Today’s #SameHere🤙Hero: Emily Sheehan, now 16 years old, along w her mom, Sherri.
I began talking to Emily’s mom the other day, when she shared w me her daughter’s trauma history that has lead to something called PNES. Since not many know about it, I offered them to share their story, & they jumped at the opportunity. This is a tightly knit family that has a team of clinicians around them that they adore. Part of PNES comes with seizures, something I experienced during ECT, & when we shared some of the effects of the seizures, they were scarily similar. Emily is a warrior. Here is the story from her mouth:
“On August 9th last year, I moved to Alberta in with my mom, step dad & sisters. I had been having tremors or what the doctors called them – ‘shakes’ for a couple months by the time my mom took me to the doctor. There, I was told I have functioning tremors.
I went on with my life, worked, went to school & was just your typical 15 year old. On February 2nd, my step dad noticed I was actually having a seizure. He called my mom at work & got her to come home. She took me to our emergency department here in town. I don’t remember much of this part but from what my mom had told me, I was having multiple seizures one after another. No doctor knew why or what it was – they just pumped me full of Ativan. I was sent home & told a neurologist from Calgary Children’s hospital would contact me in a week or two.
The seizures proceeded to get worse & more frequent. So, on February 5th, my mom & her best friend drove me to children’s hospital in Calgary. We were seen pretty much immediately & told the seizures were PNES (psychogenic non-epileptic seizures). We were informed by the doctors that the neurologist was excepting us that day.
The doctor we saw was convinced it was all due to anxiety & that I didn’t need to see a neurologist at all. After Candy (my mom’s best friend) put her foot down & demanded I get an EEG done, they finally did. The EEG showed no epiplitic seizures just activity. My neurologist diagnosed me with PNES & refereed me to see Tyson Sawchuck who is a specialist in PNES.
I started to see him about every two weeks or so & did Bio-feed back with him. During our first initial appointment with him he explained to me & my mom what exactly PNES is. We have been told it is an emotional processing disorder. I don’t know how to process stress or emotions or cope at all due to the trauma I endured when living in BC.
He explained that the trauma I endured which was being bullied to being assaulted, caused the PTSD & PNES. The only questions my mom kept asking was why now & why here? The answer was actually pretty simple – my body & mind finally felt safe & secure & I could let my wall down & release. I remember him telling my parents to watch out for incontience & biting of the tongue. Well I ended up doing those both very shortly after. I am also told I hit my head with my fists during seizures, thrash around a lot, scream & cry.
April 2ndI ended up having a 2.5 hour seizure which caused my parents to call an ambulance. By the time I ended up at the hospital, I had stopped seizing but again didn’t remember any of this event. I was randomly dropping to the ground & have seizures anywhere and everywhere.
During my multiple visits to doctors I was asked multiple times why or if I was faking this, also was told I was ‘crazy’ & it’s all in my head. Yes it’s all in my head but it’s real!
I also starting having multiple personalities, I’ve been told I’m up to about 10 different ones now. I have been known to hit, scream, act just about any age as well. My mom pulled me out school as well.
Now I barely remember my mom or anyone or where I am, after seizures. PNES has taken away my life, my independence, it has literally taken away everything. A 2 minute seizure is the equivalent to working an 8 hour shift on your feet with no break at all. I am currently a part of a Somatic clinic & it has been amazing in every way as I’m working to heal.
So while my diagnoses are PNES & PTSD those don’t define me. I have the #SameHere Story above, & I am a warrior & will work through it all!”