Posts Tagged seizures
My dad had his first seizure when I was 10 years old. I remember being confused by his reaction to his developing epilepsy, and my family members felt the same way. He seemed to want to ignore what had happened, and he seemed to be in a mixture of complete denial while also being aware of it and just not caring enough or wanting to be careful enough. I was terrified for him. He lived alone, and I knew that his risk of having a seizure without anyone realizing it was quite high. I hated that he wanted to blow off doctors appointments or to not follow-up on test results.
I had my first epileptic seizure last October, at age 23. You can read about my first seizure and my second seizure in my past blog posts if you’d like. Prior to my first seizure, if someone would have asked how I would respond if I were to have a seizure out of the blue, my answer would have been simple: PANIC. I’m prone to anxiety about small, trivial matters. I would have guessed that I would be terrified about my health, and that I would want to have as much testing as possible to get answers as quickly as possible. I would have guessed that I would be completely on top of my medication and avoiding risky behaviors such as drinking or not getting enough sleep (alcohol and sleep deprivation both lower the seizure threshold). I would have guessed that I wouldn’t hesitate to accept the reality of my situation, and that if I found a medication that prevented my seizures, that I would be terrified to get off that medication even years later.
Yet, my real reaction to my seizures has been quite different. It’s now been about 8 months since I had the seizures and I’ve experienced a roller coaster of emotions, several of them I’ve experienced several times over. Fear or panic has not been my primary reaction like I would have expected. I think my friends and family members have probably been a bit surprised by my reaction. I realize that there are probably a lot of friends or family members of people with seizures and/or epilepsy who are struggling to understand why their seizure-prone loved one isn’t reacting the same way that they are. My goal for this blog post is to share the roller coaster of emotions that I have experienced and why. I’m going to run in the order that the emotions showed up for me.
Confusion. When I first “came to” after my seizure my first reaction was confusion. I felt like I had been sleeping for HOURS and was waking up mid-dream. So, it was confusion but not a logical, well thought out confusion but instead just a really surface level “hmm that seems odd” type confusion.
(emotional) numbness: Once I was at the hospital, I remember realizing that others (Ryan, my mom, etc) were quite worried about me. Everyone seemed serious and concerned. This was mildly confusing to me because I was still in a “foggy” mental state and the reality of what had happened hadn’t hit me yet.
Exhaustion: Despite having felt like I had been asleep for hours when I first “came to”, I was still exhausted afterwards. I did a LOT of sleeping and when I would wake up I still felt tired.
Frustration: I was hospitalized for five or six days after my second seizure and on about day three of being in the hospital I became frustrated. I was tired of being poked, prodded and of just being in the hospital in general. I was frustrated that I had so many people concerned about me because I just wanted to sleep and have time to myself to absorb what had happened and to wrap my mind around it.
Denial: After getting out of the hospital, I googled seizures and read that most of the time, doctors don’t medicate people after a single seizure because their odds of having a second seizure are fairly low (under 50%). If a person has 2 seizures within 2 year,s their odds of having a third seizure are more likely than not (over 50%) so after a second seizure medication usually is started. After being out of the hospital for a little bit I remember saying to my boyfriend “I guess I should try to accept that I ‘just’ have epilepsy. That maybe my brain just had a seizure for no apparent reason and we won’t find a cause and my brain just needs anti-epileptic medication to avoid seizing now.” I meant to suggest this as a ‘worst case scenario’ that I should try to mentally prepare for. Yet as soon as I said it, I realized by the look on his face that my boyfriend believed that to be true already. He had already accepted that my seizures weren’t just “random” and that something in my brain had changed. I was still assuming that we would find some weird answer such as an infection or illness (even though all of my testing came back normal and I had no symptoms of illness prior to, during or after the seizures). I was in denial.
Sadness. Once I realized that I didn’t have a seizure as a result of any illness, infection or other “random” cause, it started to sink in that we probably wouldn’t get answers to what had happened, and I was probably at a high risk of having more seizures if I weren’t on medication. This was hard for me to swallow and caused sadness.
Hopelessness. I was 23, childless and had been with my boyfriend for 7 years when I had my first seizure. After accepting that I was probably now dependent on seizure medication to avoid seizures, I realized that this was an important factor regarding getting pregnant, being pregnant and giving birth. Even the safest of seizure medications increase the risk of birth defects, even though the risk is fairly low (my neurologist said about 8% vs the general population being at about a 2% risk for birth defects). I also began to realize that with my father having epilepsy, and now me having seizures myself that perhaps this is somehow genetic and if I do have a healthy pregnancy and birth, I could pass the epilepsy on to my child. This is the hardest for me to handle because I love children and have always dreamed of being a mother someday. At first, I was fixated on the thought that if I have a baby while on seizure medication and then my baby has a birth defect, or I miscarry, or my child has epilepsy I would forever feel guilty. If any of those things happened, would I live in regret feeling selfish for having chosen to go ahead with having a baby knowing my risks? If that IS selfish, then isn’t the obvious unselfish thing to do be to not have children? Not having children has never really felt like an option for me. So for a while I became overwhelmed with helplessness.
Determination. After feeling hopeless for a while I realized how much I had to be thankful for. I was seizure-free since beginning medication. I have read stories of people who have completely uncontrolled seizures and I can’t even imagine how difficult that must be. I felt terrible for feeling all of these negative emotions regarding my situation when SO many others have it much, much worse. I realized that I needed to force myself to be determined to live with my seizures/epilepsy regardless of how many seizures I have or how it affects my life. Having children has been a dream of mine longer than anything else, and I realized I can’t let epilepsy take that from me no matter what.
Avoidance. It took me roughly 3 months to really wrap my mind around what had happened to me. I have always been a bit slow to accept change or big events. I have to repeat things in my mind over and over before I can find peace with them. Having seizures turned my world upside down and it took me a full three months to pick everything back up and put it back in place. During that three-month period, I was really up and down with my thoughts and feelings surrounding what had happened. I live in a small town so it’s hard to go into any store or business without seeing someone I know. My family members had posted on Facebook about my seizures (I did not) so it seemed like everyone knew what had happened. I ran into the grocery store and the bank and would be stopped by people who I only see a few times a year asking me details about what had happened. I was still trying to make sense of it myself, so I didn’t really have the ability to explain it all to other people. Sometimes I didn’t want to think about it at all, but even when I wasn’t avoiding thinking about it, I didn’t have an interest in re-hashing the details with people I am not emotionally close to. So I wanted to avoid most of the people I knew.
Loneliness. While I avoided going out in public too much to avoid having to talk about what happened, I found that this made me lonely. I needed more social interaction than I was getting, but I was afraid that venturing out into the world more would mean I had to address what happened, so I felt stuck between a rock and a hard place.
Anxiety. Both of my seizures happened at night, within an hour of falling asleep. For months (five or so?) I don’t think I laid down for bed a single time without the thought of “what if I have a seizure in 20 minutes?” crossing my mind. This made it really hard to fall asleep , and then I would start thinking about how NOT sleeping increased my odds of having a seizure (sleep deprivation) which increased my anxiety and the cycle just kept going. A few nights I would lay in bed for over 3 hours before finally falling asleep. I also experienced anxiety when going out with my mom or my sister when my boyfriend would stay home. I knew that he handled my seizures perfectly (calling 9-1-1) but I have never really seen most other people respond to a seizure so I’m not sure if they would freeze or panic or if they’d get me help. I was particularly anxious about going with my sister because her children were only 1 and 4 and I was afraid of having a seizure in front of them as that would be traumatic for them.
Panic. Every once in a while I’d have a new “symptom” that I had never experienced before and I would panic, thinking that it might be an aura. I had read that many people with epilepsy have auras that include things like “floaters” in their vision, the smell of burning rubber, a smell of gunpowder, a metallic taste in their mouth, sudden confusion/brain fog, etc. Our apartment had a radiator style electric heater that ran along the base of our living room wall. Once a pair of waterproof gloves fell onto the heater and started to melt, and my heart started beating so quickly and I blurted out “I smell something burning! Do you smell something burning?!” and to my horror my boyfriend said no, he didn’t smell anything. I felt like I could barely breathe and my chest was tight because I was so panicked. Thankfully, my boyfriend got up and walked around and then said “Oh yeah I do smell it over here” and then found the glove so I realized it was a ‘real’ smell and not an aura.
More denial and avoidance. The last few months (5-8 months post-seizures) my primary emotions have been denial and avoidance. I feel exactly like I did before having seizures. I’ve accepted that the odds of any kind of test showing a cause for my seizures is highly unlikely. So, when it comes to making appointments at my neurologists or scheduling testing that my doctor or neurologist wants me to have, I tend to just want to avoid going. I don’t feel like the odds of the test showing anything are very high, I hate how going through with the testing makes me recall what happened, and I just don’t enjoy being at the doctors or having testing done in general. Logically I know that it makes sense to do whatever testing and appointments my neurologist feels are worthwhile, but it’s emotionally easier for me to avoid appointments and tests and just avoid having to think about seizures or epilepsy at all.
If you have had seizures, please feel free to share what emotions you’ve dealt with in the comments. Or, if you love someone with epilepsy feel free to share your emotions about the situation as well. The goal of this blog post is to increase awareness of what emotions may come along with seizures and an epilepsy diagnosis, but I’m only one person so I’m sure others out there have different experiences and emotions.
I also want to apologize if this came across as whiny or ungrateful for how lucky I have been to have seizure control while on medication, and to have very few side effects from medication. I realize that my situation could be much worse than it is, and I’m somewhat ashamed of the emotions that I’ve felt in the past (primarily hopelessness and sadness because others have it so much worse) but I wanted to be as honest as possible about my experience. My goal isn’t to whine or complain or get sympathy at all, I just want others to realize they aren’t alone and their emotions post-seizure and/or epilepsy diagnosis are normal.
[WEB SITE] Novel statistical approach reveals details about brains’ internal networks in patients with epilepsy
A novel statistical approach to analyzing patients with epilepsy has revealed details about their brains’ internal networks. The findings may lead to better understanding and treatment of the disease, according to Rice University researchers.
Rice statistician Marina Vannucci and lead author Sharon Chiang, an M.D./Ph.D. student at Rice and Baylor College of Medicine, and their co-authors detailed their technique to analyze brain activity data from patients with epilepsy and control groups to see how distinct structures in the brain spontaneously interact.
The results showed differences in brain connectivity between the groups. In one instance, they showed structures that plan and then activate movement, which tend to interact in one direction in control subjects, may have abnormal bidirectional interactions in the brains of patients with temporal lobe epilepsy.
The study appears in the journal Human Brain Mapping.
The Rice team approached its analysis of the brain in much the same way a meteorologist uses radar to predict the weather. Rather than winds and water, they look at the shifting circulation of blood in brain images that depict dynamic connections between structures.
“Temporal lobe epilepsy is a form of focal epilepsy with seizures originating from the brain’s temporal lobe. However, a network of regions is affected, which is evident in the research findings,” said co-author John Stern, director of the Epilepsy Clinical Program at the University of California, Los Angeles, and co-director of the UCLA Seizure Disorder Center.
“The idea is that, with better understanding of drivers in these networks, down the line, future treatments may be able to disrupt these networks and prevent epileptic seizures,” Chiang said.
The new approach is based on Bayesian probability, which does not provide definitive answers but “degrees of belief” based on the strength of the evidence.
The researchers used two types of data from patients with temporal lobe epilepsy and healthy control subjects. The first, functional magnetic resonance imaging (fMRI), detailed the brain’s resting-state networks, thought to control higher-order functions including attention, executive control and language. Functional MRI produces maps of the brain based on oxygenated blood flow related to neural activity.
The second, standard MRI, detailed structural connections in the brain believed to be necessary for effective communication. Integrating both types of data allowed for improved inference, Vannucci said.
Extended imaging sessions at UCLA allowed the statisticians to model links between structures in epileptic patients’ brains and to compare them either individually or collectively with each other and with the controls.
The data from scans of multiple patients and control subjects helped piece together insights unavailable from individual techniques like electroencephalography or positron emission tomography (PET) scans.
“The statistical approach has advantages,” said Vannucci, who chairs Rice’s Department of Statistics. “One is that we use data from multiple subjects. Rather than estimating networks from individuals and then averaging them, we estimate networks at the epileptic and control group levels by using all the data at once. Then we can look for differences between the two networks and across time.
“We take into account what we call heterogeneity, accounting for variations between one individual and another,” she said. “It allows us to get better estimations. At the end of the day we have fewer false positives, so the network we are able to construct is more reliable.
“Ultimately, we want to understand what is different about that connectivity and the effect of epilepsy on the connections across the whole brain,” she said.
Vannucci said results using fMRI data corroborated several previously known connections found through electrocorticography. One, for example, was the sequential activation during motor tasks of the premotor cortex, then the primary somatosensory cortex, then the primary motor cortex in healthy brains.
But it also revealed novel connections in patients with temporal lobe epilepsy, including two-way communications between the premotor and primary somatosensory cortex. It showed epileptic brains engage other parts of the brain to handle alertness tasks. Brains of patients with epilepsy may have smaller overall areas and intensity of activation in their alertness networks, which keep brains ready for incoming stimuli. The study found a different spatial pattern for effective connections into and out of the alertness network in patients as compared to controls.
“Currently, surgical resection is the treatment of choice for some patients with medically refractory epilepsy,” Chiang said. “However, if drivers in these networks can be identified and possibly stimulated, rather than completely resected, this may potentially allow a more targeted treatment.”
The International League Against Epilepsy (ILAE) is the world’s main scientific body devoted to the study of epilepsy, and it has recently revised its classification of seizures. The changes will help make diagnosing and classifying seizures more accurate and easier.
In this article, you’ll find the new general outline of basic seizure classification. An expanded view of seizure classification has also been developed and will be updated on epilepsy.com in the coming weeks
People with epilepsy have recurring seizures that often occur spontaneously and without warning. The official definition of a seizure is “a transient occurrence of signs and/or symptoms due to an abnormal excessive or synchronous neuronal activity in the brain.”
- This means that during a seizure, large numbers of brain cells are activated abnormally at the same time. It is like an “electrical storm” in the brain.
- The nature of the seizures depends on many factors, such as the person’s age, the sleep-wake cycle, prior injuries to the brain, genetic tendencies, medications, which circuits in the brain are involved, and many others.
Separating seizures into different types helps guide further testing, treatment, and prognosis or outlook. Using a common language for seizure classification also makes it easier to communicate among clinicians caring for people with epilepsy and doing research on epilepsy. The classification also provides common words for people with epilepsy and the general public to describe their seizures.
History of Seizure Classification
- For decades, the most common words to describe seizures were grand mal and petit mal. Although the medical meaning of these terms was fairly precise, some people often used them loosely when referring to any big or little seizure.
- For over 35 years, the terms partial and generalized seizures were used to describe types of seizures. This system divided seizures into partial (seizures starting in one area or side of the brain) and generalized (seizures starting in both sides of the brain at the same time).
- Partial seizures were then defined by whether a person was aware or conscious during the seizure.
- Simple partial seizures: Person is aware of what happens during the event.
- Complex partial seizures: Person has some impaired awareness during the seizure. They may be confused, partially aware, or not aware of anything during a seizure.
- The old classifications worked for many years but did not capture many types of seizures. This new version will hopefully be more complete.
The New Basic Classification
The basic classification is a simple version of the major categories of seizures. The new basic seizure classification is based on 3 key features.
- Where seizures begin in the brain
- Level of awareness during a seizure
- Other features of seizures
Defining Where Seizures Begin
The first step is to separate seizures by how they begin in the brain. The type of seizure onset is important because it affects choice of seizure medication, possibilities for epilepsy surgery, outlook, and possible causes.
- Focal seizures: Previously called partial seizures, these start in an area or network of cells on one side of the brain.
- Generalized seizures: Previously called primary generalized, these engage or involve networks on both sides of the brain at the onset.
- Unknown onset: If the onset of a seizure is not known, the seizure falls into the unknown onset category. Later on, the seizures type can be changed if the beginning of a person’s seizures becomes clear.
- Focal to bilateral seizure: A seizure that starts in one side or part of the brain and spreads to both sides has been called a secondary generalized seizures. Now the term generalized refers only to the start of a seizure. The new term for secondary generalized seizure would be a focal to bilateral seizure.
Whether a person is aware during a seizure is of practical importance because it is one of the main factors affecting a person’s safety during a seizure. Awareness is used instead of consciousness, because it is simpler to evaluate.
- Focal aware: If awareness remains intact, even if the person is unable to talk or respond during a seizure, the seizure would be called a focal aware seizure. This replaces the term simple partial.
- Focal impaired awareness: If awareness is impaired or affected at any time during a seizure, even if a person has a vague idea of what happened, the seizure would be called focal impaired awareness. This replaces the term complex partial seizure.
- Awareness unknown: Sometimes it’s not possible to know if a person is aware or not, for example if a person lives alone or has seizures only at night. In this situation, the awareness term may not be used or it would be described as awareness unknown.
- Generalized seizures: These are all presumed to affect a person’s awareness or consciousness in some way. Thus no special terms are needed to describe awareness in generalized seizures.
Describing Motor and Other Symptoms in Focal Seizures
Many other symptoms may occur during a seizure. In this basic system, seizure behaviors are separated into groups that involve movement.
- Focal motor seizure: This means that some type of movement occurs during the event. For example twitching, jerking, or stiffening movements of a body part or automatisms (automatic movements such as licking lips, rubbing hands, walking, or running).
- Focal non-motor seizure: This type of seizure has other symptoms that occur first, such as changes in sensation, emotions, thinking, or experiences.
- It is also possible for a focal aware or impaired awareness seizure to be sub-classified as motor or non-motor onset.
- Auras: The term aura to describe symptoms a person may feel in the beginning of a seizure is not in the new classification. Yet people may continue to use this term. It’s important to know that in most cases, these early symptoms may be the start of a seizure.
Describing Generalized Onset Seizures
Seizures that start in both sides of the brain, called generalized onset, can be motor or non-motor.
- Generalized motor seizure: The generalized tonic-clonic seizure term is still used to describe seizures with stiffening (tonic) and jerking (clonic). This loosely corresponds to “grand mal.” Other forms of generalized motor seizures may happen. Many of these terms have not changed and a few new terms have been added. (see image below)
- Generalized non-motor seizure: These are primarily absence seizures and the term corresponds to the old term “petit mal.” These seizures involve brief changes in awareness, staring, and some may have automatic or repeated movements like lipsmacking.
Describing Unknown Onset Seizures
When the beginning of a seizure is not known, this classification still gives a way to describe whether the features are motor or non-motor.
The New Expanded Classification
The expanded classification keeps the framework of the basic classification, but adds more seizure types as subheadings. In the following image, the types of features under motor and non-motor seizures are listed for all types: focal, generalized, and unknown onset.
Classification of a seizure type is only part of the seizure description. The work to update the seizure classification has been done by a large group of dedicated people in epilepsy over a number of years. This new sysyem will move us forward, making it easier to describe seizures and using a common language to talk about them.
A few other points:
- The new classification is designed to have some flexibility. Use of other descriptive terms or even free text is encouraged.
- Most seizures can be classified by signs and symptoms that happen during a seizure. However, other information is useful when available, for example, phone videos, EEG, MRI, and other brain imaging, blood tests, or gene tests. For practical purposes, long descriptive terms are probably not useful for day-to-day life.
- This new seizure classification does not change the definition of epilepsy or epilepsy syndromes. The ILAE also has produced a new classification of the epilepsies, which we look forward to learning more about. The epilepsy classification includes the whole clinical picture, with information on seizure types, causes, EEG pattern, brain imaging, genetics, and epilepsy syndromes, such as Lennox-Gastaut syndrome and juvenile myoclonic epilepsy.
While the ILAE 2017 seizure classification is exciting, changing terms can be confusing and can take a lot of work. The Epilepsy Foundation is committed to helping educate people about the changes, what it means for them, and how older terminology relates to this new system.
- Information about seizure types on epilepsy.com and in our print materials is being updated.
- Online forums and other ways of reaching out to everyone affected by these changes are being explored.
- Stay tuned!
Written By Drusilla Moorhouse
Don’t you dare put that spoon in my mouth.
1. Epilepsy is a brain disorder that causes seizures, which are basically like electric storms in your brain.
Epilepsy, also known as a seizure disorder, is a disorder of the brain that causes recurrent, unprovoked seizures. Those seizures are caused by surges of electrical activity in the brain, often compared to an electric storm.
In most cases, the cause of epilepsy is unknown. “Our challenge now is to understand the genetic architecture underlying each individual epilepsy,” Dr. Ley Sander, medical director at the Epilepsy Society in the U.K. and professor of neurology at University College London, told BuzzFeed. “We are also trying to understand why some people will respond well to a certain drug while others won’t.”
2. Not everyone with epilepsy has convulsive, jerking seizures.
In fact, most people with epilepsy experience “partial” (or focal) seizures. These affect one area of the brain and can result in an aura, physiological reactions, or motor and sensory changes. They can cause a person to stare blankly and/or smack their lips, pluck at their clothing, wander around, or perform other bizarre (but involuntary) actions.
The dramatic convulsions that most people associate with epilepsy are a result of a seizure affecting both sides of the brain at once. These “generalized” seizures can also cause “staring spells,” brief body jerking, and “drop attacks” (suddenly falling to the ground).
3. When someone’s having a convulsive seizure, keep them safe, supported, and on their side.
When a person is having a convulsive seizure (or you know/they have indicated they are about to), gently roll them on one side (to allow any fluids to drain out of their mouth and keep their airway open), support their head, remove any dangerous objects nearby (including their glasses), and time the seizure.
If a seizure lasts longer than five minutes, call 911.
“Seizures usually end within a few minutes and keeping a person safe from injury during a seizure and paying attention to the seizure duration are the best first aid,” Dr. John Stern, director of the Epilepsy Clinical Program at UCLA, tells BuzzFeed. “If a seizure is longer than five minutes, then the risks may be greater and emergency care may become more important. If a person is not known to already have epilepsy or has a complicated medical condition, then emergency care may be needed sooner.”
For other types of seizures, it is important to remain with the person, gently guide them from danger (but avoid restraining them), and call 911 if the seizure lasts longer than five minutes.
4. NEVER force something into the mouth of someone having a seizure.
It’s physically impossible to swallow your tongue, and a “bite block” (wooden spoon, wallet, etc.) could cause serious injury.
A person having a convulsive seizure may briefly stop breathing and have a blue skin color, but Stern explains that “this is mostly due to the diaphragm becoming stiff along with the other muscles for breathing.”
This is normal and brief, and the person will start breathing normally again as soon as their muscles relax. Do not attempt mouth-to-mouth or CPR during a convulsive seizure. Positioning the person on their side with their mouth pointed downward is the best way to keep their airway open.
5. Please remain with the person after they have a seizure to calm and reassure them.
They will be very confused and disoriented (after my first seizure I believed I had been in a plane crash!), and usually surrounded by frightened faces. It is extremely helpful if you are direct and candid and explain what just happened, who and where you are, and try to give them as much privacy as possible.
And if a person has urinated (which can happen with some seizures), cover that up to help limit any embarrassment, suggests Sander. Because after reassuring us and making sure we’re safe, the best thing you can do is help us restore our dignity.
6. Seizures are scary!
Seizures are truly terrifying, whether you’re the person experiencing an aura or someone witnessing a grand mal seizure with convulsions. During a seizure, you lose consciousness, your muscles violently contract (I once broke a bed frame during a seizure), and your skin often turns blue from lack of oxygen.
Although we aren’t awake for the convulsions (and don’t remember them afterward), the aura preceding them (which is actually a seizure itself) is frightening for a host of other reasons: We could just be enjoying a hilarious kitten video at home or out running errands when suddenly we’re overcome by one or more of these unnerving sensations: a feeling of dread, déjà vu, blurry or tunnel vision, a strange sensation in our bellies, and/or the inability to speak.
Fortunately, my own auras last long enough that I’m able to text people to alert them about what’s happening (I have aphasia so I can’t actually tell them) but that also means that I have longer to experience the terrifying knowledge that my brain is about to fuck me up big time.
7. Epilepsy is actually not unlike The Wizard of Oz.
Picture yourself fleeing an evil witch who wants to take your little dog Toto when suddenly a tornado strikes and you’re tossed around in a twister. Then you wake up and don’t know where you are (it’s definitely not Kansas) or why the fuck you’re surrounded by diminutive townspeople singing your praises in an absurdly bright, colorful, and unfamiliar place.
8. Seizure “hangovers” are the absolute worst.
Imagine the worst hangover of your life, combined with food poisoning, a migraine, sore muscles, and memory loss. Like Dorothy in Oz, you don’t just have a seizure and automatically return to normal.
“A seizure consists of a wave of abnormal electrical activity spreading through different parts of the brain,” explains Dr. Jacqueline French, a neurologist and the chief scientific officer for the Epilepsy Foundation. “Once the ‘wave’ of electricity goes past, the brain that it affected becomes exhausted, and often is unable to function.” That fog and confusion can last anywhere from a few minutes to a few days.
9. Seizures aren’t just triggered by flashing lights.
In fact, less than 2% of people with epilepsy have photosensitive epilepsy, says Sanders. They’re more commonly triggered by stress or being overtired.
Other common triggers include specific times of day or night (for instance, I’ve had most of my seizures just before sunset); sleep deprivation; stress; illness; flashing bright lights or patterns; caffeine, alcohol, or drug use; menstrual cycles or other hormonal changes; poor diet; and certain medications.
“Epilepsy affects everyone differently,” emphasizes Sander. “Although there can be similarities, people tend to have different triggers for their seizures, while some have none. Recognizing those triggers and trying to avoid them is an important part of self-management.”
10. Having a seizure isn’t the same as having epilepsy.
11. Medications can control seizures in most people with epilepsy.
Anti-epileptic drugs (AEDs), aka anticonvulsants, taken daily can control seizures “by reducing the excessive electrical activity in the brain that causes the seizures,” explains Sander. “The exact mechanism of AEDs is not well understood, but it is likely that different AEDs work in slightly different ways. The aim of optimal therapy is to get maximum seizure control with minimum side effects.”
According to the Epilepsy Foundation, medication controls seizures in about 7 out of 10 people with epilepsy.
12. Even though there are risks associated with taking anti-seizure medication during pregnancy, for many it would be riskier to stop treatment.
“Although there is no anti-seizure medication that is proven safe during pregnancy, the risks for several are low and are believed to be reasonable in the context of the risks of seizures during pregnancy if treatment is stopped,” says Stern. “Pregnancy is overall safer when the seizures are best controlled, and this should be considered in the planning.”
Faye Waddams, who has documented her experience in the award-winning blog Epilepsy, Pregnancy, Motherhood and Me, tells BuzzFeed, “My neurologist advised me that although there is a risk with any anti-epileptic drug, my epilepsy was so uncontrolled that the risks of not taking it and having a seizure, causing harm to myself and the baby, was greater than any risk from the medication.”
And although Waddams (pictured above with her son, Noah) unfortunately did have seizures during her pregnancy despite the medication and was hospitalized several times, she is happy to report that she has “a healthy, happy, perfect baby boy who turns 1 this week.” (Waddams also ran a half marathon “nine months to the day” after giving birth to Noah!)
13. People with epilepsy can lead very active lives.
Eric Wheeler (shown above) is a marathoner and triathlete who — like many other athletes — also happens to have epilepsy. According to Stern, “A healthy lifestyle is important for everyone and it should not be avoided because of epilepsy. Moreover, some people with epilepsy find their seizures are better controlled when they are active. Exercise and recreation can help reduce stress, improve mood, and help brain health, which can benefit seizure control.”
Of course, seizures should be well-controlled — through medication, healthy habits (like avoiding known triggers), and sometimes even brain surgery — before a person with epilepsy participates in sports like triathlons.
As Stern emphasizes, “the activities need to be safe ones with regard to the person’s seizure risk.”
14. Driving is…complicated.
State laws require that most people with epilepsy be seizure-free for six months to a year before they can drive again.
“The driving restrictions vary among the states, but six months is a common period of restriction after a seizure,” says Stern. “This time period is somewhat arbitrary, but it relates to the fact that the likelihood of a seizure decreases as time passes after a seizure. Most of the risk is in the first year and much of it is in the first six months. The six-month period is intended to reduce the risk of injury at the time when the risk of a seizure is highest.”
The Epilepsy Foundation of America has a helpful database of state driving laws pertaining to epilepsy.
15. Epilepsy is probably more common than you think.
According to the World Health Organization, “Approximately 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally.”
Many epilepsy advocacy organizations cite a startling statistic: One in 26 people will develop epilepsy in their lifetime. That number, based on a life expectancy of 80 years, “seems inaccurate because people do not talk about epilepsy even when they have it. In actuality, epilepsy is more common than Parkinson’s disease, multiple sclerosis, ALS, and cerebral palsy combined,” asserts French, the Epilepsy Foundation’s chief scientific officer.
16. And we’re in good company with lots of famous people.
Celebrities with epilepsy include Prince (who referenced his childhood epilepsy in the song “The Sacrifice of Victor”), the Beastie Boys’ Adam Horovitz, Danny Glover, Lil Wayne, Neil Young, NFL twins Tiki and Ronde Barber, and Harriet Tubman.
17. People with epilepsy are strong and resilient as hell.
It’s easy to get caught up in the things that people with epilepsy lose: our dignity, our independence (especially when our driving privileges are revoked), and, for many, our ability to participate in certain activities ranging from scuba diving to bathing (because of the risk of drowning).
That’s why we appreciate every moment we have without a seizure, finding an anticonvulsant that is effective without debilitating side effects, and victories like being seizure-free for six months and longer.
We’re fighting like hell to not only manage this disease but also dispel the stigma associated with epilepsy. We are people to admire, not fear, and the best thing you can do for us is to learn more about this disease and first aid guidelines. Don’t be afraid to ask us questions — we want to talk about it!
Neural stem cells have been found in epileptic brain tissue—outside the regions of the brain where they normally reside. In a group of patients who underwent surgery for epilepsy, over half had stem cells where healthy individuals do not have them, according to a study from Sahlgrenska Academy.
“We have confirmed what earlier studies indicated, and gained new knowledge about molecular characteristics of these neural stem cells,” says Milos Pekny, professor at the Institute of Neuroscience and Physiology.
Neural stem cells with the ability to form new neurons in the brain are normally present in the hippocampus (the part of the brain connected to learning and memory) and in the subventricular zone of the brain. However, in 8 of 14 patients in the study, neural stem cells were present outside these regions, namely in the epileptic brain tissue that was surgically removed.
Over 50 operations of this kind are conducted in Sweden each year, of which about 20 in Gothenburg, with most patients becoming seizure-free or having significant reduction in seizure frequency. After an extensive investigation aiming at the precise localization of the epileptic focus, brain tissue that is damaged due to malformation, injury or other cause, is surgically removed.
Surgeons, neurologists and neuroscientists worked side by side in the current study, which followed ethical approval and informed consent from each patient. For research purposes, the team was allowed to examine a small part of the removed tissue used for histopathological examination – in the operating room and in the research laboratory, just several minutes after removal.
“About 60% of the patients had epileptic tissue that contained neural stem cells that could be converted into neurons, astrocytes and oligodendrocytes (the three types of brain cells that neural stem cells can differentiate into) when they were later grown in the laboratory,” says Milos Pekny.
“This may point to a greater plasticity in the epileptic tissue, which to some extent can be compared to the brain tissue of a newborn,” continues Milos Pekny.
Scientists have gained a better molecular understanding of the region of the brain in individuals with epilepsy which – due to a developmental abnormality, trauma, stroke, or a growing tumor – has stopped responding to control signals, and this results in recurrent seizures.
“The knowledge gained in this study primarily helps to improve our understanding of the brain responses in epilepsy,” outlines Milos Pekny.
Scientists have long speculated that astrocytes, the cell type that controls many neuronal functions, give rise to neural stem cells in damaged brain tissue.
“Our study suggest that this is not the case, at least in epilepsy, and it contributes the advancement of our understanding of what can happen in the brain in people with epilepsy,” says Milos Pekny.
[WEB SITE] Research provides insights into how exposure to certain stimuli facilitates occurrence of epileptic seizures
Why does exposure to rhythmic stimulation at certain frequencies facilitate the occurrence of epileptic seizures?
In 1997, flickering patterns in an episode of the series Pokémon triggered epileptic seizures in nearly 700 Japanese children. These spontaneous outbreaks in apparently healthy children were linked to so-called “photosensitive epilepsy”, a type of epilepsy in which seizures are the result of certain visual stimuli.
Now researchers at Pompeu Fabra University (UPF), Polytechnic University of Catalonia (UPC) and the University of Exeter (UoE, UK) propose an explanation for the occurrence of epileptic seizures as a result of the exposure to certain stimuli.
The study has been published in the journal NeuroImage.
Epilepsy is one of the most common neurological diseases in the world. According to the World Health Organization (WHO), almost 50 million people worldwide suffer from it and 30% do not respond to treatment. The disorder is characterized by epileptic seizures – episodes of the uncontrolled, synchronized activity of neurons that can lead to loss of consciousness and other serious impairments of brain functioning.
Considering the brain as a dynamic system allows engaging tools from engineering and physics in order to find out what factors lead to the occurrence of these highly synchronized epileptic discharges. The research by UPF, UPC and UoE has used a computational model of a cortical column – a putative basic functional unit of the cerebral cortex – to show that neuronal tissue displays epileptic-like activity when exposed to enhanced stimulation of certain frequencies. This increase may be due to the brain’s own activity or a consequence of external stimulation, such as the flickering in the Pokémon cartoon.
According to the research results, this behaviour stems from dynamic properties of the neuronal tissue, such as an ability to undergo resonance. Visual stimulation with frequencies close to alpha rhythm (which was the case of the flickering in Pokémon) may interfere with the natural alpha activity prevailing in the visual cortex leading to an increase of amplitude of the discharges and consequently to epileptic seizures. This resonance phenomenon can be compared to what happens when we push a swinging child. If we push it at the right moment, with a frequency equal to the swinging frequency, it will swing further and further and eventually may fall from the swing.
This fall is an analogy to an epileptic crisis that may occur in the brain due to stimulation with a certain frequency. In the Pokémon series, the lights flashed at a frequency of 12Hz.
“The alpha rhythm of the brain is 8-12Hz and the cartoons were showing exactly the alpha frequency of 12Hz. This phenomenon coincides with the results of our research”, says the author of the study, Maciej Jedynak.
Thus, a purely dynamic scenario can explain the susceptibility to driving with delta and theta rhythms, as well as a lack of susceptibility to very fast or very slow stimulation. The researchers showed how these phenomena manifest in the presence of random driving, which mimics the ongoing stimulation of a cortical column more faithfully than the periodic one.
“This research provides further insight into ways that communication within brain networks can possibly lead to the occurrence of seizures” comments Marc Goodfellow, senior lecturer in Mathematics at the University of Exeter and leader of the study.
According to Jordi Garcia-Ojalvo, group leader of the Dynamical Systems Biology Lab at UPF and collaborator in the study, “this work shows that the temporal characteristics of the random activity of the brain can have profound effects on its behaviour”.
“In order to develop new alternative kinds of epilepsy treatment we need to understand more about the mechanisms underlying this disease”, adds Jedynak, researcher at the same lab and the leading author of the article. “Our findings help to elucidate mechanisms of the generation and spreading of epileptic seizures in the brain. In the future they may improve the methodology of computational modelling aimed at devising tools for epilepsy treatment”.
- Traumatic brain injury,
- Behavioral abnormalities,
- Sleep-wake disorder
Monday, December 5, 2016
The longer the seizure, the greater the chance of a “crash.” Seizures lasted an average of 75 seconds among patients who crashed and 30 seconds among those who didn’t crash.
The study was to be presented Sunday at the annual meeting of the American Epilepsy Society, in Houston.
“Our goal is to identify if certain types of seizures — coming from a specific part of the brain or causing a particular brain wave pattern — are more likely to lead to a crash. That information could then be used by doctors to objectively determine who can safely drive and who should not,” said study author Dr. Hal Blumenfeld, director of the Yale Clinical Neuroscience Imaging Center, in New Haven, Conn.
Blumenthal, who is also a professor of neurology, neuroscience and neurosurgery at Yale, added that it isn’t clear why people who have longer seizures are more likely to crash.
“It’s going to take a lot more data to come up with a reliable way of predicting which people with epilepsy should drive and which should not,” Blumenfeld said in a news release from the epilepsy society.
“We want to unearth more detail, to learn if there are people with epilepsy who are driving who shouldn’t be, as well those who aren’t driving who can safely drive,” he said.
SUNDAY, Dec. 4, 2016 (HealthDay News) — People with epilepsy who experienced longer seizures during a simulated driving test may face an increased risk for crashes while on the road, a new study suggests.
SOURCE: American Epilepsy Society, news release, Dec. 4, 2016
HOUSTON — Researchers are making headway in determining which patients with epilepsy should be allowed to drive.
A new analysis suggests that factors such as seizure duration and impaired consciousness influence later driving performance.
“Our goal is to figure out if there are clues” that will “inform doctors and patients” about whether it’s safe to drive, said epilepsy specialist and lead study author, Hal Blumenfeld, MD, PhD, professor of neurology, neuroscience and neurosurgery, Yale School of Medicine, New Haven, Connecticut.
All too often, he said, patients with epilepsy who can safely drive are “lumped together” with all patients with epilepsy and discouraged from getting behind the wheel.
The researchers’ findings were presented here at the American Epilepsy Society (AES) 2016 Annual Meeting.
For this analysis, patients with epilepsy underwent video/electroencephalographic monitoring that analyzed ictal and interictal driving data captured prospectively from a driving simulator. The simulator had a steering wheel, gas pedal, and brake attached to a laptop computer.
Participants were asked to drive as long as they could and, if possible, to continue to drive if they had a seizure. The test was conducted in an inpatient unit with medical care available if needed. Patients drove from 1 to 10 hours, most for an average of 3 to 4 hours.
The variables researchers considered included car velocity, steering wheel movement, application of the brake pedal, and crash occurrence during the ictal and postictal periods, as well as during subclinical epileptiform discharges.
In a poster presented at the meeting, investigators reported an analysis of a total of 20 clinical seizures in 16 patients. Seven of these seizures resulted in crashes.
The analysis determined that the longer the seizure, the more likely the person was to have an accident. “The average for people who crash is 80 seconds and the average for the ones who don’t have driving impairment is 23 seconds, so on average, the seizures are longer” in those who crash, said Dr Blumenfeld.
No Time Limit
But the analysis doesn’t provide a time limit for seizures. “So far, this shows that seizures lasting longer are more dangerous; but we don’t have a cutoff yet,” said Dr Blumenfeld. “That’s one thing that could be helpful.”
He stressed that these are averages and that other factors, such as severe motor impairment and loss of consciousness, contribute to safety.
The current study also showed that when patients lose consciousness during seizures, they are significantly more likely to crash (P < .05). “That stands to reason based on common sense, but no one had really tested that before,” said Dr Blumenfeld.
He and his colleagues plan to do additional research, looking at other things that might affect safety, for example, from what part of the brain seizures originate.
“There may be factors that we can put together in a model and come up with a real decision tree,” he said. “We aren’t there yet, but that’s the goal.”
Rules and regulations surrounding driving with epilepsy vary significantly around the world. In India, for example, having a single seizure means you can’t drive for life.
In the United States, states variously require 2 years, 6 months, or 3 months of seizure freedom, while others, including Connecticut, don’t have a set limit but leave the driving decision to the discretion of the clinician.
“So it goes to show that we really don’t know what the limit should be,” said Dr Blumenfeld. “We are working basically out of common sense and little bits of information available from retrospective studies and questionnaires.”
He thinks there should be uniform global regulations concerning epilepsy and driving because under the current climate, “it’s very confusing for physicians, for patients and for the general public.”
“When there are accidents, everyone blames everyone else because nobody has agreement on what the guidelines or consensus should be.”
Robert Fisher, MD, PhD, professor of neurology and neurological sciences, and director, Comprehensive Epilepsy Center, Stanford University, California, wants patients with epilepsy to be treated justly when it comes to driving.
“We don’t want people with epilepsy to crash a car, but we don’t want them to be unfairly discriminated against either.”
Dr Fisher has published articles on driving and epilepsy and has been a defense witness in cases involving patients with epilepsy who have been in a motor vehicle accident.
He pointed out that in the United States, the accident rate for women with epilepsy is lower than for men without epilepsy, especially among drivers 18 to 25 years old.
“That doesn’t mean that epilepsy is not a risk factor; it just means that it really ought to be individualized,” he said.
While patients with uncontrolled seizures shouldn’t drive, those whose seizures have been controlled for a specific length of time “have a risk that’s lower than we are willing to accept for a number of conditions,” said Dr Fisher.
Driving is “one of the most discussed” topics in the epilepsy clinic and can contribute to significant stress in the doctor–patient relationship, he noted.
American Epilepsy Society (AES) 2016 Annual Meeting. Poster 2.276. Presented December 4, 2016.
[WEB SITE] CBD oil may reduce frequency and severity of seizures in patients with epilepsy, UAB study shows
Published on December 5, 2016
Cannabidiol oil, also known as CBD oil, reduces the frequency and severity of seizures in children and adults with severe, intractable epilepsy, according to findings presented by researchers from the University of Alabama at Birmingham at the American Epilepsy Society 70th Annual Meeting.
UAB researchers presented eleven abstracts, or research findings, at the meeting. A key finding was that CBD provided a significant reduction in frequency of seizures for a majority of the patients in the study, and that approximately two-thirds of patients saw a greater than 50 percent reduction in severity.
“It is encouraging that both frequency and severity of seizures appear to improve in the majority of patients in our study, patients who have limited treatment options,” said Jerzy P. Szaflarski, M.D., Ph.D., professor in the Department of Neurology and director of the UAB Epilepsy Center. “Our research adds to the evidence that CBD may reduce frequency of seizures, but we also found that it appears to decrease the severity of seizures, which is a new finding.”
The results were based on an open-label study of 81 patients — 42 children and 39 adults — who experienced four or more seizures per month. UAB launched the studies of CBD oil as a treatment for severe, intractable seizures in April 2015. The studies, an adult study at UAB and a pediatric study at Children’s of Alabama, were authorized by the Alabama Legislature in 2014 by legislation known as Carly’s Law.
After one month of beginning CBD therapy, 68 percent of the patients had experienced a greater than 25 percent reduction in seizure frequency; 58 percent had a greater than 50 percent reduction; 36 percent had a greater than 75 percent reduction and 9 percent were seizure-free. Those results were maintained at three and six months.
To assess seizure severity, researchers led by Jenifer DeWolfe, M.D., associate professor of neurology, used the Chalfont Seizure Severity Scale, a questionnaire given prior to therapy and re-administered at intervals throughout treatment. Fifty-seven patients were followed for three months: 67 percent experienced a more than 50 percent decrease in seizure severity, while 33 percent did not. Of 47 patients followed for six months, 64 percent had a greater than 50 percent decrease in seizure severity and 36 percent did not.
“These are encouraging results, but it is important to note that each patient may respond differently to CBD, and the dose for optimal seizures control varies,” said Martina Bebin, M.D., professor of neurology and co-primary investigator of the CBD studies. “There appears to be an optimal CBD dose range where the patient achieves maximum benefit. If outside this CBD dosing range, the seizure frequency may not improve and may even increase. More research is needed, including determining why and how CBD helps some people with epilepsy but not others.”
Among the other UAB abstracts presented at the AES meetings:
•CBD oil was associated with an improvement in mood, an effect independent of the extent of seizure reduction. Lead author Pongkiat Kankirawatana, M.D., professor of pediatrics, says CBD oil may have overall positive effects on mood, which should be further investigated in patients with epilepsy and other chronic conditions in controlled studies.
•A study led by Szaflarski and Bebin found that the optimum dose in both children and adults was between 20 and 25 mg/kg/day.
•Jane Allendorfer, M.D., assistant professor of neurology, found that CBD, in a selected group of patients with epilepsy who experienced overall improved seizure control, has the potential for positive cognitive effects that are associated with corresponding fMRI signal changes.
•One abstract reports on an interaction between warfarin, a drug used as an anticoagulant, and CBD. This underscores the importance of monitoring appropriate laboratory work in patients receiving CBD oil along with other medications, according to study lead Brannon Vines, M.D., a clinical neurophysiology fellow.
•Significant drug interactions were identified between CBD and commonly-used medications for epilepsy, including clobazam, rufinamide, topiramiate, zonisamide and eslicarbazepine. This study, led by neurology fellow Tyler Gaston, M.D., emphasizes the importance of monitoring anti-epilepsy drug levels during treatment with CBD.
•Electrical discharges measured by EEG decreased significantly after initiation and maintenance of CBD, particularly in pediatric patients, according to a study led by Leslie Grayson, M.D., a neurology fellow.
•Using fMRI imaging, Amber Gregory, a graduate student in psychology, showed that persons with epilepsy showed gains in working memory that were associated with a shift in neural recruitment as examined with functional MRI.
•An abstract aimed at examining associations between social determinants of health, such as age, gender and socioeconomic factors against health status, quality of life and mood states showed that higher age and low income were associated with lower health ratings among epilepsy patients, according to study led Magdalena Szaflarski, Ph.D., assistant professor of sociology.
The studies are designed to test the safety and tolerability of CBD oil in patients with intractable seizures. CBD oil, a derivative of the cannabis plant, is delivered orally as an oily liquid.
The oil used in the studies is produced under stringent requirements of the United States Food and Drug Administration by a licensed pharmaceutical company. It contains only traces of THC, the psychoactive component of marijuana. The process developed by GW Pharmaceuticals guarantees the consistency of the product that is provided to study participants.
University of Alabama at Birmingham