Epilepsy: A Guide for Patients and Families - American Academy of Neurology

Summary

Epilepsy, a common neurological disorder affecting around 2 million people in the US, has many faces and challenges. However, with advances in medical treatment, people can lead normal lives by working closely with their healthcare team. This comprehensive guide, inspired by real stories from patients and insights from experts like actor and advocate John O'Hurley, highlights the importance of understanding epilepsy, recognizing seizure triggers, and the necessity for proper medication and support systems. Personal stories of struggle, treatment, and triumph illustrate the diverse treatment paths, from medication and surgery to lifestyle adjustments and the critical support from family and healthcare providers. Emphasizing the importance of dealing with the stigma and emotional challenges associated with epilepsy, this guide is a valuable resource for patients and families.

Highlights

• Epilepsy impacts around 2 million individuals in the US but is manageable with proper care 🌟.
• John O'Hurley's personal connection to epilepsy makes him a passionate advocate for awareness 📢.
• Recognizing seizure triggers and understanding available treatments are key to managing epilepsy effectively 🧠.
• Support systems play a vital role in helping individuals navigate life with epilepsy, from family to healthcare teams 👨‍👩‍👦‍👦.
• Dealing with stigma is an ongoing challenge, yet education and personal stories can foster understanding and empathy 💬.

Key Takeaways

• Epilepsy affects 2 million people in the US, but with the right treatment, life can continue normally 🌟.
• Patients and experts, like actor John O'Hurley, share personal stories to raise awareness and inspire hope 📖.
• Understanding seizures, treatment options, and potential triggers can empower patients and lead to better management 🎯.
• Support from family and a dedicated healthcare team is crucial in managing epilepsy ❤️.
• Stigma and misconceptions can be overcome with education and advocacy, leading to a more supportive environment 🌍.

Overview

Epilepsy is a significant chronic condition affecting millions worldwide, but it is often surrounded by myths and misconceptions. The truth is, with a proper understanding of the brain's functioning and the nature of seizures, those diagnosed with epilepsy can embark on a journey of hope and manageability. From understanding the types of seizures to identifying triggers, individuals can take crucial steps toward a better quality of life.

Real-life stories from patients reveal the personal challenges and triumphs faced when dealing with epilepsy. Actor John O'Hurley's advocacy, driven by his sister's experience, highlights the need for awareness and medical advancements. The importance of family support and a strong patient-doctor relationship remains a cornerstone of effective management.

Despite stigma and emotional battles, empowered patients are leading the charge toward better awareness and inclusion. Through education and open conversations, the landscape of epilepsy is changing for the better, with patients playing an active role in their health management and societal attitudes increasingly shifting towards understanding and acceptance.

Epilepsy: A Guide for Patients and Families - American Academy of Neurology Transcription

• 00:00 - 00:30 you you
• 00:30 - 01:00 I felt a jolt of energy go up my body and then I passed out and woke up in the ambulance stories like this are more common than you might think epilepsy affects some 2 million people in the United States it is a serious medical condition but by working with their doctors people with epilepsy can carry on with their lives to help you learn about managing epilepsy real
• 01:00 - 01:30 patients are sharing their stories I definitely don't think epilepsy has held me back at all you'll also hear from leading medical experts and actor John O'Hurley an advocate for epilepsy awareness and action and I think it's extremely important to know that you are not alone you are just one of the many many people who happens to have epilepsy
• 01:30 - 02:00 there are many reasons you might recognize John O'Hurley for years he has hosted the national dog show on Thanksgiving Day you might have seen him dance with the Stars or enjoyed his
• 02:00 - 02:30 recurring role on Seinfeld as Elaine's boss he's also a gifted composer and author and a motivational speaker I speak on the notion of the extraordinary life how to live your life extraordinarily one part of his own extraordinary life is raising awareness about epilepsy for John this cause is intensely personal I was exposed to
• 02:30 - 03:00 epilepsy through my sister at at a young age John lost his sister in 1970 when they were both teenagers a lot has changed since then to honor her memory he urges people to find out about all the treatment options available today become your own advocate learn as much as you possibly can about it the brain is amazing and complex the
• 03:00 - 03:30 control center of our bodies when the brains normal activity is disrupted however we can experience a seizure it's like an electrical storm in the brain and of course a seizure is essentially a symptom it's a symptom of the brain what some people call short circuiting while an injury high fever or disease can trigger an individual seizure epilepsy is an ongoing condition it consists of recurrent and unprovoked seizures
• 03:30 - 04:00 opposites and epilepsy can begin at any age from the very young to the very old we are actually moving away from any apples Tamra is an active young woman with a bright future at Emerson College in Boston she's already working as a broadcast journalist I get to work with the equipment behind the scenes and from the scenes and I really get to learn a lot about journalism on all standpoints she also competes in beauty pageants not only to
• 04:00 - 04:30 win titles and scholarships but to deliver a message as well I actually began pageantry because of epilepsy I thought that it was a way that I could kind of encourage other people to study up on epilepsy and really get to know the condition Tamara's epilepsy education began when she was 14 in the middle of the night she suffered an overwhelming seizure and lost consciousness and my best friend fortunately was sleeping over that night heard me fall in the bathroom and when
• 04:30 - 05:00 she found me she of course got my parents and woke them up her parents called 9-1-1 know what was wrong but they knew Tamra had experienced something that required immediate medical attention so some seizures start all at once in the entire brain and we call those generalized seizures in the past the term used for a generalized seizure was grown mall doctors who specialize in treating epilepsy may refer to it as a
• 05:00 - 05:30 tonic-clonic seizure even this is the most obvious siege or the most catastrophic oftentimes sudden onset with or without warning there may be stiffening repetitive jerking of the arms and legs loss of consciousness there may be abnormal respirations the patient may bite the side of their tongue there may be urinary incontinence the patient may injure themselves they may fall on the ground dislocate their shoulder strike their head after the seizure there's a period of confusion and headache and gradual recovery the
• 05:30 - 06:00 other sorts of seizures occur as they start as a tiny part of the brain and they may be so small just to produce a single symptom like twitching of an arm or or a language disturbance tamra now believes she had those smaller seizures for years before the one that sent her to the hospital they're called focal or partial seizures and they can be much less obvious unless a focal seizure spreads the only effect might be a brief moment of staring
• 06:00 - 06:30 confusion language problems or physical effects even leg pain could be a symptom I used to complain a lot about one of my legs and having pain in it and numbness in it I just assumed that I had issues with my nerves from playing sports and never would have thought about Bluffs II didn't even know epilepsy was epilepsy is the name for a group of medical conditions that cause seizures there are more than 25 different kinds of epilepsy each kind caused by a different type of
• 06:30 - 07:00 brain disorder a tendency toward epilepsy can run in families there are multiple seizure disorders and multiple seizure types about half of all seizures have no known cause but scientists continue to learn more about how and why they happen and we're seeing lots of great research that I think will result in much better understanding and control of seizures
• 07:00 - 07:30 today fred is relaxed enjoying his retirement from a long career as a computer specialist but just two years ago his life was in turmoil he had a seizure while changing planes at a Michigan Airport and the next thing I knew I was in the local hospital in suburban Detroit my initial thought was that this has got to be some kind of heart thing he returned home to Boston
• 07:30 - 08:00 where a series of tests was done on his heart but nothing seemed to miss until a few months later when he was biking home from work and whilst cycling along I kind of knew something wasn't quite right because I sort of felt like I was going to black out so I had the sense to get off my bicycle and get up on the curb once again Fred woke up in the hospital this time he was referred to a
• 08:00 - 08:30 neurologist a neurologist is a doctor that thinks about the the structure and function of the brain itself and works together with the rest of the medical professionals to really focus and specialize on on brain and nerves and to some extent the relationship between nerves and muscles put your arms out for me just flat like you're holding a tray close your eyes and hold them right there don't let them Ceaser's rarely happen in the presence of a healthcare professional relax and I want you to put
• 08:30 - 09:00 your arms up like that so the process of figuring out if a seizure is due to epilepsy begins with a conversation and a physical exam close your eyes and tell me which side I'm rubbing my fingers on and push in good and now the other side I want you to tell me is this vibrating the initial diagnosis of epilepsy really is based on the medical history I'm going to put on the first electrode which is the occipital a test called an EEG may add important information as
• 09:00 - 09:30 an EEG is a way of looking at the brain waves the electrical activity in the brain and like an EKG is used to look at the electrical activity of the heart an EEG is used to look at the electrical activity of the brain but not everyone with epilepsy has an abnormal EEG so if we look through here these are the frontal lobes these are the temporal lobes another test that may be helpful is an MRI this test might reveal
• 09:30 - 10:00 problems inside the brain that could be causing seizures blood tests may be used to look for any possible medical causes such as infections an underlying cause might not be found even so having the diagnosis of epilepsy means you can move ahead toward treatment although no two patients are identical and doctors cannot predict exactly how a patient will respond the goal is always the same
• 10:00 - 10:30 the goals are treatment are no seizures no side effects a lifestyle limitations John O'Hurley sister was diagnosed with epilepsy more than 40 years ago back then options for treatment were more limited so managing her her seizures worse it was very difficult for her on and off medications trying to adjust dosages as an advocate for epilepsy
• 10:30 - 11:00 awareness John knows treatments today may reduce or in some cases eliminate seizures so he urges patients to work closely with their doctors I think the most important thing in somebody with epilepsy can do is is to realize that to manage your condition you have to have a team approach you and your physician have got to be a team the most common treatment
• 11:00 - 11:30 for epilepsy is medicine there are more than 20 anti seizure or anticonvulsant medications each one carries the possibility of side effects so we can take time to find which medicine or combination of medicines is right for you finding the correct medication has been a huge process for me by working with her neurologist Tamra found her way to treatment that controls her seizures without intolerable side effects so for her staying on her medication is no problem
• 11:30 - 12:00 right now and taking my medication is second nature to me because of how long I've been on it for as Tamra says it's a process for Lourdes that process took years she was diagnosed with epilepsy in 1996 for a long frustrating time in her life her seizures were uncontrolled often they would break through even when she was on medication Lourdes is all too familiar
• 12:00 - 12:30 with the fear of knowing a seizure may strike at any moment what happens if you're out in public if you're on public transportation that you can fall in and you injure yourself you're not around your family or someone so it can be frightening to not have your seizures on the control as a medical technician herself Lourdes knows it's essential to work closely with a doctor to find treatment that works effectively for her
• 12:30 - 13:00 that requires good communication patients need to find out what to expect from their medication and how it should be taken the lack of effective treatment is often because the patient either does not understand the schedule of the medication is not taking the medication appropriately medication may be ineffective because of other factors including an incorrect diagnosis medicine not being matched to the type
• 13:00 - 13:30 of seizure a dosage that is too low lifestyle factors such as alcohol and drug abuse or drug interactions one way to keep track of how your medicine is working is to start a seizure diary we know when we ask patients in the office how are they doing many times they base it on their most recent experience which is the last two weeks or four weeks when we look back over a year we may get a better representation of their effectiveness of therapy the more closely you stick with your treatment plan the better your
• 13:30 - 14:00 chances of reducing or eliminating your seizures if your medications are working you're a compliant patient you keep your appointments you can have a normal life like everybody else for Tamra and Fred and ultimately for Lourdes medicine was helpful in reducing their seizures but for others surgery might be considered we offer surgery to patients who have not responded well to
• 14:00 - 14:30 medication and in those instances how we define that is a bit variable but we have arrived at a general consensus that if having tried two or three different medicines singly and then perhaps a combination of medicines together seizures are still disabling then we'll think about next steps often surgery patients with uncontrolled seizures
• 14:30 - 15:00 might be referred to an epilepsy center such as this one at the Mayo Clinic surgery is considered when the area of the brain where a patient's seizures start can be identified the goal is to remove the area of seizure onset long term follow-up studies at a number of institutions including ours have indicated that the majority these patients are seizure free or near seizure free after surgery for teens and adults whose seizures are
• 15:00 - 15:30 not well controlled with medication a procedure called vagus nerve stimulation might be an option the large vagus nerve connects parts of the brain to body organs such as the heart and the stomach stimulating this nerve has been found to reduce epilepsy seizures in some people by 20 to 40 percent vagus nerve stimulation is a little bit like a pacemaker but for the vagus nerve in a the pacemaker is a electrical device
• 15:30 - 16:00 that's put in somewhere around here the wire leads up to the vagus nerve in the neck and it sends a little electrical current to that nerve also it reduces the frequency of seizures if adjusted just right a special diet may also be considered one that is high in fats and low in sugars and starch it's called ketogenic and in that one you're trying to eat foods that will help generate chemicals called ketones in the blood
• 16:00 - 16:30 and those seem to have a calming effect on the brain so that you have fewer seizures a less extreme version is called a low glycemic diet choosing foods that help lower the amount of sugar in the blood but patients should not try to experiment with special diets on their own I think if a patient is going to be on a diet plan for a seizure to sort of this should be discussed with the neurologist
• 16:30 - 17:00 the first time Lourdes had a seizure she was asleep her husband Luis was terrified I heard this weird noise like coming from her breathing then all sudden she just started having a seizure I woke up in the bathroom he was holding me up and telling me hurry up just wash your face brush your teeth we have to go we're going to the hospital and I was completely unaware of what happened all I kept asking him well why are we going
• 17:00 - 17:30 to the hospital what's going on and there were paramedics at my living room the scariest part of this whole thing is when your wife doesn't recognize you that's that's scary through the years of being treated for seizures Lourdes has been able to count on her husband's support Lewis goes to the doctor's appointments with her so he can describe what happens when she has a
• 17:30 - 18:00 seizure the doctor explained how Lewis can help he asked me to monitor if I could you know try to monitor you know how long the seizure is how many did she have and if she had multiple seizures the time span between each seizure families can best support someone with epilepsy by learning as much as they can about it to know as much as you possibly can because there may come a time when you have to be the one that is there to
• 18:00 - 18:30 give the help during a seizure and looking at seizures that occur on TV and in movies we know there's a lot of wrong things we can do we don't want to restrain the patient we never want to force anything in their mouth your doctor can give you specific suggestions but the basic principle is to keep the person safe if they're about to fall and you can break their fall do that you want to keep them from hitting something if they're having a lot of muscle movement and flailing and they could hit
• 18:30 - 19:00 a piece of furniture you're going to try to move that you don't want to restrain them you don't want to constrict them in a lot of ways call 9-1-1 if breathing stops an injury occurs or if for any reason you feel the situation is out of control if you know what to do you can provide effective help for the person having the seizure that's what I can say to anybody you know be prepared don't freak out monitor time the seizures be prepare to call 9-1-1 you
• 19:00 - 19:30 know I have the doctor's number ready have the medication ready and and that's it for people whose seizures are not well controlled it's difficult to plan for the unexpected before her seizures were under control Lourdes never knew when the next one might happen it's awful not to have your seizures under control because there's that uncertainty I have no warning that it's coming all
• 19:30 - 20:00 of a sudden I'm talking and then I'm gone I have no idea what's going on perhaps the most important way to plan ahead for safety is to understand what can bring on a seizure I know exactly what a seizure feels like and I know exactly what brings it on it's always when I'm either stressed out or overtired or a combination of the two the common triggers for seizures are sleep deprivation stress is one that's
• 20:00 - 20:30 commonly talked about and then missing or forgetting to take a medication if you're taking it for seizures is another common trigger keeping a diary of seizures can help identify your triggers and it might help you gain awareness of how your body feels before an attack you might experience what is called an aura but it's not the same for everybody for Tamra it's a physical symptom it's my
• 20:30 - 21:00 leg starts going numb and I can feel the numbness so I know that I need to sit myself down and cancel any activities I have for the rest of the day but as Fred came to realize an aura can also be just a feeling that something isn't right that's why he got off his bike before his second seizure because I was a little disoriented and I clearly had felt that something was happening oftentimes these auras are very specific to an individual and similar each time
• 21:00 - 21:30 and many times the patient will describe them in their own terminology but it's usually an unpleasant sensation and occurs prior to the time where they lose awareness not every patient knows that a seizure is about to start because of that aura but some do and it can allow them to do something like sit down or or even lie down if they know they would otherwise fall during a seizure fred is not only familiar with his type of aura he also is aware of what might have triggered his seizures
• 21:30 - 22:00 flashing lights at the airport where his first seizure happened and flickering sunlight before the second one I have to be attentive to the angle the Sun and how much hits me directly in the eyes both times Fred suffered a seizure in public strangers came to his aid if there's a next time whoever helps him will have more information about what's wrong I have an ID bracelet that I I got from a medical supply company that has the standard symbol on it and the word
• 22:00 - 22:30 epilepsy in the back which I thought would be the best choice for and if I did ever did have a seizure again for anyone attending to me EMTs for example if an individual is at high risk of seizures then it may be very important for them to have information available to someone when they can't speak for themselves whether this is a bracelet or a card there are also ways to add protection by taking a close look at your home and workplace put away things that might cause injury during a seizure
• 22:30 - 23:00 you spend a tremendous amount of time in the kitchen the bathroom in the bedroom and we know there's things we can do to minimize injury and that's very important creating an environment of awareness and safety is especially important for parents of children with epilepsy that includes communication with the child's school sometimes parents need to educate the educators obviously they want to be sure that the child has the same educational opportunities or the opportunities that
• 23:00 - 23:30 best fit their developmental skills it's important that the teacher knows it's important that the students know in class that this is not and this is not something unusual it's something that happens to some people and they're able to live with it in management Tamra has been able to arrange a school schedule that allows her to get the sleep she needs and minimize stress she's grateful to her parents for working with her to replace fear with knowledge well my parents were just as scared as I was at
• 23:30 - 24:00 first and they've helped me cope tremendously the history of epilepsy is as old as humanity Alexander the Great and Julius Caesar were described as having fits or seizures in the past seizures were believed to be a sign of demonic possession or some other outside force even today people with this condition often face ignorant even prejudiced
• 24:00 - 24:30 I think epilepsy still is a disorder that oftentimes there's more ignorance than there is knowledge there's a tremendous amount of stigma and a misunderstanding about seizures and epilepsy John O'Hurley believes that stigma was a terrible burden for his sister especially when she had a seizure at school and it scares people and kids can be cruel without meaning to be but they can be and so it's a very difficult thing to do it was very difficult for her that's why he works to get the message out that people with epilepsy
• 24:30 - 25:00 can and do live full active lives many individuals with seizures and epilepsy are is on top of things as any of us and in many cases more so each individual needs to set his own course with the condition since his retirement Fred no longer commutes to work on his bike but he still enjoys riding in less stressful settings in fact yesterday I peeled off 25 going on 30 miles in the hills hills
• 25:00 - 25:30 west of Austin but each person's situation is different recreational activities should be discussed with the doctor I usually encourage patients to be physically active I think common sense don't swim alone probably true for most of the people not just patients with seizures it's especially important to talk about driving no matter how well your seizures are controlled the decision might be out of your hands that's a legal or state decision and the
• 25:30 - 26:00 patient has to abide by the laws in that particular state women with epilepsy have an additional consideration planning for pregnancy when a woman who has epilepsy and is interested in starting a family comes to the office I try to talk with them a lot about the medications the impact of medicines on the developing fetus and try to plan ahead of time another issue to discuss is how epilepsy is affecting your mental health coping with the
• 26:00 - 26:30 chronic illness poses challenges for both the patient and the caregiver don't be shy about asking for help there are emotional and/or behavioral issues that need attention when somebody has any chronic illness especially epilepsy and so I encourage patients and their families to talk about that with their provider and and we try to arrange for help with those issues as they come up for lourdes and louise managing epilepsy
• 26:30 - 27:00 is a partnership that makes a big difference in her attitude toward her condition and he the times i felt depressed or bad about myself that i have this label of epileptic tells me that it you just take your medication religiously and you'll just like everyone else or people that have to take blood pressure medication medication for diabetes this too is manageable my advice to somebody who is just
• 27:00 - 27:30 diagnosed with epilepsy would be that it's not the end of the world and don't let it scare you in pageants and on the air Tamra is shining a light on epilepsy her story raises hope and awareness there's a lot more awareness now of epilepsy a lot of empowered patients with epilepsy are helping to educate and to improve understanding of epilepsy that's a very hopeful part of what's happening in
• 27:30 - 28:00 epilepsy right now so overall I think the horizon is very positive epilepsy affects millions but each person's management plan is unique the key to success is learning what you need to know working with your healthcare team and making a positive commitment to your health because management is the key you can live a very normal productive life with epilepsy
• 28:00 - 28:30 you