Archive for category Epilepsy
[BLOG POST] Anti-epilepsy medicine use during pregnancy does not harm overall health of children, study finds
Children whose mothers have taken anti-epilepsy medicine during pregnancy, do not visit the doctor more often than children who have not been exposed to this medicine in utero. This is the result of a new study from Aarhus.
Previous studies have shown that anti-epilepsy medicine may lead to congenital malformations in the foetus and that the use of anti-epilepsy medicine during pregnancy affects the development of the brain among the children. There is still a lack of knowledge in the area about the general health of children who are exposed to anti-epilepsy medicine in foetallife. But this new study is generally reassuring for women who need to take anti-epilepsy medicine during their pregnancy.
Being born to a mother who has taken anti-epilepsy medicine during pregnancy appears not to harm the child’s health. These are the findings of the first Danish study of the correlation between anti-epilepsy medicine and the general health of the child which has been carried out by the Research Unit for General Practice, Aarhus University and Aarhus University Hospital.
The results have just been published in the international scientific journal BMJ Open.
The researchers have looked into whether children who have been exposed to the mother’s anti-epilepsy medicine have contact with their general practitioner (GP) more often than other children – and there are no significant differences.
No reason til worry
“Our results are generally reassuring for women who need to take anti-epilepsy medicine during their pregnancy, including women with epilepsy,” says Anne Mette Lund Würtz, who is one of the researchers behind the project.
The difference in the number of contacts to the general practitioner between exposed and non-exposed children is only three per cent.
“The small difference we found in the number of contacts is primarily due to a difference in the number of telephone contacts and not to actual visits to the GP. At the same time, we cannot rule out that the difference in the number of contacts is caused by a small group of children who have more frequent contact with their GP because of illness,” explains Anne Mette Lund Würtz.
Of the 963,010 children born between 1997 and 2012, who were included in the survey, anti-epilepsy medicine was used in 4,478 of the pregnancies that were studied.
Anti-epilepsy medicine is also used for the treatment of other diseases such as migraine and bipolar disorder. The study shows that there were no differences relating to whether the women who used anti-epilepsy medicine during pregnancy were diagnosed with epilepsy or not.
Background for the results
Type of study: The population study was carried out using the Danish registers for the period 1997-2013.
The analyses takes into account differences in the child’s gender and date of birth, as well as the mother’s age, family situation, income, level of education, as well as any mental illness, use of psychiatric medicine and insulin, and substance abuse.
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.
Post-stroke epilepsy (PSE) is a major complication after stroke.
It is unclear which treatments are most effective in the prevention of recurrence of symptoms, or whether such therapy is needed for primary prevention.
The current understanding of epidemiology, diagnoses, mechanisms, risk factors, and treatments of PSE are covered in this review.
Post-stroke epilepsy (PSE) is a common complication after stroke, yet treatment options remain limited. While many physicians prescribe antiepileptic drugs (AED) for secondary prevention of PSE, it is unclear which treatments are most effective in the prevention of recurrence of symptoms, or whether such therapy is needed for primary prevention. This review discusses the current understanding of epidemiology, diagnoses, mechanisms, risk factors, and treatments of PSE.
Source: Post-stroke epilepsy
People with epilepsy resort to cannabis products when antiepileptic drug side-effects are intolerable and epilepsy uncontrolled.
The first Australian nationwide survey on the experiences and opinions of medicinal cannabis use in people with epilepsy has revealed that 14 per cent of people with epilepsy have used cannabis products as a way to manage seizures.
The study showed that of those with a history of cannabis product use, 90 per cent of adults and 71 per cent of parents of children with epilepsy reported success in managing seizures after commencing using cannabis products.
Published in Epilepsy & Behaviour, the Epilepsy Action Australia study, in partnership with The Lambert Initiative at the University of Sydney, surveyed 976 respondents to examine cannabis use in people with epilepsy, reasons for use, and any perceived benefits self-reported by consumers (or their carers).
The survey revealed:
- 15 per cent of adults with epilepsy and 13 per cent of parents/guardians of children with epilepsy were currently using, or had previously used, cannabis products to treat epilepsy.
- Across all respondents, the main reasons for trying cannabis products were to manage treatment-resistant epilepsy and to obtain a more favourable side-effect profile compared to standard antiepileptic drugs.
The number of past antiepileptic drugs was a significant predictor of medicinal cannabis use in both adults and children with epilepsy.
“This survey provides insight into the use of cannabis products for epilepsy, in particular some of the likely factors influencing use, as well as novel insights into the experiences of and attitudes towards medicinal cannabis in people with epilepsy in the Australian community,” said lead author Anastasia Suraev from The Lambert Initiative.
“Despite the limitations of a retrospective online survey, we cannot ignore that a significant proportion of adults and children with epilepsy are using cannabis-based products in Australia, and many are self-reporting considerable benefits to their condition.
“More systematic clinical studies are urgently needed to help us better understand the role of cannabinoids in epilepsy,” she said.
Co-author of the paper Carol Ireland, CEO of Epilepsy Action Australia, who was recently appointed to the Australian Government’s new Australian Advisory Council on the Medicinal Use of Cannabis, said: “Cannabis products are often what people turn to when they have been unable to control their epilepsy with conventional medication.”
“This highlights a growing need to educate consumers and health professionals on the use of cannabis by people with epilepsy, and to provide safe and timely access to cannabinoid medicine in order to lessen people’s reliance on illicit black market products” she said.
[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!
I remember the very first time that someone spoke the words, “Everything will be okay!” speaking about my epilepsy. Fire engulfed my stomach. When a family member spoke this to me, I knew they meant well, however, I wanted to curl into a ball and cry until I had no strength left in me. The way it looked, it didn’t look okay in that very moment.
I didn’t hold anything against them. Of course not. They meant well. Men, women and children are being diagnosed with epilepsy in The United States every single day and around the world. Medicines and treatments are being created all the time. Those battling epilepsy doing everything in their power to live as normally and healthy as possible. Meeting with family and friends in social situations.
It’s hard to know what to say or how to react to the news that someone you care about has a life-threatening medical condition with compassion. There really is no perfect handbook for this kind of situation, and I have experienced quite a few blunders.
Below, I’ve put together my list of Things To Never Do or Say When Someone Tells You They Have Epilepsy:
- Don’t raise an eyebrow and ask, “Is it contagious?”
- Don’t all of a sudden stop answering calls and texts
- Don’t start whispering or lowering your voice to ask any questions you may have about epilepsy.
- Don’t say “That’s sad!” and that’s it. This does not help.
- Don’t dismiss their epilepsy off as “No big deal.”
- Don’t ask if their condition came from something that the person did.
- Don’t say, “I know how you feel.” Unless you’ve been treated for the same type of condition and have undergone exactly the same treatment, you really don’t know how the person feels.
- Don’t say “Just be grateful you don’t have (Insert another medical condition)” No matter what medical condition you have, its a life-altering-condition. Epilepsy can in fact be life threatening. You don’t need to be reminded that things can always be worse. Comparing medical conditions is not helpful.
- Don’t say nothing. When a friend reaches out it makes the person feel wanted and needed. A lot of people are afraid and don’t know what to say, but simply not saying anything can make a person feel isolated and alone. It’s better off saying something rather than nothing.
- Don’t treat the person any differently. Treat them just as you’ve always known them your entire relationship. They will notice a difference. They want to be treated with the same amount of respect, dignity, and compassion. Just because a medical condition has entered the picture doesn’t mean an alteration of relationship needs to occur.
- Don’t do more for the the person than they are comfortable having others do. Being treated like child or invalid when they are not can be degrading. Independence is very important to a person.
All the reactions listed above, are ones that I have encountered at least once before. Yes, they have knocked me back a step or two, even hurt me a little, over time though I’ve grown a thicker skin and even allowed myself to smile and laugh a bit on the inside.
Thankfully, for each of these responses, there is a greater or an even more powerful response! Take a look at my tips for
What To Do When Someone Reveals They Have Epilepsy:
- Tell them, “I’m not sure what to say, but I want you to know that I care.”
- Assure them, “If you would like to talk about it, I’m here.”
- Assure them, “Please let me know if there is anything that I can do to help.”
- Offer interest in understanding what the person is going through. However, understand that the person may not want to talk about it right away.
- Bring humor into the picture if it appears to be the right moment for it. Humor can change moods and even lighten the load. This can help the person and even the family to connect to things outside of epilepsy. Find a way to bring happiness and joy into that persons life.
- Offer to help them with things they may need such as running errands, going to the doctor, preparing a meal, picking up prescriptions etc. Be as specific as possible. Try to steer clear of “Call me if you need anything.”
- Allow there to be room for normal non-epilepsy talk in a day. Sometimes a person can feel as though their entire lives are consumed by their condition. When that is the case, it feels great to have distraction. Take notice from the person how much they do and do not want to talk about epilepsy.
Epilepsy fighters, family, and friends are all in the journey together. We who are diagnosed, know that family and friends have the best intentions. Words don’t always come out like one might hope when stress, fear, worry, all kinds of emotions are running rampant. However, it is communication that is extremely helpful and that is what matters the most. That the lines of communication always remain open. It’s very helpful to be open and to communicate that you would like to be there and you want to do what you can to help.
I encourage epilepsy fighters, family and friends to take a look at both of the lists together and use these lists as a learning opportunity to think about what might be helpful and how this can offer support. It is my hope to make the epilepsy journey a little less stressful and exhausting.
Harrison Ford has played a hero in the movies, but in real life, he gives that distinction to his 26-year-old daughter, Georgia. Earlier this month, the actor revealed that Georgia has epilepsy, and that it took years for her to get the proper treatment. “I admire her perseverance, her talent, her strength,” he told the Daily News.Epilepsy isn’t always easy to identify. The disorder typically isn’t diagnosed until a person has had two or more “unprovoked” seizures—that is, seizures that don’t have a clear trigger, explains Vikram Rao, MD, PhD, an assistant professor of neurology at the University of California, San Francisco.It turns out there are multiple things that can trigger a seizure, which is essentially a surge of electrical activity in the brain. And just because you have one, that doesn’t mean you’ve got epilepsy. But you should always get checked out by a doctor afterwards, says Dr. Rao.Here, six things that are known to trigger seizures even in people who don’t have a neurological condition—and what to do when a seizure strikes.
Seizures triggered by stress look similar to epileptic seizures, mainly because they can have the same symptoms—numbness, confusion, convulsions, and more. But there are differences in the brain electrical activity between the two types. In fact, research suggests that somewhere between 5% and 20% of people with epilepsy may be misdiagnosed and, in fact, suffering from seizures provoked by anxiety or underlying trauma.RELATED: 25 Surprising Ways Stress Affects Your Health
Low blood sugar
Your brain is a huge consumer of glucose, says Dr. Rao. When your blood sugar levels drop too low—a state called hypoglycemia—your brain has trouble functioning normally and the result could be a seizure. Since hypoglycemia is a potential a side effect of diabetes medications, diabetics may be at a higher risk for this type of seizure.
You already know that playing soccer for hours on a scorching-hot day can be dangerous. In that kind of heat (and under that kind of exertion), people can have trouble cooling themselves down. Once your internal thermostat reaches about 104 degrees Fahrenheit, you risk damaging your organs, including your brain: “The brain doesn’t function as well at higher temperatures,” says Dr. Rao. Once heat illness sets in, the brain can misfire, possibly triggering a seizure.
An estimated 2 million people may experience alcohol withdrawalevery year, according to a 2004 study in the journal American Family Physician. People can develop a tolerance to (or dependence on) alcohol, and the wiring in their brains can reflect that. So when some people quit cold turkey, it leaves their brains in a new, altered state that can set them up for a seizure, usually within 48 hours after their last drink, says Dr. Rao.
Antidepressants like bupropion (a.k.a. Wellbutrin and Zyban) have been associated with seizures in certain studies. And some antibiotics, like penicillins and quinolones, and pain medications like tramadol (sold under the brand name Ultram) might increase the risk of seizures too.
Too-little sleep is a powerful trigger for seizures, says Dr. Rao. (He’s seen seizures in college students who’ve stayed up for days in a row cramming for an exam.) “No one knows the exact reason behind this,” says Dr. Rao, “but sleep is restorative. We spend one-third of our lives sleeping, so we know it’s important.”RELATED: 30 Sleep Hacks for Your Most Restful Night Ever
What to do if someone has a seizure
Oftentimes, less is more. Rule number one: Keep the person safe. That means making sure she doesn’t accidentally hurt herself, either on a nearby sharp object or by falling down the stairs.As Anto Bagić, MD, PhD, the chief of the epilepsy division at the University of Pittsburgh Medical Center puts it: “There’s no ‘heroic’ measure necessary.” Don’t try to restrain the person (she might panic and lash out even more aggressively) and do not put anything in her mouth (she might choke on it). Besides, it’s a myth that people can swallow their tongue during a seizure.Either give her some space or, if necessary, guide her to a safer area, Dr. Bagić explains. If she’s lying on the floor, gently turn her on her side so that her saliva doesn’t block her airway.Most seizures resolve themselves within five minutes, so if it goes on for longer than that, you should call 911, says Dr. Bagić. More often, however, the person will regain consciousness after a few minutes—and when she does, stay calm.“When people are coming back [from a seizure], that’s when they’re at their most vulnerable,” says Dr. Bagić. “It can be scary if the first thing they see is people staring at them or panicking.”Another key point: Stay with the person until you’re sure that she’s completely recovered. Do all that, and it’ll be heroic enough.
[WEB PAGE] SLATE clinical trial uses Medtronic Visualase MRI-guided laser ablation system to treat common form of epilepsy
Medtronic plc (NYSE: MDT) announced today that the first procedure using the Visualase(TM) MRI-Guided Laser Ablation System has been performed in the pivotal SLATE (Stereotactic Laser Ablation for Temporal Lobe Epilepsy) clinical trial at Mayo Clinic in Rochester, Minn. The SLATE clinical trial is designed to support the expanded indication of the currently marketed Visualase(TM) system for treatment of patients with drug-resistant mesial temporal lobe epilepsy (MTLE), the most common form of partial or localization-related epilepsy.
Approximately three million people in the United States have epilepsy, with MTLE being the most common form of partial or localization related epilepsy. It is estimated that at least one-third of MTLE patients become drug resistant, continuing to have seizures regardless of the number or type of anti-epileptic drugs used.
“The data collected in this study will allow a comprehensive evaluation of the risks and benefits of the device in this new indication, ensuring that treating physicians are well-informed about its use,” said Co-Principal Investigator Robert Gross, M.D., Ph.D. MBNA/Bowman professor of Neurosurgery and director, Functional, Stereotactic & Epilepsy Surgery Division at Emory University, Atlanta, Ga.
During the clinical trial, approximately 120 adult patients with drug-resistant MTLE will be treated at selected epilepsy centers across the United States. Emory University, Mayo Clinic, Northwell Health, Thomas Jefferson University Hospital, and University of Miami Health System are some of the institutions that will be enrolling patients in the clinical trial. After the Visualase procedure, subjects will be followed for 12 months and evaluated for freedom from seizures, quality of life, adverse events and neuropsychological outcomes. Additional information about the SLATE study and sites enrolling can be found at https://clinicaltrials.gov/ct2/show/NCT02844465.
“The SLATE study is an example of Medtronic’s commitment to conduct rigorous clinical research in partnership with physicians and providers. Such collaborations offer the opportunity to better serve patients through the development and analysis of new technologies and indications,” said Brett Wall, senior vice president and president of Medtronic’s Brain Therapies division, which is part of the Restorative Therapies Group. “A study such as SLATE offers the opportunity to gather clinical evidence that can help us transform the way epilepsy is treated.”
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!