“What just happened?” The 16-year-old’s voice was flat and tired. “I think you had a seizure,” her mother replied. Her daughter had asked to be taken to the pediatrician because she hadn’t been feeling well for several weeks – not since she had what looked like a seizure at school. And now she had had another one. “You are fine now,” the mother continued. “This is good news because it means we may have finally figured out what is going on.”
For most people, that might have been overkill — to call a crisis good news. But for several years, the young woman had suffered from headaches, bouts of dizziness and strange episodes of deep fatigue, and her mother considered the possibility of a treatable disorder. The specialists she had taken with her daughter to see attributed her set of symptoms to the lingering effect of the many concussions she had suffered while playing sports. She had at least one concussion every year since she was in fourth grade. Due to his frequent head injuries, his parents made him give up all his sports.
Even when she was not on the playground, the young woman kept falling and hitting her head. The headaches and other symptoms persisted long after each injury. She saw several specialists who agreed that she suffered from what was called persistent post-concussion syndrome – symptoms caused either by severe brain damage or, in her case, by repeated minor injuries. She should get better with time and patience, the girl and her mother were told. And yet, her head was pounding and she retreated to her dark room several times a week. She did everything her doctors suggested: she slept a lot, rested when she was tired, and tried to be patient. But she still had headaches, dizziness. She was finding it increasingly difficult to pay attention. In the past two years, it had even started to affect his grades.
In early September, the mother received a call from her daughter’s high school. Her daughter was sick and had to go home. “What happened?” his mother asked him later. The girl replied, “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 texted the mother. I want to tell you what I saw, he said. They were in class, and he noticed that his friend’s hand was starting to shake. She seemed a little zoned out and she was drooling. It only lasted about a minute, but it was strange, the boy said.
Fearing that her daughter had had a seizure, the mother sought a specialist. She found one in Stamford, a half hour south of their home in suburban Connecticut. This doctor made a strange request: Keep your daughter awake the night before the appointment. She would need an EEG, and fatigue can lower the threshold for having 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 a few weeks later, during that visit to the pediatrician, it happened again, and right in front of the doctor. After learning that she may have had another seizure, the young woman had another question. “Can I still go back to school? ” she asked.
“Absolutely,” replied the doctor. The mother was a little surprised, but delighted. Maybe that was really good news.
That night, after the girl left for the homecoming ball, the doctor called. “It 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 typically have a period of intense fatigue and confusion. “No one who has had a seizure asks to go home,” he said. She was breathing heavily before her strange episode in her office. He thought she was hyperventilating – something that can happen before a panic attack – and gave her a paper bag to breathe in. She had hardly lifted 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 amazed. This doctor had been the family pediatrician since the birth of their son, now 23 years old. He was always great – the kind of doctor who always goes the extra mile. But this time, the mother was sure he was wrong.
The young woman was at home that evening at 8:30 p.m. She barely spent 20 minutes at the ball. The music was too loud, she told her questioning parents. The flashing lights gave him a headache. She went straight to bed. A few hours later, her mother opened the door to her daughter’s bedroom, to check that she was okay before going to bed herself. As she looked at her daughter, the young woman began to shake. It wasn’t the wild commotion she’d seen in the doctor’s office. It was like the kind of chills you might get with a fever, but more. The episode only lasted 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 happen again.
She was woken up a few hours later. The whole bed seemed to move. Her daughter’s eyes were closed and her body was shaking. Again, it only lasted a few seconds. Was it a crisis? She jumped out of bed and called the pediatrician. The mother did not know the doctor who called her back, and she was not reassured by the doctor’s reminder that her daughter had had a similar episode that day, which was thought to be a panic attack and not a crisis. As she hung up, the mother felt terribly alone. Who would know what she should do? Suddenly she remembered the neurologist who had done the EEG. He had said it might have been an isolated episode. But that was clearly not the case. Who has heard of a panic attack occurring in the middle of the night?
This neurologist was not on call, she was told on the answering machine, but someone would call her back. A few minutes later, his phone rang and a slightly accented voice identified the caller as Dr. Cigdem Akman. She was a pediatric neurologist at NewYork-Presbyterian Morgan Stanley Children’s Hospital in Manhattan. The mother related the events of the long day. After describing what happened at the pediatrician’s office, she paused, then added, “Her doctor thought it was a panic attack, but my daughter was never the type to lose your mind.” Then she described the bed shaking she saw and felt that night.
“I have no doubt that your daughter is having seizures,” the doctor told the mother. There was nothing to do at that time, but her daughter needed to be assessed. Akman would arrange for her to be seen in the EEG video lab. A 48-hour study might reveal what was going on.
A visible anomaly
The mother and daughter went 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 while sleeping. During the seizure while awake, the young woman was able to walk and speak intelligibly. The only obvious anomaly was his eyes. She blinked rapidly several times, then her chin lifted slightly and her eyes rolled back. It only lasted a few 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-epilepsy disorder called Jevons syndrome. She immediately started taking strong anticonvulsant medication.
Jeavoirs was first described in 1977. It usually begins in childhood, although it is often not diagnosed until adolescence. It is much more common in girls than in boys. Affected children have very brief seizures, lasting only a few seconds, but often occurring several times a day. Untreated, these seizures can impact learning. And they can go from absence seizures to tonic-clonic or grand mal seizures, like this young woman had. It took Akman a few months to find the right medications for her, but since she started taking these medications, she has had no seizures.
Once her seizures were under control, she stopped having accidents. The headaches are gone. Fatigue and dizziness too. For much of her life, the young woman was known to have episodes of inattention. These had been attributed to his numerous concussions. Now it was clear that many, if not most, of them were actually seizures. Under anticonvulsants, the notes of the young woman climbed. She is now a freshman in college majoring in neuroscience.
Lisa Sanders, MD, is a contributing editor at the magazine. His latest book is “Diagnosis: Solving the Most Baffling Medical Mysteries”. If you have a solved case to share, email her at Lisa.Sandersmdnyt@gmail.com.
#suffered #headaches #fatigue #concussions #blame