Lydia W's story

3rd December 2018

Teenager Lydia, from Manchester, was preparing to sit her GCSEs in April 2017 when she experienced the worst headache of her life. Within days, she was in A&E. Lydia, 16, tells us what happened next

Lydia W viral meningitis case study

“The week before I was admitted into hospital I had the worst headache of my life, which didn’t go away that whole week. The headache started on the Saturday a week before, and on the Wednesday, I went to the doctors with my dad."

“They did some tests and said if it continues, to come back. As I was leaving the doctors, my legs started to tingle as well as my arms and as I walked, my toes began to drag along the floor. The whole left side of my body went numb and tingly and my smile only formed on the right side of my face. I couldn't make a fist with my left hand either. We went straight back to the doctors but by the time we got in to see the doctor again, it had stopped, and I was pretty much fine again. We never really did find out what happened that day, but I've slowly come to the conclusion that it was probably the pressure of the CSF (cerebrospinal fluid) on my brain where blood on the brain normally causes strokes."

“On Sunday morning, I woke up and went to the bathroom as normal. The headache was still there but had gotten slightly better over the past couple of days."

Collapsed

“All I remember from Sunday is collapsing on the bathroom floor and trying to get up, but my arms would just drop straight back down to the ground. I also remember my dad knocking on the door saying I'd been in the bathroom for an hour and he was going to have to come in and check on me. I then remember the paramedic coming into the bathroom and saying her name was Debby but apart from that, I remember nothing from the time I collapsed (which was about 10am Sunday morning) until I was in hospital at 1am the next day."

“I have been told by family that I was shouting as if I was in pain when the paramedics were trying to get me downstairs to the ambulance and was just shouting my sister's name. Before the paramedics came, my sister was showing me fingers and saying how many are there and I would say the complete wrong number. When I got to the hospital, I was taken straight into resus where I had loads of doctors trying to figure out what was wrong with me. The doctor would talk to me and ask me questions, and I would apparently just roll my eyes or not answer. I also didn't recognise my family and thought my sister was my mum at one point."

“I had a CT scan and was then transferred to a ward and then, later in the night, transferred to ANU (acute neurology unit), which is when I came around and can remember from again."

Like you see in the movies

“The first thing I remember after that Sunday morning when I collapsed is that I was in the hospital bed being pushed to the ANU ward and just saw the lights going past on the ceiling. It was like what you see in movies and I remember thinking that I was dreaming. As we got into the room, I began talking to my mum again and asking her questions about what happened and where I was etc."

“Throughout my stay in the hospital, I had a total of two MRIs, a CT scan, three lumbar punctures, a chest x-ray and over two hundred IVs with eight different cannulas (not all at once, changed throughout the 16 days I was in hospital). At first, doctors didn't really have any idea what was wrong with me, but later diagnosed it as viral meningitis. In the last couple of days, the team that was looking after me changed from the medical team to the neurological team and I was then told that I may have actually had something called Handl Syndrome. This apparently is so rare that one of the doctors said that it would be better for us to Google about it rather than them tell us what it is because not much is known about it."

“Whilst I was in the hospital, I was on all different kinds of anti-virals and antibiotics, including one that made me vomit. I was asleep one night after vomiting so I was sitting up, and I woke up needing the toilet. As the bars were up, I couldn’t get out myself and go to the toilet. My mum had stayed with me the entire time I was in hospital and was sleeping on a mattress on the floor next to me, so I started saying “Mum”. When she woke up, I remember saying to her, "I need the toilet" and rattling the bars on the side of the bed. I kept saying it and my mum just looked at me and said, "Lydia, you aren't making any sense". I kept saying it again and again, getting more and more frustrated as I couldn't understand why she couldn't understand me. Eventually she said, "Do you need the toilet?" and it was like I snapped out of whatever was happening as soon as she said that and I said, "Yes I need the toilet!" As soon as my mum said that to me, I was perfectly fine again, and was aware of my surroundings and talking normally again. Turns out that as I was saying "I need the toilet", I was actually saying "I bite my sight" over and over again. I could hear my voice saying "I need the toilet" but I was apparently saying "I bite my sight"."

Hospital staff were lovely

“I lost quite a bit of weight in hospital - I wasn't eating much, as I didn’t have much of an appetite. The hospital staff and doctors and nurses were all so lovely to me the whole time I was there, always being so helpful and answering any questions I had, as well as making me laugh and cheering me up when I was scared."

“After I got out of hospital, I had a phased return to school. For one week, I stayed home every day and then for another week I just did half days and would come home at lunch. I then had my GCSEs to do and had lost a whole month of revision time in hospital, and just before and just after as I didn’t have the energy or focus to revise much, so just did very little bits every now and then."

“I worked as hard as I could when I got back to school, and this made me very stressed as well, which lead to me getting costochondritis - which is the inflammation of the rib cartilage - where I would be doubled up in pain unable to move or do anything. These episodes of pain would last about ten minutes each until one day I had one that didn’t stop and went on for at least 25 minutes."

“My parents called an ambulance as I couldn't get up to get in the car to go to A&E. When the pain eventually subsided, we cancelled the ambulance and went in the car to A&E, where I revised for the chemistry exam that I had the next day whilst waiting to see the doctors. I had an ECG and was then taken down to the children’s ward as it was much quieter, and I was then told that I had costochondritis which can last up to a year. After leaving A&E that night, I never had an episode of pain like those again but would still get rib pain occasionally, and still do now, even though it has been 18 months or more since I was diagnosed with it. Since recovering from my illnesses, I do feel I have more headaches than I used to, and I get tired more easily but thankfully I haven't had any severe long-lasting after-effects."

“I'm so incredibly thankful and grateful for every single person than helped me along the way: whilst I was in hospital and even after I came out of hospital, including the hospital staff, my school and my family and friends.”

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