Epilepsy is a neurological disorder characterized by abnormal activity in the brain, triggering seizures. Now, what happens in the human body when a seizure occurs?
“Our whole body is an electrical system. We’re communicating through the nerves, and they’re electrical, and your brain is the main generator,” Glenna Tolbert, assistant clinical professor at the David Geffen School of Medicine at the University of California, Los Angeles, told SELF.
“A seizure happens when there’s a misfiring of your nerve cells and the electric activity in the brain is disrupted. It could be temporary, or it could be a chronic problem,” she explained. So when a person experiences multiple seizures that are not tied to a specific cause, they may be diagnosed with epilepsy.
To help manage the condition, you may be prescribed medications such as Tegretol, Carbatrol, Valium, Ativan, and Klonopin. Make sure you take them as prescribed, which means you should avoid changing the dosage yourself. If you have any concerns about your medication, speak to your doctor first.
It is a good idea for epilepsy patients to limit alcohol intake to just a drink or two. When you consume too much alcohol, the inevitable withdrawal may lead to a seizure. And another reason for moderation? High alcohol intake and seizure medication is a risky combination — this may cause dangerous side effects such as rapid intoxication.
The Centers for Disease Control and Prevention notes that brain injuries are a common cause of epilepsy. Take steps to protect yourself by wearing seatbelts and helmets to reduce the chance of severe injury.
Most of us know that bright, flashing lights can be a trigger, which backs up the recommendation to avoid any such visual stimuli and even reduce screen time as much as possible. But what are some other potential triggers to be aware of?
Seizures are also very sensitive to sleep patterns. In some cases, a long period of poor sleep or staying up all night just once may trigger the first and only seizure a person experiences.
But when you are diagnosed with epilepsy, it becomes all the more important to follow a regular sleep schedule. As the guidelines say, make sure you are getting 7 to 9 hours of sleep every night.
Last but not least, try your best to avoid too much mental or emotional strain. Stress reduction methods “could improve overall quality of life and reduce seizure frequency at little to no risk” in patients with epilepsy, according to Heather McKee, of the University of Cincinnati.
You may consider joining a support group to meet other people diagnosed with the condition. While mindfulness therapy is another option, you can also start with simpler techniques like deep breathing, outdoor walks, or personalized self-care activities.
“Any patient reporting stress as a seizure trigger should be screened for a treatable mood disorder, especially considering that mood disorders are so common within this population,” McKee added.
SOURCE: MedicalDaily.com by S. Bharanidharan
A two-year-old boy has a rare form of epilepsy that left him in tears for 15 hours straight and triggered painful outbursts of hiccups and hysterical laughter for six months.
Jack Trotter was born in Atlanta, Georgia July 2016 – a seemingly healthy baby after a smooth birth.
But a day after his mother Leah, 30, took him home to his father and sister, things changed: he began crying consistently and as his cries intensified, he became inconsolable.
Initially Leah, a special needs advocate, wasn’t worried. Babies cry, this is normal.
But this was merely a hint of a much more serious condition that would take more than a year to diagnose.
As pediatricians insisted Jack was just ‘irritable’, the little boy endured painful episodes once a month of laughter or hiccups or tears.
At three months old, in October 2016, they thought they had found an answer – a terrifying one: a doctor misdiagnosed Jack with terminal Mitochondrial disease which usually proves fatal.
However, two months later, Jack was finally diagnosed with Pyridoxine Dependent Epilepsy (PDE), a rare cause of stubborn, difficult to control, seizures appearing in newborns, infants and occasionally older children.
It is treatable – but without care and medication it can be life-threatening, and his mother Leah is now fighting to get more kids tested at birth to avoid preventable deaths.
‘We went through six months of hell and our son almost died from a treatable condition that could be tested at birth. So, that is my first order of business,’ Leah said.
‘I try to advocate through social media platforms for PDE and I have since helped a mother in Brazil obtain access to the specialists necessary to treat her daughter with PDE.
‘I would like other mothers in similar situations to know that they control the narrative. Don’t let a doctor dictate the way you feel about the diagnosis being given to your child.
“I hope that all mothers faced with these situations won’t become overwhelmed with the heavy diagnosis and medical terminology being thrown around, but instead will use the opportunity to rise up and make the best quality of life for their child.’
Leah, says she ‘was on top of the world’ when Jack, her second child, was born.
‘He was perfect at eight pounds and three ounces, 22 inches long. He nursed perfectly right off the bat,’ Leah said.
It all went smoothly. She gave birth on a Saturday morning and was home by Monday afternoon.
‘Everything was perfect. He ate well, he slept well, he was an easy and happy baby,’ she explains.
But things shifted abruptly on Tuesday evening when Jack started cry.
Leah insists she wasn’t concerned at first (‘I rocked him, loved him and knew he would feel better soon. We had our routine follow-up with his pediatrician on Wednesday.’)
But she wasn’t aware then that they were embarking on a long arduous journey to get a diagnosis.
‘Jack had still not stopped crying by that time. No exaggeration, Jack cried for 15 hours straight. He cried the entire time at the pediatrician’s office.’
After their appointment, they went home, and the crying didn’t stop until about 8pm that evening. Jack had still been eating throughout all the crying, but when stopped crying he stopped nursing.
Then something new started – and Leah was sure it was something like a seizure.
‘I cannot explain it, although I have told the story to more doctors than I can count,’ she explains.
‘Jack did not look quite right after the crying stopped. Keep in mind, he was barely five days old at this time so it was hard to say if he was just brand new or if he was acting strange.
‘Babies are strange; they have strange movements. But something was neurologically not right, and I knew it.
‘He did not look like he was seizing (not in the sense that I thought a seizure looked like at that time at least), but something told me he was having little seizures.
‘He was slightly shaking, jittery as they called it in the hospital, and then he would startle and throw his left arm out and turn his head to the left simultaneously.
‘There is no way to explain this act, you just had to see it. I tried everything to see if I was imagining it or if something wasn’t right.
‘I was so blind to the true hardships in life and without warning, my life changed in an instant. Did I even blink? Had I been dreaming all along?’
In the morning, Leah’s mother helped her to give Jack a little sponge bath. He seemed rigid, and by that point Leah was very concerned.
‘I was done. I called the pediatrician and we went back in the next morning. Jack was just five days old.’
Despite Leah’s worry, she says the staff at the hospital didn’t take her concern very seriously, until a nurse approached them and noticed something wasn’t right.
‘Before I knew it there were six or seven nurses in the room, all crowded around Jack trying to help him and my husband and I faded into the background as they worked,’ Leah said.
‘I have never been so scared in my life.’
It was soon decided that Jack needed to be sent to Children’s Healthcare of Atlanta (CHOA), the best pediatric specialists in the state.
‘I was terrified because this confirmed that something bad was happening to our newborn son,’ Leah said.
Jack only got worse. He was in and out of the hospital with hard-to-control seizures, put on a myriad of medications, and still no answers.
When he was almost three months old, he was in status again and admitted to the PICU.
That’s when a neurologist ordered an MRI and concluded that Jack had Mitochondrial disease. The doctor told Leah her son’s brain has begun to atrophy and would continue to until he died.
‘They told us there was no hope,’ she said.
That changed a few days later when the results from their genetic tests came back.
His form of epilepsy is rare but manageable – but doctors warned that if he’d been diagnosed any later, he could have suffered sinister consequences.
‘His treatment for the first six months of his life had been all wrong, almost detrimental to him,’ Leah said.
‘We immediately saw a neurologist, genetics, nutrition, all the specialists we needed to get Jack on the right track.
‘We have been working so hard ever since with six therapies per week for Jack and lots of work at home. He still has many delays and a few new diagnoses, but he has a great quality of life.’
Jack has had numerous types of seizures in the first six months of his life such as; tonic-clonic, partial, focal, absence, gelatic, dacrystic and even some where he just has constant hiccups, but it’s under control now.
Leah says their support network has been key to making it through – and now she hopes to pay it forward.
‘Everyone has been incredibly supportive throughout the entire journey and still are. We could not have made it through any of this without our amazing support system.
‘I have a few things that I am incredibly passionate about and want to work on in the future. First and foremost, I want PDE added to the new-born screening.’
Both demographic and socioeconomic factors are associated with how often adult epilepsy patients utilize emergency departments, according to findings presented at the American Epilepsy Society (AES) Annual Meeting in New Orleans.
Investigators from UCB Pharma conducted a long-term retrospective analysis of more than 95,000 epilepsy patients in order to collect more data about how this population uses emergency departments and their healthcare outcomes.
The patients lived in California, Florida, and New York, between 2003 – 2014. They had at least 1 inpatient epilepsy diagnosis in the two-year identification period and the researchers followed up for 4 years to track their inpatient and emergency department utilization data. Then, they categorized patients into groups based on age: those less than 15 years of age and those greater than 65 years of age.
The investigators monitored impact of socioeconomic factors, such as residence zip code, insurance type, and income, and demographic factors, like gender and race, to form their analysis.
The younger cohort had two-and-a-half times the emergency department usage as the older cohort across the first year of follow up, the researchers found. The younger cohort included about 10,000 patients—a much smaller group than the adult patients. This group also had 15% lower inpatient utilization for all care compared to the older patients.
In terms of care related specifically to epilepsy, the researchers found, the younger patients had 7.5 times higher emergency department utilization and nearly 4 times as many inpatient utilizations, compared to the older patient group.
The researchers analyzed the socioeconomic factors with respect to the top income quartile of each zip code and learned that the epilepsy patients in the bottom income quartile had 3 times more initial emergency room utilization and 7% higher inpatient utilization.
Patients in the bottom quartile had 2.65 times more emergency department utilization than the top quartile as well as 19% lower inpatient utilization, the investigators determined.
The gap between under-15 and over-65 was largely consistent beyond the first year of follow up, the researchers demonstrated. The younger group had emergency room utilization across the additional 3 years 2.09 times higher, and 7.39 times higher for direct epilepsy care compared to the older cohort.
The researchers also found that the patients in the bottom income quartile zip codes had long-term emergency department utilization that was 26% higher overall and epilepsy-specific visits to the emergency department that were 24% higher when compared to the top income quartile zip codes. This was true even after the researchers took other factors into account, they said.
“For people with epilepsy, demographic and socioeconomic factors are associated with overall inpatient and ED utilization, as well as epilepsy-specific utilization,” the study authors concluded. “Patients [aged less than] 15 years old and those of lower socioeconomic status have higher baseline utilization, particularly for emergency department utilization.”
These differences across age and socioeconomic groups remain intact over time, investigators confirmed, particularly from the scope of utilization 3 years out.
The study, “Longitudinal predictors of healthcare use in adults with epilepsy,” was published online on the AES website.
According to the World Health Organization, approximately 50 million people worldwide have epilepsy, making it one of the most common neurological diseases.
November is National Epilepsy Awareness Month. VCU News spoke with Victor Gonzalez-Montoya, M.D., co-medical director of the Epilepsy Monitoring Unit at VCU Medical Center to better understand the disorder. Gonzalez-Montoya is also an assistant professor in the Department of Neurology in the Virginia Commonwealth University School of Medicine.
What causes epilepsy and how can it be treated?
Epilepsy is a disorder in the brain in which there are spontaneous episodes of uncontrolled and excessive electrical activity that often disrupt its function. It can be pretty dangerous.
There are multiple causes, like lesions in the brain due to an injury, tumors, strokes, infections, genetic conditions and others. Sometimes we can find the direct cause for epilepsy, and other times it’s difficult.
But the way we diagnose and treat seizures has changed dramatically, thanks to research. The majority of time, we treat epilepsy with medication. If someone resists medication, they may seek treatment at a Level 4 Epilepsy Center, which is the highest level. VCU Medical Center is a Level 4 Epilepsy Center, and therefore we typically provide diagnostic and treatment techniques that are not widely available; techniques that help us localize the problem in the brain and see if a surgical procedure or brain stimulation is an option.
Surgery in the brain can scare people, but that too has come a long way. If surgery is an option, there are different types, depending on the patient: epilepsy resective surgery, minimally invasive laser surgery, responsive neurostimulation and deep-brain stimulation. Every patient’s brain is like a different universe, so we model the treatments to the patient.
How does epilepsy affect one’s daily life?
The disease is horrible. There are many variables that determine how a seizure affects the brain, and that determines how it appears in someone’s life. It could be anything from a twitch in one hand to someone losing complete consciousness, falling and having a convulsion that leads to injury.
If you have epilepsy, you don’t know when any of these things will happen. So as a patient, you live under the assumption that at any given time you cannot function normally. There are plenty of activities a patient with epilepsy cannot do. For example, someone with epilepsy cannot drive. So if they don’t have a good public transportation system nearby, they rely on someone to take them anywhere they need—like going to the market to get milk.
In many cases, epilepsy by itself is associated with depression, and all of these social limitations worsen the depression because they cannot take part in activities that the rest of us can. It’s a perpetuation. Epilepsy has a 360-degree effect on someone’s life.
What don’t people understand about epilepsy?
We don’t realize it, but as a society, we demand a high level of functionality. We indirectly punish those with epilepsy, when in reality they need a lot of support—from their coworkers, family, friends and the community.
Family impacts vary by culture. Some families are very hard on someone with epilepsy, which can lead to worsening of depression. Sometimes they’re not allowed out of their houses. They may not be able to go on dates like their friends. There have been reports of people losing friends because of the social effects of their disorder.
At work, people sometimes won’t tell their employers they have epilepsy. The law protects them, but since they don’t have the same functionality as someone without epilepsy, they fear their employers may find another reason to fire them.
At school, epilepsy requires the teachers to be educated on the disorder. Really, patients become the teachers of their condition because they need to share with people the correct actions to take if there is a seizure.
Why do you think National Epilepsy Awareness Month is important?
It is extremely important. This is a month that you have the chance to reach out to the community and say: Listen, wake up. If you know someone with epilepsy, there are things you can do to change or improve how you interact with them. Let’s have a conversation about it.
It’s a good start in not only alleviating the stigma, but also sharing what to do and what not to do if you see someone having a seizure. At the end of the day, it is about improving the lives of those suffering from the disorder in every way we can.
SOURCE: Virginia Commonwealth University