Managing Life With Seizures

Where am I? Why am I on the floor? What day is it? Did I have a seizure? When? Who was there? Returning to reality following a seizure is different for everyone. Before my brain surgery, it was me looking around in confusion, trying to find answers to the 5 Ws (who, what, where, when, why). The questions seemed simple on paper, but seizures usually took all my brain power away. Is this where I live? What time is it? The postictal state of an epileptic seizure Sometimes I'd be alone at home, trying hard to find the answers myself. Other times I was lucky, and my friends, family, or coworkers were there to answer the questions I apparently asked every 3 minutes, especially, "What day is it?" The very first symptom of a seizure starts the ictal state, and it lasts until the end of the seizure. That's when the postictal state begins. It's the recovery period after the seizure that takes place before a person returns to baseline. Baseline is when our brain starts functioning normally again. One of my epileptologists explained it to me like this: "It’s almost like a rechargeable battery that is discharged and needs to be recharged," he said. Disoriented and tired during seizure recovery My average recovery was generally three to 30 minutes. Sometimes when I had large seizures, I would return to baseline quickly and be back to normal within a few minutes. One of my epileptologists called those moments unusual. Most of the time, seizures left me disoriented and tired. Once I fully recovered, I was usually exhausted and often slept a good 10-12 hours that night. The postictal state can last anywhere from a few seconds to 24 hours for people. Baseline levels can be influenced by many factors, including stress, type of epilepsy, and the use of antiepileptic drugs.1 Symptoms after a seizure Symptoms also vary between people. The biggest postictal symptom I routinely experienced was overall disorientation. My sense of place and time was gone, and friends and coworkers said I couldn't hold a conversation. I rarely could remember what happened in the hours leading up to the seizure either. Drowsiness also set in, which added to the confusion, and sometimes I got a little nauseous. Other symptoms people have during the postictal state include unresponsiveness, headaches, and memory impairments. Psychiatric symptoms like postictal depression and psychosis can also occur.1 The postictal state was usually unsettling and overwhelming, but as the minutes passed, I was able to slowly start recognizing peoples' voices and then their faces. If I was lucky, someone I trusted was nearby to soothe me and answer all the questions above, even if I asked them on repeat. Symptoms vs. postictal state What was sometimes confusing for the person or people around me following a seizure, though, was that it wasn’t always easy to distinguish my smaller seizures from the postictal state. With large seizures like tonic-clonics, it’s easy to see the ictal state end and the postictal state begin because the convulsing and other motor movements will stop. But in focal seizures with impaired awareness, absence seizures, and myoclonic seizures, it is harder to differentiate ictal from the postictal state because the symptoms can be similar.2 My confusion and inability to recognize my surroundings sounded similar to my jamais vu auras. But I could tell the difference because jamais vu set in quickly with no warning and interrupted a normal day. With the postictal state, my whole body was usually exhausted from the seizure and I typically woke up on the floor. The disorientation also lasted much longer. Being with someone who knows I have epilepsy The biggest lesson I learned from my postictal state symptoms was the importance of traveling with someone who knew my seizure background. A seizure struck one time as I was waiting for my flight at the airport. Thankfully a doctor was nearby who recognized my symptoms and convinced the airline to let me fly once I recovered. Unfortunately, I wasn’t so lucky with the next seizure that day. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] Are you the parent or caregiver of a person who has epilepsy? Do you wish to understand what it's like to experience epilepsy? Before that, let me introduce myself. I have had generalised epilepsy and dystonia since I was 10 years old, and I am now an adult living with both conditions. It took me a very long time to find the words to describe how it feels to have seizures at any age, whether I was a child, a teenager, or an adult. It was, and still is, something beyond words. I would never want anyone to experience seizures if it were possible Identifying seizure triggers Let me take you through the phases of my seizures – before, during, and after. There are external factors that trigger my epilepsy. My seizures typically occur when I am careless about avoiding my triggers, which is why it's so important that we're aware of them. Learning how to manage my lifestyle and figuring out what sets off a seizure is a lengthy process. It can be a rollercoaster ride to identify the triggers, but you'll figure it out eventually. What it feels like before my seizure My warning signal to my body is a sharp tug on my eyebrow (on either side). The movement usually alerts me to immediately stop everything I am doing. It is time for me to check myself and take the rescue medication (a benzodiazepine) that I keep on hand for unexpected circumstances. This can help lessen the severity of the seizure or stop it from fully coming on for me. Next, a strange, painful pull on my right toe will begin, signaling that I need to take a walk to clear my head and relax my body. I usually don't speak to anyone at this point. I simply go on a walk while engaging in calming activities like petting my cat, gazing at the sky, or anything else that helps me relax. Panic and rescue meds This is the point at which I experience panic and have to actively calm down to prevent myself from having a seizure. To maintain my own sense of composure, I often find myself laughing for no apparent reason. I usually do everything I can in my power to avoid having a seizure – wacky behaviour and all. If I can't control it, then it will lead to a seizures. Sometimes my medicines and my strategies just don't work. My epilepsy wins on that day. It's beyond my control sometimes. Let's go on to the stage when the seizure is occurring. During the seizure When I lose control in the "before" stages, my body begins breaking down. It feels like every strand of my muscles starting from the toes are twisting slowly until it reaches my head. I lose all motor functions. At that moment, I have no idea what's happening besides the pain that I feel, as the pain slowly reaches my forehead, and then I lose consciousness. Every time it happens, it feels like a near-death experience. It's a terrible feeling, like someone trying to squeeze the blood from each muscle tissue. I'll usually scream due to the intense pain it causes, and also to alert anyone nearby about my seizure, as I won't have any idea if there are people around me. Every attack is traumatizing in a way that's hard to put into words. Explaining it is difficult for me. After my seizure After my seizures, I always end up unconscious. I'll be weak and dizzy, shaky when I wake up, and sick to my stomach. It's as if a large stone were dropped on my head, the weight is crushing. I also have a bruised tongue that will take a few days to heal. It usually takes me a few days to get back to normal and resume regular activities. Every time I wake up, my parents are ready with a bucket because they know I'll be throwing up. Sometimes I'd wake up from an seizure and have another one right away. I have no idea why that occurs. I will be hospitalised if I have a third seizure. I realise that, after having my seizures, I forget many things. However, I am grateful for the reminders I have in my phone and my notebook to help me stay on track. What do seizures feel like for you? That sums up the entirety of my experience of what seizures feel like for me. The symptoms of epilepsy, as well as the disease itself, differ from person to person. But I believe epilepsy shouldn't stop you from living the life you want. Work around epilepsy, have a healthy lifestyle, and keep learning about yourself and your body. That's the beauty of life – we keep learning. How do you describe what it feels like to have a seizure? Comment below to share your experience. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],,Now that our son, who is developmentally delayed and non-verbal, is in school full-time and considered an adult at age 18, we feel more comfort knowing that a seizure rescue medication is available to him by the appropriately trained school nurse or teaching professional. Michael has actually always had a seizure rescue medication since starting his pediatric neurology appointments at Cincinnati Children's Medical Center. What is a seizure rescue medication? A rescue medication are generally fast-acting, so they will start working right away. They are often a controlled substance, like benzodiazepines. And they can help stabilize a person having cluster seizures or breakthrough seizures.1 Seizures are a surge of excessive electrical activity that may cause involuntary movements, sensations, emotions, or behaviors. They can present as laughing episodes or staring spells, where the individual is unable to remember what is happening during this blank-out time.2 Our son's seizures can present as small body jerks. Sometimes he also has laughing episodes that accompany these movements. Rectal medication vs. nasal spray A rescue medication allows us or other caregivers to get him stable enough to transport to the hospital for further testing and care, when repeated seizures keep happening. Or the medication can stop the seizures altogether, avoiding an ER visit. Our son's rescue medication is an epilepsy nasal spray. In the past, we have been prescribed a controlled medication that had to be administered rectally. We've found the nasal spray to be more accessible and less embarrassing for everyone in an emergency. Peace of mind at home and school Our son has lived with epilepsy for most of his life since he was diagnosed at age 3. His seizure action plan at school and home has always included rescue medication. It not only gives us, his parents, peace of mind, but also is a source of confidence for others who care for him when he is at school or in the community. When a seizure is triggered Michael can sometimes have cluster seizures when the weather changes or the barometric pressure changes quickly. This just happened this past week when a cold front and series of storms passed through our city. He had a rather large seizure in the car and our caregiver was with him. She gave Michael an extra seizure pill, which helped to stop the episode. His seizure plan – from his neurologist – states that he should have 1 extra pill and if that doesn't stop the breakthrough seizures, Michael should receive the nasal spray medication, then be taken to the ER. Knowing when it is an emergency Our seizure plan is also to watch and wait. If Michael begins having cluster seizures that last more that 2-3 minutes without resolving with an extra pill that he takes 3 times a day, we are to give him a prescribed benzodiazepine or nasal spray. This almost always slow his brain enough to stop the seizure activity long enough to get him to the hospital for monitoring and further testing from a neurology team. Do you have a seizure action plan? Do you have a seizure plan in place and a rescue medication should you be faced with an emergency situation? If not, I'd recommend talking to your neurologist about this concern. You need to have protocols in place for your safety and the safety of those helping to care for you during a seizure. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],Scars are something that mean something to me. Why? Because each of them has a different story. One of my favorite philosophical quotes is, "Scars are tattoos with better stories to tell." Don't feel embarrassed if you're asked, "What happened to you there?" People definitely ask me this about my scars. Brain surgery scars My surgical scar started as a small straight line on the left temporal lobe. Everyone wanted to see it in my class. Especially the girls when in the bathroom. I was 8 years old and didn't know any better until a teacher made me aware that not all the students had to see it. Then it was time for the second brain surgery. Scars tend to grow longer or in a different direction. My scar became a straight line with a diagonal at the end going up. If my hair is back, it's visible. But frankly, "I don't give a damn," as they say in "Gone with the Wind." Don't let people make fun of you No one made fun of me, but I was questioned by most of the people from my class and friends outside of school. But if a person for any reason makes fun of you or comments about a scar on your body, it's too bad for them. Don't let him or her make you feel down. Besides, everyone has a scar physically, mentally, or both. Happiness is important to have in life. Be happy to wake up, be alive, and carry on with what you want to do. At certain points of time, happiness could be hard to find – for whatever reason it may be. Maybe it's after having a seizure. That is when it is time to dig deep inside yourself to find it. I learned how to do that later in life, but it is always a good time to learn something new. Epilepsy changes our plans Continue to move forward, but a stop sign can happen at different points in time –such as my third brain surgery. Two of my girls were supposed to sleep over for my birthday, but I ended up being in the hospital for that. We never ended up doing our horror movie trilogy night. That was the last brain surgery I had in 2002, not long before eighth grade graduation. And leaves its mark But my brain surgeries didn't end up being a guarantee for stopping the seizures, and once again, the scar was enhanced. I now have a Ỵ-shaped scar on my left temporal lobe. Never mind the old fashion brain mapping procedure, leaving tiny scars in each lobe. One staple was accidentally left in my head, too. I had to wait for it to fall out. The scar ended up larger. Meaning only a half inch big. Mom's nickname for it is the "hole in your head." Answering questions about my scars I will admit, sometimes people ask how the "hole in the head" happened. It depends on the person if I decide to answer with the truth or not. I observe the person's attitude and try to predict their response. If it's a scar from falling during a seizure and you for any reason don't want to talk about it, you can always lie. The best excuse is sports. My left knee is filled with scars from "mountain climbing," "basketball," "rollerblading," and "shaving." (Wink wink.) I'm ready with a good story for when I get questions (especially if I'm wearing shorts). The mental scars of epilepsy If your scars are mental, make sure you speak with someone for help. Figure out what can be done to help you cope with events that may have affected you. Maybe it's yoga, art, writing, etc. As an old TV show on Nickelodeon would say, "Figure it Out" (it was a trivia game show). Just remember, if a person is able to see it, there is nothing to be ashamed of. Each scar – physical or mental – has a story behind it. And everything happens for a reason. Never forget, "Scars are tattoos with better stories to tell." [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"]

Managing Life With Seizures

Seizure Recovery: Who, What, Where, When, Why?

Before, During, and After: What My Seizures Feel Like

Comfort in Having a Rescue Medication in Our Seizure Plan of Care

Epilepsy Scars: And How I Respond to "What Happened to You?"