*The translation of this article in French and Portuguese has been made through machine translation and has not been edited yet. we apologise for any inaccuracies.
What are epilepsy and absence seizures? What´s the difference between the two and how does this neurological disease affect people living with it? Find out by reading Tim Dahoda’s story, who got diagnosed with epilepsy at age 15.
Epilepsy affects over 65 million people worldwide and is one of the most common neurological diseases globally. It’s characterised by recurring seizures that can range from mild and barely noticeable, to full convulsions. To gain insight into the patient experience, we spoke with Tim Dahoda, Project Manager for M3 Global Research, who shared his perspective on living with absence seizure, a form of epilepsy, and how he manages his diagnosis in his everyday life.
Tim revealed he was diagnosed with petit mal epilepsy at age 15. Petit mal seizures are classified as partial seizures, and commonly known as absence seizures. An absence seizure presents a short period of “blanking out” or staring into space. Like other kinds of seizures, they are caused by brief abnormal electrical activity in the brain.
Types of Epileptic Seizures
There are different types of epilepsy characterised by the types of seizures experienced by individuals. The four main types of epileptic seizures are known as generalised seizures, focal seizures, combined seizures, and unknown seizures.
- Generalised epilepsy: This type of epilepsy involves generalised seizures that affect both sides of the brain. Generalised seizures can be either motor (involving physical movement) or non-motor (without physical movement). Motor seizures may cause jerking movements, weakness or limp limbs, rigid muscles, muscle twitching, or full-body spasms. Non-motor seizures, also known as absence seizures, are characterised by staring into space, sudden stops in movement, brief twitches, or fluttering eyelids. Generalised epilepsy usually starts during childhood but can also affect adults.
- Focal epilepsy: Focal epilepsy is characterised by focal seizures that affect only one part of the brain. Focal seizures can begin with an aura, which is a minor symptom indicating the onset of a seizure. The aura can manifest as an uneasy feeling in the stomach and can then progress to motor symptoms, such as muscle twitching, jerking, spasms, or repeated movements. Non-motor symptoms may include waves of hot or cold, goosebumps, lack of movement, or changes in emotions or thoughts.
- Combined generalised and focal epilepsy: This type of epilepsy involves individuals experiencing both generalised seizures and focal seizures. As a result, they may exhibit a combination of symptoms seen in generalised and focal epilepsy.
- Unknown epilepsy: If the origin of seizures cannot be determined, a person may be diagnosed with unknown epilepsy. Individuals with unknown epilepsy may experience a mix of motor and non-motor symptoms. Motor seizures in unknown epilepsy often present as tonic-clonic seizures, characterised by stiffening and loss of consciousness, rapid jerking and convulsing, a bluish face from lack of oxygen, and loss of bladder and/or bowel control. Non-motor symptoms can include a sudden stop in movement, vacant staring, or stillness.
Each type of epilepsy has distinct characteristics and may require different treatment approaches. Tim describes his absence seizures as feeling as if his brain “has a plug where sometimes I lose my place in a conversation but then my brain plugs back in.” Tim further admits that upon his diagnosis he had “always associated epilepsy with big dramatic seizures and feared this would develop into the worst kind.” However, with the help of prescribed medication, it generally has had a low impact on his day-to-day life. Tim continues, “I’ve managed to have a positive experience with my condition within the workplace and I find working on epilepsy studies as a project manager at M3 interesting.”
Epilepsy Diagnosis and Symptoms
Tim’s journey to a diagnosis was not a direct one, which is not uncommon. In fact, many people with epilepsy go undiagnosed for years, especially when their seizures are subtle or difficult to detect. Seizures can present differently in each person with epilepsy, but there are common symptoms to be aware of, including loss of consciousness, sudden falls, convulsions, and muscle spasms or stiffness. Other signs may include confusion, staring spells, repetitive movements, and changes in behaviour or emotions. Being able to recognise symptoms of epilepsy, can help someone experiencing a seizure to get timely, appropriate care.
While attending his sister’s wedding, Tim’s mother noticed he abruptly stopped talking and then carried on a few moments later. His mother knew something was off and in the days that followed she took him to a neurologist. It can be a challenge for physicians to diagnose epilepsy quickly because other conditions, such as fainting, migraines, and even panic attacks, can cause similar symptoms. Epilepsy often cannot be confirmed until a patient has experienced multiple seizures. Having someone with him who had witnessed the possible seizure was helpful in Tim’s diagnosis. Tim’s mother could provide his neurologist with an account of how he appeared, and any other symptoms exhibited during the possible seizure, whereas Tim himself may not have realised that he paused speaking for an extended length of time.
An Electroencephalography, or EEG, is one of the most common tests to assist in diagnosing epilepsy. An EEG detects abnormalities in your brain’s electrical activity. During the procedure, electrodes consisting of small metal discs with thin wires are pasted onto your scalp. The electrodes detect tiny electrical charges that result from the activity of your brain cells. These charges are commonly referred to as brain waves. Tim’s EEG results revealed the spike in his brain waves typical of epilepsy.
Tim’s Experience Living with Absence Seizures
Absence seizures usually occur in children between the ages of four to fourteen. A child may have multiple absence seizures each day, and they may go unnoticed. However, absence seizures can get in the way of learning and affect concentration at school. Tim emphasises the importance of parents being cognisant of their child’s speech and mannerisms. “If your child seems to stop and start or pause a lot in their sentences, be sure to mention it to a healthcare professional. My type of seizure can be hard to identify.” Tim explained. “But if you notice something out of the ordinary, it is important for your child to be evaluated by a neurologist as soon as possible.“
One of the biggest challenges Tim faced with his diagnosis is regarding his medication. Treatment such as anti-epileptic drugs, or AEDs, can help most people with epilepsy have fewer seizures or stop having seizures completely. As a young adult, Tim admits he would sometimes miss doses of medication. However, as he grew older, he realised the importance of being consistent with his medication, especially for the purpose of driving. In fact, to receive his driver’s license, a letter from his doctor was required to ensure that he was on medication and okay to drive. It is essential to discuss with a physician about driving safety if you have epilepsy. In most cases driving is permitted if a patient is confirmed by a physician as having not experienced any seizures within a particular period, usually several months.
Tim’s message to others living with a neurological disease like epilepsy is one of hope and positivity. “It can be a difficult diagnosis to deal with, but it’s important to remember you’re not alone,” he said. “There are resources available to help people living with epilepsy, such as support groups and counselling. It’s important to seek out these resources and to have a strong support system of friends and family.” Tim’s advice is to ultimately take control of your own health by researching, participating in research when possible, communicating with healthcare specialists, and understanding that you are not defined by your diagnosis but rather by what you do with it.
What is narcolepsy and how is it to live with this condition? Maria Ramos, a 26-year-old from Spain openly discusses her journey of living with this rare sleep disorder, shedding light on the challenges she faces.
To help instill awareness around this rare motor neurone disease, Jim Spangler shares his story as an ALS caregiver for his father.