My blog started as a way of sharing my epilepsy “journey” with those around me. It was a more detailed way of passing on information about what had been discussed at appointments without having to repeat myself loads of times. I also try and answer questions which people might have that they are embarrassed about asking in person or don’t quite know if they will offend me or not (chances are they won’t!). It is also a place for me to vent my own fears and frustrations and to keep me busy.
I also hope it is useful to other people who are part of the epilepsy community (those with epilepsy and friends and families) to help increase understanding and address stigma. This is my second entry for the Epilepsy Blog Relay and the subject I’ve been given this time is Epilepsy and Families. This isn’t something I’d normally be drawn to writing about because it hurts to acknowledge that having uncontrolled epilepsy has had an impact on my family, but I have chosen to explain ways in which it has had a positive impact on my “team”.
Sometimes when a ship gets wrecked the treasure is buried so deep it’s impossible to believe there can be any, but with enough patience and perseverance something good can come of everything.
I’m keeping it simple today and going for the “two stars and a wish” format. This is a primary school concept for marking children’s work whereby everything you mark gets two stars (positive comments) and a wish (something to work on). If you’re struggling with a long term health condition I’d really encourage you to do the same. The stars might not sparkle very often but once you’ve acknowledged what they are you can look out for them. During the next week or month try and be aware of what is happening around you. If you don’t have an immediate family use your extended family or network of friends. Try and find two things which are positive that are a direct result of your condition and notice how they affect that network. Write them down if you need to (yes I know the memory thing is very real).
Sunovion is proud to feature #MyEpilepsyHero Natalie Beavers, author of this post, who offers a window into the ups and downs she experienced while living a life with epilepsy at a young age. Whether you’re living with epilepsy or a parent to a loved one, we hope these letters give a glimpse into the feelings and experiences common for young ones and the support needed to manage childhood and teenage years with epilepsy.
You are such a beautiful child. Your smile brightens the room and everyone in it when you enter. It’s like you have the light when it’s dark. You were only five when you were diagnosed with epilepsy. At times, life may seem hard for you, but know that you are strong! I am here to share some advice that may help you along the way.
I know you are frightened of elementary school because there are so many people there who aren’t your family. Sometimes you’re embarrassed about a visible bump or bruise from a seizure. You want to stay home from school to hide it. Please don’t spend so much time feeling afraid of embarrassing yourself and your family. You’re putting that shame on yourself. You have amazing and supportive people around you—friends and teachers who are right there with you. No one will bully or make fun of you because of epilepsy—and when you grow up, you’ll help young people living with epilepsy who have been bullied. You’ll help them be strong because you are strong, even though you might not know that yet.
I see you standing at the classroom door saying, “I don’t think I want to go to recess today,” because you don’t want classmates seeing you have an episode. But your friends are knocking at the door, asking you to come out and play, because they don’t care that you have seizures.
Yes, it’s scary coming out of an episode surrounded by strange faces and not knowing where you are. But someone will run to get your sister from her class. She will hold you tight and tell you you’re okay. It’s comforting to know that you have your two sisters right by your side. They are not ashamed of your epilepsy. They actually have advised their classmates and even those in the neighborhood about it. So, it’s okay if you want to play outside with your friends and have some fun or even participate in school activities. Your sisters will always have your back and they love you dearly.
Also know that your parents absolutely love you Natalie. Yes, they were shocked when their baby girl was diagnosed with epilepsy but it didn’t change the love they have for you. Dad is there to pick you up when you fall down and give you those encouraging words: “No one’s life will be easy, so we have to stay encouraged and keep going.” Mom is there to help heal those scars life deals you and put a smile on your face. She’s always there to make you laugh out loud even when you’re hurt. Remember, they both told you to keep your head up and smile no matter what. So do that Natalie! One day you’ll even have two sons who will remind you that they’re not ashamed of your seizures. They want you to keep your head up, too.
Always remember this, you were given this life because you are a chosen one. You are strong, beautiful, courageous, and smart. One day you will advocate for and empower people around the world. You’ll create a book to help others and even receive awards because of this life. You will overcome this, Natalie. Take one day at a time and never give up! When your troubles try to scare you, just show them that you are stronger than they are.
Remember that getting back up and going on with your life after a seizure is a courageous thing. You are brave!
I am a Juilliard-trained clarinetist, on the music faculty at University of San Diego, and a passionate advocate for access to quality music education for all.
In 2011, I gave up waiting for my epilepsy to be controlled in order to have my dream orchestral career and focused instead on what I could do even if my seizures never got any better, which was to teach and perform a few times a year, and have a pretty fulfilling creative and personal life. Since then, I have been performing and teaching more than ever; my seizure control has also somewhat improved thanks to a combination of palliative surgery, medication adjustments, and lifestyle changes. Grieving the loss of my dream has been difficult, but I have discovered and re-imagined a lot in the process.
My seizures often occur in clusters, which are seizures that generally occur closer together than “normal.” For me, this means two or three seizures in a week, and in particular, up to many seizures in a day. Then I might go weeks and weeks with no seizures, or even a month or two. One seizure, for me, is almost never just one seizure. An aura is almost never just an aura, but the sign that more is to come. There’s a lot out there about rescue treatments for children, and how to administer them to a child, but I have never read anything about an adult’s experience with them. I often wonder why this is, because I can’t be the only adult out there on rescue medication for seizures!
Seizure rescue medication
Recovery after treatment for status epilepticus or a cluster seizure event is usually very a difficult, months-long endeavor. Becoming more comfortable with the rescue treatments for my seizures and preparing those around me to respond to a seizure has helped to minimize these events. My current rescue medication is buccal midazolam.
Here is my personal experience with other available rescue medications:
When I was away at music conservatory and living in the dormitories, it was becoming really obvious that Ativan tablets were not working out as a rescue medication for me. First of all, I am so confused after a seizure that I usually either need someone to simply give me the pill, or I need a lot of prompting. . . if I was lucky enough to have someone around who knew me. Many times what happened was that I had a second seizure, and then 911 was called. During one of the seizures, it was reported that I stopped breathing. My school got very alarmed at this kind of medical instability (it is normal to stop breathing during a seizure) and started throwing out very stressful suggestions such as expulsion, should I not get things under control.
So my neurologist suggested that we could try something new. I was prescribed Versed to be taken intra-nasally, using a Mucosal Atomization Device and an adapted syringe, and IV solution. I pre-loaded these syringes with medication and carried them with me everywhere in prescription-labeled pencil boxes for the next several years. My seizures became a weird kind of normal at school in New York. Anyways, it worked great, until one day it didn’t, and I had a seizure cluster that put me into a week-long coma years later in California.
I was discharged from that hospitalization on new medications and with Diastat, a rectal gel version of Valium. Yes, rectal. Let me just say now, I am glad that I am really out of it when I am post-ictal because I don’t really remember much about Diastat, except that it worked. My family are the only ones who have dealt with Diastat.
Complications with rescue medication
In 2009, I was ready to finish my graduate degree, I knew that I could not do Diastat in a university environment. I knew that I would need to ask people I did not know that well to help me with rescue medications. For a while I used Versed intranasal again. Then Versed was on a shortage or my insurance wasn’t covering it, so I tried Klonopin dissolving wafers buccally (or under the tongue). These worked fairly well, except that they were difficult to transport and handle because they are so fragile. Sometimes people didn’t want to help me with my meds, and it was more difficult to open a bottle and unwrap a foil packet after a seizure/during an aura than push a syringe. There was also the time, early on, that I was dispensed regular Klonopin instead of fast dissolving, and I ended up in the hospital for two days because of a seizure cluster.
In 2015, I had VNS surgery. Now, when I have an aura or a seizure, we can use the VNS magnet as an additional part of my rescue therapy. It seems to help. There have been seizures that didn’t generalize, and there have been times that I have had auras that I thought for sure would become seizures that just didn’t.
As of now, I am back to using Versed, or midazolam again as a rescue medication, this time, buccally, in the cheek/under the tongue. So far we have only had to use it once, and it worked out really well. No seizures or auras after.
The reality of rescue medications
When I talk about rescue medications, I do use “we,” often, instead of “I,” because it feels like a team effort: once the auras start or once a seizure event starts, I need help wherever I can get it from. In the past, this has been from family, friends, teachers, colleagues, strangers, and now even my own students are my helpers. By having my rescue medications always with me, and and showing others how and when to use them to help me, I empower myself in living an independent life.
Alice is a Juilliard-trained clarinetist, on the music faculty at University of San Diego. She is also the author of the blog, Seizing Joy which can be found at https://www.seizingjoy.org/
A new, national survey of adult epilepsy patients, caregivers and healthcare professionals (HCPs) revealed a wide range of challenges in the management of epilepsy, which affects more than three million adults in the United States.1SK Life Science, Inc. engaged Kantar Health to develop the Seize the Truth about Epilepsy Perceptions (STEP) Survey, with a goal to gain insights into the unique challenges and unmet needs within the epilepsy community.2
Patients and caregivers are challenged by the public’s lack of awareness of epilepsy in multiple ways. Among the life challenges reported within the survey, one area that showed to have a substantial impact – for both epilepsy patients and their caregivers – is the workplace and employment-related issues. The survey revealed key insights relating to epilepsy and the workplace including:
36% of patients surveyed report not being able to focus at work because of their condition.
33% of patients listed job discrimination as one of the negative experiences caused by epilepsy.
~80% of patients and caregivers feel some form of isolation due to their epilepsy.
HCPs, more so than patients or caregivers, believe patients with epilepsy experience significant shame and discrimination.
To learn more about workplace implications, read the full fact sheet below. It’s important to spread the word so that more can be done to help the epilepsy community. To learn more about the STEP survey and gain access to helpful resources, please visit www.WebMD.com/EpilepsySurvey.