Meningitis in your words

Charm Tinn's story

  • Location: England
  • Categories: Viral
  • Age: Adult 25-59
  • Relationship: Self
  • Outcome: Recovery with after effects
  • After effects: Memory loss
Charm Tinn

It was the beginning of March 2012 that I began to feel unwell. The first symptoms were extreme aches specifically down my spinal cord and in my neck. I also had fever, shivering and was very tired and lacking in energy. This progressed to strong, painful headaches, facial pain, especially around my eyes and an aversion to light. At this point I had never felt so unwell and weak in my life. I went to my doctor's surgery explaining to them how I was feeling, describing all my symptoms. I was told that I had a viral infection that couldn't be treated with medication, but that I did have an ear infection which could with ear drops.

Less than 48 hours later I was in hospital. I knew something was seriously afoot. The headaches and facial pain were indescribable at this point and I had extreme photophobia. I was also very imbalanced and my breathing became rapid and short.

"At times I felt like giving up, or that my body would."

I was given a chest X-ray when the first doctor who saw me ruled out meningitis and I was discharged. Later that day I was taken in to hospital again, this time in an ambulance. I was looked at again by another doctor who did a CT scan and some neuro tests, who decided that meningitis was likely.

I was taken to the high dependency unit where the next day I was told a lumbar puncture would have to be performed to confirm meningitis for sure. They attempted this three times with a local anaesthetic. Again the pain was nothing I had ever felt before. Several nerve endings and blood vessels were hit and I felt as if I was being electrocuted. Because of this it was decided I needed to be put under a general anaethestic the next day and obtain the brain and spinal fluid this way.

That following night it was confirmed I had meningitis as I had 310 white blood cells present, where there should have been only one in my fluid. The next five days were awful and I was treated for both bacterial and viral meningitis. At times I felt like giving up, or that my body would.

By the eighth day I was told that all my results from infectious diseases were negative, but that because I had previously been treated with antibiotics for two days before the lumbar puncture was done there could be a false-negative. Because of this they would never know what caused it or whether it was viral or bacterial, only that I had meningitis. On the ninth day I was discharged and told recovery would take two to three weeks, but not what to expect. I am nowhere near being back to normal and anticipate it being months until I am.

Since being home I have found it hard to concentrate, had memory loss, muffled ears, sleep apnoea, racing heart, shooting pains down my legs, loss of co-ordination, sore and stiff neck and back, speech problems, shakes, photophobia on occasion, tics and twitches and felt depressed. I have had to speak to fellow sufferers to know this is normal and have felt that there has been no support from my doctors about what to expect or how to cope in recovery. Thankfully Meningitis Research Foundation exists and I can finally feel supported, understood and listened to.

APRIL 2012