“Call an ambulance,” I turned around and told my mother when I pulled her into the driveway at home.
Three seconds later, on a cold night in January 2018, in the passenger seat of her car, I had my first seizure.
Since then, I’ve lost the number I had, which isn’t as dramatic and turbulent as the first, but it’s enough to say three digits. It’s no exaggeration to say.
Within an hour of the attack, I was taken to the hospital by ambulance, where I was hospitalized and immediately had a CT scan.
In fact, he was perfectly fine by the time the ambulance arrived, but because of other existing health conditions, doctors were worried about why this happened and thought something was a serious problem.
After a week of hospitalization with dozens of tests and many evaluations, my body appeared to be functioning normally.
The exception was not – I had 5 to 15 seizures a day while in the hospital.
Of course, I was happy that the tests and scans returned to normal, but I was still horrified, losing control of my body almost every hour.
I just wanted someone to tell me what went wrong.
Over the years before the seizures began, I became quite familiar with my body. As a woman of color, I’m used to the doctors not taking me seriously and have suffered as a result of this in the past.
Both my previous diagnosis of endometriosis and idiopathic intracranial hypertension have been delayed, and as a result my body has tolerated a significant amount of medical trauma in the form of procedures and surgery. rice field.
Between 2017 and 2018, I performed three major surgeries, multiple medical procedures, many tests, and several hospitalizations and visits.
My last surgery was done only 5 months before the onset of the attack, and nerve damage from the surgery can cause the patient to have a seizure, but my doctor said it was almost half a year after the last surgery. Was unthinkable.
It is no exaggeration to say that even they are confused.
Despite the fact that I had seizures very often, doctors quickly realized that these “episodes” didn’t seem to hurt me.
Unlike the epileptic seizures seen in medical dramas and movie episodes, I didn’t have a pitch black or bubbling mouth. In fact, to this day, I have been completely aware of all the seizures so far. But just because you know what’s going on doesn’t mean you can control it.
I can usually feel the seizures happening up to 3 minutes ago. My body begins to weaken and slowly reaches the point where I completely lose my senses and control. Then the movement begins. My whole body begins to cramp from side to side. In some cases it is only 10 seconds and in some cases it is up to 3 minutes.
When they stop, I slowly begin to regain control and movement. It’s a little weak and I feel like I’ve awakened from a hangover, but this sensation lasts only a few minutes and is enough to keep me active.
By the second day of my hospitalization, the doctor had witnessed my seizures in person and decided that I didn’t have to worry too much.
Instead of calling a nurse or doctor every time I was in the hospital, I was instructed to follow myself.
I logged in to the memo app on my smartphone and entered the approximate length and time details. This allows doctors to share when they make a morning round.
Before leaving me after a long stay of a week, the doctor explained to me that I was suffering from something known as a “pseudo-seizure.”
This was not what I was experiencing, despite the fact that my body mimics the behavior of seizures. My seizures were actually the result of “stress and trauma.”
And one day, I found the whole community, not just one person who understood
As part of their discharge from care, I was given a pamphlet on breathing techniques and instructions to ease it over the next few weeks and was sent home. The breathing pamphlet I got from my doctor didn’t help, but it helped me to know that my seizures were caused by stress.
Over the course of the weeks, I gradually agreed with the fact that these seizures address the foreseeable future. I knew I had to try to get back to normal. To do so, it was important to understand your body and what was happening to it.
However, I was a young chronically ill student in my early twenties and could not completely avoid stressful situations.
A few weeks after my first seizure and discharge, my episode was late, but I still had a fair amount every day.
I noticed that it was caused not only by stress, but also by other factors such as lack of sleep, excessive exercise, and chronic pain.
It was virtually impossible to stop mental stress in distant exams and adult life, but certain lifestyle changes and adjustments can help you to be as stress-free as possible. I was able to do it. It is no longer possible to overwork for a long time and then go out for a party or a night out with friends.
It was clear that, unlike my other conditions, few people knew about seizures.
I didn’t want to explain to my friends why I couldn’t go out for more than a few hours because I couldn’t move. I hated forgiving myself in the middle of my family’s midnight snack because I could feel the seizures happening. I hated a lot about seizures, such as no one knowing what I was doing.
My social life and work have been seriously affected.
The first date now contained a nasty conversation that warned the person I just met that this was a normal part of my life and could happen in their presence.
Fear of having a seizure in the middle of a foreign country and being hospitalized made it impossible to take a vacation alone.
Thousands of pounds I used to spend in a driving school are now wasted as I was instructed that I was no longer allowed.
The new employer was informed of my condition and had to be given multiple emergency contacts in case something went wrong. Attempting to navigate life in this state where I had little or no control was exhausted.
And one day, I found the whole community, not just one person who understood.
I happened to come across a TikTok video on “For You” by the person who had the seizure. I watched the video at least 12 times, and each time I noticed that the similarities between these random stranger’s seizures were different from my own.
I don’t want anyone to be in this state, but at the same time it’s nice to know that I’m not alone.
The word “pseudo-seizure” alone made me feel that the seizure was something I was creating. I did my best to control them. I forced him not to move when he wanted to explode. But despite my best efforts, I will still lose control. And so will this random woman on TikTok.
I used social media groups and pages under other conditions, but never considered it when it came to seizures.
The main reason was that I thought few people were suffering from them. Also, previous status investigations did not provide much information. But within minutes of watching this video, I was on Facebook and was part of a pseudo-seizure support group. I finally got the community I understood.
Almost three years after the attack began, I no longer feel lonely.
I’m still suffering from seizures, but over the years I’ve realized how I can prevent seizures.
I carefully schedule my time so that my body is as calm as possible. If you know you’re going to have a busy day, we’ll do our best to take the next or two days off so that you can recover.
Working at home was just as useful as relaxation techniques such as breathing and a good night’s sleep.
Even participating in treatment helps to some extent in the sense that I was able to better understand my body and the seizures often did not feel embarrassing or annoying to the fact that I could not control it. I did. I still have episodes every few days, sometimes multiple episodes a day.
Doctors are still reluctant to help me or take me seriously when it comes to my fake seizures.
With the exception of painkillers and referrals to the group’s pain treatment course, they were unable to offer much in terms of solutions.
Only a few of me want to meet a doctor who will one day take me seriously and help me find a cure to end these events. But I haven’t yet met anyone who has found a way to stop a fake seizure altogether.
But at the same time, I am grateful that the situation was a little worse than when I got home with the pamphlet. And most importantly, I found a community that I understand.
Do you have a story you would like to share? Please email jess.austin@metro.co.uk.
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