She Suffered From Headaches and Fatigue

“What just happened?” The 16-year-old girl’s voice was flat and tired. “I think you had a seizure,” her mother answered. Her daughter had asked to be taken to the pediatrician’s office because she hadn’t felt right for the past several weeks — not since she had what looked like a seizure at school. And now she’d had another.

“You’re OK now,” the mother continued. “It’s good news because it means that maybe we finally figured out what’s going on.”

To most people, that might have been a stretch — to call having a seizure good news. But for the past several years, the young woman had been plagued by headaches, episodes of dizziness and odd bouts of profound fatigue, and her mother embraced the possibility of a treatable disorder.

The specialists she had taken her daughter to see attributed her collection of symptoms to the lingering effect of the many concussions she suffered playing sports. She had at least one concussion every year since she was in the fourth grade. Because of her frequent head injuries, her parents made her drop all her sports.

Even when not on the playing field, the young woman continued to fall and hit her head. The headaches and other symptoms persisted long after each injury. She saw several specialists who agreed that she had what was called persistent post-concussive syndrome — symptoms caused either by a severe brain injury or, in her case, repeated mild injuries. She should get better with time and patience, the girl and her mother were told. And yet her head pounded and she retreated to her darkened room several times a week.

She did everything her doctors suggested: She got plenty of sleep, rested when she was tired and tried to be patient. But she still got headaches, still got dizzy. She found it harder and harder to pay attention. For the past couple of years, it had even started to affect her grades.

Early in September, the mother got a call from her daughter’s high school. Her daughter was ill and needed to go home. “What happened?” her mother asked her later. The girl answered: “I don’t know. I was in class; it had just started. The next thing I knew, class was almost over and everyone was standing around me.” That evening one of the girl’s friends sent the mother a text. I want to tell you what I saw, he said. They were in class, and he noticed that his friend’s hand started to shake. She seemed kind of zoned out, and she was drooling. It only lasted a minute or so, but it was strange, the boy said.

Fearing her daughter may have had a seizure, the mother looked for a specialist. She found one in Stamford, a half-hour south of their home in suburban Connecticut. This doctor made an odd request: Keep your daughter awake the night before the appointment. She would need an EEG, and fatigue can lower the threshold to have a seizure and make the problem easier to find, he explained. But the test was normal. She may have had a seizure, the neurologist said, but these are often isolated events.

A Very Strange Night

But just a few weeks later, on that visit to the pediatrician, it happened again, and right in front of the doctor. After hearing that she might have had another seizure, the young woman had another question. “Can I still go to homecoming?” she asked.

“Absolutely,” the doctor answered. The mother was a little surprised, but pleased. Maybe this really was good news.

That evening, after the girl left to go to the homecoming dance, the doctor called. “That wasn’t a seizure your daughter had in my office,” he told her. “I think it was a panic attack.” After a seizure, he explained, patients usually have a period of severe fatigue and confusion. “No one who’s had a seizure asks about going to homecoming,” he said. She had been breathing heavily before her strange episode in his office. He thought she was hyperventilating — something that can occur before a panic attack — and gave her a paper bag to breathe into. She had barely put the bag to her lips when she started flailing her arms and legs. Panic attacks are common, especially in this age group. She should probably see a psychiatrist, he added.

Hearing this, the mother was stunned. This doctor had been the family’s pediatrician since their son, now 23, was born. He had always been great — the kind of doctor who always goes the extra mile. But this time the mother was certain he was wrong.

The young woman was home that night by 8:30. She spent barely 20 minutes at the dance. The music was too loud, she told her questioning parents. The flashing lights gave her a headache. She went straight to bed. Hours later her mother eased open the door to her daughter’s room, to check on the girl before going to bed herself. As she gazed at her daughter, the young woman began to shake. It wasn’t the wild flailing she saw in the doctor’s office. It was like the kind of shaking chills you might get from a fever, but more so. The episode lasted only a few seconds. The mother, far too worried to go to her own bed, lay down next to her daughter to wait for the strange shaking to recur.

She was awakened a couple of hours later. The entire bed seemed to be moving. Her daughter’s eyes were closed, and her body was shaking. Again, it lasted only seconds. Was this a seizure? She jumped out of bed and called the pediatrician. The mother didn’t know the doctor who called her back, and she wasn’t reassured by the doctor’s reminder that her daughter had a similar episode that day that was thought to be a panic attack, not a seizure. Hanging up, the mother felt terribly alone. Who would know what she should do? Suddenly she remembered the neurologist who did the EEG. He’d said that it might have been an isolated episode. But clearly it wasn’t. Who has heard of a panic attack happening in the middle of the night?

That neurologist wasn’t on call, she was told by the answering service, but someone would call her back. A few minutes later, her phone rang and a lightly accented voice identified the caller as Dr. Cigdem Akman. She was a pediatric neurologist from the NewYork-Presbyterian Morgan Stanley Children’s Hospital in Manhattan. The mother recounted the long day’s events. After describing what happened at the pediatrician’s office she paused, then added, “Her doctor thought it was a panic attack, but my daughter has never been one to lose her head.” Then she described the bed shaking she saw and felt that evening.

“I have no doubt that your daughter is having seizures,” the doctor told the mother. There was nothing that needed to be done right then, but her daughter should be evaluated. Akman would arrange for her to be seen in the video EEG lab. A 48-hour study could reveal what was going on.

One Visible Abnormality

Mother and daughter traveled to the hospital’s epilepsy-monitoring unit two days later. In the first 24 hours she was monitored, she had eight seizures, one while awake and seven when sleeping. During the seizure when she was awake, the young woman was able to walk and talk intelligibly. The only obvious abnormality was her eyes. She blinked rapidly several times, then her chin lifted slightly and her eyes rolled back. It lasted only seconds but the EEG showed the presence of a type of generalized seizure called an “absence seizure” — characterized by a lack of attention. The strange eye movements indicated a rare type of absence-seizure disorder called Jeavons syndrome. She was immediately started on a potent antiseizure medication.

Jeavons was first described in 1977. It usually starts in childhood, though is frequently not diagnosed until adolescence. It is much more common in girls than boys. Affected children have seizures that are very brief, lasting only a few seconds, but often occur many times a day. Untreated, these seizures can impact learning. And they can change from absence seizures to tonic-clonic or grand mal seizures, as this young woman’s had. It took a few months for Akman to find the right medications for her, but since starting that medication, she has had no seizures at all.

Once her seizures were under control, she stopped having accidents. The headaches disappeared. So did the fatigue and dizziness. For much of her life, the young woman was known to have episodes of inattention. These had been attributed to her many concussions. Now it was clear that many, if not most, of them were actually seizures. On the antiseizure medication, the young woman’s grades went up. She is now a junior in college, majoring in neuroscience.

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