Rising Above Epilepsy: My Journey from Darkness to Hope - Part 3
In the previous part of this series, I discussed my journey with epilepsy up to the point of Christmas 2022.
I highlighted the boundaries I had pushed, the achievements I had made, and the possible mistakes that caused my world to come crashing down around me.
In November 2022 I began to notice changes in my health. I could not determine whether the symptoms I was experiencing were either panic attacks, which I had been suffering from for the previous three years, or if they were the beginning of a new kind of seizure that was about to take over my entire life.
Frequently, when I would experience panic attacks, my symptoms would include shallow breathing, increased heart rate, dilated pupils causing blurred vision, and sometimes dizziness.
...Along with the internal fear of imminent doom that is!
So in November 2022 as I began to experience these isolated symptoms of tingling in my brain or blurred vision I struggled to determine if they were simply a result of anxiety or if they were indicators of something more sinister going on within my body. Needless to say, as the symptoms continued, I became aware of their resemblance to some seizures I had suffered in the past.
The only way I can think to describe these episodes is as static in my brain. As time went by the symptoms grew stronger. These events grew more frequent and the symptoms became more aggressive as they started to include muscular reactivity which for me was another strong indication that it was in fact an epileptic event I was experiencing rather than a panic attack.
Within a few weeks, the events had become so frequent that I knew the track I was on was similar to the one I had experienced before my first surgery at age 11 years old. This brought up a lot of unresolved emotions from the past, but this time I was determined to be proactive with my health to protect the life I was currently living and loved so much.
On the 8th of January, the frequency of the seizures had increased to the point that I knew I couldn't maintain the life I was living, I recall being in the gym at work, trying to cling to any sense of normality, refusing to accept the possibility of sickness, with tears in my eyes, I said to my friend "I think this might be my last day here, I don't think it's safe to continue".
Enduring one seizure after another, and having to pause my workout with each episode, I was determined to finish my workout in one last attempt to prove my physical strength to myself. As being sick often comes with physical weakness I naively believed that training hard would somehow overshadow the fact I was struggling with my health.
That night, the 8th of January, I asked my Mum to bring me to Kilkenny A&E where I had self-referred for both pain and pressure in my skull. That day I had over 15 seizures and had a gut feeling that something was going terribly wrong within my body.
As complex partial seizures are often difficult to identify, the staff within the hospital were unfamiliar with the symptoms I was experiencing and unsure how to treat me at that time. I was experiencing a lot of pain originating from the location of my previous surgery on my frontal lobe and so I was treated for the pain before being discharged as I was scheduled to visit Beaumont hospital the following week for monitoring.
(Complex Partial Seizure Affecting Eyes & Neck Movement)
Before I explain what happened next I want to mention this... As long as I can remember, my biggest fear has been going to sleep at night. As you can imagine with epilepsy, there is always a risk of having a seizure during your sleep, and my fear was being alone in that moment with nobody around to help.
Of course, there were ways to overcome this fear or eliminate the risk, but as I spoke about in my last blog posts my independence was always a top priority for me. So, sleeping in my own room and facing my fear each night was a choice I made continuously. Now, that's not to say I did not take caution when needed, there would be times when I would ask family to check in on me before they went to bed to make sure I was safe or text my brother to check on me when he woke up if I was feeling off or unwell.
However, on the 9th of January 2023, my biggest fear came true.
At 7 am my dad came in to wake me as he noticed I was not up for work. That was the moment he found me in the middle of a major tonic-clonic seizure where I had gone to sleep just hours before. Immediately I was administered Buccolam, which is an emergency medicine to stop convulsive seizures.
Usually, this straightforward treatment would have resolved the issue, the seizure would have stopped, and I would have regained consciousness.
However, this was not the case on the 9th of January 2023.
As the medicine was administered and the convulsion stopped I was left unresponsive as my family tried to help me recover. It was difficult for them to determine how long I was in the seizure, and their only indication was that my entire bed was saturated with sweat leaving my entire energy resource depleted as I failed to regain consciousness.
Paramedics were immediately called and I was rushed back to Kilkenny Hospital where I spent some time in resus as they established I has aspirated during the convulsion leaving fluid on my chect. When I regained concoiusness I was then moved to a high-dependency ward. I arrived at Kilkenny Hospital on Monday the 9th and it was not until Thursday the 12th that I fully regained consciousness and became aware of what had happened.
My biggest fear had come true.
I had gone to sleep on Sunday night in the comfort of my own bed, only to wake up days later in an unfamiliar environment with aspiration pneumonia along with a brain injury I had yet to recover from. I had no recollection of the weeks leading up to the event, the event itself, and was yet to discover that the next few weeks would also be a patchy memory.
With one turn of events, I had gone from living my happiest life to encountering my worst fear.
(Face swelling four days after convulsive seizure)
Returning home from hospital in absolute confusion as to what had just happened.
Learning that friends had been worried sick by how I essentially vanished from the face of the earth with no way of contacting me.
I was forced to resign from my position at SETU Carlow, a place I was thriving both mentally and professionally. My stress outlets which included weightlifting, running, and dearest to me of all, gardening were suddenly removed from my life as I began to tackle multiple seizures that were changing and becoming more aggressive on the daily.
With one turn of events, my life had been turned upside down. Going from the happiest point of my life to the rug being ripped from under my feet and left in a whirlwind of uncertainty and fear, I tried to piece back together what had happened and how I ended up in this state of chaos.
In the following months, I began to experience a life of turmoil. As my seizures increased and doctors struggled to find medication to treat me, I entered the year 2023 on a road trip between hospitals around the country.
As you can imagine this is a difficult story to share as it exposes some of the hardest times of my life. I hope this story reaches those who may be in similar situations or those looking to find light within their own darkness. In my next post, I will continue the story of 2023 and the events endured. Make sure to subscribe to the Flower Child blog to stay up to date.
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