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Ipek's story

16th September 2021

An excruciating headache, stiff neck, light sensitivity, vomiting and dizziness led to an initial diagnosis of viral meningitis for Ipek. The new mum, from Essex, spent her 30th birthday in hospital, but then her diagnosis was changed to bacterial meningitis as her condition deteriorated

Ipek's story

Fortunately, she responded well to treatment, although she and her family are still dealing with the effects three months after leaving hospital. She tells her story here.

“I had three days of headaches and sporadic dizziness, until on the night of Saturday 30 May it turned into severe, intense pressure and excruciating pain in my head as well as vomiting and severe neck stiffness. Any slight strain, even to clear my throat, felt like something was going to snap in my head and I would be gone.

“We avoided calling an ambulance that night to prevent any disturbance to our sleeping 7-month-old and I took paracetamol to try to sleep it off. I still thought it was probably a severe migraine. My father-in-law was staying with us and was using cold wet towels on my head.

“We called 111 and they told me that they would have a doctor call me back. Although 111 asked the questions, looking back the only thing that didn’t flag up to them as meningitis or qualify it as an emergency, was the lack of a rash on my body.

Straight to A&E

“It got to 8am and it was worse. I couldn’t look around and was barely able to move. The doctor called and we went to the out of hours GP (as it was a Sunday) and he was concerned that I had a bleed on my brain, so sent us straight to A&E.

“I ended up collapsing in the waiting room, alone, as due to Covid my husband couldn’t be with me.

They immediately took bloods and found a severe infection present. My CRP levels were 147, with the normal range being below 10, and I was told that they were concerned it was meningitis. I remember the doctor’s eyes full of concern. Understandably, they were more focused and rushed on starting treatment asap and referring me for tests than thinking about how I had taken that news.

“They immediately took me down for a CT scan and prepared a lumbar puncture for afterwards. They also started me on fluids, anti-virals, antibiotics, pain relief and anti-sickness straight away.

Again, being alone this was terrifying news to hear and I wasn’t quite sure how to tell my family. I didn’t expect to hear meningitis, as I wasn’t the right ‘candidate’ for it as I had only ever heard of young children who’d had it.

Didn’t want anybody to worry

“I didn’t want anybody to worry, I called them and let them know and told them everything would be fine as they suspected it was viral and told me it doesn’t need much intervention. My husband stayed firmly in the car park outside to provide reassurance as best he could whilst not being allowed in. Our little boy was being looked after by the grandparents and family at home.

“They admitted me, and luckily at this point in the evening it was visiting hour, so my husband came in and was thankfully able to be with me during the lumbar puncture. They sent it off for testing and would have the results for me by the morning. I was placed into isolation and had to stop breastfeeding my son indefinitely, not allowed to see any of my family and tomorrow was my 30th birthday! At this point however I was so unwell I couldn’t even cry, talk or move and so lay there waiting for the medication to do its thing and my pain to go away. Eating was also impossible as everything I took wouldn’t stay down. I slept as much as I could.

“On 31 May I received the diagnosis of viral meningitis. They expected to discharge me in three days. In the meantime, my symptoms did not reduce and got worse, developing a high fever every day.

Actually bacterial meningitis

“On 2 June the doctors came back and told me it was actually bacterial meningitis. Apparently, I had 70% polymorphonuclear cells in my spinal fluid. I vaguely remembered that this was the one you didn’t want, not that any form of meningitis is particularly desirable to have. I was terrified. The doctor told me that they were going to keep me in for the full course of the antibiotics, pain relief and monitoring as my brain was basically being assaulted, and they wanted to ensure there was no damage to my brain and the meningitis was being controlled. They moved me to the stroke ward due to being a neurological case.

“I remember that I kept asking with every symptom I had, "Is this normal?" "Should I be worried?" The answer was always, "It can take time for the medication to kick in". The nurses were incredibly lovely and I couldn’t fault their care.

“My knee at this point thought it would join in the fun and decided it wanted to swell and cause some discomfort. They did x-rays which came back fine. To this day we’re still unsure why this happened but it reduced after two days.

Visit every single day

“My husband ensured he would visit me every single day I was in there, even if time limited and PPEd up to his eyeballs. It was the only thing keeping me going day to day. I could barely speak to anybody on the phone during the first few days. My husband would pretty much just watch me lay there. I’d managed to see my son on Facetime for a few minutes but it would be a struggle with the pains. My heart was hurting being away from him, as I had never been separated from him for a minute. I was devastated and missed him immensely.

“Coming out, I learnt that the first two days were incredibly difficult for everybody as he would refuse formula and the bottle, and then just cry himself to sleep. He ended up being syringe fed formula for two weeks till we were able to get him to drink it from the bottle.

“I spent 10 disturbed nights and 11 long, mentally draining days in hospital. I had ups and downs but after about four or five days an improvement was starting to show with my daily blood tests and vital checks. I was going to sleep needing one less dose of pain relief. I no longer needed anti-sickness medication and could have the blinds open more and more as my eyes were more comfortable. My back and neck were still hurting but this probably had something to do with the hospital bed too!

Less and less medication

“I was able to shower and move about more. I could see in the nurses' and doctors' faces that they were relieved and very happy that they were needing to give me less and less medication and checks as the days went on.

“Coming home on 9 June (the date our son turned 8 months) was the biggest relief of our lives. I was safe, with minimal impact from the meningitis and incredibly emotional. I still am.

“It has been three months since leaving the hospital. I frequently experience headaches, tiredness and some fuzziness in my head is the only way I can think to describe the feeling. I can’t exert myself too much as it takes its toll. I am yet to be officially discharged, and think this may not be for a while yet and will be going for an MRI to check that there was no damage done to any part of my brain.

"We are still dealing with the psychological effects of this.

“Meningitis Now have been the greatest source of information for me and also the forums/stories have helped me through some moments. The enormity of it all still hits us and things could have been so different had I not been checked over when I was. There are still triggers that make me emotional and I get panic attacks when I go back for my check-ups. But I am also so grateful to the doctors and nurses who got me through it relatively unscathed. For that I feel so lucky.”