Epilepsy Blog Relay: Postpartum care and epilepsy

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Maureen’s Story

At my very first appointment, only 8 weeks pregnant, my OB asked, “What are your seizure triggers?” Stress and sleep deprivation. She gave a nod that said, “We’ll get through this.”

Regardless of epilepsy, I always knew that pregnancy and labor were going to be challenging. As difficult as pregnancy and labor were, postpartum care is where found the least support from medical professionals.

Labor

On Saturday, June 29th, my contractions began. On Sunday, June 30th at 11:23pm, my healthy, beautiful baby boy was born. It was a long labor, over 24 hours. It was intense, beastly, beautiful, and empowering all at the same time.

I felt an overwhelming amount of love as my baby was placed in my arms. It’s hard to describe, but it’s the type of love that you can physically feel warming your chest. I had the instinctual reaction of bringing him close to my chest and kissing his head. I felt like he had always been a part of my life.

Almost immediately after the birth, they dimmed the lights so I could nurse and the team of amazing nurses had dispersed before I even had a chance to thank them. My nerves started to calm and the pride of what I had accomplished kicked in. I just brought a human into the world! At the same time, the lack of sleep became increasingly noticeable.

Postpartum Care

My bed was wheeled out of labor and delivery to postpartum an hour later. My sleep deficit was becoming evident through hand jerks. I knew it was time to close my eyes but all of my soul wanted to simply hold my newborn close. As my hands started to twitch, I felt inadequate knowing that in the first hours of his life, the safest place for him to be was out of my arms.

Heartbroken, I called the nurse in and asked her to take my baby to the nursery. She raised her eyebrow and told me “mother’s don’t send their babies to the nursery these days. It’s healthier for baby and mama to stay together.” I whimpered that I have epilepsy, a seizure disorder (in case she didn’t know), and sleeping right now was a must and taking him to the nursery was a must. Her lip curled as she rolled my newborn out of the room. My body was starting to flop and twitch so I blinked my guilty tears away and leaned back into my bed. I fell asleep the moment my head hit the pillow.

Nursing and Epilepsy

It wasn’t long before another nurse came back with my hungry baby. Thankfully the 2 hours of sleep had recharged my batteries just enough that I confidently hugged him close to me to nurse. Again, I wanted to snuggle with him for hours but I could feel my body betraying me once again. After what seemed like the fastest hour of my life, I called the nurse to take him back to the nursery. Similar to the previous nurse, she advised me it was best for baby and mother to remain together. These comments were starting to get annoying! I was tired and didn’t want to have to repeat myself every time a new person came in. Again, I informed her about my seizure triggers, and without a hint of empathy, she turned one her heels and sped out. What was with these nurses? I started to feel judged as a mother. Did these nurses have no empathy for my situation? Or was I crazy be thinking this at all? Or maybe I have postpartum depression? I had so many questions but I reminded myself that to have my baby back in my arms, I needed to rest first.

Not even three hours had passed when a clearly irritated nurse burst threw the door and flipped on the lights. “Don’t you want to feed your child?” she scolded. I was caught off guard by her aggression. “Yes, of course I want to feed my child.” They think I am a monster, I thought. The nurse continued “the nursery is for premature and sick babies, and your baby is full term and healthy.” I had no reply. I was too tired to think and I started to wonder if I was actually being selfish and was a horrible mother. My child wasn’t even 24 hours old and in my mind these nurses had already made it clear they thought I was making bad choices. Had no other mother requested her baby be in the nursery? Right as a longwinded apology was on my lips, my partner stepped in to defend my choices and asked the nurse to leave.

Epilepsy Shaming

The negative energy wasn’t in my hormonal head! I was actually being shamed! Surprisingly, I was grateful to have this feeling confirmed by my partner. As my confidence returned I reflected on my experience and was appalled by the way I had been treated. Two days later I was wheeled out to my car without a smile or word of congratulations.

4 months later and I am still appalled! My health was dismissed in the most challenging days of a new mother. I am sharing this experience so other women don’t have to go through it. I will never excuse the nursing staff completely, however I think that being more communicative would have helped.

My recommendation for mother-to-be is to create an epilepsy info sheet. Make hardcopies for all staff! In your info sheet explain the basics of epilepsy. Give your seizure history, medications, and triggers. Put your triggers in bold! Unrealistically, I had expected nurses to understand epilepsy, but the truth is no one knows it all (not even nurses!).

What’s your experience with childbirth? Have you ever had a medical professional dismiss your health?


NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com.

Epilepsy Blog Relay: Hayley shares how epilepsy has affected her family

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Hayley’s Story

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”.

Excerpt

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).

READ MORE

Please follow the link to my full post at www.fitsandstarts.co.uk . I hope that it helps encourage others who are suffering to do some digging.


NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com.

Epilepsy Blog Relay: A letter to young Natalie

This post is part of the Epilepsy Blog Relay™. Follow along all month!

This blog post was submitted by Sunovion Pharmaceuticals Inc., the Founding Sponsor of the November 2019 Epilepsy Blog Relay.

Natalie B.’s Story

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.

Hello Natalie,

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!

–Natalie today

 

© 2019 Sunovion Pharmaceuticals Inc. All rights reserved. 10/19 NPC-APT-US-00016-19

This blog post was submitted by Sunovion Pharmaceuticals Inc., the Founding Sponsor of the November 2019 Epilepsy Blog Relay.


NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com.

 

 

Epilepsy Blog Relay: The reality of seizure rescue medications for adults

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Alice’s Story

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.

Seizure clusters

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:

Ativan

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.

Versed Intranasal

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.

Diastat

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.

Rational Polytherapy

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.

Read More

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/


NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com.

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