent lights when grocery shopping. When she and her husband attempted a date night, JP feared having a spell due to the smells of scented candles or the perfumes and colognes of other patrons. Humidity gave her blurred vision, and there were mornings when severe dizziness made her unable to stand upright.
Everything became a challenge, and yet JP pressed on. She was determined to live her life despite debilitating migraines. She had no idea that her health ordeals were about to get much worse. In July 2012, JP woke thinking she was having a stroke. Dizzy, she had blurred, Alice In Wonderland-like tunnel vision and her head hurt on one side. Moments later she had no vision at all. Her motor skills were greatly impaired and she couldn’t stand without swaying or falling.
Her ENT specialist and vestibular physical therapist ruled out vertigo and referred her to a neurologist, who ordered more tests to rule out a brain tumor. The doctor concluded her symptoms were all related to chronic migraine and cluster headaches. Chronic migraines are defined as more than 15 headache days per month over a three-month period. Additionally, on eight or more days a month for at least three months, an individual must experience the majority of the following symptoms: pain on one side of the head, pulsating or throbbing sensations, pain that is moderate to severe and exacerbated by physical activity. Furthermore, an individual must have nausea, vomiting or both, and sensitivity to light or sound.
Cluster headaches, on the other hand, are a neurological disorder characterized by sudden, severe, reoccurring headaches on one side of the head. These headaches typically occur around the eye and follow cyclical patterns. Recurring over a period of time, people who have cluster headaches experience an episode one to three times per day during a period of time that can last from two weeks to three months. Cluster headaches are one of the most painful types of headaches and are typically more intense than migraines.
While relieved to have answers concerning the neurological symptoms, JP found herself debilitated. After working for 16 years, she could no longer perform her job and was let go. She could not even get out of bed. She would lie in a dark room all day unable to eat because she couldn’t lift a fork or spoon. Eighteen out of 24 hours each day she was crippled by pain.
Having young children only made the suffering and guilt worse. She could no longer drive. Because she was incapable of caring for her kids, her mom came from Texas to live with her family and took over most of the housework, cooking and child responsibilities while also watching JP. It was too dangerous for JP to be alone during the day. Walking from her bed to the bathroom, JP gripped the wall so she would not fall down. Her life, and that of her entire family’s, was permanently changed.
Her neurologist and doctors were working tirelessly with her to find her some relief. Botox was suggested. An injectable neuro-toxin, Botox is a preventive treatment option for chronic migraines. Very fine needles are used in seven areas of the head to inject the medicine. These injections can reduce the symptoms associated with a migraine headache.
Receiving insurance approval for each treatment became a battle for JP. She first had to prove that other medications and therapies did not work for her. Enduring six months of “fail first” practices infuriated her, but she finally received consent from her insurance company.
Leaving her initial Botox treatment feeling much worse devastated JP. She’d had high hopes that it would be the answer. She called her doctor in frustration and learned that the positive effects might take time to feel. Botox is a toxin, and for some, it takes a while for the body to respond.
JP tried to hold on to hope. Two weeks later, she woke up feeling normal. There was no pain, no neurological symptoms: nothing. She was herself. The relief lasted two days.
Ready for another treatment, JP faced more resistance from her insurance company as they again rejected her request. JP felt powerless and alone. Finally gaining relief after 240 days of torture, she couldn’t understand why a therapy that was helping her would be denied. Her neurologist defended her, sending a letter to the insurance company. The treatment was finally approved and has continued to be since.
After her second session, her pain levels decreased from a 9/10 to a 6/7. A year later, JP continues to push through, making strides and staying positive. When absolutely needed, she takes an Imitrex pill to curtail severe head pain. But Botox injections every 90 days are her answer in conjunction with supplements such as magnesium and melatonin.
Today, JP would say she is 65 percent better. She continues to learn her boundaries and takes each day as it comes. There are still mornings she wakes lightheaded or her motor skills are impaired. On these days, she doesn’t drive and avoids the stairs in her house. She is more careful using knives while cooking and makes meals in the crockpot to avoid burning herself on the stove. While living like this every day is tiresome, she and her family have learned to adapt and adjust.
One huge breakthrough for JP was when she was able to rejoin her family in their monthly movie day. Being able to sit in a movie theatre and watch an entire film was a personal triumph. It had been years since she was able to attend such a family outing. The whole experience made her hopeful for the future.
While JP still tries to push herself to see how much further she can go, she is cognizant of her body’s limitations. She knows spending six hours out of the house will exhaust her, so she tries to find something else that she can accomplish for that day. It is all about doing what she can in that moment and being proud of that.
In February 2014, JP was invited to attend the 7th Annual Headache on the Hill, a two-day lobbying event in Washington, D.C. As an attendee, JP had the opportunity to meet with one of Wisconsin’s congressmen and senator’s aide. She explained to them the burden of living with various headache disorders and the need for new research and better treatment options.
This trip was a huge accomplishment. Not only did JP successfully advocate with state lawmakers, but she also overcame a major hurdle. The first night she arrived she had a cluster headache. On the second day she had a cluster headache in the middle of training. Experiencing intense pain, it took several people to help JP out into the hallway. The pain is always paralyzing for JP (those living with cluster headaches often compare it to having a limb amputated without anesthesia or labor contractions). Yet she pushed through, attending as many of the scheduled activities and events as possible. While testing her limits, the trip proved to JP that her strength and will are unstoppable.
Yet even with these new achievements, she carries guilt knowing how much her health has impacted her family. Watching them silently suffer as she looked for ways to cope was upsetting. She understands that her family and friends want to help, and she recognizes how fortunate she is to be surrounded by such love, strength and support. Yet it is difficult at times to be always on the receiving end of assistance.
Finding groups such as Chronic Migraine Awareness and Clusterbusters was a much-needed outlet for JP. Although she had been living with some form of a headache disorder the majority of her life, she was still searching for information and longed to talk with others who could fully relate. Both groups helped her stay positive and strong, guiding her through her journey, and providing support as she and her family deal with her youngest son’s recent diagnosis of abdominal migraines.
She hopes others dealing with similar circumstances don’t lose hope or get discouraged. “You have to be patient, keep looking for relief and be willing to try different forms of therapy. For many of us, there is no quick fix. All the more reason to become informed and stay optimistic.”
JP wants the public to understand the severity, implications and complications that arise from having chronic migraines, cluster headaches or any form of a headache disorder. Too often, society dismisses these conditions as common headaches. For the 36 million Americans living with migraines and the millions of others dealing with serious forms of headache disorders, aspirin is not the answer. There needs to be more compassion and understanding regarding headache disorders so those truly suffering find relief.
JP Summers is a fighter. While there are continued daily struggles, JP has found a way to thrive again. A published author, she is back to writing on days when she is well. She refuses to sweat the small stuff, focusing her attention on making a difference. Recognizing that she is a stronger person physically and emotionally because of what she has endured, she is using her innate passion and drive to share her experiences living with chronic migraines and cluster headaches. Pain may have changed JP’s life, but not necessarily in a bad way.
“Something has to be done, and that is why I am speaking up. The better I feel, the more I want to support this cause of raising awareness to create public understanding and funding for new research. I am advocating not only for myself, but also for my son and the millions of others I do not know who suffer along with us. I am not giving up.”