Blog #159: DO YOU HAVE SUBTLE EPILEPSY SYMPTOMS THAT ARE UNRECOGNIZED?

 

Stacie Kalinoski is an Emmy-award winning reporter. She also is an epilepsy nurse practitioner. In the April/May 2018 issue of the patient-geared journal Brain and Life, page 56, she writes of her own epilepsy. Kalinoski pursues brain surgery and she documents this journey.

Kalinoski experienced her first convulsion in college. An avid runner, while running she noted regular episodes of déjà vu, that weird feeling like she is in some environment or is seeing something for the very first time, but it felt like that the experience had happened to her before. Most of us have experienced such a feeling once or twice in our lives but frequent recurrent episodes are abnormal. They suggest epileptic auras, a problem in our brain’s temporal lobe. Another brain phenomenon that is similar, but the opposite, is jamais vu. Here, what’s familiar to us no longer feels or seems, familiar. For example, one’s bedroom, one’s car, or familiar people—all feel new during the seconds or minutes of the episode.

Kalinoski’s hidden epilepsy flowered into multiple blank outs after a strenuous marathon run. She had had little sleep. Then she lost awareness and cut herself preparing vegetables. A neurologist diagnosed epilepsy. She started antiseizure medications. Too little sleep and strenuous running accompanied more jamais vu episodes. She became disorientated after a run. She found herself lost despite being very near her house. She required help getting home only two blocks away. Neurological testing showed an abnormal brain focus originating epileptic seizures. A temporal lobectomy followed. This decreased the number of her aura-seizures. These subsequently became episodes of strange tastes lasting a few seconds. Many people also experience auras as smells that aren’t really there—olfactory hallucinations.

In my novel, DINGS, I created a character who has olfactory hallucinations. The neurologist in the novel queried if his young patient had ever imagined smelling something that wasn’t actually there. The neurologist then offered “burning rubber” smells, a common symptom of complex partial seizure auras. The novel’s character agrees that he does perceive smells like that. A diagnosis of epileptic blank-out seizures is made, heretofore unrecognized. The mother is devastated upon learning her son has epilepsy. She conjures up public prejudices. She learns that one percent of the population has epilepsy, over three million Americans, but the epilepsy in half of them, encouragingly, is well controlled. They are free of seizures on treatment. Chief Justice Roberts of the United States Supreme Court, despite his epilepsy, has achieved a leading position in our society.

 

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. His hard-hitting emotional family medical drama, “DINGS, is told from a mother’s point of view. “DINGS” is his first novel. Aside from acclamation on internet bookstore sites, U.S. Report of Books, and the Hollywood Book Review, DINGS has been advertised in recent New York Times Book Reviews, the Los Angeles Times Calendar section and Publishers Weekly. DINGS teaches epilepsy and is now available in eBook, audiobook, soft and hard cover editions.

 

 

Blog #150: DINGS Chapter 25

 

 

Epilepsy! All my denial—my protective armor—shattered. But of course…something had been undercutting this realization for months. Why had he been wetting his pants at his age? And, the times when I thought he was not paying attention and maybe he seemed confused. Dr. O’Rourke’s interview…Conner’s secrets…all his hidden spells…these dings…over a year. Oh, God. Oh, my God. I leaned forward.

“Epilepsy? So, that’s it. This is epilepsy. Oh, God!” I leaned back and stared up at the ceiling.

Conner had been watching me. He grabbed my hand and gritted his teeth, his eyes wide with alarm. I put my other hand over Conner’s and patted it several times. Sam wrapped one arm around Conner and blinked hard. He reached across our boy’s body to cover Conner’s and my hand with his.

The doctor furrowed his brow as he ran his tongue over his upper lip. “Mr. and Mrs. Golden, we say a person has epilepsy when he has had more than one seizure. Conner’s dings are all seizures. It seems like he’s had many of them, a great many of them.” He looked at Conner.

Conner stared back.

My mouth was so dry. I squinted and gazed above the doctor’s head. My preliminary presumptions surrounding Conner’s convulsion dissolved in tangled confusion. My temples throbbed. I looked at Conner and lowered my head. Conner has to be protected now. I stifled a sob.

I lifted my head and looked into the neurologist’s eyes. My husband gazed straight ahead. I took a deep breath. “I didn’t want it to register, Doctor. I’m sorry. Yes, you and Conner were talking about his dings—or whatever he calls them—those little seizures; apparently there have been lots of them.”

Dr. O’Rourke swiveled his leather chair to the side and crossed his legs. He kept his gaze on me as he tapped his pencil softly on his desk.

Conner watched me, too. He opened his mouth, but kept silent as I turned away.

I looked at the floor and then I closed my eyes and said, “He’s been having these things for over a year? Right in front of me? How could I have missed them? How could I not have seen them?”

I had known that Conner’s convulsion weeks ago could completely change our lives. I just didn’t know how. I didn’t want to know. It was deep in that chamber where I kept secrets, repressed secrets. Conner looked at me again. “Mom! What?”

“Oh, honey.” I wrapped my arm around his thin shoulders. Sam clenched his fists in his lap.

The neurologist spoke in a slow, deliberate voice. “Your son’s seizures are different from the grand mal seizure, the convulsion that brought him to the hospital. Conner’s seizures are caused by abnormal electrical brain activity. They probably originate in just one part of his brain—that would be in his temporal lobe—less likely in his frontal lobe.” He paused for emphasis. “Convulsions affect the whole brain. Anybody witnessing a convulsion would recognize that type of seizure. However, Conner’s dings—as he refers to them—can be harder to recognize…they affect just one part of the brain. What’s so difficult for many people to accept is, as I just said, a cause for epilepsy is often never identified.”

“You mean that, don’t you? You don’t know why they’re happening?” The hostile tone in Sam’s voice surprised me.

“Look. My patients say, ‘Dr. O’Rourke, there are men walking on the moon. Don’t tell me in this day and age that you can’t say why the seizure happened. How can that be?’ Mr. Golden, there are just so many things that we do not understand, especially when it comes to the brain. Medical knowledge humbles us. The more our experience and research teaches us the more we appreciate how little we actually understand. We do not even know how we think or what thinking really is.

“The EEG should document where in the brain these seizures are originating,” he continued. “However, a normal EEG does not mean that there is no seizure disorder. ‘Seizure disorder’ is another term we use that means epilepsy. An EEG can still be normal if the epileptiform discharges do not happen while the test is being done. And that’s common.”

I lowered my eyes and dug my fingernails into the edge of my chair. “What about the Dilantin?” I leaned forward and looked up. “Does Conner still have to take it? I guess so, huh? But I was, uh, we were so hoping, praying, that he could stop taking it today…”

I saw Conner’s puzzled expression. Sam’s eyes locked onto Dr. O’Rourke, but the neurologist focused on Conner.

“Let’s discuss treatment options after I finish—” Dr. O’Rourke coughed into his fist and cleared his throat. “Excuse me. After I finish your son’s physical examination. I want to get a more complete picture of what’s going on before I make any decision about medications.”

He asked him a few more questions to affirm that his mental functions were intact. “Spectacular,” Dr. O’Rourke said with a broad grin. Conner knew the date, where he was right at that very moment and his home address. “Conner is very well-oriented to date and place. He even knows who the president is. Not everyone can tell me that—even adults, believe it or not.”

Our boy beamed.

The neurologist demonstrated that Conner could also add and subtract, count and spell simple words backward—all accomplished appropriately for a third-grader. His memory and his ability to draw, write and name objects the doctor held up were normal, too. “You’re very smart for an eight-year-old.”

“I’m eight and a half, Dr. O’Rourke.”

The neurologist scrunched his eyes shut, grimaced and slunk down in his chair. “That’s right. You already told me. Eight and a half. Sorry.” He straightened up and winked at us.

He asked me about Conner’s past illnesses, immunizations and symptoms in other parts of his body. He also wanted to know about my pregnancies. “Has he ever exhibited any unusual or disturbing behaviors?” His eyes darted between Sam and me.

“No. He’s always been a normal child.” I looked at Sam. He nodded several times.

Conner sniffled and looked up at me.

“Very good. Do any diseases run in the family?”

“No, Doctor,” Sam answered in a solemn voice. “None that we’re aware of, anyway.” We looked at each other. I raised my eyebrows and shook my head in agreement.

Dr. O’Rourke’s face became very serious as he asked, “Do you smoke, young man?”

Our son twisted in his chair and laughed. “No-oooo. The sy…the sychilist at school—the first icky one—she wanted to know if I was married. That was funny.”

“He’s referring to the school psychologist who first attempted to do testing on him in the school, Doctor. Apparently, she and Conner didn’t get along. That’s what both of them told me, anyway. That’s sort of how we got to Dr. Frank Thomas.” My grim expression softened into a smile.

“Oh.” He said to me and then turned back to Conner. “So you don’t smoke. That’s what I like to hear.” The doctor stood up. “Okay, family. Let’s go across the hall to the exam room so I can check Conner over.”

He walked around his desk and put his arm across our boy’s shoulders. “Don’t worry, Conner. I won’t be giving you any shots today. I’ll just be checking your eyes and things.”

We shifted in our chairs and began to rise. Conner said to Sam, “I have to go to the bathroom, Daddy.” His voice had become tremulous again.

“Can’t you wait until the doctor’s finished, Conner?” I asked with a sharp tone.

“No!” He practically shouted and cast a sidelong glare at me. He hitched up his pants and hopped a few times.

“Okay. Let’s go.” Sam took him by the hand.

I sat down again. “I had no idea that Conner’s been having these things, Dr. O’Rourke—and for so long?” I leaned forward. “I’ve gone to the Internet and just about every...but, I never suspected this.” I licked my lips and hesitantly asked in a softer voice, “You really think he has epilepsy, don’t you, Doctor?” My throat and chest were tight. Of course it’s epilepsy. He just rammed it down our throats. I was so blind.

Dr. O’Rourke went behind his desk. He stood there with a hand on the back of his leather chair, fixed his gaze on me for a moment, and then sat down. He rested his palms on the desk. An inch of light-blue shirtsleeves protruded from beneath the sleeves of his white coat. I noticed “HO” embroidered in dark-blue thread on the left cuff. I did not expect a physician to be so fashion-conscious as to have a monogram on his shirt. I don’t know why I was surprised; look at his bowties. I looked for cuff links, but saw none. The scene was so surreal that for a moment I wondered if I were living it or merely watching myself and the doctor in a silent movie.

“Look, Mrs. Golden, we’ve discovered a lot today. I am probably as surprised about this diagnosis as you are. I did not expect this history of covert, hidden seizures based on my review of the hospital records. I believe that Conner has a form of epilepsy called ‘complex partial epilepsy.’ Its newer term is ‘mesial temporal lobe epilepsy.’ Look at it this way: your son has been suffering; that is why you are here. That is the reality. Now that we have identified what is wrong we can do something about it. We can help him.”

Dr. Choy had said virtually the same thing to me at the hospital. Did they all read the same script?

The neurologist arched his eyebrows. “I expect that Conner will do fine, Mrs. Golden. I understand how upsetting this is for you right now, believe me. But, you’re all going to be fine.”

His words morphed into distant sounds. I forced a weak smile and stared at the framed documents on the wall. Then I asked again, “Are you sure? Are you absolutely sure that Conner has epilepsy? It couldn’t be something else?” I groped for an admission of doubt. “No, no. Of course...It’s just that—” I stared out the window.

“I’m sure, Mrs. Golden. His history is classic: the auras—which are the warnings of the seizures and the smells that he told us that he gets—his confusion, losing control of his bladder. All of those phenomena are textbook symptoms.”

Everything that this neurologist said would be a part of our lives—always, forever. So, this would be my lot in life. I remained motionless. I felt so hollow.

Dr. O’Rourke swiveled his chair around to face the computer on the desk extension. Thuk, thuk, thuk—the keys spoke as he typed. His eyes skimmed the screen, but occasionally I saw him glance at me as I juggled my pain and anguish.

When Conner and Sam returned to the office, Dr. O’Rourke ushered us across the corridor to his exam room. The fluorescent lights flickered on as soon as he opened the door. Conner turned his head from side to side before he entered the room with us.

I remembered that I had read how flickering lights could induce seizures in some epileptics. Was it better to say ‘people with epilepsy’? What should they be called? Was Conner an epileptic? Or was he a child with epilepsy? I squeezed my eyes tight and my body shuddered.

Closed vertical blinds blocked out most of the late-afternoon sunshine that tried to stream through a single window. A rack on the back of the door proffered a selection of brochures on different neurological diseases and various popular magazines and children’s periodicals. There were a few copies of National Geographic, too. A low shelf held several rubber dolls, a Barbie doll, a few toy soldiers and several small action figures similar to the snap-together ones Conner had at home. I wondered if the doctor put them together himself. He must have many children as patients; maybe one of them did it.

Conner was immediately drawn to a colorful diagram on the wall: a gray wrinkled-brain attached to the spinal cord with yellow nerves projecting to all parts of the body.

The neurologist tapped the boy’s shoulder. “Take everything off down to your underpants, Conner. Shoes and socks off, too.” Dr. O’Rourke looked at me as he said that and I nodded. “When you’ve undressed put on the folded gown that’s on the exam table. I’ll be right back.” He smiled and left the room. The door shut behind him with a loud click.

I sat on a green plastic chair and waited for Conner to undress. I recognized several framed photographs on the walls that I remembered having seen on the Internet. The first picture was of a very young Hal O’Rourke in Papua New Guinea. Another large frame had a newspaper article about his interest in Shakespeare and neurology.

Sam moved closer and inspected the pictures, too.

What was the doctor doing now? Where did he go? Paperwork? The bathroom? Dr. O’Rourke had discovered things that all the other doctors had missed. Why didn’t Dr. Choy or Dr. Jackson or even Dr. Thomas—even the school psychologists—why didn’t they figure out what was wrong? What about his teachers? Why did it take so long? And me—his mother! I was the worst of all. I closed my eyes and shook my head at my stupidity. Well, Dr. Choy did mention that it could be epilepsy, but I wouldn’t entertain that diagnosis then. That was preposterous.

 

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. His hard-hitting emotional family medical drama, “DINGS, is told from a mother’s point of view. “DINGS” is his first novel. Aside from acclamation on internet bookstore sites, U.S. Report of Books, and the Hollywood Book Review, DINGS has been advertised in recent New York Times Book Reviews, the Los Angeles Times Calendar section and Publishers Weekly. DINGS teaches epilepsy and is now available in eBook, audiobook, soft and hard cover editions.

Blog #145: Epilepsy Patient Passes Driving Test After Brain Surgery

  

Several of my previous 144 monthly blogs on LanceFogan.com dealt with brain surgery as a chance to improve, or even cure, epilepsy in those whose epilepsy is poorly controlled. (See Blog # 89 December 26, 2017: Surgical Removal of Seizure Foci in Your Brain to Cure Poorly Controlled Epilepsy is Safe!; Blog # 101 February 26, 2019: Epilepsy—Fit to Drive?; Blog # 114 January 26, 2020: Epilepsy Surgery in Childhood and Long-Term Employment Is Encouraging.; Blog # 121 August 25, 2020: If Your Seizures Aren’t Controlled Epilepsy Surgery Is Safe and Really Can Help).

 

The greatest chance to cure your uncontrolled epilepsy is by successfully removing the seizure focus surgically.

My clinical experience has shown that there is so much that can physically alter the brain anatomically by surgery and by unintended trauma that surprisingly results in undetectable, or barely detectable, changes in a patient’s mental and physical capabilities. I have examined people who have been shot in the head, the bullet entering one side traversing through parts of the brain and exiting the other side of the head sparing sensitive brain areas. When neurosurgeons and neurologists perform specialized types of EEGs and imaging scans anticipating epilepsy surgery, sensitive parts of the brain can be identified and avoided.

The BBC on-line service recently reported that a man with epilepsy says he finally has independence. A surgical procedure removed his epilepsy focus and he then was able to pass his driving test.¹ The 40-year-old man had the brain operation eight years ago. Government rules meant the computer programmer from Birmingham was unable to take his driving test unless he was seizure-free for two years. But twice since learning to drive he had a seizure, setting him back each time and then Coronavirus lockdowns led to further delays. But eventually he was able to take the test and since passing, plans to take his young family on regular camping trips.

The man said he never thought he would be able to drive after living with epilepsy since childhood. But he underwent lesion resection, which involved inserting electrodes into his brain to detect electrical activity and carefully removing abnormal tissue.

Discuss possible epilepsy surgery with your neurological caregivers.

 

1)    Epilepsy Patient Passes Driving Test After Complex Surgery. https://www.bbc.com/news/uk-england-birmingham-62568014. Aug 16, 2022.

 

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. His hard-hitting emotional family medical drama, “DINGS, is told from a mother’s point of view. “DINGS” is his first novel. Aside from acclamation on internet bookstore sites, U.S. Report of Books, and the Hollywood Book Review, DINGS has been advertised in a recent Publishers Weekly, New York Times Book Review and the Los Angeles Times Calendar section. DINGS teaches epilepsy and is now available in eBook, audiobook, and soft and hard cover editions.

 

 

 

 

 

 

 

 

 

   

 

Blog #111: MY EPILEPSY IS CONTROLLED. WHY DO I HAVE OCCASIONAL THINKING BLANK OUTS?

   The brains of people with epilepsy are not the same as the brains of the general population. 

   A new study by Stanford University epilepsy specialists⁽¹⁾ found electrical activity in epilepsy patients’ brains which can explain brief lapses in thinking, perceiving and remembering even in those whose epilepsy seems to be well-controlled by medication.

   High-frequency oscillations (HFO) are subtle, transient brain recording signals that erupt up to 100 times per minute in people who do not have epilepsy. However, these HFO “buzzes” are abnormal if they occur with an onset of a seizure in epileptogenic areas of the epilepsy patient’s brain. The HFO buzzes are not abnormal if they occur in parts of the epilepsy patient’s brain that are not associated with their seizures.

   In their study, the Stanford researchers tested six patients with intractable seizures who had sensors implanted in their brains for consideration for possible epilepsy surgery. Cognitive challenges were presented to the patients for them to solve during periods when a buzz of epileptic activity was interfering with their brains’ normal processes. Several HFOs per minute were seen on EEGs but clinical seizures were undetectable to observing neurologists. The researchers suggest that these HFOs could explain cognitive complaints from otherwise “normal-appearing,” epilepsy patients whose epilepsy is “controlled.” If the HFO occurred milliseconds before a seizure-prone brain area began processing information the HFO seemed to affect cognition The HFOs lowered the accuracy and speed of the patient’s thinking, i.e., the response time, even though visible seizure activity was not observed.

   The explanation for this brief deterioration is that HFOs within that period interfere with high-frequency broadband events, or HFBs. These healthy brain events occur in brain areas that are not affected by the epilepsy focus. HFBs are associated with a brain circuit beginning to do something the brain is supposed to do, as processing visual information or recalling previous experiences. HFOs can disrupt healthy brain activity for up to one second even though clinical seizure activity is not apparent.

   A computer was trained to accurately distinguish between HFOs and HFBs. In all six patients studied, if a spontaneous HFO occurred within one second before a task-elicited HFB should have arisen, it disrupted, delayed, diminished and often completely extinguished the HFB. Testing at these times showed this event slowed responses, showed poorer recall and reduced confidence in answering memory-evoking questions.

   The important conclusion from this study is that the epileptic tissue’s performance was normal outside the window of the HFOs. For the majority of the time when seizure-prone brain tissue isn’t experiencing HFOs, the brain tissue worked well in these test patients. Researchers advised that prior to surgery for its removal, physicians should weigh that much of the time the epileptic focus that is seizure-controlled can still have significant cognitive abilities. Is surgery to remove it still the best treatment considering side-effects?

   Bruce Goldman, a science writer in the Office of Communications at Stanford University, reviewed the researchers’ scientific article.

1)      Liu S,  Parvizi J. Cognitive Refractory State Caused By Spontaneous Epileptic High-Frequency Oscillations In The Human Brain. Science Translational Medicine Vol. 11, Issue 514, 16 Oct 2019.

 

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.

Blog #78: CUTTING THE BRAIN IN HALF TO CONTROL EPILEPSY!

            Brain surgeons occasionally cut the brain in half by a CORPUS CALLOSOTOMY operation. It can better control intractable seizures. This procedure cuts the corpus callosum (cc), the major broad structure containing nerve fiber tracts that connects the right and left halves of the brain from front to back of the brain.

Green is the Corpus Callosum

This  brain depiction shows the cc with the overlying brain cortex removed.

      The procedure disconnects spread of epileptic brain activity. It has been performed for over 75 years. It seems to benefit atonic (Atonic seizures, or drop attacks, cause a loss of muscle tone resulting in the person dropping to the ground with loss of awareness. This is the Lennox-Gestaut Syndrome. The fall can result in serious injury.  It is recommended that affected children wear helmets to minimize fall-injury) and tonic seizures (Tonic seizures are a tightening of muscles, especially of the trunk and face, without jerking or falling but with loss of awareness). These two epilepsy forms primarily affect children and are resistant to anticonvulsant medications. Occasionally, CORPUS CALLOSOTOMY is performed to improve grand mal epilepsy, too.

       Paglioli’s research team ¹ found CORPUS CALLOSOTOMY to be safe and effective. Their study revealed that median monthly frequency of drop attacks decreased from 150 per month to, on average, less than one per month.

        Cut the brain in two? How can a person function like that? CORPUS CALLOSOTOMY usually leaves the patient with undetectable changes except for improved seizure control.      

        What does the corpus callosum structure do? Other than allow the right and the left cerebral hemispheres sharing information across it, neuroscientists can’t give complete explanations. Once the cc is cut, sophisticated neuropsychological testing may be required to detect abnormalities that are undetectable to the casual observer.

            Rarely, people are born without a corpus callosum. The absence of the structure is found on routine brain scans done for other reasons, e.g. trauma, headaches and paralysis, etc. Yet, they appear entirely normal on routine interactions and physical examinations.

            One side-effect caused by CORPUS CALLOSOTOMY is described: most people are right-handed and have their language center in the frontal lobe of the left cerebral hemisphere. If a coin is placed in the left hand after CORPUS CALLOSOTOMY, the patient feels the coin in his right brain because the normal human brain senses the opposite body via crossing nerves low in the spinal cord. He’ll detect something is in his hand but he cannot name the object. This is because the information about the perceived object will reach the right hemisphere but the information must then pass over the corpus callosum to get to the language center in the left hemisphere. The information from the right hemisphere can’t get to the naming part of the language center in the left hemisphere because the CORPUS CALLOSOTOMY cut the “bridge.” However, if the same test is done with the object placed in the person’s right hand, the information of what is felt in the hand passes directly to the language center in the left hemisphere after it crossed to the opposite side low in the spinal cord. The person can immediately name what is felt in the opposite right hand since the information does not need to cross the cut corpus callosum, the cut “bridge.”

1)      Paglioli E., Martins AA, Azambuja N, et.al. Selective posterior callosotomy for drop attacks. Neurology 2016; 87: 1968-74. 

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.