Claudia’s Story

I am Claudia! I am 18 and from NSW. This is my Meningococcal Meningitis story.

This story starts on Monday the 26th of May 2022. I had gotten back from a two month road trip in Queensland a week earlier and I was feeling excited to see my friends and family and get back to work. I had work during the day on that Monday and towards the end of my shift I started to notice that I had a pretty intense headache that felt like my brain was pushing on the front of my head. I also noticed that I was quite sensitive to the lights and music that was playing. When I left work and drove home, I noticed that I also had quite a stiff neck. I didn’t think much of these symptoms because I had had a little bit of a cold the days before and just put it down to that. My parents were both working late that night and I was meant to be cooking dinner but I ended up calling them and telling them how sick I felt and that I couldn’t make dinner. By the time that they got home (around 7:30pm), I had started to feel a little better. My parents made me some soup which I ate and then I laid in the living room with them for a while. At about 9:30pm, I got up to get ready for bed. I went to the toilet and as I was sitting there I began to feel an overwhelming feeling that I was going to faint. Because I have felt this feeling in the past, I recognised it and was able to text my dad. I then fainted and woke up in the hallway outside the toilet. My body was covered in sweat but I was also shivering. My parents said that the colour had completely drained from my face. I then went back into the living room and laid with my parents for a while. While I was laying there, I was shaking so vigorously and I felt as if I couldn’t stop it at all. After a while my mum took me to bed. At this point, the shaking was making me feel so nauseous and I ended up vomiting. 

I managed to get a couple of hours of uncomfortable sleep until I woke up at 3am. I felt like I needed to use the toilet so I walked past my parents’ room to the bathroom. Luckily my parents had left their bedroom door open and heard me walking, because I ended up fainting again. The same thing happened when I woke up, I was covered in sweat but my body was switching between hot and cold. I spent the rest of the night tossing and turning in my parents’ bed with my mum. When I woke up on Tuesday morning, I felt horrible. My neck and head felt stiff, I had a headache which felt like my brain was being squeezed through my skull and I felt nauseous. My dad spent the morning trying to get a doctor’s appointment for me as I laid uncomfortably in bed. After a while, we decided that I needed instant medical attention and so my dad called the ambulance. 

The ambulance luckily arrived in about 15 minutes. When they got there, they began to ask me many questions about my symptoms and then decided that I needed to be taken to hospital immediately. As soon as I sat up from bed I vomited again and I remember feeling extremely drowsy. I somehow walked myself up my driveway and into the ambulance. The paramedic that was looking after me was amazing and extremely kind. Once I was in the ambulance he gave me a small amount of morphine and we made our way to the hospital. About 5 minutes into the drive to the hospital I began to show signs of dysphasia. My memory begins to get patchy at this point of the day and I only remember small sections. I remember being wheeled into the hospital and laying on the bed in the hallway of the emergency department. The paramedic was asking my questions about my name, age, the day of the week, etc, but I couldn’t manage to get the words out of my mouth. I remember seeing my mum come into the hallway and I was able to blurt out “That’s my mum!”. This was all happening at around 10:00-10:30am and from then until about 5:00pm, I have no memory. 

My parents filled me in on what had happened when I woke up. As soon as the doctors suspected I had meningitis I was an emergency case. I was put on antibiotics straight away and taken away for lots of different tests. I had a lumbar puncture, blood tests, CAT scans and more. The lumbar puncture was what the doctors used to determine that I had Meningococcal B. They had said to my parents that it was definitely meningitis but they had to determine whether it was bacterial or viral. Half an hour later, they returned to tell my parents that it was bacterial meningococcal meningitis and that it was life threatening. 

When I woke up, I was in a private room in the infectious area of the emergency ward. I had tubes coming out of me in every place I could see. I had two cannulas in my arms, an oxygen tube in my nose, and so many patches on my chest to monitor my heart rate. I felt confused and disoriented but luckily my parents and doctor were there to fill me in. They told me that I had meningococcal meningitis and that I was being treated and the treatment was working well. I was still extremely dazed and confused at this point and I remember trying to make the nurse let me get up to go to the toilet and being annoyed when she said I wasn’t allowed to walk – even though I was attached to many different machines. I ended up getting a catheter inserted and spent the night in that room in the emergency ward. I hardly slept because I was so light and sound sensitive as well as still experiencing the horrible headache and stiff neck and back. 

On Wednesday morning I was transported to a private room in the Neurology ward. I spent the next 5 days recovering in this room. I was on strong painkillers but constantly experienced the painful headache. It was like nothing I had ever experienced. It limited my movement and I couldn’t watch TV or even go on my phone for the first few days because of how painful it was for my eyes and my head. I had a beautiful view from my room but had to keep the blinds mostly shut for the first few days because of how sensitive I was to the light. When the cleaner came in to change the bin, the rustling of the plastic felt so loud and I had to block my ears because it was so painful. I had to get my antibiotics every 12 hours, which meant that I would normally get them around 2pm and then 2am, causing me to have an extremely interrupted night. I also had to get my blood pressure checked every few hours and I had painkillers every few hours. I struggled a lot with food as I felt very nauseous a lot of the time. I began to walk around on Friday which felt strange because I was so frail and weak. My family and friends kept me company during visiting hours which was great and made me feel so much better. The worst part of the day was when my visitors left at night time because I would be left to try and get to sleep with the intense pounding headache – and it was never easy. 

During my recovery period in this room I did a few more tests, including an ENT test (for my sound sensitivity and tinnitus) and an EEG test (to see if there were any long-lasting brain effects).  Luckily for me, I was discharged by my team of doctors on the last day of my antibiotic treatment. My doctor said that he was extremely happy with how I had responded to the antibiotics and that blood test results showed that the infection level in my blood was now extremely low. He said that I should spend the next few weeks recovering at home rather than staying in the hospital. 

For the next two weeks I did exactly that. The only real after effects that I had were headaches and tinnitus. I feel extremely lucky that my body reacted so well to treatment. I am now back living my life to the fullest and feeling very lucky every day. 

I am extremely thankful to both my parents and the team at the hospital who reacted so quickly. If Tuesday had not played out exactly how it did, I would most definitely not be where I am today. 

Since being out of hospital I have gotten the Meningococcal B vaccine, which I would highly recommend to everyone. 

Meningococcal can come out of nowhere so I urge people to learn the signs and symptoms and stay alert. 

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