What is Epilepsy?

                

Epilepsy, a brain disorder that causes recurring seizures, affects about 1.2% of people in the United States. 1 in 26 people will develop epilepsy at some point in their lives. Yet, despite how prevalent it is, epilepsy is still underfunded, misunderstood, and left out of conversations about health.

Epilepsy looks different for every individual. Some seizures cause complete loss of awareness, while others can feel the seizure coming on. Some individuals stare blankly for a few seconds, while others twitch and convulse. Epilepsy is a spectrum. There is a vast amount of medications, types of seizures, and levels of severity of seizures. Because symptoms look different in everyone, testing and diagnosis can take years. Access to specialized care is limited, especially in more rural areas of the country, which makes the path to seizure management even harder. This journey is more about curbing seizures. The goal is to raise the quality of life, reach independence, and find the right treatment. 

Epilepsy consistently receives less funding and attention than other medical conditions. Without funding, less research, fewer experimental treatments, and slower diagnoses continue in the epilepsy community. In 2022, the National Institutes of Health funded $226 million in epilepsy research, less than 0.5% of its total $48 billion budget. Committing to more visibility, funding, and healthcare is the step to a better future for people with epilepsy.

Sudden Death in Epilepsy

One of the sobering stories of the effects of epilepsy is the life and death of Sophie Fynmore, a 21-year-old from Missouri. Fynmore fell victim to SUDEP (Sudden Unexpected Death in Epilepsy) in 2023. Fynmore fought a long battle with her seizures, struggling to reach containment and dealing with unhelpful doctors. Doctors misdiagnosed Fynmore with countless problems, and she suffered from unfair treatment for most of her childhood. Fynmore was born with a chromosomal genetic disorder known as supernumerary isodicentric chromosome 15 a disorder that causes excess genetic material on her 15th chromosome. The disorder causes developmental delays and is often misdiagnosed as Autism Spectrum Disorder (ASD). One major effect of this disorder is severe epilepsy. Fynmore’s family fought for years for doctors to listen and diagnose properly.

“I had to fight tooth and nail for every single inch I got for Sophie. Every bit of it.” – Alicia Coad

For most of her childhood, Fynmore suffered from terrifying episodes that doctors ruled away as “night terrors.” Her mother, Alicia Coad, would find her violently trembling, flinging herself onto the wall, and completely unconscious. Fynmore would wake up scared and confused, unaware of what had happened. Despite all of these symptoms and warnings, Fynmore was 14 when she received her proper diagnosis of epilepsy. It took a full-blown tonic-clonic seizure, characterized by full unconsciousness, muscle convulsions, and foaming at the mouth. Finally, after this, the doctors performed full genetic testing to find out what her mother knew all along. Fynmore and her family lived in rural Missouri, making it difficult for them to get advanced medical attention for Fynmore. Specialized care was hours away, and seeing an epileptologist often was not an option. Her mother and older sister, Bailey Fynmore, became her primary caregivers. They did all they could to help her, relying on research and their fierce love for Sophie.

“Even in her final days, an epileptologist was treating her. He never once mentioned SUDEP. Not once.” – Alicia Coad

The terrifying nature and unpredictability of her seizures loomed over Fynmore and her family’s heads. Fynmore was suffering up to five seizures a day. Some were easier than others, but some were life-threatening. After fighting for years, her quality of life took a huge turn. Her family was lost. Then, suddenly, without knowing what SUDEP was, Fynmore passed away. No doctor had taken the time to explain to the Fynmores what SUDEP was or how to prevent it. It is extremely preventable. SUDEP is rarely discussed, mostly because doctors do not want to be fear-mongerers, but Fynmore’s story is an example of what can happen when doctors do not try to educate. SUDEP takes hundreds of lives a year, but it remains silent. If Fynmore’s doctors were more alert and paid more attention to her cries for help, she would still be with us today. Doctors must make an honest commitment to their patients suffering from invisible disabilities.

Hear the pain in Alicia Coad’s voice

@honeybunbaybay

These seizure devices are all things that no doctor let us know were available, so I want to let you know. Very sad about the affordability of everything and wishing I knew more before. Stay educated and dont forget manufacturer matters! #sophiestory #epilepsy #suddendeaths #sudep #griefandloss #seizure #seizures #foryou #epilepsyawareness #greenscreen #greenscreenvideo #fypシ #seizureawareness #xybca #seizuremonitoring #sudepawareness

♬ original sound – baybay

Bailey Fynmore reaching out to the epilepsy community on Social Media

My Story

I am aware of how lucky and privileged my situation is compared to the other epilepsy warriors out there. While epilepsy has changed my life, I am aware of how bad it could have been had I not received comprehensive care from my doctors. In the last eleven years, battling this condition, I have gone through long periods of fear and feeling invisible for years. My journey started before middle school. I woke up one morning and found myself in Mount Sinai Hospital, unaware of what had happened and even what a seizure was. Doctors had to explain to me in kid terms that something was wrong in my brain, but they did not have a reason why. I do not have a family history of epilepsy, no warning signs, or triggers. Because of all of these factors, they believed it was an isolated episode. They thought that it was most likely triggered by the death of my father, who had passed away exactly a month before. I remember how scared I felt, faced with my mortality. After a long day of tests, scans, and doctors, everything came back inconclusive. There were no answers. 

About two months later, I had another episode; this time, there was no question. There was something wrong, and it was not going away. After this, I entered a time that can only be described as intense fear. With no answers from my doctors, my family was facing the chance of losing another family member so soon. I saw the helplessness and worry in my family and felt it was my fault they were feeling like this. Going to sleep was the worst part, just dreading waking up in the hospital.

My first appointment with an epileptologist just made me more nervous. I was told that I would be dependent on medication for the rest of my life, and even with treatment, there was always the possibility of a breakthrough seizure. The thought of losing control of my body shook me to the core. I did not fully understand the implications of what had just happened. My life permanently changed.

Living with epilepsy is a balancing act. Learning to manage it while also wanting to live a full and normal life was challenging and took a long time. The side effects of medications like drowsiness, headaches, and nausea all took some time getting used to. The fear of having a seizure at any given time looms over me, but still, I know how lucky I am. While the fear never goes away, it gets easier to manage.

Epilepsy has taught me more than just coping skills; I am more appreciative, empathetic, and I have learned how to find strength in vulnerability. Epilepsy has made me more aware of the invisible battles that someone might be facing without support. Most importantly, it has made me grateful for my support system, my doctors, family, and friends who I know would take care of me if I had a seizure.

Treating Epilepsy

Dr. Deborah Forst is a fellowship-trained neuro-oncologist who conducts research and dedicates much of their day-to-day practice to treating and caring for patients suffering from seizures. Dr. Forst spent a year in internal medicine training before starting her neurology residency in 2011. Over the last 14 years, her work has been shaped by both clinical care and research, allowing her to make a meaningful contribution to the field of neurology. The biggest thing Dr. Forst’s patients complain about is the removal of independence. When suffering from seizures, you must be six months seizure-free to be allowed to drive again. This means that suddenly adults become dependent on their children, friends, or parents to drive them everywhere; it can be extremely infantilizing and marks a great loss of independence.

Epilepsy is a complex and serious neurological disorder, but with the right treatment combination of antiepileptic drugs (AEDs). About 70% to 80% of adults diagnosed with epilepsy can achieve complete seizure control. Finding the right course of action to treat epilepsy can only be described as “trial and error.” It can be exhausting dealing with varying side effects 

Dr. Forst on the revolutionizing of Anti-epileptic Drugs

Understanding epilepsy and what is going on in your brain is the most important part of navigating an epilepsy diagnosis. That is where an EEG (electroencephalogram) comes into the picture. It tests for any abnormal activity in the brain. EEGs do more than just diagnose. They can also be used to determine whether the patient is taking the correct seizure medication or if the patient is having seizures that are not felt. 

For women, there are several extra layers to be considered. Hormones, puberty, and a woman’s menstrual cycle do not cause epilepsy on their own, but they can test the effectiveness of epilepsy medications. Some birth control methods affect anti-seizure drugs, and vice versa. 

Dr. Forst’s patients’ two biggest concerns when it comes to being diagnosed with epilepsy are the uncertainty of when the next seizure could happen and the infantilization of it all. The loss of predictability is the scariest part of this diagnosis, especially if seizures are occurring at night. It is extremely vulnerable and infantilizing. Driving is prohibited until you are six months seizure-free and medicated. Being monitored while swimming and exercising is taxing. It is limiting. 

“Taking away someone’s driving privilege, even for six months, is incredibly distressing. In places like LA or Boston, where your car is your freedom, it feels like your whole life is being overturned. Losing that independence can feel infantilizing. You go from living your life to having to ask someone for a ride everywhere.” – Dr. Forst

While all of that seems super heavy and scary, seizures are manageable. Being diligent about taking medicine makes all the difference. The most common reason that people go through breakthrough seizures is because of a forgotten dose of daily medication. Having a reminder or routine is necessary for containing this condition. Dr. Forst makes sure to tell their patients about the need for consistency with medicine. Understanding seizure triggers, which vary from person to person, is also key. Sleep deprivation, caffeine, alcohol, and stress are the most common seizure triggers because of how they react with certain medicines. Finding the trigger is life-changing.