All her life, Lorri Devlin had been told that the disturbing feelings she experienced often had a simple cause: she was "simply anxious."
At age 5, Devlin remembers being shaken awake in the middle of the night by the sound of his teeth chattering. Feeling disoriented and that "something was very wrong," she entered her parents' room. But when she spoke, the result was an uproar.
Her pediatrician, she recalled, called her "a nervous girl." . . a candidate for ulcer. " In high school and college, Devlin often felt a strange sense of detachment. When she was an adult, she developed a crest of scar tissue by biting the inside of her cheek while she slept. Sometimes, if she was very stressed, she fainted.
Over the years, Devlin, who was trained as a nurse, tried therapy, anti-anxiety medications and meditation to cope with her condition, which was diagnosed as a panic disorder.
"I was ashamed that he was such a weak person," he said.
But almost two years ago, an incident on an airplane flight affected the life of the retired executive of the insurance company. After more than 50 years, Devlin finally discovered the cause of the problem that had colored almost every aspect of his life.
"At first, I felt huge waves of relief," said Devlin, 60, who lives on Cape Cod. "Then I went through a period of anger, not only with the medical profession, but with myself. I'm sad for the youngest self. I had to fight so hard to stay together, but I'm proud to have overcome it. "
& # 39; Lori is nervous & # 39;
One morning, while saying the pledge of allegiance at his elementary school in Stoughton, Massachusetts, Devlin said that it felt as if his body was buzzing, while a sense of inexplicable terror rose up his torso. He worried that he might be dying.
His parents told him it was another "nervous breakdown." His family had an explanation for all purposes: "Lorri is nervous." And the nervousness ran in the family.
"My mother was an anxious person and she took it easy," recalled Devlin, the oldest of four girls. "We went to church and prayed a lot. I felt that I had to be strong, we are Stoic Yankees, but I was really ashamed. "
Devlin learned to keep her feelings to herself.
Once, while playing softball, Devlin, after 12 years, felt the buzz again, accompanied by a momentary inability to see or raise his arm. "You were shaking," a cousin told him later.
At 17, she remembers that she woke up in terror, then she gathered her courage and said to her mother: "I think I need to see someone."
She said she vividly remembers her mother's response. "She was sewing and she looked up and said," Do you think you need to see a psychiatrist? "He returns to bed." There's nothing wrong with you, "Devlin recalled.
The disdainful response was overwhelming, but in the 1970s, mental illness was often considered a shameful flaw. Devlin said his mother was especially sensitive because his brother, a veteran of World War II, had spent time in a psychiatric hospital for what is now called Post-traumatic stress disorder.
Devlin said he learned to live with his feelings, eliminating it through nursing school and two difficult pregnancies.
His dentist commented on the six teeth he broke for several years and the crest of scar tissue along the inside of his cheek and lip, which he bit during sleep. He also blamed a family culprit: anxiety.
In his 30s, Devlin decided that he was probably suffering from panic attacks and began therapy, which lasted for years. After describing her feelings of detachment, disorientation and terror, the therapist agreed with her self-diagnosis.
The therapist was kind and helpful, Devlin said, encouraging her to engage in meditation and prescribing anti-anxiety medications, which Devlin said she took in moderation. Even so, the episodes continued.
The event that would change Devlin's life occurred in April 2017, when she and her second husband traveled to their homes on a vacation on the island of Captiva, Florida.
Halfway through the flight, Devlin had taken a nap when he suddenly woke up, feeling something was "terribly wrong". The walls of the plane seemed very thin, he said, and he felt a resounding terror. The last thing she remembers before losing consciousness was asking her husband for help.
Devlin woke up shortly after feeling confused and agitated. She was lying in the center and in the aisle seats, with her head in her husband's lap. The stewardesses crowded around her, inexplicably patting her with wet brown paper towels. Devlin realized that his pants were wet: he had urinated involuntarily. "I was mortified," she said.
An hour later, after landing in Providence, the paramedics took her to a small community hospital.
In the emergency room, "my husband told the doctor that I had said:" Something is wrong, I'm going to faint "before returning to my seat After a few seconds, my eyes opened and My mouth opened and I started to swing violently from one side to the other, looking straight ahead.
The doctor asked him if he was afraid of flying. He seemed to ignore her response (she did not) and patted his arm, telling him that he had once fainted during a flight.
At home, Devlin decided he had not fainted. His discharge papers had listed "seizures against syncope," which meant that doctors were not sure if his brief loss of consciousness was due to syncope, also known as fainting. Devlin's husband told her that a fellow passenger who had witnessed the event had said: "She is suffering an attack."
He thought of all the moments in his life that he had experienced something similar: the buzz, the sense of terror, the detachment. Devlin compiled a record, then wondered how she, and especially her doctors, might have missed what seemed so obvious.
A few days later, Devlin saw his internist. "That was not a faint," recalls his doctor saying. "You had an attack."
Devlin went to the Beth Israel Deaconess Medical Center in Boston, a teaching hospital at Harvard, where he had previously been patient. Reviewing the list of specialists, it was decided by Bernard S. Chang, head of the division of epilepsy and clinical neurophysiology.
Obvious – and overlooked
Devlin remembers feeling nervous before her first encounter with Chang. She worried that he, like other doctors she had seen, "wrote her as another anxious woman."
Instead, Chang heard his description of the incident in the air and less dramatic episodes going back decades.
He told Devlin that his medical history and records appeared to be consistent with temporal lobe epilepsy. It is believed that more than 3 million Americans suffer from epilepsy, a chronic neurological disorder. The event in flight was probably a tonic-clonic or great-bad attack, the dramatic seizures that are popularly associated with epilepsy. Devlin's inability to speak or move at other times meant partial or focal seizures.
Seizures are the result of abnormal electrical activity in the brain. Epilepsy can be caused by a head injury, a disease or an abnormal development; In many cases, including Devlin, the cause is unknown. It is common for people with epilepsy to experience strange sensations or emotions. People with epilepsy of the temporal lobe may experience auras, which can cause a feeling of foreboding, a strange smell or taste, or a rolling sensation similar to being on a roller coaster.
Depression or depression may occur as a result of seizures or as a side effect of medications to control them.
There is no cure for epilepsy, but in most cases medications can control seizures.
Brain disorder has long been the subject of myths and stigmas, in part because of its association centuries ago with being "possessed" or demonic. The stigma, said Chang, has contributed to delaying the diagnosis. Epilepsy is sometimes misdiagnosed as a psychiatric illness, including schizophrenia.
"We see children who are diagnosed with [attention-deficit disorder] because they have initial episodes, "a behavior that is commonly observed in absence crises.
Late diagnosis is not uncommon, Chang said, but a 50-year delay is.
"It's easy now, in hindsight" to make the diagnosis in Devlin's case, he added, but other disorders must be ruled out.
"We were convinced enough to start taking his medication immediately," Chang said. Devlin then underwent an MRI to rule out a brain tumor and an EEG, which records electrical activity in the brain. Both tests were normal; Neurologists claim that a normal EEG in a person with epilepsy is not unusual.
Devlin's rapid and dramatic reaction to the drug against epilepsy confirmed the diagnosis.
"It surprised me," said Devlin, who felt transformed within days of starting.
She no longer bit her lip or the inside of her cheek while she slept. She did not wake up with aching muscles. The sense of detachment disappeared, along with the buzzing. She felt calm. The only side effect was drowsiness, to which she has adapted.
"I literally cried with relief to finally have a diagnosis, an intelligent doctor and a medication to control my symptoms," he said.
In addition to stigma and denial, Devlin believes that his diagnosis could have been delayed at the time attacks often occurred (during sleep) and because he was prudent in describing his symptoms.
Doing the opposite, he worried "would make me sound, well, crazy".
The failure to consider epilepsy was particularly surprising given Devlin's family history.
One of her sisters was diagnosed with temporal lobe epilepsy at the age of 20. And an aunt experienced episodes of observation, although they never gave her a diagnosis. (It is believed that genetics plays a role in the development of some forms of the disorder).
Devlin said the diagnosis led to a general reassessment of his life.
"It's overwhelming," she said, adding, "I wonder how my life would have been different" if I had not spent decades convinced that I was "simply anxious" and had serious flaws.
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