Posts Tagged seizures

[BLOG POST] Is the weather a risk factor for epileptic seizures? 

 

Weather as a risk factor for epileptic seizures: a case-crossover study.

Rakers F, Walther M, Schiffner R, et al.

Epilepsia 2017; doi: 10.1111/epi.13776 (Epub ahead of print).

Abstract

OBJECTIVE:

Most epileptic seizures occur unexpectedly and independently of known risk factors. We aimed to evaluate the clinical significance of patients’ perception that weather is a risk factor for epileptic seizures.

METHODS:

Using a hospital-based, bidirectional case-crossover study, 604 adult patients admitted to a large university hospital in Central Germany for an unprovoked epileptic seizure between 2003 and 2010 were recruited. The effect of atmospheric pressure, relative air humidity, and ambient temperature on the onset of epileptic seizures under temperate climate conditions was estimated.

RESULTS:

We found a close-to-linear negative correlation between atmospheric pressure and seizure risk. For every 10.7 hPa lower atmospheric pressure, seizure risk increased in the entire study population by 14% (odds ratio [OR] 1.14, 95% confidence interval [CI] 1.01-1.28). In patients with less severe epilepsy treated with one antiepileptic medication, seizure risk increased by 36% (1.36, 1.09-1.67). A high relative air humidity of >80% increased seizure risk in the entire study population by up to 48% (OR 1.48, 95% CI 1.11-1.96) 3 days after exposure in a J-shaped association. High ambient temperatures of >20°C decreased seizure risk by 46% in the overall study population (OR 0.54, 95% CI 0.32-0.90) and in subgroups, with the greatest effects observed in male patients (OR 0.33, 95% CI 0.14-0.74).

SIGNIFICANCE:

Low atmospheric pressure and high relative air humidity are associated with an increased risk for epileptic seizures, whereas high ambient temperatures seem to decrease seizure risk. Weather-dependent seizure risk may be accentuated in patients with less severe epilepsy. Our results require further replication across different climate regions and cohorts before reliable clinical recommendations can be made.

This reference is included in the neurochecklist:

Medical causes of seizures

Source: Is the weather a risk factor for epileptic seizures? – Neurochecklists Updates

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[WEB SITE] #DareTo Go the Distance in Your Journey with Epilepsy – Epilepsy Foundation

While each person with seizures and epilepsy is different, many of the steps along the journey toward a life with no seizures and no side effects are similar.

Depending on the type of epilepsy, other neurological problems, and other factors, some people may find it hard to get complete seizure freedom. But DO NOT STOP TRYING!

We are constantly learning more about how to better diagnose, treat, predict, prevent, and care for seizures and epilepsy. And ultimately, with your help, we will find a cure.

The Journey Toward Seizure Control:

  1. When a Seizure is Suspected
  2. Creating Your Health Care Team
  3. At the Beginning of Your Treatment Journey
  4. When Seizures Persist or Side Effects are a Problem
  5. Managing Your Epilepsy
  6. Finding Help and Support

#DareTo Go the Distance

Wherever you are in your journey, we encourage you to explore all of these steps.

  • If you are still having seizures but consider them a “manageable” part of your life, don’t stop there. Don’t settle for continued seizures!
  • Find out if other tests are needed to check your diagnosis.
  • Ask about new treatment options. If the first 2 or 3 medicines haven’t worked, ask to see an epilepsy specialist, called an epileptologist (this is a neurologist who specializes in epilepsy).
  • If you have been or currently are being seen at an epilepsy center, ask for a progress report from your team.
    • Are there new options or research trials to consider?
    • If seizures have changed, does testing need to be updated?
    • What else can you do to improve your life and health?

Video Moderator: Patty Osborne Shafer RN, MN, is an epilepsy clinical nurse specialist at the Comprehensive Epilepsy Center, Beth Israel Deaconess Medical Center in Boston, and the associate editor and community manager of epilepsy.com.

Speakers:

  • Nathan Fountain MD is a professor of neurology and director of the Comprehensive Epilepsy Program at the University of Virginia and chair of the Epilepsy Foundation’s Professional Advisory Board
  • Sandra Dewar RN, MS, is a clinical nurse specialist at the Seizure Disorders Center at University of California in Los Angeles.

Ask questions. Become an active advocate for your health care.

  • Enlist the help of your family, friends, and your entire medical team.
  • Add to your medical team by seeing an epileptologist.
  • Look at how epilepsy is affecting your health and daily life. If other problems are present, ask to see other members of the epilepsy team.
  • Consider if you are taking all the steps you can to manage your seizures and the side effects of the medications. What can you do to help?
  • Ask for help.
Authored by: Patricia O. Shafer, RN, MN | Associate Editor / Community Manager on 11/2015
Reviewed by: Joseph I. Sirven, MD | Editor-in-Chief

Source: #DareTo Go the Distance in Your Journey with Epilepsy | Epilepsy Foundation

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[WEB SITE] Stress and Epilepsy – Epilepsy Foundation

 

  • Seizures and epilepsy affect all ages. While they tend to occur for the first time in young children or older adults, each age group has unique concerns and problems.
  • We aren’t sure just why stress may trigger a seizure.
  • While there is no definite evidence that reducing stress help seizures, a recent study showed that nearly 9 in 10 people who actively managed their stress believed it reduced their risk of seizures.
  • Try to avoid stressful situations if it makes sense to do so, and if you can avoid it.

Stress is one of the most common seizure triggers for people with epilepsy.

 

How often does stress trigger seizures?

It’s hard to know exactly how often stress triggers seizures, since stress means something different to everyone. It’s also hard to judge how much of an effect stress has on a person.

Stress comes in different forms and has a different meaning for everyone. It can come from a major life event or from more everyday activities that can potentially put us in a bad mood. Some studies have found that major life stressors, either good or bad, could affect seizures. Others have found that a build up of ‘daily hassles’ or stress seems to be more important. Since people are very different, it’s likely that stress can affect people in different ways at different times of their life.

VIDEO: Dr. Michael Privitera, MD talks about the relationship of stress and epilepsy, and an innovative new study to explore how stress reduction may also reduce seizures. 

How does stress trigger seizures?

We aren’t sure just why stress may trigger a seizure. Stress is an expected and unavoidable part of life. It is our body’s reaction to any change that requires a physical and emotional response. Stress is known to cause worry, depression, frustration and even anger. Stress may affect people in many ways. Consider the following:

  • Stress makes or releases certain hormones related to the nervous system that can impact the brain.
  • Areas of the brain important for some types of seizures, for example partial seizures, are the same areas of the brain involved in emotions and responding to stress.
  • Stress can cause problems sleeping which is also a seizure trigger.
  • Chronic stress can lead to anxiety or depression. Sleep problems are symptoms of these mood problems. Being anxious and depressed can also worsen stress, causing a vicious cycle with more seizures and mood problems.

What can I do to manage stress and prevent seizures?

While there is no definite evidence that reducing stress help seizures, a recent study showed that nearly 9 in 10 people who actively managed their stress believed it reduced their risk of seizures. Common sense tells us that if something is bothering you, see what you can do to avoid it or make it better.

Managing stress is very personal and specific to your situation; however, there are some universal activities and recommendations.

  • Use a diary and write down what’s likely to cause stress for you.
  • Try to avoid stressful situations if it makes sense to do so, and if you can avoid it! If you can’t avoid it, can you let go of the worry it’s causing you?
  • When a stressful situation is unavoidable, make sure you are doing your best to get enough sleep and take your seizure medications on time.
  • Find ways to diffuse a situation. Avoid people who cause anger and anxiety if you can. Try to approach them differently – it may help calm down the stressful situation.
  • Exercise regularly. Lots of research has shown the exercise helps lower stress.
  • Do your best to relax. Try exercise, yoga, tai chi, Pilates, a massage, cat naps, or relaxation and controlled breathing techniques.
  • Limit long naps during the day. Sleeping during the day will cause sleep problems at night and make people feel worse.
  • Keep to a daily routine. Pace yourself and take frequent breaks.
  • Set priorities for what is important in your life and let the rest go.
  • Seek help. Talk to your doctor, nurse, or counselor. Let them know what’s bothering you.
    • Make sure the epilepsy team knows that stress is affecting your seizures.
    • Seek counseling or psychotherapy. If you think you may have anxiety or depression, talk to you doctor about treatment options.
    • Join a support group or online support community. Reach out to the Epilepsy Foundation affiliate near you.
Authored by: Michael Privitera, MD | Sheryl Haut, MD | Patricia O. Shafer, RN, MN | Joseph I. Sirven, MD on 7/2013
Reviewed by: Joseph I. Sirven, MD | Patricia O. Shafer, RN, MN on 3/2014

Source: Stress and Epilepsy | Epilepsy Foundation

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[WEB SITE] Epilepsy and natural treatments: Can they help?

 

Epilepsy is a disease that disrupts the electrical activity of the nervous system, causing seizures.

More than 65 million people in the world have epilepsy. The Epilepsy Foundation estimate that 1 in 26 Americans will develop the disease during their lives.

Children are the group most frequently diagnosed with new cases of epilepsy. In the United States, 300,000 children under 14 are affected by the condition. Some may outgrow the disorder, but most will not. The number of senior citizens with epilepsy is also 300,000.

People with epilepsy have a range of treatment options, including alternative therapies.

The illness is a complex condition, however, and all alternative treatment options must be looked at carefully, to ensure they are effective.

It is essential to work with a doctor when making changes in treatment, as every epileptic seizure can cause brain damage, and the effects build up. So, any treatment must work to avoid seizures.

Causes of epilepsy

electrical activity in the brain diagram

Epilepsy is a complex disease that can disrupt the electrical activity of the nervous system.

Infections, which can cause scarring on the brain that leads to seizures, are among the more common causes of epilepsy.

Possible links between autism and epilepsy are also under investigation, as a third of children on the autism spectrum are also likely to have seizures.

In the over 65s, strokes are the most common cause of new seizures. Family history and brain injuries account for other cases.

However, the Epilepsy Foundation say the cause is unknown in 60 percent of people.

Eight natural remedies for epilepsy

People with epilepsy and their doctors are expressing growing interest in alternative therapies.

Although antiepileptic drugs (AEDs) help most people control their symptoms, these do not work for everyone. Furthermore, some people are concerned about the long-term safety of these drugs.

Complementary health practices for epilepsy, such as the eight natural remedies discussed here, are designed for use in combination with AEDs.

After talking to a doctor, and before beginning natural treatments, people with epilepsy should ensure they are working with a well-qualified and informed therapist.

Common complementary treatments for epilepsy include the following:

Medical marijuana

Cannabis sativa, or marijuana, as it is commonly known, has been used to treat convulsions for centuries. Today, it is attracting increasing attention from people with epilepsy, clinicians, and researchers.

Interest in the use of medical marijuana is particularly strong for the roughly 1 million U.S. residents whose seizures are not controlled by AEDs. Some families with young children, suffering from severe seizures, have moved to one of the 22 states where medical marijuana use is legal.

Charlotte’s Web is a strain of cannabis bred to contain high levels of CBD, a part of the plant showing promise against seizures. It is named after a child whose convulsions dropped from more than 300 a week to 2-3 a month with this treatment.

However, since broad-based, well-designed scientific studies have yet to prove the effectiveness of marijuana in treating epilepsy, doctors do not generally recommend its use.

Diet

The ketogenic diet

The ketogenic diet is a low-carbohydrate, high-fat diet that may help to reduce seizures.

Diet is one of the earliest forms of treatment for epilepsy and is used with contemporary variations to make it easier for children and adults to adopt.

The ketogenic diet is a high-fat, low-carbohydrate diet that has had some success in reducing seizures in children who cannot tolerate or benefit from AEDs. It requires extensive commitment and monitoring.

The Atkins diet is a high-protein, low-carbohydrate diet that is less restrictive and has shown positive effects.

Low glycemic index treatment (LGIT) is similar but allows for a targeted level of carbohydrate consumption.

Herbal treatments

Herbs are used for many illnesses by 80 percent of the world’s population. Remedies drawing on Chinese traditions have shown promise in treating epilepsy.

Some herbs, such as chamomile, passionflower, and valerian, may make AEDs more effective and calming.

However, ginkgo, ginseng, and stimulating herbs containing caffeine and ephedrine can make seizures worse.

St. John’s wort can interfere with medications and make seizures more likely, similarly to evening primrose and borage.

Caution is advised when working with all these herbs.

It is important to remember that herbs are not monitored by the U.S. Food and Drug Administration (FDA). If any herbs are used, they should be researched and bought from reputable sources.

Vitamins

Low levels of the B6 vitamin have been known to trigger seizures.

Magnesium, vitamin E, and other vitamins and nutritional supplements, have been identified as either promising or problematic for treating epilepsy.

People taking AEDs are often advised to take vitamin D supplements to keep their systems in balance.

Along with vitamin B6, magnesium, and vitamin E, which have been found to be helpful in treating epilepsy, doctors have found treatment with manganese and taurine reduced seizures, as well.

Thiamine may help improve the ability to think in people with epilepsy.

Biofeedback

When AEDs do not work, some people have successfully used biofeedback to reduce seizures.

With the use of extensive training and a machine that detects electrical activity in the brain, the technique teaches individuals to recognize the warning signs of seizures, and train their brains to prevent a full-blown attack.

Relaxation

Stress and anxiety are both linked to seizures.

There are many different practices that people with epilepsy can follow on their own to help them feel calmer, relax their muscles, get better sleep, and enjoy a better state of mind.

All these actions taken together can help reduce seizures and make it easier for people to manage their epilepsy.

People should be cautious if trying meditation, as this can change the electrical signals in the brain.

Some essential oils used in aromatherapy, such as lavender, chamomile, jasmine, and ylang-ylang, have been found to be effective in preventing seizures when used with relaxation techniques.

However, the Epilepsy Society report that others may provoke seizures. These include spike lavender, eucalyptus, camphor, sage, rosemary, hyssop, and fennel.

Acupuncture and chiropractic

acupuncture

Acupuncture may help to reduce the stress of living with epilepsy.

While acupuncture does not seem to be helpful in preventing seizures, people with epilepsy find it can reduce the stress of living with the condition.

There is little evidence on chiropractic care, but it also may be among the natural treatments people with epilepsy find useful.

Education and avoiding triggers

Education and avoidance can have a big impact on quality of life for people with this condition.

Many of those with epilepsy find that their seizures develop in response to specific triggers. This is the case for people with photosensitive epilepsy.

Learning how to avoid situations and stimuli that could spark a seizure can be very helpful. Some children may learn to avoid using video games in dark rooms, for example, or to cover one eye when exposed to flashing lights.

Do natural treatments for epilepsy work?

For many practices, there has not been enough study to give a definite answer to this question, one way or the other.

The following overview of the top natural treatments for epilepsy offers a quick summary of their reported effectiveness:

  • Diet: The ketogenic diet, usually prescribed for children whose epilepsy does not respond to AEDs, has been shown to cut their seizures by half and eliminate seizures completely for 10-15 percent of those studied.
  • Herbal treatments: Two studies of Chinese herbal compounds found them effective at reducing seizures in children and adults. But some herbs, such as St. John’s wort, can make seizures worse.
  • Vitamins: Many studies have linked low levels of vitamin B6, magnesium, and vitamin E to seizures. Treating people with supplemental doses helped reduce the frequency of seizures.
  • Biofeedback: Researchers in 10 different studies showed that 74 percent of people whose epilepsy could not be treated with medication, reported fewer seizures after they learned this technique.
  • Relaxation: Fewer seizures and a better quality of life were reported by children who took part in trials, according to research.
  • Acupuncture and chiropractic: Scientific studies have not found acupuncture to be effective for people with epilepsy. However, positive outcomes were reported for some children with drug-resistant epilepsy who tried chiropractic therapy.
  • Education: After learning more about epilepsy, coping strategies for it, and how to take medication, improved quality of life was observed for people of all ages with epilepsy.

Conclusion

Many reports on the effectiveness of complementary treatments for epilepsy come from personal experience, and from studies that are not considered conclusive.

Most importantly, people should always talk to their doctor before trying natural treatments to help ease their symptoms.

Source: Epilepsy and natural treatments: Can they help? – Medical News Today

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[WEB SITE] The Relationship Between Seizures and Strokes – Saebo

 

Strokes can damage the brain in many ways, and these negative effects take different forms depending on the person and their stroke. But in general, strokes can influence emotionsmobilityverbal communication, behavior, and memory. One problem caused by stroke that’s harder to notice is the increased risk of seizures.

Seizures are actually more common after stroke than you might have guessed. Statistics show that seizures afflict 22 percent of people who suffer from strokes. They are important to watch out for as they indicate malfunctions in brain activity and cause an altered state of awareness for a stretch of time.

The information below gives you the essentials on the relationship between strokes and seizures so you are more prepared for what can happen in the aftermath of a stroke.

 

What Causes Seizures After Stroke?

Injuries leave their marks, and it’s the same case when strokes scar the brain. But unlike a scar on your skin, scarring in the brain leads to frightening effects—namely, changes to electrical activity within the brain. Normally, our brain cells communicate in an on-and-off pattern, but during a seizure, these cells emit bursts of energy, sometimes causing unintentional body movements, unusual sensations, and short periods of unconsciousness.

There are two different kinds of strokes: hemorrhagic and ischemic. Hemorrhagic strokes result from bleeding around or inside the brain, and ischemic strokes are caused by a blood clot or the absence of blood flow to the brain.

If you’ve suffered from hemorrhagic (bleeding) strokes, you’re much more likely to experience seizures post stroke than those who’ve suffered from an ischemic stroke. You’re also more likely to experience seizures if a stroke takes place in the cerebral cortex, the outer layer of tissue in the brain.

 

Epilepsy After Stroke

A stroke survivor might experience frequent seizures, which could indicate epilepsy. Epilepsy is diagnosed when seizures become regular and are not associated with a specific cause.

Experiencing a single seizure following a stroke does not necessarily mean a patient has epilepsy. It’s only when seizures become frequent that epilepsy will be diagnosed. Sometimes, when signs of a stroke are not clear, a seizure may be evidence that somebody has suffered a stroke in the past. This is most common in children and infants.

However, epilepsy is uncommon. It usually occurs in people who are still experiencing seizures a month or more after their stroke has occurred.

 

Recognizing the Signs of a Seizure

There are as many as forty different types of seizures known. Symptoms of seizures vary depending on the type of seizure you experience. A generalized seizure is the most common, and it tends to show these symptoms:

  • Trembling and shaking
  • Numb and prickling sensation
  • Unconsciousness
  • Muscle contractions and cramps
  • Change in emotions and behavior
  • Confusion and uncertainty
  • Loss or alteration of basic senses (smell, sound, sight, taste, or touch)
  • Incontinence
  • Loss of mobility

 

What to Do When Someone Has a Seizure

It’s very alarming to witness somebody having a seizure, but it’s important to keep them from being injured. Here’s what you can do:

  • Make sure the person is on their side to prevent any vomiting or choking. You can do this by rolling them to their side and/or cushioning their head.
  • If the person is wearing any clothing around their neck, loosen it to keep the airway open. You can also gently grab their jaw and tilt their head back to make sure they’re able to continue breathing.
  • Often, when people experience seizures, they may move or jerk uncontrollably. If this happens, do not restrict movement unless they are in immediate danger. It’s also important to remove sharp objects that they could hit during the seizure.
  • Never put anything, including liquid or medication, into the person’s mouth.
  • If you can, make a note of how long the seizure lasts and what symptoms were experienced. This way, you’ll be better able to inform a doctor or emergency responder.
  • Do not leave the person having a seizure alone. Stay with them until it ends, and seek treatment immediately.

 

Treating Post-Stroke Seizures and Epilepsy

If you just experienced one seizure that happens shortly after a stroke (a month or so later), then you will most likely not need treatment. You may be prescribed medication if you continue to experience seizures, however.

Sadly, there is no cure for epilepsy, but there are medications that can help to prevent seizures and will help you to live a normal life. Treatment will depend on what kind of seizure you experience, how many you have, other medications you may already be taking, and any other symptoms caused by your stroke.

Medications available for epilepsy are called anti-epileptic drugs (AEDs). These work by inhibiting the extreme bursts of energy in the brain that cause seizures in the first place. It’s important to remember that normal brain activity could be affected by these medications, causing lightheadedness, fatigue, confusion, and other symptoms. Once your body adjusts to the medication, these side effects may subside.

 

Help During Recovery

Remember that it’s common to experience seizures following a stroke. Strokes have many consequences, but there are a number of treatments available to help you through this difficult time. It’s always best to talk to your doctor to figure out a plan to manage your symptoms.

Source: The Relationship Between Seizures and Strokes | Saebo

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[WEB SITE] Epilepsy drug therapies to be improved by new targeted approach

Published: Wednesday 17 May 2017

New research from the University of Liverpool, in collaboration with the Mario Negri Institute in Milan, published in the Journal of Clinical Investigation, has identified a protein that could help patients with epilepsy respond more positively to drug therapies.

Epilepsy continues to be a serious health problem and is the most common serious neurological disease. Despite 30 years of drug development, approximately 30% of people with epilepsy do not become free of fits (also called seizures) with currently available drugs.

New, more effective drugs are therefore required for these individuals. We do not fully understand why some people develop seizures, why some go onto develop epilepsy (continuing seizures), and most importantly, why some patients cannot be controlled with current drugs.

Inflammation

There is now increasing body of evidence suggesting that local inflammation in the brain may be important in preventing control of seizures. Inflammation refers to the process by which the body reacts to insults such as having a fit. In most cases, the inflammation settles down, but in a small number of patients, the inflammation continues.

The aim of the research, undertaken by Dr Lauren Walker while she was a Medical Research Council (MRC) Clinical Training Fellow, was to address the important question of how can inflammation be detected by using blood samples, and whether this may provide us with new ways of treating patients in the future to reduce the inflammation and therefore improve seizure control.

The research focused on a protein called high mobility group box-1 (HMGB1), which exists in different forms in tissues and bloodstream (called isoforms), as it can provide a marker to gauge the level of inflammation present.

Predicting drug response

The results showed that there was a persistent increase in these isoforms in patients with newly-diagnosed epilepsy who had continuing seizure activity, despite anti-epileptic drug therapy, but not in those where the fits were controlled.

An accompanying drug study also found that HMGB1 isoforms may predict how an epilepsy patient’s seizures will respond to anti-inflammatory drugs.

Dr Lauren Walker, said: “Our data suggest that HMGB1 isoforms represent potential new drug targets, which could also identify which patients will respond to anti-inflammatory therapies. This will require evaluation in larger-scale prospective trials.”

Innovative scheme

Professor Sir Munir Pirmohamed, Director of the MRC Centre for Drug Safety Science and Programme lead for the MRC Clinical Pharmacology scheme, said: “The MRC Clinical Pharmacology scheme is a highly successful scheme to train “high flyers” who are likely to become future leaders in academia and industry.

“Dr Walker’s research is testament to this and shows how this innovative scheme, which was jointly funded by the MRC and Industry, can tackle areas of unmet clinical need, and identify new ways of treating patients with epilepsy using a personalised medicine approach”.

Article: Molecular isoforms of high-mobility group box 1 are mechanistic biomarkers for epilepsy, Lauren Elizabeth Walker et al., Journal of Clinical Investigation, doi: 10.1172/JCI92001, published 15 May 2017.

Source: Epilepsy drug therapies to be improved by new targeted approach – Medical News Today

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[WEB SITE] Epilepsy or Seizures & The Emotional Roller Coaster

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.

After a seizure or after an epilepsy diagnosis, emotions may arise for the individual and their family that are outside of what you might expect. This explains the roller coaster of emotions that followed my post-seizure experience and what caused the emotions to come up.

 

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.

Source: Epilepsy or Seizures & The Emotional Roller Coaster

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[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.”

Source: Novel statistical approach reveals details about brains’ internal networks in patients with epilepsy

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[WEB SITE] 2017 Revised Classification of Seizures – Epilepsy Foundation

Thursday, December 22, 2016

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

Background

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.

  1. Where seizures begin in the brain
  2. Level of awareness during a seizure
  3. 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.

Describing Awareness

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.
ILAE 2017 classification of seizure types basic version

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.

ILAE 2017 classification of seizure types expanded version

General Comments

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!
Authored by: Robert S. Fisher MD, PhD, Patricia O. Shafer RN, MN, and Carol D’Souza MA Psych on 12/2016
Reviewed by: Joseph I. Sirven MD on 12/2016

Source: 2017 Revised Classification of Seizures | Epilepsy Foundation

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[BLOG POST] 17 Things Everyone Should Know About Epilepsy

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.

Epilepsy is a brain disorder that causes seizures, which are basically like electric storms in your brain.

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.

Not everyone with epilepsy has convulsive, jerking seizures.

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.”

When someone's having a convulsive seizure, keep them safe, supported, and on their side.

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.”

NEVER force something into the mouth of someone having a seizure.

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.

Please remain with the person after they have a seizure to calm and reassure them.

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.

Seizures are scary!

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.

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.

Seizure “hangovers” are the absolute worst.

“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.

Seizures aren't just triggered by flashing lights.

“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.

 Seizures are symptoms of epilepsy, and you can have a seizure (or seizures) without being diagnosed with epilepsy. A diagnosis usually comes when someone has two unprovoked seizures (meaning it wasn’t caused by an injury, infection, drug or alcohol withdrawal, or other health condition) or one unprovoked seizure with the likelihood of more, says Sander.

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.”

Medications can control seizures in most people with epilepsy.

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.”

Even though there are risks associated with taking anti-seizure medication during pregnancy, for many it would be riskier to stop treatment.

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.

People with epilepsy can lead very active lives.

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.”

Driving is...complicated.

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.”

Epilepsy is probably more common than you think.

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.

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.

People with epilepsy are strong and resilient as hell.

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!

Source: 17 Things Everyone Should Know About Epilepsy – health care vision

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