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Holly W’s story

20th October 2022

Holly started to feel ill in February this year with a headache. Her symptoms developed to include neck pain, vomiting, a skin rash, ataxia and photophobia

Viral meningitis case study Image generic

The 35-year-old, from Weston-super-Mare in Somerset, went to hospital, where she spent a month while doctors investigated her meningitis.

Thankfully she’s now home and back to her normal life, albeit with some after-effects. She tells her story here.

“I had a headache that wouldn't go away for about a week, and then just felt awful and unable to do any tasks. I went straight to bed and 24 hours later I had a rash (which did blanche) and started vomiting,

“I knew I needed IV fluids as my urine volume had reduced and I was just vomiting any water. I became ataxic and had a friend drive me to A&E,

“I was lucky and didn't have to wait too long before I was admitted and triaged. They initially gave me paracetamol and then started antibiotics once the clinician had checked me over.

Headache got worse

“I became vestibular (causes dizziness and balance problems) and photophobic. My headache got worse and my rash was on my legs, stomach, back, chest and arms. I was admitted and had two lumbar punctures, blood cultures, MRI and a CT at the first hospital.

“They were confused as to what had caused my meningitis, as it was more severe than a ‘typical’ viral meningitis, but nothing was showing to indicate a bacterial cause.

“I deteriorated one night and had a few partial seizures, either febrile or due to the inflammation. It left me with very slurred speech, which I didn't realise until I asked the nurse for help as I’d just had a seizure and she couldn't understand me and walked away. I presume she thought I was too tired to talk.

Referred to neuro specialist

“In the morning they realised I couldn't speak properly and referred me to a neuro specialist hospital. They repeated my MRI, did another three CT scans, another lumbar puncture and tested me for multiple zoonotic diseases (a disease transmitted from animals) as I work with animals.

“I also have two autoimmune diseases, coeliac and palindromic rheumatism, which I was only on hydroxychloroquine for. This also stumped the clinicians as they wanted to make sure I wasn't immunosuppressed or that it wasn’t my immune system attacking my meninges.

“After a month in hospital I finally got to go home and had another month off work. My speech got better within a week and is nearly normal now, I still slur the odd sentence, but I am lucky to have been left with no lifelong after-effects. They never found the cause of which virus it was and all the other myriad of tests came back negative thankfully.

Son helped me recover

“I have a year and a half old son, who I didn't get to see for a month and my partner and my mum had to manage child care between them. I think having to move and bend down for my son helped me to recover from my vestibular symptoms more quickly.

“I just thought I would share my story for those people like me who don’t fit the typical 7 to 10 day viral meningitis category, I was really unwell and they had no idea what my body was doing. The even discussed placing a shunt, as they thought I had too much fluid on my brain.

“Luckily, when I was referred, they reviewed all my history and re-reported my MRI as normal. Just in case there was anyone else out there like me who wasn't critical with bacterial but were very unwell with viral. And to know they are not alone and it was significant what they went through, even though it was ‘only’ viral meningitis.

“I haven't had anyone follow up, but I'm looking to get my pneumococcal vaccine this month and some talking therapies to help make sure I have dealt with what happened to me and not accidentally buried it!

“I'm back to work and normality which is great, I find it hard to focus as I used to and also I'm much more sensitive to light and noises now. But I'm lucky in that it hasn't affected me or my family further.”