Iain Johnston's story

I fell ill with meningitis in 2009 and did not display any classic symptoms, I had no rash, no stiff neck, no aversion to light, so I thought it may be helpful to talk about my experience in the hope of alerting others to the various symptoms of this disease.

One Friday I had flu-like symptoms, aching all over, headache etc but just took some paracetamol and shrugged it off. On the Saturday I felt much better, so thought nothing of it until on the Sunday morning when I went out to mow the lawn and really struggled, could hardly walk, was sweating profusely and just felt very unwell. I actually finished the lawn and then came inside and lay on the sofa for a couple of hours before my wife and I went out in the afternoon to hear our daughter playing in a big band concert. By this time I was feeling a bit better and so we set off.

During the first half of the concert I remember feeling sleepy and by the interval I was dozing off (much to the annoyance of my wife) during the interval my vision and hearing became very distorted and fragmented, and I started to feel confused and disorientated. I remember saying to my wife that I didn’t feel well and thought I might need to go to hospital. As you would expect in such a situation (a room full of 150 people), she suggested that I just go and sit outside, and that is the last I remember until waking up in hospital.

Apparently what happened next is my wife went to help me leave the room and I collapsed on the floor, flailing my arms and legs and making a lot of noise. An ambulance was called and fortunately there was one only a few hundred yards away refuelling and which arrived within a couple of minutes. By this time I had become very agitated and was flailing my arms and legs and trying to fight off the paramedics (I am not a physical type of person normally so this was very abnormal behaviour). I was also apparently unresponsive to anyone and did not recognise my wife or daughter. I was packed off in the ambulance and taken straight to A and E at the local hospital – with the car keys in my pocket, so my wife had to call a taxi to get to the hospital!

At hospital the agitation and disorientation continued and I had to be restrained by the A and E staff while they undertook their investigations, which was all a bit scary for my wife and daughter. I had also apparently lost my speech and although I was making lots of noise, shouting etc, none of it was words, it was just gobble-de-gook,(prompting one of the medical team to ask my wife if she could translate!). I had also developed severe diahorrea and was also vomiting. The consultant and medical team, however, quickly spotted that the cause could be meningitis and I was quickly put onto intravenous antibiotics.

After waiting several hours until things stabilised, I was taken for a CT scan of my brain. By this time I was beginning to regain consciousness as I can remember talking to my wife in what I thought was a perfectly lucid way, but was apparently still gobble-de-gook. It took until well into the next day for my speech to return, although it remained slurred for a bit longer and I had problems remembering the words I wanted to use for quite some time afterwards, or the names of objects etc.

I spent the night in high dependency and remember feeling very disorientated and had no idea where I was, before being transferred to the infectious diseases unit the next day. There then followed tests such as a lumbar puncture, MRI, further CT etc to confirm the diagnosis and I remained on intravenous antibiotics for a further eight days and was in hospital for almost two weeks.

After leaving hospital I had periods of severe dizziness, weakness in my legs and headaches resulting in a further collapse a few weeks later whist working in Oxfordshire, which resulted in an overnight stay in hospital there. It was after this that the neurologist who had been seeing me whilst in hospital did some further investigation and discovered that I had also developed HaNDL Syndrome (a rare extreme form of migraine). Fortunately this condition only lasts a few months and was the only after effect, so I feel very lucky indeed.

As with many other people, I did not associate any of my symptoms with meningitis, as I had no rash and didn’t really think it affected grown men and it all happened so quickly. I found reading the other stories on your website reassuring and it made me realise that there are a lot of people who get varying symptoms, so I thought I would share mine in the hope that it helps others realise some of the other things to look out for.

Since this time I have suffered after effects which include pain in hips and legs, numbness in limbs and face, headaches, tinnitus, disturbances to my hearing, vision and speech, lack of balance, difficulty in searching for words and processing sound. These vary in intensity and do not necessarily all come together, but can cause problems.

Iain Johnston
February 2012