Rising Above Epilepsy: My Journey from Darkness to Hope - The Final Hurdles
The previous post of this series discussed my life to the point of January 2023. How my life turned from living a blissful dream to experiencing my worst nightmare and biggest fear all in one week.
As I dealt with a brain injury following an aggressive seizure along with my life circumstances changing in drastic ways I began to navigate this next chapter of my life that I had just entered.
The weeks following my brain injury were chaotic to say the least. As I was scheduled to be admitted to Beaumont hospital for epilepsy monitoring, I struggled to actually get there.
For those who are not familiar, the Epilepsy Monitoring Unit is an amazing facility within Beaumont Hospital. Upon admission you receive a beautiful headpiece of sorts as you are hooked up to an EEG monitor. You are then reduced off all anticonvulsant medications and then you sit in a bed that has 24hr CCTV monitoring. It feels a bit like a horror version of Big Brother to be honest. The aim of the admission is to induce seizure activity and gain data on where the seizures are originating from in order to better treat the patient. Now bear in mind this all takes place within a controlled environment with 24 hour nurse presence along with alarms which set off as soon as the monitors detect any unusual activity patterns within your brain. So, think, padded beds, flashing lights, sleep deprivation and three bedroom buddies as you all try induce your seizures in order to gain better understanding of the inner workings of your brain.
To some, this unit may seem like a place of horrors but for me it was an admission I was eager to receive as it was the next stepping stone in figuring out what was going on in my brain and if surgical options were a viable option.
I had received notice that I was next on the list to be admitted as soon as a bed became available. I had my bags packed, I was ready to go in and progress on my journey toward surgery, but what I didn’t factor in was how quickly my health would deteriorate in between.
When I was discharged from hospital at the beginning of January my seizures began to spiral out of control. Rolling from one seizure to the next and not getting a break in between, all the anticonvulsants slowly began to fail me. At one point I had to be brought into A&E in St. James’s hospital for them to treat me with high dose IV medications as it was no longer safe for my family to treat me at home. As luck would have it, that was the day I got the phone call that there was a bed available for me in the EMU. Here is where it got tricky. As I was already admitted to A&E I couldn’t be transferred to Beaumont for this particular monitoring but would remain the top of the list for the next bed to become available granted I was in condition to attend. This meant that my best option was to be discharged home, endure the seizure activity I was experiencing and wait for a bed to become available. So, after a few nights of sharing the bed with mum as she stayed up at night making sure I was safe, I got the call that I had a bed and would be admitted that same day.
I underwent monitoring for a total of 5 days where I had a total of 63 seizures. On the fourth day the team were happy that they had received enough activity to confirm their assumptions and I received two loading doses of IV Keppra, a high-strength anticonvulsant. This drug slowed down my brain's reactivity and reduced my seizures to zero…
For three days that is.
After three days I had already been discharged, I was at home with friends and family and operating under the delusion that I was magically cured. Then my heart shattered again as I began to seize over and over until my emergency medications kicked in and I drifted off to sleep.
The following weeks were a waiting period as the doctors reviewed my scans and deliberated on the possibility of further surgery. I think this waiting period was the toughest time of 2023. As I watched the world continue to progress around me, I found myself fighting a never-ending battle of seizures. It was a time when I found myself with a tough choice to make. I could either lay down and let the illness take over my daily life, or I could choose to live WITH it and continue on the path I was on of following my dreams.
I maintain the perspective that; in this world, we cannot choose our circumstances but only how we respond to them. So, I decided to respond with positivity and return to the path of building a life that I loved. This meant, even on my toughest days I would strive to achieve even a 1% improvement in my company. Some days featured massive batches of production whereas others as little as opening an email. Either way, I insisted on refusing to take this time of illness lying down and continually strived to further my life in the direction of positivity.
Now don’t misunderstand, there were days where I recall laying on the couch, unable to sit with my family at the dinner table and begging my Mum to give me more than my allowed dosage of medication just so I didn’t have to endure the seizures and would instead be sedated and able to sleep.
But overall, through all the chaos, I reminded myself daily of the positivity and joy in my life at that moment. Whether it was playing in the gardens with my family in the evenings or reaching new milestones in my professional career, there was always a positive event to hold fast to and get me through the tougher times.
Amidst this chaos and the continual worsening of seizures, I was offered and underwent IVIG treatment. This treatment is aimed at treating autoimmune-triggered types of epilepsy. Now at this time, we were aware that the seizures were originating from frontal lobe cortical dysplasia. However, the IVIG treatment offered hope of improving my quality of life as I awaited surgery.
I underwent a weekly IV infusion of high-dose steroids for a total of three weeks. This was then followed by a tapering dose of oral steroids for three weeks.
Now, I don’t know how your body reacts to steroids, but for me it makes me extremely agitated and energetic taking sleep off the table completely. These weeks were actually the one time in 2023 where I returned to the gym, all in a bid to blow off some of this newly administered energy.
The IVIG treatment had no noticeable impact on my seizures but I do appreciate the doctors' attempts to try to provide me with an improved quality of life during those tough months of this year.
In June, I was informed that my case was reviewed together by the doctors in both James’s and Beaumont, it was determined that I was a candidate for surgery and had an appointment with my surgeon in the following weeks. This consultation discussed the surgical plan for my treatment along with the risks that were involved etc.
I had been hoping for this news since January, and six months later it was delivered that there was a date set for my brain surgery on the 12th of July 2023.
As I was given merely two weeks’ notice of my surgery, I had little time to panic and freak myself out. I underwent a pre-op appointment, had all my fresh scans and bloodwork done, and then on the 11th of July I made the trip up to Beaumont with my mum and filled out all the final paperwork. I knew the risks of the surgery. I knew the area they would be operating was very near the motor cortex and I trusted Professor Donnacha O’Brien with my life.
My friend Niamh followed us up and met us there where she spent the night with me as I tried not to freak out about the fact that within a few hours, my brain would be cut open in the middle of an operating theatre. We watched movies and chatted half the night, a typical sleepover with some added wires and monitors really.
The next morning, I was woken up at 7 a.m. to prep for theatre. Niamh walked me to the door of the surgical area where we said goodbye and the fear struck me like a train. It was suddenly all too real as I walked into pre-op. Thankfully my nurse had offered to walk me down, she knew my case inside out and back to front. As I suddenly struggled to answer questions as simple as my date of birth she took over and helped me through the process by answering in my place. After all the pre-op staff had completed their processes, I was then brought into a room where I hopped up onto an operating table and they administered the anesthesia.
The anesthesiologist was so kind and comforting, asking if there was any particular music I wanted to listen to as they were putting me under, to which I replied “No, just knock me out”. Clearly, she obliged as that was the last thing I remember before waking up hours later in the high-dependency room of the surgical ward. When I woke up I was fairly disoriented and frankly a little high on anaesthetic as I spoke absolute gibberish for a solid hour before falling back asleep. I was informed the surgery went smoothly, the team was happy with the outcome, however, I was not prepared for what I learned next.
As they were carrying out a post-op exam, I quickly realised I had no movement of my left arm. Other than a shrug of my shoulder the entire arm was not moving for me at all… You can imagine my panic!
The surgeons however were unphased by this side effect and simply advised me not to panic.
Now, telling me not to panic in the state I was in was about as effective as trying to baptise a cat.
So, panic I did!
The next day there were improvements in the function of my arm, however I did not regain function within the hand until weeks later. I was discharged from the hospital five days later where I continued my recovery at home.
All this time, throughout all my appointments and consultations, both my and my team's goal was for a reduction in seizure activity and an improvement in quality of life. Never in a million years did I expect the reality I was granted of seizure freedom. Day after day I was beside myself as I lived the new reality of seizure freedom.
…Until the 2nd of August that was.
In early August my seizures returned. Starting off as very mild partial seizures they slowly grew stronger as the days went by. I watched as all my dreams went slipping away once again. I convinced myself that I was foolish to believe this new seizure freedom could have lasted forever. As days passed, I grew weaker and the strength of my hand and arm deteriorated to being limp and floppy once again. All the hard work I had put into physio was suddenly undone and I was back to the beginning again.
My team in James’s were being updated on my condition and when the news of my arm weakness was delivered, I was told to go straight back to Beaumont. On the 9th of August, I was admitted to Beaumont once again. I had scans and blood tests done where it was found that I had infection markers in my blood, swelling of the brain, and slight oozing of the surgical site. I was rushed for emergency surgery where they would wash out the wound, reopen the site, and retrieve samples of all the different layers for microbiology to investigate.
After this surgery, I was experiencing a lot of pain and even more anxiety as we awaited news from microbiology on the results of the samples. The fear was that if the infection lay within the skull bone itself, they would have to remove the section of the skull and leave it out for a number of months as I was treated for infection before replacing it with a titanium plate down the line.
Thankfully this was not the case for me, as the infection lay deeper causing meningitis. As I am allergic to penicillin it took a few days to figure out a treatment plan, to find an antibiotic strong enough to treat the meningitis. I was put on meropenem, a high-strength antibiotic that was administered three times a day via IV. As my veins continued to collapse on the daily, it was decided that I would get a mid-line inserted, and let me tell you, this made life a whole lot easier when it came to the IVs.
After starting this treatment my health began to improve swiftly. I regained function in my arm, returned to physio within the hospital, took myself on daily walks around the hospital campus, and enjoyed reading books in the hospital garden.
Three weeks later I was still on the IV treatment and so we began to explore home care for the remaining course of antibiotics. Thanks to my auntie and the gorgeous nurses in CIT it was put in place for me to be able to get my three IV treatments at home. On the 31st of August, I was discharged home where I would continue treatment the following morning from the comfort of my own couch. Everything was well. I was delighted to see my family, to see my baby nieces who were growing and changing so fast, and to finally be able to sleep in my own bed. Little did we know that the following day I would have a meropenem reaction and become intolerant of the antibiotic.
On the 2nd of September I was readmitted to Beaumont as they reassessed my situation and searched for a suitable treatment plan once more.
This is when I was met with a psychological evaluation.
When the psychologist entered the room and introduced herself, my assumption was that the doctors had assumed I was going stir-crazy as I had been in tears for approximately a week straight at this point. However, that was not the case. The psyc evaluation was, in fact, to determine if there was a possibility for me to be taken off my SSRIs in order to begin the treatment of an oral antibiotic for the meningitis.
As both of the drugs interacted with one another, I couldn’t take them simultaneously so I was left to choose between my SSRI’s which I take for my mental health, or to take linezolid for my meningitis. At this point, I couldn’t tolerate being in the hospital, and so with the psychologist, I made the decision to cut the SSRIs cold turkey and start the antibiotics immediately.
I was discharged the same day and returned home on an absolute high as I could now go visit friends etc as I was not restricted to the house for three IV treatments a day. It was the first time in a long time that I felt a sense of normality return. Even though I was going through withdrawals from my SSRIs, I didn’t care. I'll take brain zaps, dizzy spells, and flu-like symptoms any day if it means I get to see my family and play with my nieces.
Three weeks into this treatment, I began to experience persistent side effects which included nausea, vomiting, diarrhoea, extreme fatigue, and low mood. At this point I had completed a total of seven weeks of high-strength antibiotics and so the hospital was happy for me to cease treatment merely one week earlier than planned. My body was absolutely shot from treatment, my blood count was through the floor and my mood was in the bin. I returned to taking my SSRI’s for my mental health, along with a cocktail of vitamins and minerals and although I am not quite there yet, I am definitely on the road to a full recovery!
Never in a million years did I expect that life would throw me this opportunity. The road to getting here definitely had its curve balls and unexpected turns but I am so proud that I made the decision to go for further surgery. Although the story you just read may seem like a lot for a person to endure, I wouldn’t change a thing! It has given me more motivation than imaginable, made me value my life in a different way than I did before, and most of all, it has opened a world of opportunities as I now remain seizure-free.
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