The following is a list of terms, acronyms, and resources I’ve encountered since my epilepsy and PNES diagnoses. These are strictly for informational purposes, are not recommendations, suggestions, or medical advice. Some are written in my own words, taken from various reputable websites, or a combination of the two. This is not an exhaustive list by any means and is meant to enlighten and educate the interested, the ignorant, and the curious, I hope you find it useful.
Temporal Lobe: The temporal lobes sit behind the ears and are the second largest lobe. They are most commonly associated with processing auditory information and with the encoding of memory. The temporal lobes are also believed to play an important role in processing affect/emotions, language, and certain aspects of visual perception.
The dominant temporal lobe, which is the left side in most people, is involved in understanding language and learning and remembering verbal information. The non-dominant lobe, which is typically the right temporal lobe, is involved in learning and remembering non-verbal information (e.g. visuo-spatial material and music).*
Insula: Part of the cerebral cortex buried deep inside the brain. The insula is thought to play a role in a number of functions including self-awareness, perception, and cognition. The true contribution of the insula to brain function, however, is poorly understood*
Aura: Generally considered an early part of the seizure. Symptoms of an aura may nclude:
- Déjà vu (a sense that something has happened before when in fact it hasn’t)
- Jamais vu (a feeling that you’re seeing something you know well for the first time)
- Odd smells, sounds or tastes
- Vision difficulties
- Numbness or ‘pins and needles’ in parts of the body
- Feelings of intense fear
Sometimes a person may have an aura which doesn’t progress to become a more severe or prolonged seizure. Some people don’t experience an aura at all, and their seizure has no early warning signs.*
Ictal: The middle stage of a seizure is called the ictal phase. It’s the time from the first symptom to the end of the seizure activity. It is during this time that intense electrical activity is occurring in the brain.*
Post-Ictal: The final post-ictal stage occurs after the active (ictal) part of the seizure. This is the recovery stage and during this phase any physical aftereffects of the seizure are felt. The type of seizure and the part of the brain involved will determine how long it takes for a person to return to their usual self. *
Types of seizures
Focal onset seizures: The term focal is used instead of partial to be more accurate when talking about where seizures begin. Focal seizures can start in one area or group of cells in one side of the brain.
Focal onset aware seizures: When a person is awake and aware during a seizure, it’s called a focal aware seizure. This used to be called a simple partial seizure.
Focal onset impaired awareness: When a person is confused or their awareness is affected in some way during a focal seizure, it’s called a focal impaired awareness seizure. This used to be called a complex partial seizure.
Generalized onset seizures: These seizures affect both sides of the brain or groups of cells on both sides of the brain at the same time. This term was used before and still includes seizures types like tonic-clonic, absence, or atonic to name a few.
Refractory Epilepsy [aka drug resistant]: Seizures sometimes are not controlled with antiseizure medications. Studies suggest that epilepsy fails to come quickly under control with medicines in about one-third of adults and approximately 20-25% of children. Drug-resistant epilepsy occurs when a person has failed to become (and stay) seizure free with adequate trials of two antiseizure medications (called ASMs).These seizure medications must have been chosen appropriately for the person and tried alone or together with other seizure medications. If epilepsy is drug resistant, it is important to be seen by an epileptologist to evaluate why.*
Status Epilepticus: A seizure that lasts longer than 5 minutes or having more than 1 seizure within a 5 minute period, without returning to a normal level of consciousness between episodes is called status epilepticus. This is a medical emergency that may lead to permanent brain damage or death.*
SUDEP: Sudden Unexpected Death in Epilepsy, is the term used when a person with epilepsy dies without warning and where the post-mortem fails to establish any other cause of death*
Temporal Lobe Epilepsy: Temporal lobe seizures begin in the temporal lobes of your brain, which process emotions and are important for short-term memory. Some symptoms of a temporal lobe seizure may be related to these functions, including having odd feelings — such as euphoria, deja vu or fear.
Temporal lobe seizures are sometimes called focal seizures with impaired awareness. Some people remain aware of what’s happening, but during more-intense seizures, you might look awake but be unresponsive. Your lips and hands may make purposeless, repetitive movements.*
Unknown onset seizures: When the beginning of a seizure is not known, it’s now called an unknown onset seizure. A seizure could also be called an unknown onset if it’s not witnessed or seen by anyone, for example when seizures happen at night or in a person who lives alone. As more information is learned, an unknown onset seizure may later be diagnosed as a focal or generalized seizure.*
Seizure Definitions—Non Epileptic
FND: Functional neurological disorder: FND, is a problem with the ‘software’ of the brain. Scans are usually normal. When people with FND hear this they often wonder if the doctors is suggesting they are ‘imagining it’. The simple answer is ‘No – you are not’.
FND is due to a problem going on in the brain at a level that people CAN’T control – just like migraine. It REALLY IS HAPPENING.*
NES/ NEAD: [aka Dissociative seizures]: Some NES are caused by mental or emotional processes, rather than by a physical cause. This type of seizure may happen when someone’s reaction to painful or difficult thoughts and feelings affect them physically. These are called dissociative seizures.
Dissociative seizures used to be called ‘pseudoseizures’. This name is unhelpful because it suggests that the person is not having ‘real’ seizures or their seizures are deliberately ‘put on’.
Dissociative seizures happen unconsciously, which means that the person has no control over them and they are not put on. This is the most common type of NES.
Dissociative seizures are sometimes known as non-epileptic attacks. People who have non-epileptic attacks may be described as having ‘non-epileptic attack disorder’ (NEAD).
These terms are not always helpful because they describe the condition by saying what it is not rather than saying what it is.
The newer name of dissociative seizures is more helpful because it does not describe seizures in terms of epilepsy. It is also recognised by the World Health Organisation (this means that it is included in the International Classification of Diseases which is a list of all known diseases and conditions)*
PNES: Psychogenic non-epileptic seizures; are attacks that may look like epileptic seizures but are not epileptic and instead are cause by psychological factors.
Sometimes a specific traumatic event can be identified.
PNES are sometimes referred to as psychogenic events, psychological events, or nonepileptic seizures (NES).
The only reliable test to positively make the diagnosis of PNES is video EEG monitoring.
Treatment with cognitive behavior therapy and serotonin re-uptake inhibitors has been shown to be effective.
More research is needed to find additional ways to treat PNES.*
Epileptologist: A neurologist who has a specific interest in, and focuses on, epilepsy. To become a neurologist in the US, one must graduate from medical (or osteopathic medicine) school, and then complete a neurology residency (training) for 4 years. After that, the neurologist can sub-specialize in a more specific filed of neurology, including epilepsy.*
Neurologist: A neurologist is a medical doctor who specializes in treating diseases of the nervous system. The nervous system is made of two parts: the central and peripheral nervous system. It includes the brain and spinal cord.*
Neuro Psychologist/Neuropsychiatrist: Specializes in understanding the relationship between the physical brain and behavior. The brain is complex. Disorders within the brain and nervous system can alter behavior and cognitive function.
EMT: Emergency Medical Technician
SMU: Seizure Monitoring Unit; A specialized unit within a hospital for Video EEG monitoring.
ED [ER]: Emergency Department [Emergency Room]
ICU: Intensive Care Unit
EEG: Electroencephalogram: An EEG is a test that detects abnormalities in your brain waves, or in the electrical activity of your brain. 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. The charges are amplified and appear as a graph on a computer screen, or as a recording that may be printed out on paper.*
Video Telemetry [VEEG]: A video EEG (electroencephalograph) records what you are doing or experiencing on video tape while an EEG test records your brainwaves. The purpose is to be able to see what is happening when you have a seizure or event and compare the picture to what the EEG records at the same time. Sounds that occur during the testing are also recorded – this can pick up if a person talks or makes sounds during an event. By doing this, doctors reading the EEG can tell if the seizure or event was related to the electrical activity in the brain.*
SPECT Scan: A single-photon emission computerized tomography (SPECT) scan lets your doctor analyze the function of some of your internal organs. A SPECT scan is a type of nuclear imaging test, which means it uses a radioactive substance and a special camera to create 3-D pictures.*
PET Scan: A positron emission tomography (PET) scan is an imaging test that can help reveal the metabolic or biochemical function of your tissues and organs. The PET scan uses a radioactive drug (tracer) to show both normal and abnormal metabolic activity.*
MRI: Magnetic resonance imaging (MRI) is a medical imaging technique that uses a magnetic field and computer-generated radio waves to create detailed images of the organs and tissues in your body. Most MRI machines are large, tube-shaped magnets.*
CT Scan: A computerized tomography (CT) scan combines a series of X-ray images taken from different angles around your body and uses computer processing to create cross-sectional images (slices) of the bones, blood vessels and soft tissues inside your body. CT scan images provide more-detailed information than plain X-rays do.*
Intracranial Monitoring [Depth Probes]: An invasive surgery where neurosurgeons place electrodes inside your brain to monitor brain activity over several days or weeks. Your neurologist will opt for intracranial monitoring if the initial test results didn’t provide enough information.*
Anti Seizure Medication: There are many different medicines that can prevent or stop seizures. These are sometimes called anti-seizure medications (ASMs), anti-epileptic drugs (AEDs) or anti-seizure drugs. They will successfully control seizures for about 7 out of 10 people with epilepsy.*
- Examples of anti-seizure drugs
- Dilantin [Phenytoin]
- Lamotrigine [Lamictal]
- Topimax [Topiramate]
- Lacosamide [ Vimpat]
Rescue Medication: “As needed” medicines are medicines or treatments that are given only if needed for specific situations. Some people also call them “rescue treatments.” The ideal rescue medicine (1) is easy to use, (2) works quickly, (3) is safe with little to no side effects, and (4) works well. The goal is to stop seizures quickly to prevent emergency situations. Hopefully this will prevent you from needing an emergency room. However, rescue medicines do NOT take the place of emergency medical care. If a true medical emergency happens, get emergency medical help right away. If medications are prescribed as rescue treatments, they do NOT take the place of daily seizure medications. Most people who have epilepsy are prescribed other medications that they take on a regular basis.*
- Examples of rescue medications
Craniotomy: The surgical removal of part of the bone from the skull to expose the brain. Specialized tools are used to remove the section of bone called the bone flap. The bone flap is temporarily removed, then replaced after the brain surgery has been done.*
Temporal Lobe Resection [Aka Temporal Lobotomy]: A surgical procedure where a section of the temporal lobe identified as the seizure source is removed.
Therapy and Support
CBT: Cognitive Behaviour Therapy: A common type of talk therapy (psychotherapy). You work with a mental health counselor (psychotherapist or therapist) in a structured way, attending a limited number of sessions. CBT helps you become aware of inaccurate or negative thinking so you can view challenging situations more clearly and respond to them in a more effective way. CBT can be a very helpful tool ― either alone or in combination with other therapies ― in treating mental health disorders, such as depression, post-traumatic stress disorder (PTSD) or an eating disorder. But not everyone who benefits from CBT has a mental health condition. CBT can be an effective tool to help anyone learn how to better manage stressful life situations.*
Mindfulness and Meditation
What is mindfulness? Mindfulness is the ability to be present, to rest in the here and now, fully engaged with whatever we’re doing in the moment*
What is meditation? Meditation isn’t about becoming a different person, a new person, or even a better person. It’s about training in awareness and getting a healthy sense of perspective. You’re not trying to turn off your thoughts or feelings. You’re learning to observe them without judgment. And eventually, you may start to better understand them as well*
North American and International Organizations
ILAE: International League Against Epilepsy: Founded in 1909, is the world’s preeminent association of health professionals and scientists working toward a world where no person’s life is limited by epilepsy. The goals of the ILAE are to:
- Serve health professionals as the premier international resource for current and emerging standards and best practice
- Support health professionals worldwide to enhance their knowledge and skills in the prevention, diagnosis, treatment, and care of epilepsy
- Advocate for epilepsy as a public health imperative
- Promote research and innovation for epilepsy*
EAC: Epilepsy Association of Calgary: The Epilepsy Association of Calgary is a charitable social service agency established to address community, individual and family needs related to epilepsy. Their mission: To support independence, quality of life and community participation for those with and affected by epilepsy.*
BCES: British Columbia Epilepsy Society: The BC Epilepsy Society is a provincially incorporated non-profit, and federally registered charitable organization dedicated to serving British Columbians living with epilepsy, and their families. Their mission: To empower, educate and support British Columbians living with epilepsy and their families, and support research to make their lives easier.*
IBE: The IBE was established in 1961 and has grown to almost 140 chapters in over 100 countries all around the globe. The Bureau is the recognised international umbrella body representing national epilepsy organisations that have a specific interest in improving the social condition and quality of life of people with epilepsy and their carers. The IBE is made up of laypersons and professionals interested in the medical and non-medical aspects of epilepsy. We address social problems such as education, employment, insurance, driving licence restrictions and public awareness. The Bureau also works in close liaison with the International League against Epilepsy (ILAE), an organisation of medical professionals involved in the medical and scientific issues of epilepsy. IBE is funded mainly by membership dues from its chapters and by financial support from other contributors*
CEA: The Canadian Epilepsy Alliance (CEA) is a Canada-wide network of grassroots organizations dedicated to the promotion of independence and quality of life for people with epilepsy and their families*
EPILEPSY CANADA: Epilepsy Canada is a registered Canadian charity dedicated to positively affecting the lives of those living with epilepsy. Its sole mandate is to raise monies for epilepsy research with an objective of finding a cure*
Living Well With Epilepsy: Founded in 2009, provides the latest epilepsy information, including: news, style, fitness, entertainment, healthcare updates and personal stories, to our dedicated and influential readers around the world*
Epilepsy Foundation Of America: A nationwide organization providing community services, public education, federal and local advocacy, seizure first aid training, and research funding into new treatments and therapies*