Karen | Norfolk, Virginia
Karen was on her way to church in March 2012 when she fell down the steps of her Norfolk home — head first into a wall. Other than a sore neck, she felt okay. Two days later, Karen says she developed “the worst headache of [her] life.” It was the start of a seven-year odyssey of illness, disability, and isolation she thought would never end.
Karen, then 59, went to see her primary care physician (PCP). In addition to a severe headache, she was experiencing nausea, vomiting, vertigo, and vision problems. “I also felt dazed and extremely drowsy,” she adds.
Her PCP sent her for an MRI and, later, a CT scan. Although the tests came back negative, he suspected she had a concussion. By the time Karen saw her PCP again a few weeks later, her drowsiness had resolved. Instead, she was experiencing insomnia, accompanied by:
- Persistent migraines
- Nighttime hallucinations
- Exercise intolerance
- Increased sensitivity to light, sound, and movement
- Mood swings, including bouts of uncontrollable crying
“It was frightening,” admits Karen. Alarmed by her symptoms, Karen’s PCP referred her to a neurologist who diagnosed her with post-concussion syndrome. He focused mainly on prescribing medication for the migraines, telling her, “There’s no magical treatment to speed the concussion recovery process.”
Although Karen continued to experience episodes of severe vertigo and nausea, it was another two years before her neurologist detected nystagmus — involuntary, repetitive eye movements — and referred her to a vestibular therapist.
A Second Concussion and Worsening Symptoms
Months of vestibular/balance therapy, focused on addressing Karen’s vertigo, difficulty focusing, and maintaining balance, helped to ease her symptoms, although she still experienced occasional vertigo and frequent migraines. “I was better, but I knew deep down I wasn’t totally healed,” she says.
Then, in April 2017 — five years after her first concussion — Karen bumped heads with her young granddaughter. She thought nothing of it until a few days later when she woke up with a severe migraine, nausea, and vertigo that left her unable to stand. Her relentless symptoms forced her to stop driving and retire from her job as a nursing instructor.
Karen eventually saw two more neurologists. A local doctor diagnosed her with chronic atypical vestibular migraines, ordered more vestibular therapy, and increased her medications. Still not better, Karen sought another opinion from a highly regarded New York concussion specialist, who said she had sustained a second concussion and recommended rest, meditation, and yoga. “Concussed brains require a lot of rest,” he told her.
“Out of desperation to reclaim my life, I followed his advice. But, over time, I felt worse and worse,” says Karen. “My world became very small. I wondered if I would ever be well enough to work, travel, or, most importantly, enjoy my grandchildren.”
Karen increasingly spent more time at home. “I could not stand, walk, or be in a large crowd for more than 10 minutes before experiencing extreme nausea, weakness, and nearly passing out,” she says.
The first sign of hope came during an internet search when she stumbled upon a blog written by a grateful Houston man who had been treated at the UPMC Sports Medicine Concussion Program. “That was the luckiest day of my life,” says Karen. “I turned to my husband and announced, ‘We’re going to Pittsburgh!’”
Several weeks later, Karen was in Pittsburgh undergoing a daylong series of tests and assessments with Michael “Micky” Collins, PhD, the program’s clinical and executive director, and his team of specialists. During her initial appointment with Dr. Collins, she learned that rest, as previously prescribed, was the exact opposite of what she needed to do to improve.
“From day one, Dr. Collins assured me that concussions are treatable,” says Karen. “His confidence inspired me. He and his team gave me hope — something I had been without for a very long time.”
“It was life changing! UPMC’s team of experts knew and understood what I was experiencing, both physically and emotionally. They absolutely “got it,” unlike so many others,” she adds.
Under Dr. Collins’ care, Karen began a concussion treatment plan that included exertion, vestibular, and physical therapies tailored specifically to address her symptoms. Karen’s daily “homework assignments” included challenging exercises and deliberate, repeated exposure to such symptom-causing triggers as ceiling fans, bright lights, loud restaurants, movie theaters, and shopping.
“Being exposed to things I had avoided for so long was brutal. Initially, it would take an hour to recover from my intense symptoms, then I would “expose and recover” again — over and over,” says Karen. “It was grueling, but my determination to more actively enjoy my three grandchildren motivated me to do exactly what the team prescribed.”
Slowly, Karen began to see improvement. Six weeks later, when she returned to Pittsburgh for a follow-up appointment, the team prescribed even more exercises while reinforcing their confidence in her eventual recovery.
Over the next year, Karen’s world grew bigger as her symptoms gradually improved and she ventured out more. She was able to socialize, shop, go out to dinner, and, by April 2019, had started driving again. She also resumed teaching and recently completed a 5K walk.
“It was wonderful to regain my independence,” says Karen. “But, by far, what I value most is being able to play again with my grandchildren and take them to the park or a museum, instead of lying in bed.”
“Thanks to Dr. Collins and his all-star team, my life is so much better now. It’s frightening to think where I’d be today if I hadn’t found the UPMC Sports Medicine Concussion Program.”
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