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Fear was the diagnosis, but it took years before the real problem was found



Lorri Devlin had told her all her life that the disturbing feelings she often felt had a simple thing: she was "just scared."

At the age of 5, Devlin recalls having to rattle the sound of her teeth in the middle of the night. She felt disoriented and said, "Something was wrong," she entered her parents' bedroom. But when she spoke, the result was a jargon.

Her pediatrician, she recalls, told her "a nervous kid." , , an ulcer candidate. "In high school and college, Devlin often felt a strange sense of distance. As an adult, she developed a ridge of scar tissue by biting her cheek while sleeping. Sometimes, when she was severely stressed, she fainted.

Over the years, Devlin, a nurse trained, had tried therapy, anti-anxiety medications, and meditation to cope with her diagnosed as a panic disorder condition.

19659007] "I was ashamed that I was such a weak person," she said.

But almost two years ago, an incident on an airplane flight was the life of the retired insurance company abrupt. After more than 50 years, Devlin finally got to know the cause of the problem, which had affected almost every aspect of her life.


Lorri Devlin, 60, has known for 55 years what she had before her nerves or other factors. When she found out what the problem really was, she was shocked – and got angry. (Family Photo)

"At first I had massive waves of relief," said Devlin, now 60, who lives on Cape Cod. "Then I experienced a time of trouble, not only among the medical profession, but also with me. I am sad for the younger me. I had to fight so hard just to hold myself together, but I am proud that I made it. "

" Lorri is nervous & # 39;

One morning when I said Allegiance's promise at her elementary school in Stoughton, Mass. Devlin said she felt like her body was humming as an inexplicable horror rolled up her upper body. She was worried she might die.

Her parents told her it was another "nerve attack." Her family had a general purpose statement: "Lorri is nervous." And nervousness was in the family.

"My mother was a caring person and accepted it," recalls Devlin, the eldest of four girls. "We went to church and prayed a lot. I felt like I needed to be strong – we are Stoic Yankees – but I was really ashamed. "

Devlin learned to keep her feelings to herself.

Once, as Devlin played softball, he felt the hum again accompanied by a momentary inability to see or lift her arm. "They were shaking," a cousin later said.

At 17, she remembers how she woke up startled, then gathered her courage and told her mother, "I think I have to see someone."

She said she was vividly remembering her mother's answer. She sewed and she looked up and said, "You think you need a psychiatrist? Go back to bed. There's nothing wrong with you, "recalls Devlin.19659019 The dismissive response was devastating, but in the 1970s, the mental illness was often considered a shameful character error, and Devlin said her mother was particularly sensitive because her brother, a veteran, was the most vulnerable

Devlin said she had learned to live with her emotions She overcame the nursing school and two difficult pregnancies.

Her dentist noticed the six teeth which she broke over several years, and the back of the scar along the inside of her cheek and lip, which she bit while sleeping, he also accused a known culprit: fear

panic disorder?

In her thirties, Devlin decided that she was probably suffering from panic attacks and started years of therapy Having described her feelings of detachment, disorientation and horror, the therapist agreed with her self-diagnosis.

The therapist was friendly and helpful, Devlin said, encouraging her to take meditation and prescribe anti-anxiety medications, which she said was taking place sparingly. The episodes continued, however.

The event that would change Devlin's life occurred in April 2017, when she and her second husband flew home from a vacation on Captiva Island, Florida.

Halfway through the flight Devlin had When she woke up suddenly and took a nap, she had the feeling that something was "terribly wrong". The walls of the plane seemed to be paperless, she said, and she felt a rolling terror. The last thing she remembered before losing consciousness was to ask her husband for help.

Soon Devlin woke up, confused and excited. She lay in the middle and in the hallways, her head on her husband's lap. Flight attendants huddled around her and inexplicably knocked them on with wet brown paper towels. Devlin noticed that her jeans were wet: she had involuntarily urinated. "I was humbled," she said.

An hour later, after landing in Providence, paramedics hurled them into a small community hospital.

In the emergency room, "my husband told the doctor I said," Something's not right, I'm going to pass out, "before sitting back in my seat, and after a few seconds, my eyes opened and my mouth was open. I started rocking back and forth, staring straight ahead. "

The doctor asked if she was afraid of flying, he seemed to ignore her answer – she did not – and patted her arm and told her he was Once fainted during a flight

Back home, Devlin decided she had not fainted, her discharge papers listing "seizure vs. syncope", which meant the doctors were not sure if she was losing consciousness for a short time Devlin's husband told her that a passenger who had witnessed the event had said, "She has a seizure."

She was thinking of everything the times in her life in which she had experienced something similar: the humming, the wobbling terror, the detachment. Devlin compiled a log and wondered how she – and especially her doctors – could have overlooked the apparently apparent.

A few days later, Devlin saw her internist. "That was not powerless," she remembers her doctor. "They had a seizure."

Devlin turned to the Beth Israel Deaconess Medical Center in Boston, a Harvard teaching hospital where she had previously been a patient. She flipped through the list of specialists and opted for Bernard S. Chang, head of the Department of Epilepsy and Clinical Neurophysiology.

Obvious – and Overlooked

Devlin recalls that she felt nervous before her first meeting with Chang. She was worried that, like other doctors she had seen, he would depict her as another timid woman.

Instead, Chang heard her description of the incident in the air and less dramatic episodes from decades ago.

He told Devlin that her story and medical records were consistent with temporal lobe epilepsy. It is estimated that more than 3 million Americans have epilepsy, a chronic neurological disorder. The event during the flight was probably a tonic-clonic or grand attack – the dramatic convulsions commonly associated with epilepsy. Devlin's inability to speak or move at other times meant partial or partial seizures.

Seizures are the result of abnormal electrical activity in the brain. Epilepsy can be caused by a head injury, illness or abnormal development; In many cases, including Devlin's, the cause is unknown. It is common for people with epilepsy to experience strange emotions or sensations. People with Temporal Lobe Epilepsy may experience auras that can cause a sense of foreboding, an unusual smell or taste, or a sense of rolling that resembles a roller coaster.

An anxiety or depression can occur as a result of seizures or seizures as a side effect of drugs to control them.

There is no cure for epilepsy, but in most cases, medications can control seizures.

The brain disorder has long been the subject of myths and stigmatization, some of which derive from their consequences centuries-old connection with obsession or demon. Stigma, Chang said, has contributed to a delayed diagnosis. Epilepsy is sometimes misdiagnosed as a psychiatric disorder, including schizophrenia.

"We see children being diagnosed with [attention-deficit disorder] because they have staring episodes" – a behavior commonly seen in seizures in the absence.

Delayed diagnosis is not uncommon. Chang said, but there is a delay of 50 years.

"It's just looking back now," he added, putting the diagnosis in Devlin's case, but other illnesses need to be ruled out.

"We were convinced enough to start taking medication immediately," Chang said, and Devlin then did an MRI to rule out a brain tumor and an EEG that recorded electrical activity in the brain, both of which were normal, a normal EEG in someone with epilepsy is not uncommon, say neurologists.

Devlin's prompt and dramatic response to the epilepsy drug confirmed the diagnosis.

"I was impressed," said Devlin, who felt transformed within a few days. She did not bite her lip or the inside of her cheek while she slept, she did not wake up with aching muscles, the sense of detachment vanished with the humming, she felt calm, the only side effect was drowsiness which she had become accustomed to.

"I literally cried with relief when I finally had a diagnosis, a smart doctor and a me drug to treat my symptoms, "she said.

In addition to stigma and denial, Devlin believes that her diagnosis may have been delayed by the time her seizures occurred frequently – during sleep – and because she was circumspect in describing her symptoms.

Otherwise, she worried, "would make me sound good, crazy.

The failure to consider epilepsy was especially striking in the face of Devlin's family history.

One of her sisters was diagnosed with temporal lobe epilepsy at the age of 20. (It is believed that the Genetics plays a role in the development of some forms of the disorder.)

Devlin said the diagnosis triggered a comprehensive re-evaluation of her life.

"It's overwhelming," she said, adding, "I was wondering would be mine Life had been different, "she had not convinced for decades that she was" just scared "- and was seriously flawed.

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