I am telling my meningitis story to raise awareness of this debilitating illness. It’s been 6 months now since I got meningitis and have been recovering from the illness, and I hope my story will help anyone who may be going through something similar.
I had been admitted to the Emergency Department with the worst headache you could ever imagine. It turned out I had meningitis, would require hospitalisation and that I also had a brain aneurysm.
My Meningitis Story
My meningitis story started after I went to bed early one Friday evening and woke up in the middle of the night with a splitting headache. This never happened. I’m not someone who suffers from headaches or migraines. I managed to get up, take two pain killers and eventually went back to sleep, hoping I could just sleep it off. I didn’t want to wake my boyfriend in the middle of the night, but something definitely felt abnormal.
This headache felt so different to any other headache I had ever experienced – all on the top of my head, not like a normal headache in the forehead. I woke up a few hours later and the headache was still there, strong as ever. I took more painkillers, told my boyfriend about the pain, and as we had no plans for that day we agreed I should stay in bed and try sleep it off, again.
I fell in and out of sleep all day, and when it got to 4pm and the pain was not even a tiny bit better, I knew I had to seek medical advice. Even though deep down I did feel a bit silly about going to the Emergency Department purely for a headache.
Could The Headache Be A Bleed On The Brain?
You see, I just couldn’t get my friend’s story out of my head. At the age of 39 she had suffered a sub-arachnoid haemorrhage (a bleed on the brain). I was beginning to think the same was happening to me. Plus my granddad had suffered from a ruptured brain aneurysm so perhaps it was hereditary.
The headache was unbearable and that kind of thunder-clap headache was the classic symptom for a brain haemorrhage. I had worked for years in the CT scanner in the Emergency Department, so I knew that when people said they were experiencing the worst headache they had ever had in their life, that something was wrong. And this was absolutely the worst headache of my life.
I kept checking for any neurological signs and the symptoms of stroke (facial drooping, arm weakness, slurred speech), but I wasn’t getting any of those symptoms which made me confused. If there were no other symptoms besides this headache, what could it be? What if the doctors just said it was a bad headache and sent me back home again? Would the doctors think I was wasting their time if it wasn’t a ruptured brain aneurysm?
But enough was enough. This wasn’t normal. The pain was unbearable. I just had to go to the Emergency Department.
Visiting The Emergency Department During Covid Lockdown
As we were in the middle of our lockdown in Sydney, covid was at the front of everyone’s mind in the Emergency Department. Upon arrival screening, the reception staff detected I had a fever and so I had to be put in the ‘?covid’ (red zone) of A&E until a negative covid test came back. It took 2 hours until I received my negative test.
I thought as soon as the covid test results would come back negative that things would move a bit quicker. But it ended up being 3 hours before I received any pain relief as the team was short staffed. I was in absolute agony. But I had no energy to cry. When I finally got the IV fluids and IV morphine it didn’t even make a difference. The team had to give me 3 rounds of IV morphine before any pain started even subsiding remotely – they couldn’t believe I could still feel the pain even after all the morphine I was on.
It was 6 hours into my A&E admission that I received a CT Head scan (to check for a bleed on the brain). Of course it was a huge relief there was no bleed. But then what could it be?
Spending 20 Hours In The Emergency Department
The A&E team believed I had Viral Meningitis and wanted the Neurology team to admit me as an inpatient. Bad timing on my part though. As it was around midnight on the Saturday night at this point, I would have to wait until Sunday morning until the Neurology Consultant was in – as of course he had to examine me before admitting me to the ward as the diagnosis wasn’t confirmed.
So there I was in the Emergency Department hooked up to my painkillers and fluids, with the staff telling me I’m going to be there for many hours still so I may as well try and get some sleep. But trying to get a good night’s sleep in a busy Emergency Department certainly isn’t easy!
When 8am came, the Consultant Neurologist paid me a visit. He did lots of neurological reaction tests on me, and then said I was going to be admitted to the Neurology ward and that I would be there for some days or weeks. He too suspected I had meningitis and that the intense pain in my head was because my brain had suffered an injury as it was being compressed due to the swollen membranes around my brain.
We would however need to do several more tests and scans to get to the bottom of it. The Consultant Neurologist was an incredibly kind man and I felt safe and very grateful that I would be under his care.
I just had to wait for a bed to become available on one of the Neurology Wards, so I ended up in A&E for a total of 20 hours: from 5pm Saturday evening until 1pm Sunday afternoon. When the hospital porter came to transfer me, despite still being in a lot of pain I was delighted to be out of the Emergency Department. It was just so loud for my head and my body just really needed some rest.
Getting Admitted To The Neurology Ward – My Meningitis Story
I was very fortunate to have my own private room and en-suite on the Neurology ward. It really made all the difference having that space to myself to rest, especially seeing as my boyfriend wasn’t allowed to visit because of the lockdown rules. The staff on the ward were so kind, and as I was getting regular pain killers the pain got a little bit less bit by bit.
On my second day in the ward I headed back down to the Radiology Department for an MRI brain scan, which ended up showing an incidental aneurysm on my left Internal Carotid Artery.
Incidentally Finding A Brain Aneurysm
That was definitely a shock. I still hadn’t got a diagnosis of meningitis, yet I had been told I have a brain aneurysm. Brain aneurysms are often referred to as ‘silent killers’ as they often show no signs or symptoms until the aneurysm bursts – and the patient has a very low rate of survival. Thankfully my aneurysm was unruptured, but I basically had a ticking time bomb in my head waiting to explode. All of a sudden meningitis seemed like the least of my problems.
As I came from a medical background – in fact I would regularly work in the operating theatre to help treat aneurysms, I knew exactly what I was dealing with. I asked the doctors to show me the MRI report and to know the size of the aneurysm – which is very important for patient management.
They told me not to worry as my aneurysm wasn’t dangerously large, but that I would need to stay under their team and to have a repeat MRI scan in 12 months to compare the size of the aneurym. If the brain aneurysm has grown by even 1mm I would be referred to vascular surgery to coil or clip the aneurysm – brain surgery basically.
Being diagnosed with an aneurysm was incredibly hard to get my head around and it worried me a lot. I still felt so young, so healthy, so full of life.
Diagnosed with Meningitis with a Lumbar Puncture – My Meningitis Story
So back to the meningitis. Several days later I had a lumbar puncture (spinal tap) which would confirm whether I definitely had meningitis, and how I had got it. The lumbar puncture involves a huge needle going into your lower back – like an epidural. This needle releases the pressure and extra fluid in my CSF, which would then ease my headache as my brain wouldn’t be so compressed.
We got the results back a few hours later and the lumbar puncture confirmed my viral meningitis. However, rather unusually, the results were unable to conclude what had caused my meningitis. There was no evidence to suggest it had come from mosquitos, enteroviruses or any of the other usually suspects that cause meningitis, which was strange.
The lumbar puncture wasn’t painful – as usual it is the local anaesthetic needle beforehand that is more painful! I was so lucky that the Doctor performing the lumbar puncture had actually also had meningitis the year before, so he knew exactly how I was feeling both emotionally and physically.
If you’ve had an epidural, a lumbar puncture feels very similar – but if like me you haven’t, the best way to describe it is like you can definitely feel pressure and prodding around in your back. The odd time it would really hurt when he pressed against a nerve, and up until a week afterwards I was getting intense nerve pain down my coccyx but luckily it subsided.
After the lumbar puncture I started to get better quickly and the doctors were really pleased with my progress. I was still very lethargic, but I stuck to the bare minimal painkillers and once the doctors were happy with all my neurological signs I was able to be discharged.
Recovering From Meningitis – My Meningitis Story
The doctors had warned me it would take several weeks or months after discharge for me to recover fully. My brain had gone through a traumatic injury and needed time to recover. The doctors told me I would get fatigued quickly and to not push myself.
I was always someone who pushed myself in the past, but my health was my priority and so I took it easy over the following months, often having naps just to get through the day. If I ever tried to do too much work or physical activity my brain used to hurt, so I really learned to listen to my body.
Neurology Check-Up – How Meningitis Still Affects Me Now
A few weeks after I was discharged from hospital I had my check-up with the Consultant Neurologist. At this stage, as expected I was still incredibly fatigued each day and needed plenty of rest. The doctor was pleased with my progress regardless, and we also discussed the care plan for my brain aneurysm.
After having time to come to terms with the fact I have a brain aneurysm, I was glad I was already under the Neurology team and that it had been found incidentally. Some people may think it is better to not know you have an aneurysm, but at least by knowing it is there, the team is monitoring it, and I am doing everything I can to prevent it from getting bigger, such as regular exercise and healthy eating.
I would rather live knowing I have a brain aneurysm and that I will have brain surgery to eliminate it one day, as opposed to not know and then just drop dead in ten years time because it has burst.
6 months later, I still get fatigued a lot quicker than I used to, and there’s no way I could go back to working as a Flight Attendant that’s fur sure! I definitely need regular sleep every night. In addition, every couple of weeks I will get a bad headache and have to sleep it off for a few hours. Apart from that, the meningitis hasn’t drastically affected my life and I am incredibly fortunate compared to a lot of other meningitis survivors.
I was incredibly grateful for the support of the Neurology Team at St Vincent’s Hospital in Sydney where I was teated, as I felt there wasn’t much support or guidance on the internet for meningitis survivors, which did make me feel alone at times.
My Meningitis Story Summary
My meningitis was fairly mild compared to a lot of other people, and unlike many others I have been able to make an almost full recovery which I am so thankful for. Nevertheless, it was an absolutely awful experience, but hopefully my meningitis story will remind you that you should never feel silly to go to the hospital if something really doesn’t feel right. Just because you are ‘young’ doesn’t mean your health is always guaranteed. Look after yourself as best as you can, always reach out if you need help, and know that you are not alone.
Also take your time to educate yourself about meningitis. I had previously thought meningitis was something only children got, and it always came with the classic meningitis bruise we all know about. This is not the case! There are several types of meningitis and not all will produce the bruise. And if you wait until the bruise arrives it can often be too late. Patients don’t always get the classic stiff neck too – I didn’t really experience that at all. Meningitis can be treated if you get medical help quick enough. Don’t leave it too late.
How You Can Help Meningitis Survivors
If you would like to make a contribution to help support research and spread awareness about Meningitis, click on this link to donate to the UK Charity MeningitisNow.org. Any donation however big or small will help to make a difference.