Throughout his life, Lorri Devlin had been told that the disturbing feelings she often experienced had a simple cause: she was "just anxious".
At the age of 5, Devlin remembers being woken up in the middle of the night by the sound of his beating teeth. Feeling disoriented and saying that "something was very wrong", he entered his parents' room. But when he spoke, the result was meaningless.
His pediatrician, he recalled, pronounced "a nervous child … a candidate for the ulcer". In high school and college, Devlin often felt a strange sense of detachment. As an adult, she developed a crest of scar tissue to bite inside her cheek while she slept. Sometimes, if he was severely stressed, he fainted.
Over the years, Devlin, who had been trained as a nurse, had tried therapy, anti-anxiety medications and meditation to cope with his condition, diagnosed as panic disorder. [1
But almost two years ago, an accident on an airplane flight shocked the life of the retired insurance company manager. After more than 50 years, Devlin finally learned the cause of the problem that had colored almost every aspect of his life.
"At the beginning I felt huge waves of relief," said Devlin, now 60, a resident of Cape Cod. "Then I went through a period of rage, not just for the medical profession, but for myself, I'm sad for me younger, I had to fight so hard to keep me together, but I'm proud to have through it."
"Lorri & # 39; s nervous"
One morning while he was saying the Pledge of Allegiance at his elementary school in Stoughton, Massachusetts, Devlin said that he felt as if his body was buzzing, like a feeling of inexplicable terror rolled up his torso. He feared he could die.
Her parents told her it was another "nerve attack". His family had a universal explanation: "Lorri is nervous". And nervousness ran in the family.
"My mother was an anxious person and she took it well," recalls Devlin, the eldest of four girls. "We went to church and we prayed a lot, I felt I had to be strong – we are stoic Yankees – but I was really ashamed".
Devlin has learned to keep his feelings for himself.
Once playing softball, Devlin, then 12, heard the buzzing again, accompanied by a momentary inability to see or lift the arm. "You were trembling," a cousin told her later.
At age 17, she remembers waking up in terror, then summoning her courage and telling her mother, "I think I need to see someone."
He said that he vividly remembers his mother's response. "She was sewing and she looked up and said," Do you think you should see a psychiatrist? Go back to bed. There's nothing wrong with you, "Devlin recalled.
The scornful response was overwhelming, but over the years 70 mental illness was often considered a shameful fault. his mother was particularly sensitive because his brother, a World War II veteran, had spent time in a psychiatric hospital for what is now called post-traumatic stress disorder.
Devlin said he had learned to live with his feelings, gutting her through the nursing school and two difficult pregnancies.
Her dentist observed the six teeth that she had been crying for several years and the crest of scar tissue along the inside of her cheek and lip, which she was biting while she was sleeping, he also accused a guilty family member: anxiety.
In his 30s, Devlin decided he probably suffered from panic attacks and ini the therapy ceased, 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, said Devlin, encouraging her to take meditation and prescribe anti-anxiety medications, which Devlin said to be taken sparingly. Even so, the episodes continued.
The event that changed Devlin's life took place in April 2017, while she and her second husband flew home from a vacation in Captiva Island, Florida.
In mid-flight, Devlin had been sleeping when she woke up suddenly, feeling that something was "terribly wrong". The walls of the plane seemed thin, he said, and she felt a rolling terror. The last thing you remember before losing consciousness was asking for help from your husband.
Devlin woke up shortly after feeling confused and agitated. He settled on the middle seat and in the corridor, his head in the arms of her husband. Flight attendants crowded around her, inexplicably stroking them with wet paper towels. Devlin realized that his jeans were wet: he had inadvertently urinated. "I was mortified," he said.
One 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," There's something wrong, I'm going to faint, "before falling back to my place, after a few seconds my eyes opened and my My mouth dropped open, I began to rock back and forth violently, staring straight ahead. "
The doctor asked if he was afraid of flying. He seemed to ignore his answer – he did not – and patted her on the arm, telling her that he once fainted during a flight.
Back home, Devlin decided she had not fainted. His discharge papers listed "seizure vs 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 another passenger who had witnessed the event said, "He's having an attack."
He thought of all the times in his life that he had experienced something similar: the buzz, the feeling of rolling of terror, the detachment. Devlin compiled a diary, then wondered why – and especially his doctors – he could lose what seemed so obviously evident
. A few days later, Devlin saw his internist. "He was not a weak", his doctor recalls saying. "You had an attack".
Devlin referred to the Beth Deaconess Medical Center in Boston, a Harvard University Hospital, where he had previously been a patient. Scrolling through the list of specialists, she turned to Bernard S. Chang, head of the division of epilepsy and clinical neurophysiology.
Evident – and neglected
Devlin remembers feeling nervous before his first encounter with Chang. He feared that he, like other doctors he had seen, "would discredit her like another, anxious woman."
Chang instead listened to his description of the incident in mid-air and less dramatic episodes dating back decades.
Devlin that his story and his medical records seem consistent with epilepsy of the temporal lobe. It is believed that more than three million Americans have epilepsy, a chronic neurological disorder. The event during the flight was probably a tonic-clonic attack or large, severe, convulsions that are popularly associated with epilepsy. Devlin's inability to speak or move at other times meant partial or focal crisis.
Convulsions are the result of an abnormal electrical activity in the brain. Epilepsy can be caused by a head injury, disease or abnormal development; in many cases, including Devlin, the cause is unknown. It is common for people with epilepsy to experience strange emotions or sensations. Those with temporal lobe epilepsy can experience auras, which can cause a foreboding sensation, a strange odor or taste, or a rolling sensation similar to being on a roller coaster.
Anxiety or depression can occur as a result of seizures or a side effect of drugs to control them.
There is no cure for epilepsy, but in most cases drugs can control seizures.
Brain disorder has long been the subject of myth and stigma, partly stemming from its centuries – an association with being "possessed" or demonic. Stigma, said Chang, helped delay the diagnosis. Epilepsy is sometimes misdiagnosed as a psychiatric illness, including schizophrenia.
"We see children diagnosed with [attention-deficit disorder] because they have fixed episodes" – a behavior commonly seen in a crisis of absence.
The delayed diagnosis is not rare, Chang said, but a 50-year delay is.
"It is easy now in retrospect" to make the diagnosis in the case of Devlin, he added, but other disorders must be excluded.
"We were convinced enough to start you on the drug immediately," Chang said. Devlin then underwent an MRI to rule out a brain tumor and an electroencephalogram, which records electrical activity in the brain. Both tests were normal; a normal EEG in subjects with epilepsy is not unusual, say neurologists.
Devlin's rapid and dramatic reaction to the medication for epilepsy confirmed the diagnosis.
"I was amazed," said Devlin, who felt transformed in a few days from the beginning.
He no longer bit his lip or his cheek while he slept. She did not wake up with sore muscles. The sense of detachment vanished, along with the buzz. He felt calm. The only side effect was drowsiness, to which it was adequate.
"I literally cried out with relief at finally having a diagnosis, an intelligent doctor and a drug to manage my symptoms," he said.
In addition to the stigma, Devlin believes her diagnosis may have been delayed by the time her attacks occurred often – during sleep – and because she was wary of describing her symptoms.
By doing otherwise, he worried "he would make me sound, well, crazy".
The inability to consider epilepsy was particularly surprising given Devlin's family history.
One of her sisters was diagnosed with epilepsy of the temporal lobe at the age of 20. And an aunt experimented with fixed spells, even if she was never diagnosed. (Genetics are believed to play a role in the development of some forms of the disorder.)
Devlin said the diagnosis triggered a generalized re-evaluation of his life.
"It's overwhelming," he said, adding "I wonder" how my life would have been different "if he had not spent decades convinced he was" simply anxious "- and seriously imperfect.