Hi everyone 🙂 I know I haven’t been updating as often as I promised my health hasn’t been the best lately. I have been having more seizures, ups and downs with medication toxicity, hospital visits and recuperating from a recent VNS surgery. For those of you who don’t know what VNS stands for it stands for Vagus Nerve Stimulator. a Vagus Nerve Stimulator is like a little pacemaker but instead of being for your heart, it’s for your brain. It goes under your skin and has a wire that runs up the vagus nerve. To be clear the vagus nerve goes into the brain not the wire. It sends small bursts of electrical impulses for 30 seconds every five minutes. Every week I have go go back to Massachusetts General Hospital to get the electrical impulses intensified. With the Vagus Nerve Stimulator implant, I’m hopeful it will reduce my seizures and 2020 will be the year I finally get my epilepsy under control.
Here I am as I woke up from surgery.Here I am with my Neurosurgeon Dr. Duhaime and her assistant neurosurgeon Jessica the day after my surgery. Here I am the next day with nurse practitioner Amanda Tourjee turning on the device.
Hi everyone, I apologize for not posting in a while, I’m doing so now. So, lets get talking. Looking for a job can be hard for anyone, especially for someone with a medical condition like epilepsy. There’s always the question of when or how to tell your potential employer about a medical condition. Do you tell them before you get the job or after? As for me, I am very open about my epilepsy so I tell the potential employer about my epilepsy at the interview. This past summer, I was looking for a job and finally I got an interview at Dunkin’ Donuts. I went to the interview and while I was asked all the normal questions, the interviewer asked some crazy and in my opinion a little rude questions. He proceeded to ask me “is it true that you can choke on your tongue?” “can you get hurt if you have a seizure?” and “you know you will be dealing with hot coffee right?” I was confused yet insulted. After all that I still didn’t get the job. a few weeks later I got a job at Bear Hill Nursing and Rehabilitation Center. I loved it there. The residents loved me the staff loved me, because of my positive attitude and big heart. A few months later, due to the spike in my seizures, I lost my job. My boss told me that it was due to budget and hourly cuts, since I was the last one hired, they unfortunately had to let me go. I then came across the job listing on Indeed,
This month I was going to talk about looking for jobs however, with the sudden death of actor Cameron Boyce, I felt this would be a good time to talk about SUDEP.
Cameron Boyce 1999-2019
The first time I ever heard about SUDEP was when I was doing a project on SIDS (Sudden Infant Death Syndrome) for a childcare class I was taking. As I was searching SIDS on google, an article on SUDEP caught my eye. I clicked on the link and stated reading. What I found out really shocked me, no one had explained what SUDEP was to me and that I was at risk due to my uncontrolled seizures.
When you’re first diagnosed with epilepsy, the doctors give you a lot of information about your diagnosis. One of the biggest things they talk to you about is medication compliance. They stress this because it is an important component in preventing another seizure from happening. They also talk to you about the importance of sleep, restrictions upon operating a motor vehicle or equivalent, dietary changes and activity restrictions. They tell you to be safe around water, no swimming alone and no locking your bedroom or bathroom door. However a lot of doctors are still not talking to their patients about SUDEP. Why? It has been suggested, that because SUDEP is poorly understood, and they don’t know the actual cause, doctors aren’t having this important conversation with their patients or their parents because they don’t want to scare them
What exactly is SUDEP? SUDEP stands for Sudden Unexpected Death in Epilepsy. A death thats not the result of an injury, trauma or drowning caused by a seizure. SUDEP usually happens at night when a person is sleeping. Research shows that 90-100 percent SUDEP caused deaths follow having a seizure. That being said, the cause of SUDEP is still poorly understood in the medical community. What is being theorized, is that depressed brain function can cause an irregular heart beat which can lead to cardiac issues. Also suspected is lack of breathing during a seizure that fails to return to normal upon the seizure ending. What is known, is that SUDEP generally occurs in people whom have refractory or intractable epilepsy which means that anti convulsive medications aren’t working as well as they could to control a persons seizures.
According to the CDC 1 in 1,000 adults experience SUDEP whereas with children, the numbers decrease to 1 in 4,500. This reflects that SUDEP is more common in adults than children. It is estimated that there are approximately 2-3,000 SUDEP caused deaths per year in the U.S. A number most feel is under reported as SUDEP isn’t commonly used on death certificates or autopsy reports. The ME’s mostly use some other generic answer such as respiratory complications or heart failure. The most recognized risk factor in the medical community for SUDEP related death is uncontrolled generalized convulsive (tonic-clonic/grand mal) seizures.
Every year the epilepsy community raises awareness of not only epilepsy but of SUDEP as well. Now due to the untimely passing of actor Cameron Boyce, who was only a year older than myself, has SUDEP become visible to people outside the epilepsy community. When responding to articles about Cameron’s sudden death on social media, many people were stating they were unaware this could happen to people with epilepsy. Everyone knows what SIDS is, it’s time they know what SUDEP is as well. We need to have these conversations with our doctors, friends and family. Raise awareness and educate our selves and others about the risks.
To learn more about SUDEP click on the links below
My name is Sam and I’m a 19 year old with Generalized Epilepsy.
School was always a struggle for me. especially when I was younger. In elementary school, I would constantly miss important information for lessons and assignments. All my teachers would tell my parents “Samantha is very sweet but she often daydreams in class.” What they didn’t know was that I was actually having lots of Absence seizures. Absence are what some people call silent seizures. They look like your day dreaming or zoning out. However thats not the case, you’re actually having a seizure. Eyes open but your not conscious. When I was eleven, the summer before starting sixth grade, the day started out like a normal summer day. I was going to the garage to get my bike to go for a ride. That is the last thing I remember. I woke on the ground with my mom crying and the police and fire department all around me. I was delirious and kept insisting that I fell off my bike. However, I was no where near my bike at the time. I had had a Tonic Clonic seizure also known as a Grand mal seizure. After this, I had an electroencephalogram or EEG for short and the doctors diagnosed me with Epilepsy. They told my parents it wasn’t a matter of if but when would I have another seizure. I left the doctors that day with a prescription for an anticonvulsant and so started my journey with Epilepsy.
My hope for this blog is to chronicle my personal journey with epilepsy and to reach out to others who also have this diagnosis and let them know they aren’t alone. I will be covering topics we all have in common such as medication and testing, friendships, dealing with school, bullying and dropping a little education when I come across something new and exciting in the world of epilepsy.
Life With Epilepsy 