Headaches that feel like flu — but can leave you blind
AS A nurse, you’d think dianne Woodford was better placed than most to spot any illness she might be suffering. She had, after all, been trained to pick up on even those barely visible signs that most of us would dismiss as minor.
But five years ago — when she was 38 — she discovered she was as vulnerable as the rest of us. For on August 22, dianne was struck down with bacterial meningitis, the more severe form of the infection that can damage the nerves and brain.
Worse still, she dismissed one of the standard symptoms of the disease — a dislike of bright lights — thinking it was just a headache. But the disease cost the mother of three her sight.
‘I remember getting home at lunchtime with a throbbing pain in my temple and thinking I just needed a quick sleep to get over it. I’d felt pretty shabby all morning and thought I was coming down with the flu,’ says dianne who lives in Beverley, East yorkshire, and has three children: Ella, 21, Joe, 19, and Jamie, eight. She and her husband separated seven years ago.
‘Jamie was just a toddler at the time so I put him to sleep and took a couple of painkillers. I lay on the sofa, and asked Ella to wake me up as soon as Jamie stirred.’
But to her daughter’s horror, when she went to wake her mum a few hours later, she was unconscious.
‘It was hideous for Ella,’ says dianne. ‘She ran out to get one of our neighbours, who rang for an ambulance. The paramedics administered antibiotics immediately, then took me to Hull royal Infirmary. But I don’t remember any of it — I was in a coma for the next 24 hours.’
After a brain scan and lumbar function test (where the spinal fluid is tested to confirm suspected meningitis), doctors did all they could to fight the infection in dianne’s body and bring down the inflammation of her brain.
Fortunately, seven hours after arriving at the hospital, dianne started to show signs of improvement. To everyone’s relief, 24 hours after her arrival she regained full consciousness.
But this good news was clouded instantly.
‘ When I came to the next morning, I felt absolutely awful — very tired and mentally foggy — but the real problem was when I opened my eyes: everything stayed blurry.’
dianne told the nurses, who immediately alerted the doctors. They suspected the meningitis infection might have affected her eyes, but assured her that her sight should improve within a few days.
However, after a detailed examination of her eyes the next day they realised the damage was worse than they thought.
doctors told dianne the bacteria had lodged in the delicate blood vessels that supply the retina — the layer of light-sensitive cells at the back of the eye.
The immune system had tried to clear the infection, but this had triggered inflammation and bleeding, which had permanently damaged the cells in the retina.
DoCTorS said they would operate to try to stop any further bleeding, but the chances of her vision returning to normal were minimal.
‘It was shocking news to take in,’ says dianne. ‘ The last thing I remember, after all, was going for a quick nap on my sofa.
‘I racked my brain as to how the hell I could have caught it — if I’d been in contact with anyone who could have had it — but there were no answers.
‘on the face of it, I tried to be strong, particularly when my children visited me. But I’d be lying if I said that there weren’t dark times. This wasn’t the future I wanted.’
despite 12 operations, doctors were unable to save dianne’s sight. She is blind in her right eye and has only 5 per cent vision in her left, enabling her to see light and shade, but no depth perception. She is registered blind and relies on a guide dog.
Adult meningitis is far more prevalent than many people think. ‘While most meningitis publicity is aimed at catching the disease early in children, around one-third of cases every year — about 1,500 people — involve those over the age of 18,’ says robert read, professor of infectious diseases at the university of Southampton.
Catherine Fougere-masters, from the charity meningitis uK, adds: ‘What people don’t realise is that in adults, catching the disease early is even more important because the after-effects tend to be far more severe.’
Around one in four people struck by the disease suffer long-term after- effects, including hearing loss, neurological complications (such as epilepsy, concentration and memory problems), amputations and kidney failure. Sight is affected in one in 20.
The bacteria that trigger the infection often live harmlessly in the nose and throat. Indeed, approximately 10 per cent of us carry these bacteria in this way at any one time (compared with up to 30 per cent of those aged between 14 and 24).
The bacteria becomes dangerous only when it moves from the nose and throat into the bloodstream (why this happens in some people is not clear).
you can catch it from someone else through inhaling infected droplets after they’ve coughed or sneezed or via saliva (through kissing), says ms Fougeremasters. However, as the bacteria aren’t transferred as easily as the viruses that cause colds or flu, prolonged or close contact is usually required.
once in the bloodstream, the bacteria can travel to the lining of the brain (the meninges) and cause infection and inflammation; this can occur within just a matter of hours.
In particularly bad cases, septicaemia, also known as blood poisoning, occurs when the bacteria multiply in the blood and release damaging toxins. But it’s when the initial symptoms — such as fever, headache, lethargy and joint and muscle pain — start to show that the differences between child and adult cases become apparent.
‘ If a child or baby suffers from, say, a fever, mothers and, indeed, paediatricians are so alert to a possible problem that alarm bells start ringing,’ says Professor read.
‘This is even more the case if the disease moves up a gear and the headache becomes severe and a stiff neck or dislike of bright lights develops.
‘But in adults it’s generally the complete opposite.
‘Being adults, they tend to dismiss any symptoms, thinking it’s flu or something that can be cured by a couple of paracetamol and a good night’s sleep. Even if they do take themselves off to the doctor, symptoms are often so generic that it can easily be attributed to something far less serious.’ But the sooner it’s treated, says Professor read, the less likely there are to be serious complications. ‘The adult immune system tends to react far more aggressively to the infection. It’s thought this occurs because adults tolerate larger numbers of bacteria in the bloodstream before their immune system kicks in. And when it does, the response is very powerful. ‘This leads to the release of chemicals called cytokines which, though they help cells of the immune system “talk” to each other, also have the side-effect of producing general inflammation in critical parts of the body, such as the brain as well as blood vessels throughout the body.’
dianne says: ‘ Part of me was angry that I could probably have stopped this from happening in the first place.
‘In retrospect, I knew things weren’t quite right that lunchtime — I even had the stereotypical meningitis symptom of not being able to look into the light — but I just didn’t do anything about it.’
Though dianne was determined for things to be normal for her children, it was difficult.
‘They couldn’t leave things lying around on the floor, for instance, in case I tripped.
‘And though I didn’t want to at first, I eventually put a bell on Jamie’s jumper, like a dog, which I hated doing.
‘But he was just a toddler at the time and it was the only way I could be sure of where he was.’
HArdEST of all was the loneliness, she says. ‘There was such a feeling of isolation, of going through it on my own.
‘I could no longer work, couldn’t drive and knew no other visuallyimpaired people. As a result, I remained stuck in the house, aged 38, wondering how the hell I was going to cope.’
A year after her illness, dianne decided that there must be others in the same predicament and set up a charity, VisAbility, giving the visually impaired a chance to not only meet others of the same age, but also get out and enjoy a host of activities with like- minded people, including archery, sailing, rifle-shooting and art classes.
Four years later the charity is going from strength to strength.
‘It’s been a long old haul,’ says dianne. ‘ Life is very different — sometimes extremely challenging — but at least I feel I have a life, which I didn’t necessarily have at the beginning.
‘And a huge part of that is down to running the charity. It helps make some sort of sense of my sight loss.’
FoR more information, visit meningitis.org.uk; guidedogs.org.uk.