The lack of understanding by some of the healthcare professionals she saw was really frustrating for Jane – one reason why she’s sharing her viral meningitis story.
A lack of understanding
I woke up at about 5am on March 9th 2012 with a severe headache in the back of my neck. I thought I had woken up too early and tried to get back to sleep. By 7.30am I was feeling sick and had pins and needles in my arms. Two weeks previously I had had a bad dose of flu, probably the worst I have ever had, and was off work for a week.
As there was no one at home I called a friend as I just didn’t know what to do, and she told me to call an ambulance. An emergency car arrived within five minutes, but the medic didn’t seem too concerned, thought I was having a migraine (which I have never had before) and told me the pins and needles in my arms were due to me hyper-ventilating. The ambulance arrived a few minutes later and took me to hospital. On arrival they tried to give me painkiller tablets but I felt too sick to take them, and was given morphine in liquid form. Within an hour of being in hospital I had had a brain scan.
Meningitis had not crossed my mind
Meningitis had not crossed my mind at this point. I thought perhaps it was ‘only’ a migraine, but my worst fear was a stroke due to the pins and needles and strange sensations in my arms. Throughout the morning I was kept in A&E with a string of doctors performing various tests on me. I think they all shone a torch in my eyes and asked me if the light affected me. I think, meningitis or not, if you are feeling that ill with a severe headache, a torch shone in your eyes would be uncomfortable.
They also asked me if I had any rash on my body, which I didn’t, and kept checking my reflexes which were normal. I was aware of the symptoms of meningitis, and assumed their references to light and rash were to exclude meningitis. Even at this stage I didn’t for one moment think that it would be meningitis.
When the results of my scan came back normal, they said I would need to have a lumbar puncture. It was explained to me that this would be performed 12 hours after my onset of symptoms, because if there was any bleeding (i.e. a stroke) it may take this long to show up. By mid afternoon I was moved to a ward and starting to feel a bit better.
The lumbar puncture was performed at about 7pm and I was told the results would be ready by midnight. This was a Friday, so by the evening I guess only weekend staff were on duty. Despite me constantly asking, I didn’t see a doctor or get my results until Saturday afternoon. By this time I was feeling fine and assuming I would be allowed home. I was up and about, no headache, and eating normally. The results of the lumbar puncture showed no bleeding, so it wasn’t a stroke, but my white blood cell count was high indicating an infection. I was told I needed to stay in hospital another night whilst they did further tests.
Told to go home and rest
On the Sunday morning I woke up feeling dreadful and could not lift my head off the pillow. I had a severe headache and my head felt so heavy and uncoordinated, a really strange feeling. I couldn’t eat anything and struggled to get out of bed. In the afternoon they started a course of intra-venous Acyclovir ‘as a precaution’. On Monday morning, still feeling dreadful, a doctor came around and informed me I had viral meningitis. I was told to go home and rest, and that it may take up to a month until I felt better.
A friend came to pick me up from hospital and had to double check with the staff that I was allowed home. I think she was shocked that I was being allowed home when I was struggling to even sit up in bed. Walking to her car took so much effort and I really struggled to sit upright for the two mile journey home. I remember sitting in the passenger seat and trying to put my head down as low as possible. Being upright was intolerable.
When I got home I went straight to bed and stayed there for about five days. I couldn’t even get downstairs. Every time I sat up or moved my head felt so heavy and I was dizzy and uncoordinated. I was also finding breathing difficult whenever I tried to move or do anything other than lie still. By this time I had read up on meningitis and lumbar puncture and thought that the symptoms I was now experiencing were due to the lumbar puncture, as side effects can take 24-48 hours to develop. I still cannot understand why the day after I was admitted to hospital I felt fine and then the next day felt so ill again.
Typical for viral meningitis
Over the next few weeks I gradually started to try and do a little more each day. The first time I walked down my street my head felt terrible, it felt as if my head was pulling me one way and my legs were going in a different direction (vertigo?), and with every attempt my breathing became more difficult. I could only walk really slowly and to walk to the end of my street (50m) felt like a marathon.
Although feeling so rough, I was still quite relaxed within myself and not feeling stressed or panicky. I started to do a few vestibular rehabilitation exercises for the vertigo and this did help a bit, throwing a ball and catching it, and walking down the street looking alternately at front doors on opposite sides of the street, although these hadn’t been prescribed for me. I knew about the vestibular rehabilitation exercises from my sister as she had been prescribed them for vertigo previously.
I couldn’t bear any sensory stimulation - more than one noise, i.e. a conversation in the room and the phone ringing; busy visual environments; looking around for something, and bright un-natural lighting. The first time I went to a supermarket was awful. You don’t realise how much visual stimulation there is and your eyes try and glance over everything in one go, and the lighting is so harsh. I gradually set myself challenges to go to Tesco every day and buy one thing. I had to know where it was before going as I couldn’t look around the shelves to find what I needed. It’s surprising how much harsher the lighting was in Morrison’s compared to Tesco, something you would typically never notice, but shopping in Morrison’s was so much worse.
After about six weeks I booked an appointment with a neurologist. He didn’t seem concerned, said all my symptoms were typical for viral meningitis, just give it time. I asked him if I should be referred for vestibular rehabilitation but he wouldn’t refer me, just told me to relax a bit more.
Supportive work colleagues and employer
I returned to work after ten weeks, on reduced hours, but was limited to what I could do at work. I just wanted a sense of normality. My work colleagues and company were supportive and I was allowed to work at my own pace. With hindsight I probably went back too soon and struggled with everyday tasks. After two weeks back at work I contracted food poisoning and with this a return of my previous symptoms (feeling dizzy, irregular breathing, aversion to sensory stimuli), and had another four to five weeks off work. At this stage I had to cancel a holiday to Jamaica as I knew I would not be able to cope with the travelling.
Over the next few months I gradually improved. Some days were better than others. By the end of 2012 I was beginning to feel reasonably okay, as long as I didn’t do too much and wasn’t in a very busy environment with lots of noise and bright lighting. Christmas was a busy time and I returned to work in the New Year.
The first week of January I contracted conjunctivitis followed by a throat infection. I was feeling quite ill and once again many of my previous symptoms returned and I was struggling to even walk to the doctors. It took two courses of antibiotic eye creams and a course of antibiotics to clear the infections.
Over the course of the next few months I was very up and down and had taken more time off work. I was starting to feel a bit panicky and anxious and was getting quite worked up about taking so much time off work. This became a bit of a vicious circle and the more anxious I became the worse my symptoms were. I made several visits to my GP and spoke with Meningitis Now.
I pushed for a referral for vestibular rehabilitation and was finally referred. The physio who I saw was excellent and I think she really understood what I was going through, more so than any of the doctors I had seen. She did a range of tests on me to try and provoke dizziness, but none of these worked e.g. changing direction quickly, turning around and looking from side to side. I explained to her that if I was moving in a controlled way and thinking about what I was doing it didn’t really affect me.
Problems with bending down and turning around
But I would have problems with things like emptying the dishwasher (bending down and turning around), looking around for my keys, sitting at a table with other people so I had to turn my head, flicking through a magazine so I wasn’t focusing on each word, just glancing over items. I had to do everything at the pace my head would allow. If I was walking down the road with friends I had to dictate the pace we were walking as even trying to walk at a pace somebody else set was overwhelming.
Just speaking with her was like a good counselling session (nothing to do with the vestibular rehabilitation) - to finally speak to someone who listened to what I was saying. She said there would be no point in prescribing traditional vestibular rehabilitation exercises as she could not trigger my dizziness. She recommended that whatever made me feel dizzy to try and do it little and often and as ‘normally’ as possible. I know that I had begun to move my head less and slower to minimise any dizziness. As I didn’t like busy visual images and looking around I started playing Mah-jong, which involves images of lots of busy tiles that you have to match up. I also put a very busy screen saver on my PC and spent ages just watching it, trying to ‘recalibrate’ my brain. I persevered with both of these and think they did help.
I now feel well. Some things are still a bit strange, and I think the way my brain processes certain information has changed. I’m still a bit slow looking around for things, e.g. in a supermarket I still sometimes have to stand back and look slowly for an item rather than glancing over all the shelves, and crossing busy roads that I am unfamiliar with can be a bit awkward, but on the whole I am fine.