I was having 15 seizures a day when doctors told me to try ‘breathing exercises’

She had between five and 15 seizures a day while in hospital (Image: Sarah Harris)

‘Call an ambulance,’ I turned around and told my mother as we pulled up to our driveway.

Three seconds later, in the front passenger seat of her car on a cold January afternoon in 2018, I had my first embargo.

Since then, I’ve lost count of how many I’ve had, but I can safely say the number is three digits, though none as dramatic or eventful as the first.

An hour after the seizure occurred, he was taken to the hospital in an ambulancewhere I was admitted and had a CT scan immediately.

In fact, when the ambulance arrived I felt completely fine, but because I had other pre-existing health conditions, the doctors were concerned as to why this had happened and assumed something was seriously wrong.

After a week in the hospital, which involved a few dozen tests and many evaluations, my body seemed to be functioning normally.

Except it wasn’t… I was having between five and 15 seizures a day. while I was in the hospital.

Of course, I was thrilled that my tests and scans were back to normal, but nonetheless, I kept losing control of my body almost every hour and it was terrifying.

I just wanted someone to tell me what was wrong.

During the years before my seizures started, I had come to understand my body quite well. As a woman of color, I was used to not being taken seriously by doctors and had suffered as a result in the past.

My previous diagnoses of endometriosis and idiopathic intracranial hypertension had come at a late stage, and as a result, my body had endured a great deal of medical trauma in the form of procedures and surgeries.

Unlike epileptic seizures you see in episodes of medical dramas or movies, I didn’t pass out or foam at the mouth (Image: Sarah Harris)

Between 2017 and 2018 I had three major surgeries, multiple medical procedures, many tests, and several hospitalizations and visits.

My last surgery had only taken place five months before my seizures began, and although the nerve damage from the operations has the potential to cause seizures in patients, my doctors thought it unlikely given that it had been almost half a year since the last surgery.

It was safe to say that even they were confused.

Even though I was having seizures with such high frequency, the doctors quickly noticed that these ‘episodes’ didn’t seem to be harming me in any way.

Unlike epileptic seizures you see in episodes of medical dramas or movies, I didn’t pass out or foam at the mouth. In fact, to this day I have been fully conscious in every seizure I have ever had. But just because you’re aware of what’s going on doesn’t mean you have any control over it.

I can usually feel a seizure coming up to three minutes beforehand. My body starts to feel weak and slowly it gets to the point where I completely lose any feeling or control. And then the movements begin; my whole body starts shaking from side to side. Sometimes for as little as 10 seconds and other times for as long as three minutes.

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Once they stop, I slowly begin to regain control and movement. I feel a bit weak and somewhat like I woke up with a bad hangover, but this feeling only lasts a few minutes and then I am well enough to continue with my activities.

By the second day of my hospital stay, the doctors had witnessed enough seizures firsthand to decide they were nothing to worry about.

I was instructed to keep track of them myself instead of calling a nurse or doctor every time I had one during my inpatient stay.

I would record it in the notes app on my phone with details about how long it had lasted approximately and at what time, so I could share it with the doctor when they made their morning rounds.

Before I was discharged after a week’s stay, the doctors explained to me that I was suffering from something known as ‘pseudo-seizures’.

Even though my body was mimicking the actions of the epileptic seizures, this was not what I was experiencing. In fact, my seizures were occurring as a result of ‘stress and trauma’.

And then one day I found not just one person who understood, but an entire community.

As part of my discharge from your care, I was given a pamphlet on breathing exercises and instructions to help me relax for the next few weeks and was sent home. While the brochure on breathing exercises that the doctors had given me had been pretty useless, it was helpful to know that my seizures were stress-induced.

As the weeks went by, I gradually came to accept the fact that these seizures were something I would be dealing with for the foreseeable future. I knew I had to try to get back to normal and to do that it was important that I understand my body and what was happening to it.

But I was a chronically ill young student in my early 20s who couldn’t completely avoid stressful situations.

In the few weeks between my first seizure and discharge from the hospital, my episodes slowed down but I still had a fair amount on a daily basis.

I realized that in addition to stress, they were also triggered by other factors, such as lack of sleep, overexertion, and chronic pain.

Although it was virtually impossible to stop the mental stress with exams and adulthood looming in the distance, I could train my body to be as stress-free as possible with certain lifestyle changes and adjustments. Long days of overwork followed by nights out or with my friends would no longer be possible.

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Unlike my other conditions, it was clear that very few people knew about pseudo-seizures.

I hated having to explain to my friends why I couldn’t go out for more than a few hours because my body couldn’t handle it. I hated excusing myself in the middle of family dinners because I could feel a seizure coming on. I hated a lot of things about the seizures, including that no one understood what I was going through.

My social life and work were severely affected.

First dates now involved awkward conversation warning the person I had just met that this was a normal part of my life and could happen in their presence.

Solo vacations became impossible due to the fear of having a seizure in the middle of a foreign country and being hospitalized.

Doctors are still reluctant to help me or take me seriously when it comes to my pseudo-seizures ({image: Sarah Harris)

Thousands of pounds previously spent on driving lessons had now gone to waste when I was told I would no longer be allowed.

New employers had to be informed of my condition and have multiple emergency contacts in case something went wrong. It was exhausting trying to navigate a life with this condition that I had little to no control over.

And then one day I found not just one person who understood, but an entire community.

By chance, I came across a TikTok video in my ‘For You’ of someone having a seizure. I watched the video at least a dozen times, and each time I noticed a different similarity in these random strangers’ seizures compared to mine.

I would never wish this condition on anyone, but at the same time, it was good to know I wasn’t alone.

The term ‘pseudo-seizures’ alone made me feel like my seizures were something I was making up. I had done my best to control them; forcing my body to stay still when all I wanted to do was explode. But despite my best efforts, I would still lose control. And so would this random woman on TikTok.

Although I had used social media groups and pages for my other conditions, I had never considered it when it came to my seizures.

Mainly because I assumed that there were very few people who had them and because my previous research on the disease had not given me much information. But within minutes of watching this video, I was on Facebook and part of a pseudo-seizure support group.’ I finally had a community that understood.

Now, almost three years after my seizures started, I feel less alone.

I still have seizures, but over the years, I’ve figured out how I can prevent them.

I schedule my time carefully to make sure my body stays as calm as possible. If I know I’m going to have an eventful day ahead of me, I do my best to set aside a day or two off to allow my body to recover.

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Having a job that allows me to work from home has been helpful, as have relaxation methods like breathing exercises and making sure I get a good night’s sleep.

To some extent, even going to therapy was helpful in that it allowed me to gain a better understanding of my body and feel less embarrassed or upset about the fact that seizures often caused me to lose control over it. I still have episodes every few days and sometimes even multiple episodes in one day.

Doctors are still reluctant to help me or take me seriously when it comes to my pseudo-seizures.

Aside from painkillers and a referral to a course of group pain therapy, they haven’t been able to offer much in terms of solutions.

A small part of me still clings to the hope that one day I will meet a doctor who will take me seriously and help me find a cure to end these events. However, I have yet to meet anyone who has found a way to completely stop his pseudo-seizures.

But at the same time, I’m thankful that things are a little less worse than they were when I was sent home with the booklet and, most importantly, that I found an understanding community.

Do you have a story you would like to share? Get in touch by email [email protected].

Share your views in the comments below.

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