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Subarachnoid haemorrhage and seizures: Julie's story
On the evening of 30 April 2009 (age 48) I was attending a school concert when I suddenly had a very sharp pain in the back of my head, as though I had been hit with a cricket bat. Walking back to the car with my husband I started to vomit and struggled to breathe. So this is swine flu, I thought.
I thought epilepsy was a condition where someone dropped to the ground shaking. I didn't know that seizures can take many forms
I decided to take a couple of painkillers and go to bed. I slept fitfully for a couple of hours and then the next thing I remember was lying on the floor in the small space between my bed and the wall with a couple of strange faces staring at me and asking questions which I couldn’t answer because I couldn’t speak.
(My husband had been woken by my loud irregular breathing and, though my eyes were open I was not responding to him. He had been advised to put me into a recovery position but I rolled off the bed.)
After being transferred to hospital, a CT scan showed clearly that I had had a subarachnoid haemorrhage, and the offending aneurysm was coiled that afternoon. Strangely, the only emotion that I felt at that time was frustration because I had booked a day off from work and instead of the things that I had planned to do that day I would have to spend the weekend in hospital. I sent my husband home before the operation because the grocery shopping was due to be delivered between 3 and 4pm. No memorable parting words from me!
Hospital recovery
After a successful 4 hour coiling operation I spent 5 days in a high dependency unit and seemed to recover well. On my first day on a normal ward I was allowed to visit the loo on my own, collapsed and lost the ability to speak again. I can recall trying to find a code which would enable me to get home: sequences of numbers passing through my mind. (A result of being a su doku addict, perhaps?)
I was rushed down to the CT scanner but all was well. Although my speech initially came back, it deteriorated markedly over next few days. A year later a neurologist said, "did anyone mention the term 'vasospasm' to you?" (Vasospasm is a sudden contraction of blood vessels which blocks the blood supply to the brain. There is a risk of vasospasm after a subarachnoid haemorrhage.)
On the basis of one test (other than speech therapy tests), hospital therapists deduced that I would not be able to look after myself. This upset me, left me emotionally scarred and gave me the determination to 'bounce back' as quickly as possible – on reflection probably too quickly.
After 3 weeks I was allowed home. I suffered no mobility / physical problems other than headaches, but still had problems with concentration, memory and speech. My speech therapist was very helpful and encouraging. I was given hope that I would improve over time.
I was also referred to the stroke community rehabilitation team but my own particular difficulties did not fit in well with their prescribed remit. I had to demonstrate that I could walk to the shops and handle money which presented no difficulty to me. What I found most alarming was that I could not write any more. What I had written seemed to bear little resemblance to what I had intended to write. I missed out some words, even whole phrases, but repeated other words. This was critical to me as my job involved lots of correspondence and report writing. This has improved over time.
Seizures
All seemed to be going well until December 2009 (7 months after my SAH). I was back at work after a phased reintroduction, and although I know that I was slower than before, I felt that I still knew what I was doing. I had regained my driving licence back and I had started to go out independently.
One Sunday I was at the gym and feeling quite pleased with myself because I had managed to spend 10 minutes on a treadmill at a very gentle pace without stopping. Suddenly I was aware that something was going to happen and I would not be able to stop whatever it was. The room went through a 180 degree turn and then it seemed as though an electric current was passing through my right hand. Although I managed to retrieve my things from the locker I could not remember which of my keys opened the car (thank goodness), nor could I remember the password for my phone, though I wouldn’t have been able to speak.
Eventually I managed to send a garbled text to my husband who realised that something must be very wrong and he came to rescue me. After a couple of hours all was back to normal. A precautionary visit to A&E suggested it might be a TIA. I didn’t want to stay in hospital so I came home.
Two weeks later I had the same experience of sharp tremors in my hand coupled with the inability to speak. My husband insisted that we should go to hospital. My next memory is of waking up on my own in a hospital bed 12 hours later. The conversation with the doctor next morning went along the lines of:
Dr: Do you know where you are?
Me: Yes it's xxxx
Dr: No it's xxxx .You’ve had a fit and you can’t drive for 12 months. (walks away)
Apparently I had had a full blown seizure in the car.
Although I had had seizures at the time of my coiling operation it had been decided that I should not take antiepileptic drugs at that time so I assumed that I would not suffer from seizures in the future. I was totally unprepared for this. So unprepared that I had bought a new car that month!
Not only could I not speak properly after the seizure, I could not process sound too well either. I accused my son of speaking German because I kept hearing German phrases. I thought something had gone wrong with the radio as I kept hearing the same phrase over and over again. I also felt some loss of control in my right arm. It took me a couple of weeks to recover.
Later seizure history
I still have seizures despite taking antiepileptic medication. Generally, the only warning that I get is that I can’t speak properly. This happened once whilst I was in mid flow of a conversation with a work colleague which was bewildering for both of us. I had always thought that epilepsy was a condition where someone dropped to the ground shaking and was associated with strobe lighting. I didn’t know that seizures can take many forms.
Two years on
I have given up my job and now work as a private tutor from home. I don’t suffer from headaches or tiredness, but I do have numbness and tingling and painful sensations in my right side which only appeared after I started to have seizures, and seem to get worse rather than better over time. But, life is good. My husband has been brilliantly supportive. I can do most of the things which I used to do but I am careful not to push myself too hard.
For me, the most frustrating thing is the lack of information provided by the medical profession. Thank goodness for websites such as this.
Further information
If you have any questions about subarachnoid haemorrhage or any other neurological topic, call the Brain and Spine Helpline on 0808 808 1000 or email helpline@brainandspine.org.uk.
You may also find these links useful:
