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Stephanie's story

19th October 2019

Lying in a strange hospital bed, alone and terrified, Stephanie really didn’t know what was going to happen to her. It took a full six days of tests until she was finally diagnosed – with viral meningitis

Stephanie's story

But even that wasn’t the end for Stephanie, 30, from Washington in Tyne and Wear – what she hadn’t counted on was how debilitating the after-effects would be.

For Stephanie, it was only when she found Meningitis Now that she was able to start the long road to recovery. She told us her frightening story.

“One Saturday in July 2018 I was not feeling myself, I had a mild irritating headache, getting through the day on paracetamol. Around 8pm I was exhausted, the pain relief was not really working so I took myself off to bed.

“I was woken at about 1am with a more intense pain in my head, no way could I sleep through this. Off I drove to the nearest garage for some stronger medication. Back home, though, the pain just would not ease. I tried to watch the TV for distraction, but I could not focus and the screen was so bright it intensified the pain.

“By this point I was beginning to worry, my neck was aching and I had a pin-prick rash on my stomach. My first contact was my mam of course, mams know everything right? She advised me to ring 111, which I did and they instantly recommended that I got to hospital immediately.

“The soonest ambulance however would be a couple of hours so off I went to pick my mam up and we went to A&E. At hospital the waiting times were over two hours long and during my wait my pain got worse and worse: I was gripping my head in my hands, trying to find a relief.

Screaming in pain

“From my initial assessment, I spiked a temperature and my symptoms signalled something was wrong. Due to a family history of aneurysms, we suspected that may be the cause. I was sent straight for a CT scan, then prepped for a lumber puncture - the most invasive medical procedure I have ever experienced. I remember lying on the bed screaming in pain, my head felt like someone was hammering it so hard; I then began to vomit and I still could not tolerate light.

“My mam unfortunately had left me by this point as three months previous I lost my brother in a RTA, and this was bringing back too many memories. I felt so alone and scared.

“The doctors were quite quick at returning with my results; however, they entered the room wearing masks. I remember now the feeling I got, I genuinely thought this was the end for me too and the first thing I asked the doctor was, "Am I going to die?" He reassured me hopefully not as I had came to hospital quickly so they could treat me asap.

“Everything seemed to happen so fast, I was sent to an isolation room, hooked up with antibiotics and left to pray I would be okay. The first day or two was horrible, I could not even sit up in bed, and visiting the toilet or trying to get washed were such difficult tasks. My five children were in bed the night I left, they woke up to no mammy and were not allowed to visit me for at least the first three days of antibiotic treatment; I missed them so much. I could not get the thought from my head that this was it, never again would I see them, their mammy was going to heaven.

Big panic attack

“I remember lying in bed, watching out the window, praying up to the sky, asking my brother for strength and that it was not my time yet. During my six days in hospital I was sent for further tests including an MRI to check for a bleed on the brain as I was not showing signs of recovery. I was sent there on a chair whilst gripping my head in pain, then as soon as I reached the reception area I got out and lay across the waiting chairs and magazine table; I could not sit up, the pain was too much. I then went on to have a big panic attack whilst in the machine as I felt trapped, having my head secured down.

“Eventually, on day six, they allowed me to go home, with some small advice of regular caffeine intake and lots of water to ease the headaches. I was diagnosed with viral meningitis. However, not once did anyone warn me of any after-effects.

“I struggled for a couple of days with intense headaches, I even took myself back to hospital for help for them. Then a couple of days later I could not move, the pain in my lower back (lumber puncture area) was horrific, one minute I was eating my tea, the next I was paralysed on the floor, screaming out in pain. This resulted in an ambulance call-out and I was admitted back to hospital where I spent another night and had a further MRI scan. Again, I was discharged with little advice, I started to get the impression no-one really knew much about meningitis. I turned to the internet and social media for help and support, forums for meningitis survivors - and this is when I first found Meningitis Now. Within a few weeks a member of the team came out to see me and it was such a relief to finally have someone to talk to, someone who could understand my experience and my after-effects.

“It’s such a relief to have people I can turn to, who will listen and who understand my experience and can offer advice and support. Meningitis Now have given me more help than my own GP has been able to.

"I have now signed up to run the Great North Run 2020 to raise money for Meningitis Now and also raise awareness online and in my local community of the signs and symptoms and after-effects and how anyone of any age can be affected. My fundraising page is https://uk.virginmoneygiving.com/StephanieMcintyre."