Caring for Families and Caregivers of People With Epilepsy

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There are strategies that can help prevent depression, anxiety and PTSD.

IF YOU CARE FOR A LOVED one with epilepsy, you know first-hand how difficult this can be. Let’s take a moment to examine some of the most stressful aspects and how to reduce their impact.

The stress begins with witnessing the first seizure, especially if it’s a generalized tonic clonic seizure or grand mal type. This experience is frightening and anxiety-provoking, and it always leaves a mark. It can even cause post-traumatic stress disorder, or PTSD, resulting in worry, nervousness and fear. For example, some parents find it difficult to allow their child out of their sight after witnessing a seizure, especially at night. Even if the seizures are brought under good control with medication, which is the case for most people with epilepsy, the possibility of a recurrence is an ever-present concern.

Families of those with frequent seizures bear an even greater burden. Uncontrolled epilepsy brings constant worry about a loved one having another seizure when the caregiver isn’t present, perhaps resulting in injury or harm. Living in this state of high stress can cause anxiety and depression in the caregiver as well as the patient. The unpredictability of seizure recurrence is one of the most stressful aspects of the condition, and it can take a severe toll over time.

Families of those with ongoing seizures may also be distressed because of how seizures limit their loved one’s independence, driving, schooling or employment, social engagement and relationships. Family members themselves may be required to make changes in their own personal and work settings to be available to care for the loved one. The accumulated stress can cause emotional strain for everyone involved.

While the challenges of caring for a loved one with epilepsy cannot be completely eliminated, the following strategies can help you take care of yourself emotionally and physically while you manage the stress:

  1. Accept that it’s a normal reaction to feel stressed or anxious in response to witnessing a loved one’s epileptic seizures or how seizures impact their life.
  2. Ask your medical team for a referral to a mental health professional if you’re feeling depressed or anxious, or if you suspect you may be experiencing PTSD.
  3. Find ways, when possible, to take a break from the caregiving role and engage in activities that you find relaxing and restorative.
  4. Be organized and have a plan for what to do if a loved one has a seizure, so that you feel less anxious when the time comes.
  5. Involve family, friends, and your community in the care of your loved one, and communicate your needs so that your support system can help you.
  6. Join an epilepsy support group that can provide resources and put you in touch with other families who are traveling the same path.
  7. Be proactive and ask your medical team about access to case managers, social workers, professional home care or respite services.

By taking care of yourself and keeping yourself well, you will be in a better position to support your loved one. Although it’s hard to accept, we all have limited emotional and mental energy. Don’t be afraid to ask for help, and reach out for the support you need.

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Coping With Depression; Could It Be a Side Effect?

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Ana-Sophia’s Story

Hi, my name is Ana-Sophia Beardsley and I fear that I’m overreacting.

I’m a 17 year old senior at a small high school in the Appalachian foothills of southeast Ohio. On a field trip in the 8th grade, I collapsed into my first seizure in front of all the Jr. High students in my county. The oldest doctor I’ve laid eyes on ensured my panicked parents that it was a one-time thing. Two years later, he said the same thing.

Bound for Barnard

The summer of my sophomore year, I won a scholarship to study for one month at Barnard College–NYC, NY! Stoked, I showed up giddy. The first day, I had a seizure in the communal showers. I didn’t know it then, but that seemingly unfortunate event was a stroke of luck. The college was going to make me go home, but my mom wasn’t about to let that happen. She negotiated that if I saw a doctor and maybe started on medications, then I’d be able to stay. Barnard obliged. I went to a young, sarcastic doctor and she was incredibly well-versed in the world of epilepsy. She helped me understand what it means to be epileptic. The best doctor I’d seen, my confidence bolstered and I felt optimistic. She prescribed a fast-acting drug, and I continued my studies in the Big Apple.

When depression takes over

In my head, medications equaled solutions. I didn’t know that the drugs that claimed the ability to prevent an unexplainable condition, would destroy my mind. Depression was one of the side-effects. Each doctor’s visit they asked if I was experiencing side-effects; I always said no. I thought it was my fault. I didn’t leave my room for anything but food and volleyball practice. To me, the soul-crushing feelings ruling me were far from the idea of epilepsy. Honestly, I hadn’t had a seizure in months and I should’ve been happy. I was miserable. The spring of my junior year in high school, I broke. I’d been on the same medication for about 10 months and I couldn’t do it anymore. My mom encouraged me to see a counselor and my new medical team switched me to a different anti-epileptic drug. Still, I figured my life would decline into a dark chasm of despair.

The summer between my junior and senior year, my life changed. After counseling, I was confident and wanted to go out. On a limb, I applied to a program to study in California and for three weeks discovered God’s bountiful creation of not only nature but people. I didn’t think before acting. I walked up to strangers and left with friends. Going into senior year, I felt reborn. Good spirits can’t cure epilepsy, so I had a seizure on the third day of school. And then in September and November and December. I’m frustrated but happier than I ever was seizure-free. Today, I want to throw up at the prospect of attending college with a disease and want to hide under my pink blanket most of the time. I’m bursting with contentedness, though. I want to live. It’s no longer a sentence, it’s a blessing.

From one teen who’s been there

Here’s the catch: my happiness isn’t necessarily codependent with my epilepsy struggles. It’s no coincidence that I was depressed only while on that first medication and now I’m transformed into the girl before the diagnosis. I’ve learned that you need to speak up–for me, it was almost the difference between life and death. You and I both know that we’re supposed to say that we’re fine. However, I’m so far from fine. I grapple with an incurable disease every day and I’d be lying if I said it isn’t taxing–and I have it good compared to most. As a teen, it’s terrifying to express sometimes very adult feelings, but I encourage teenagers, and adults, to take themselves seriously. I thought that my disease was a burden on others and I was oh-so wrong.

I ask you to take a step back. How do you feel? I’m not trying to be Dr.Phil, but really, are you miserable? There’s a difference between circumstantial unrest and constant, gnawing pain. If you are depressed, don’t dismiss the possibility that your life-saving medications could be a contributor or cause. Please, you’re not crazy or lazy. The drugs we put into our bodies are chemicals, medically sanctioned concoctions created in a lab–they’re meant to be toxic. Sometimes instead of attacking your epilepsy, it attacks your mind. I invite you to be pushy. Ask if there’s an alternative route, be it a switch in medication or lifestyle, it’s worth pursuing. It’s different for everyone and that’s okay. The road is winding and uneven, so don’t blame yourself. You are worth more than depression tells you.

You can control the direction of your journey. Happiness is attainable and you deserve it. Sometimes, it just takes kicking the bottle, not the bucket, to get there.

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Creative Ways To Raise Epilepsy Awareness

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Shonet’s Story

It was a crisp fall evening when I heard the doorbell ring. Thinking it was an early ‘home from school’ surprise from my daughter, I ran up to the door to get my usual squeal and tight hug. Instead I was greeted by a young, energetic teenager talking to me about a donation program for girls. Being #thedayofthegirl and my passion around gender and equality, I was all ears. [Especially, when he asked me to confirm if I am 21…why thank you, tell me more ;-)]

As we discussed the program, we got talking about how I spend my time these days. I mentioned the work I do around epilepsy awareness to which he uneasily said, “Oh, is that the thing with the lights?” While he was somewhat right, I found his answer to be quite interesting. But, I also understood how he could be unsure about what epilepsy was.

Why is there a need to raise epilepsy awareness

In reality, most people are not aware of an illness until it touches them personally. Given that epilepsy is not a disease that people disclose very readily, it stands to reason that the majority of our population would not know how many people are impacted by it. 1 in 100 people in Canada, just in case you were wondering. In the US, approximately 3.4 Million people are living with epilepsy and worldwide, well that number is estimated to be 1% of the population.

Information is power

So I jumped at the opportunity to educate him about it and did a whole information session! He was amazed by all there was to it, thanked me for my openness in sharing my experience and went on his merry way feeling more empowered. That interaction got me thinking about how we can use creative ways to spread the word about epilepsy and in turn help people understand epilepsy better.

Share your story

The biggest way I raise epilepsy awareness is by talking about it and by sharing my story. I am an open book as a person. What you see is what you get. So, it probably comes more naturally to me, than to someone who is more private. Whether it comes easy or not, there’s no denying that people love stories and what better way than to tell your own! Talk to your family, your friends, your co-workers, your neighbours or sometimes even strangers, like I did in my experience above. It will be a great emotional outlet for you and leave them with something to think about and share forward.

Share your time

Another way is by volunteering with my local epilepsy non-profit. These organizations have several programs that support fellow epileptics, from social interaction/recreation groups to entertainment events and new initiatives that reach out to the public and educate them about epilepsy. Think about how your skills might contribute toward the cause and help them to further their message. You not only work towards a common cause and help the community, but you also welcome support, make connections and enhance your own skills.

I think about activities I like doing and try to incorporate ways of highlighting epilepsy within those aspects of my life. Whether it’s spending time with my daughter and painting a pumpkin purple or showcasing the book I am reading to de-stress, anything goes. So give a thought to the many interests you have and how epilepsy can play a role in some way. It fulfills your passion, initiates conversation and indirectly gets the word out.

Spread the word online

It goes without saying in this day and age that social media platforms are a given. I use every avenue I have, to get my message out there. I try to participate in online challenges/initiatives and promote them the best I can. I connect with people online who share the same interests as me and discuss how we can help the community move things forward.
And the last one couldn’t be more obvious; it’s what I am doing right now! I write about my story and experiences with epilepsy through blogs and articles and share them with the world. I have always enjoyed reading and writing but blogging has never been something I have done before. Over the last year, in my attempts to get the word out, I decided to make the leap. I guess my education in English Literature finally paid off 😉

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Living With A Spouse Who Has Epilepsy

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Mike’s story

I met my wife Heidi when I was 12 years old. We grew up on the same street together but we didn’t hang around with each other until we both were going to the same college. She was dating someone else. They would come over and she always brought her dog who also had epilepsy. We ran into each other 20 years later at a bank and started dating and then we moved in together.

I had never seen Heidi have a seizure until we started living together. At first, it scared me and I was always worried about her. When she would have a tonic-clonic seizure I would call her son up to come over. Even though I knew what to do, I didn’t feel confident so I would call him. After talking to Heidi she finally convinced me that I needed to stop worrying so much. She was right; worrying didn’t do any good, it just made things worse. It created more stress.

Supporting my wife

As a spouse, I have to help around the house more often. When she is sick I cook since she can’t stand over the stove and I do a lot of the housework when she can’t.

I have to listen for her when she takes a shower and she has never driven so I do all of the driving. When she has a seizure I get her vagus nerve stimulator magnet and swipe it over her chest to help the seizures stop. When the seizures are really bad I give her rescue medication. I get her to bed and stay with her until they have passed. She hasn’t had any tonic-clonic seizures in years but she has a lot of myoclonic seizures. In fact, just yesterday she had about 80 of them in one day. She took the rescue medication and they stopped fast.

Another thing is when you are living with someone who has epilepsy you have to be there emotionally for them too. She doesn’t get depressed often, but once in a blue moon she does and being an emotional support helps. She has taught me how to be good at that. I have multiple sclerosis (I was just diagnosed a few years ago). She has been a great support for me, and that has taught me a lot on how to help someone with an illness. When I am having a bad day she is usually having a good day, so it always seems to work out.

She is a very strong person, but when you live with a person who has epilepsy you have to learn to be strong also. You just have to adjust to make it a lifestyle to look after them when they have seizures. Every time you turn around in life you are faced with something. So, you can chalk it up to just one more thing, but you have to commit. Why? Because you love this person and everybody needs love. I don’t think of her as an epileptic. I think of her as a person with an illness. I think of her as “her”, a strong, caring, loving person who has a lot of compassion. I am very proud of the Epilepsy Education and Support page she started to help others.

Being happy

Living with a spouse with epilepsy has become habit and/or routine. People with epilepsy don’t like pity. Especially her. She insists on being as independent as she can, even though she had to stop working because of it. That is another thing: if you live with someone who cannot work because of epilepsy it can make it more difficult financially. You just have to learn to be more frugal. I admit it can wear me out, especially since I have multiple sclerosis but I have learned that if you are taking care of someone with an illness you have to focus on yourself also because if you don’t you won’t be able to help them. That is one thing she has taught me also. She is not used to be hovered over when she is sick. Her family taught her to be very independent, but she does accept the fact that when she needs help not to be ashamed to ask for it.

When you love a person with epilepsy it’s easy to help them, it may take extra work, but it’s worth it because you love them and loving Heidi is easy.

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How Schools Can Better Prepare For Students With Epilepsy

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My daughter Journey will not live on a shelf. We may not be able to protect her from every seizure risk and she may incur some injuries now and then, but she will live life fully and share diverse experiences as a result of the collaborative efforts of her family, friends, educational team, and community.

Starting school is always an emotional experience. As the mother of a child with epilepsy, it is terrifying!

My daughter Journey is a clever, beautiful, 11 year old girl who loves life and all it has to offer. She loves to make people laugh and lives to dance and sing. She loves to swim, climb, swing, and ride her bike.

Journey was diagnosed with epilepsy at five months old. We were fortunate that her seizures became well controlled shortly after her diagnosis. When she was four years old, her seizures changed. They became unpredictable, but relatively mild and infrequent until the age of nine. When Journey entered pre-pubescence, she began to have seizures that caused her to suddenly drop to the ground, creating significant risk to her safety and sometimes resulting in injuries. The seizures became difficult to control. As she got older, with changes to her hormones and continued brain development, the seizures became increasingly unpredictable, changing in their presentation and their triggers, and growing more frequent and intense.

Each new school year, I remember preparing for Journey’s very first year of school. I can’t help thinking about the dread that her dad and I felt as we contemplated kindergarten. Like other parents, we were excited and proud to watch our baby girl reach this milestone. Behind Journey’s crisp new backpack and the pretty new outfit, we were sick with worry about sending our precious little one off into a community that generally doesn’t understand the world our family lives in – the world of uncontrolled seizures.

Ours is a world in which the threats are unpredictable, triggers are inconsistent, and Journey’s personal safety is challenged daily. Average activities like being outside in the sun, engaging in physical games, or even walking down the hall can result in an injury, maybe even an ER visit.

It doesn’t seem to matter how many ‘first days’ of school we have; we continue to worry about Journey’s social and educational experiences. Will there be playdates and birthday parties or will the other kids and their parents be too afraid of the seizures? What will learning look like? Will she be included with her classmates or will she be left out in the name of keeping her safe? Will we be able to find ways to keep her as safe as possible while still allowing her the dignity of reasonable risks and choices?

With so many fears, my husband and I often find ourselves questioning how we’re supposed to send our sweet girl off to an environment that, for her and other children with epilepsy, is filled with danger and risk. Sometimes it feels like it would be much simpler to just keep her at home where we can protect her; place her upon a shelf, like a porcelain doll, safely away from things that could hurt her. But what kind of life is that?

I’m proud to say that we’ve survived six years in the education system, advocating and supporting our school in creating a welcoming, safe, and inclusive learning environment for Journey and other students with epilepsy. This has been a learning experience for all, involving patience, open minds, trust, a strong vision, and effective communication.

Safety and supervision are priorities with the staff and administration. Our principal is one of our best allies; she’s committed to making the accommodations required to fully include Journey in social and academic activities. During periods when seizures are less controlled, the principal secures increased classroom support with an Educational Assistant from the Board to ensure adequate supervision and the ability to respond to Journey’s seizure management needs. The education team tracks potential triggers. The school provides a quiet space for Journey to rest following seizures that require her to sleep afterward.

When Journey’s classmates became more aware of her seizures, we wanted to equip the kids so they could cope with what they witnessed. The school met us with absolute enthusiasm when we suggested having the Epilepsy Resource Centre of Southeastern Ontario educate students and staff. The school also organized an epilepsy awareness campaign involving the entire school. I’ll share the astounding impact of these activities in next month’s column.

Journey enters grade six this year and she is the bravest girl I know. She’s my warrior princess! Journey expects to participate in all parts of student life at school; she doesn’t allow the seizures to keep her from trying anything. With the support of the school administration and staff, Journey is becoming a leader and champion at school. She helps her classmates and educators better understand the world of epilepsy and how they can support her success at school.

Journey will not live on a shelf. We may not be able to protect her from every seizure risk and she may incur some injuries now and then, but she will live life fully and share diverse experiences as a result of the collaborative efforts of her family, friends, educational team, and community. She will learn, play, laugh, love, and dance with her friends at school and beyond!


By Kimberley Wright, a passionate Epilepsy Mom who advocates with a clear vision of a fully inclusive, vibrant life beyond seizures for her daughter.

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Hot Neurobiology Topics in Epilepsy: What you should know about caffeine and epilepsy

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Living Well With Epilepsy has partnered with the International League Against Epilepsy (ILAE) to bring you a series on Hot Neurobiology Topics in Epilepsy. This initiative is led by the ILAE Neurobiology Commission (NBC), which is chaired by Aristea Galanopoulou, MD, PhD (USA). Dr. Galanopoulou, Professor of Neurology and Professor of Neuroscience, Albert Einstein College of Medicine, works towards promoting neurobiology research in epilepsy through advocacy, education, training, proposals of optimal methodologies and infrastructure improvements. The NBC organizes activities aimed at informing the progress and best practices in neurobiology of epilepsy research, including symposia, workshops and reports.

Thank you to the commission members for spearheading this initiative. We hope you enjoy this series.

Kathryn A. Davis, MD, MSTR, Assistant Professor of Neurology at the University of Pennsylvania and member of the ILAE NBC recently had the opportunity to connect with Astrid Nehlig, PhD, a research director at the French Medical Research Institute, INSERM in Strasbourg. Dr. Davis has shared her interview with Dr. Nehlig where they discuss the topic of Caffeine and Epilepsy.

Dr. Nehlig’s main research interests are brain metabolism, brain development, absence and temporal lobe epilepsy, and the effects of coffee and caffeine on health, mainly on brain function. Dr. Nehlig has published her research extensively, given invited lectures worldwide and is on the editorial board of multiple prominent epilepsy journals.

Caffeine and Epilepsy

ILAE Neurobiology Commission: Dr. Nehlig, does caffeine impact seizure control? What’s the evidence?

Astrid Nehlig, PhD: The number of available studies on the effects of caffeine on seizures is scarce. Mostly two clinical studies, one performed in a hospital on 174 patients and a large questionnaire study including 105,941 nurses did not report any difference in seizure control and occurrence between days with or with no caffeine (in the second study, the mean daily caffeine intake was 437 mg, i.e. about 3-4 cups of coffee).

Likewise, in a cohort of 35,596 children no association was reported between the antenatal use of caffeine by pregnant women and the risk of occurrence of febrile seizures in the first 3 months of life. Similarly, in premature babies with apnea, the treatment with caffeine citrate (30 mg/kg) does not impact seizure occurrence and the risk of epilepsy.

NBC: Do coffee or drinks with caffeine have the same effects on different types of seizures?

AN: As mentioned in the previous answer, caffeine intake does not seem to impact seizure occurrence whatever the type of seizures.

NBC: Does everyone react the same way to coffee or drinks with caffeine?

AN: The answer here is no. There are some case reports mentioning the occurrence of seizures and even status epilepticus after the ingestion of caffeine. This rather occurs after the ingestion of high to very high daily doses of caffeine, most often in the range of 500-1000 mg/day. As a memo a cup of coffee contains about 100-150 mg caffeine (125 ml), a cup of tea 40-60 mg (125 ml), a cola drink 40 mg (33 ml), and a can of energy drink 80-160 mg according to the size (250-500 ml).

In fact it seems like the threshold for seizures is an individual factor that may vary and people with epilepsy can quite easily notice at which dose and in which conditions a potential increase in seizure occurrence starts and they should be advised to maintain their daily intake below this dose.

NBC: Should people with seizures be drinking caffeinated beverages or should they avoid it and when?

AN: From the available data, it does not appear that people with epilepsy should avoid drinking caffeinated drinks as long as they do not go over their individual limit. They could be advised to avoid drinking a large quantity of caffeinated drinks in a short amount of time, especially on an empty stomach while a reasonable timed caffeine intake does not seem to impact seizure occurrence. In animal studies, it has even be reported that the chronic exposure to caffeine is protective, reduces the occurrence of seizures and has no deleterious consequences as reported for an acute intake.

NBC: Does caffeine change the effects of seizure medications?

AN: The number of studies on this point is very limited, especially in humans. It was reported that in healthy volunteers that the tissue half-like of carbamazepine is doubled in the presence of 300 mg of caffeine while its bioavailability is reduced by 32%. Phenytoin and phenobarbital seem to alter caffeine metabolism as well. More studies are needed on this point.

NBC: Do pregnant women have to be more careful about drinking coffee or drinks with caffeine?

AN: Pregnant mothers should remain in the advised daily limit of 200 mg caffeine intake at which no report of increased risk of seizures has been observed in humans. A slight increased risk has been reported in animal studies but to the best of the present knowledge and based on the study cited above concerning the cohort of Danish pregnant women, caffeine consumption in reasonable amounts does not seem to impact the seizure risk in children.

NBC: What are the unanswered questions regarding caffeine and epilepsy?

AN: At this point, we have only a limited knowledge on the interaction between various seizure medications and caffeine. It may well be that the reports of single cases with seizures might be due to the interaction between caffeine and the medication as much as individual sensitivity.

We also need to explore the genetic bases of caffeine metabolism, actions on the body and brain to better understand the inter-individual differences in the sensitivity to caffeine, especially in people with epilepsy.

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