On the morning of January 12th, 2020, I woke up to the sound of my phone vibrating. It was my mom because it was her birthday and I had told her to call me the night before. I had the perfect plan: at approximately 2 a.m. that morning, I snuck into the house (I lived on campus at UCSD normally) and slept on the garage floor; when she called me, I was going to tell her to check for something in my step dad’s car in the garage. I began to sneak underneath the car to scare her, but the next thing I knew I woke up in an ambulance, a searing pain in my arm and delirium clouding my judgment. When I woke up a little more, I tried to climb out of the stretcher I was laying in, but the EMTs in the back of the ambulance held me back, telling me where I was and what had happened. After that brief memory, all I remember is waking up in the hospital, my mom and dad at my bedside.
What just happened to me? Why was I in my garage in one moment, and the next thing I knew I was in an ambulance, struggling for freedom?
What Is Posttraumatic Epilepsy?
As it turns out, just as I began to crawl under the car, I began to have a seizure. But this still does not answer all the questions you may have as the reader.
Unfortunately, this was not my first seizure–or my last, as I suffered another 2 weeks later–because I suffer from a seizure disorder known as posttraumatic epilepsy. Posttraumatic epilepsy (PTE) is an epileptic disorder that results from trauma to the brain, most commonly a traumatic brain injury (TBI), where recurrent seizures are present long after the original trauma. During the first week of recovery following a brain injury, it is common for patients to experience early post-traumatic seizures, seizures due to the recent trauma. However, late post traumatic seizures are not as likely to occur, because they are not provoked by the original injury. Therefore, not everyone who suffers trauma to their brain develops PTE. The greater the force of the physical insult to the brain, the more likely the patient is to later develop PTE. As well, those who have early post traumatic seizures have a lower likelihood of recurrence in the years following; however, seizures that occur further out from the initial trauma have a higher likelihood of developing into recurrent seizures characteristic of PTE.
The chances of developing PTE following TBI are variable, and no common pattern has been found as the cause of PTE; but, as mentioned above, one significant determinant in the later development of PTE is the severity of the given TBI (Montalvo & Benbadis 2014). The more severe, the more likely. Other, less predominant factors include age, prior alcohol abuse, posttraumatic amnesia, and loss of consciousness at the time of the initial injury, among others (Lamar et al. 2014; Xu T et al.2017). Seeing as I am recovering from a severe TBI, the likelihood of me developing PTE was high.
As I briefly mentioned above, I am recovering from a severe TBI. This resulted from a
suicide attempt where I jumped from a mall parking garage here in San Diego, on October 8th, 2013. I was taken to Rady Children’s Hospital for four months afterward: foe the first month, I was in a medically induced coma and stayed in the pediatric intensive care unit (PICU); the remaining three months, I stayed in the rehabilitation ward in the TBI rehab program. This is where I had my first seizure (on Christmas eve, if you can believe it).
There is not one significant pattern of seizure characteristics in those diagnosed with PTE. Other than how it is acquired and the progression of the disorder, the seizures caused by PTE can take the form of any epileptic seizure type. Generally, there are two distinct categories of seizures: generalized and focal seizures (CDC n.d.). In this article, I will be focusing on the latter type, as it is the type of seizure I have had. Furthermore, there are subtypes within each of these categories. The two types of generalized seizures are petit mal, also known as absence seizures in which the patient seems to zone out and stare into space; and grand mal, also known as tonic-clonic seizures, and what we think of when we hear the word “seizure”, with its jerky movements.
A grand mal seizure is the dangerous one, requiring immediate medical attention, because the patient’s uncontrollable movements and loss of consciousness can put an individual in serious danger including a car crash if they are driving, or falling if they are walking, among other things. There are four phases in a tonic-clonic seizure: aura, tonic, clonic, and postictal. The aura stage, if present, is kind of like the warning signs that you are about to have a seizure and precedes the tonic phase. In the tonic phase, the individual’s body stiffens, and their back arches. The clonic phase is characterized by the onset of jerky movements and convulsions. Together, the tonic and clonic phases are known as the ictal phase. Finally, the postictal phase is like a recovery period after the stress of the ictal phase. Here, drowsiness, fatigue, confusion, and combativeness may occur (Abood & Bandyopadhyay 2020).–this is the state I was in when I woke up briefly in the ambulance. Also, this state may be accompanied by amnesia.
There are different routes that may be taken in the treatment of PTE following TBI, which are dependent on how the patient reacts to initial treatments and the severity of PTE. An effective, and by far the most common, treatment method is the use of an AED (anti-epilectic drug, not the paddles used to stop a heart attack). In the past decade, the development of new medications has led to effective medicinal treatment of even late, unprovoked seizures of TBI and PTE. Whereas early AEDs were not effective in treating late PTE, here is a quick rundown of current medicinal treatment of seizures following TBI, based partly on what was told to me by my neurologist.
Seizures that occur in the first year or two after the initial trauma are known as late post traumatic seizures. However, the recurrence of seizures is what is officially known as posttraumatic epilepsy. It is at this point, following recurrence, that a doctor will prescribe the patient an AED that works best for them (Chen et al. 2009). After, seizures will lay dormant, especially if the patient continues with the appropriate treatment regimen. However, after about five-to-six years following the initial injury (usually), recurrent seizures may appear again, even while taking the AED a patient was taking for years. At this point, further treatment and preventative measures need to be implemented.
For most cases, the first course of action at this point is to prescribe a second AED in conjunction with the first. This may help prevent further seizures; however, for some, the journey does not end there. If, by chance, even while taking both AEDs the seizures persist, a patient’s doctor will refer them to a specialized epilepsy center to monitor and evaluate the patient’s condition over an extended period of time, ranging from a few days to a couple weeks (Chen et al. 2009; Montalvo & Benbadis 2014). After this observation period, a team of physicians reviews the data collected from the patient to determine the treatment option fit for the patient’s specific condition. A common intervention used after this point is to surgically remove the portion of the brain where the seizures originate. However, for some, this may not be possible if removal will cause too much damage to the patient’s brain. In rare cases, surgeons will cut the structure linking the two hemispheres of the brain, known as the corpus callosum. This procedure was more frequently used in the past, and resulted in what is known as a split-brain. However, nowadays, doctors prefer a treatment known as deep brain stimulation is. Deep brain stimulation uses electrodes placed in the patient’s brain to regulate abnormal electrical pulses from the brain (Mayo Clinic n.d). This treatment method is actually used to treat many other neurological disorders, such as Parkinson’s disease and obsessive-compulsive disorder, and its efficacy in treating many more is being studied now, including major depression, addiction, and dementia. Nevertheless, although modern medicine has improved drastically in the past few decades, this process of finding the right treatment method for a specific patient does not always go without a hitch, especially when it comes to medications.
A Rocky Road
Currently, I am living comfortably and seizure-free while taking two AEDs; however, this wasn’t always the case. Following the two seizures I had in January, two key events transpired that would inadvertently cause me suffering.After the first seizure (on January 12th), an ER physician increased the dosage of the AED I was taking at that time. Second, after my next seizure two weeks later, my neurologist prescribed me a second AED. A few weeks passed and I started to experience side-effects–but I didn’t recognize them as side-effects at their onset. The persistent side effects that I experienced were drowsiness and dizziness in the morning for about an hour or so–I didn’t recognize this as too out of the ordinary because, being a college student, I was pretty sleep deprived a lot of the time. It was only when the dizziness got worse–to the point that it felt like my whole world was spinning–and I experienced a couple episodes of dry heaving, that I knew something was up.
Long story short, the dose of my original AED had risen too high, and that caused my side effects. But it was quite a journey for me to realize this as the cause, and not the second AED. So treatment of PTE, no matter how severe and what stage, does not come without caveats.
Live the Life You Want
At the beginning of this article, I presented you with a story from my life. Had I not told you everything that transpired that day (the ambulance, the seizure, etc.), I’d seem like any other college-age student trying to surprise and scare the living shit out of his mom. Had I not told you that I have a TBI, you wouldn’t know from reading this article. So, although the art piece I decided to make the cover photo for this article seems to have no connection to the topic of my article, the symbolism I intend to convey is monumental. This is an art piece created by me, a disabled person. Someone who has a severe TBI. Someone who suffers from post traumatic epilepsy, though you’d never know it if only shown the painting. Just as you’d never know any of that by reading this had it not been explicit in the article. No matter what condition someone has, they can achieve greatness in some form, as long as they believe they can. Epilepsy is a disorder that is highly treatable, and people with it lead normal–or even extraordinary–lives. Your life becomes the life you want to live when you strive for it and persevere through hardships. Your experiences and conditions are just lenses that give you a unique perspective on the world and make your life, your life.
Cory D. Lamar, M.D. et al., (2014). Post-Traumatic Epilepsy: Review of Risks, Pathophysiology, and Potential Biomarkers. Journal of Neuropsychology and Clinical Neuroscience. https://neuro.psychiatryonline.org/doi/full/10.1176/appi.neuropsych.260201
Center for Disease Control and Prevention (CDC), n.d. About Epilepsy: Types of Seizures. U.S. Department of Health & Human Services. https://www.cdc.gov/epilepsy/about/types-of-seizures.htm
Evaristo Montalvo MD and Selim Benbadis MD, (2014). Understanding Post-traumatic Epilepsy. Epilepsy Foundation. https://www.epilepsy.com/article/2014/6/understanding-post-traumatic-epilepsy
Waleed Abood and Susanta Bandyopadhyay, (2020). Postictal Seizure State, StatPearls Publishing LLC. The National Center for Biotechnology Information. https://www.ncbi.nlm.nih.gov/books/NBK526004/
James W. Y. Chen, MD, PhD et al., (2009). Posttraumatic epilepsy and treatment. Journal of Rehabilitation Research & Development, Volume 46, Number 6. pp. 685–696. Department of Veterans Affairs. https://www.rehab.research.va.gov/jour/09/46/6/pdf/Chen.pdf
Mayo Clinic staff, n.d. Deep Brain Stimulation: Overview. Mayo Foundation for Medical Education and Research (MFMER). Mayo Clinic. https://www.mayoclinic.org/tests-procedures/deep-brain-stimulation/about/pac-20384562
Xu T, Yu X, Ou S, et al. Risk factors for posttraumatic epilepsy: A systematic review and meta-analysis. Epilepsy Behav. 2017;67:1-6. doi:10.1016/j.yebeh.2016.10.026. https://pubmed.ncbi.nlm.nih.gov/28076834/