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