Keith's Story

My name is Keith Belton and I’m 46 years young. I live in Basingstoke, Hampshire, UK. This is an account of my life threatening subarachnoid haemorrhage (SAH) and subsequent recovery 6 months on.

At 0230 on 28 August 2006, I woke up to visit the bathroom, and whilst there, I had a sudden severe headache (worst of my life) followed by vomiting, collapse and paralysis. My wife and 12 year old son Daniel tried to help me. My 7 year old son Jason thankfully slept through the whole ordeal. Up to this point I was conscious and able to respond to people, but I was a bit drowsy (who wouldn’t be at that time of the morning?) I was taken by ambulance to the North Hampshire Hospital in Basingstoke, where following various tests and investigations, I was eventually diagnosed as having had a severe migraine. I knew this was wrong, as it felt nothing like migraine that I had suffered in the past. The doctor also organised for a lumbar puncture to be performed later in the day “just to be sure” that I had not had a bleed on the brain. I now know that I had suffered a subarachnoid haemorrhage (bleed on the brain) caused by a ruptured aneurysm.

I was transferred to the medical assessment unit for observation and to await the lumbar puncture. After about an hour, still with quite severe head pain, the headache suddenly got worse and now extended to the back of my neck. It was then realised by the medical staff that my condition was a bit more serious than just a migraine. In fact, I had just had a second bleed.

At this point things get a bit hazy, but I vaguely remember being given a CT scan, although I don’t remember anything much after this until I woke up 2 days later in the neurosciences intensive care unit at the Wessex Neurological Centre, Southampton. I have one vivid memory of briefly “surfacing” and thinking “This is it. This is the end” I was eventually moved to the High Dependency Unit where I was told that I had suffered a subarachnoid haemorrhage and the artery concerned had been blocked with platinum coils inserted through a catheter from the top of my leg, a procedure called “endovascular coiling” or “coil embolisation”.

My SAH was classed as grade 4 which is the highest grade according to the initial CT scan and my wife was told following my coiling operation that there were no guarantees about my recovery – or even if I would recover at all!

After being on a neuro ward for a few days, I was transferred to Basingstoke hospital on 07 September 2006 and discharged on 11 September 2006.

I do not remember much of my time at Southampton except the head pain and fleeting memories of things such as when I came off the ventilator and was able to breathe for myself. My wife told me later that I was either asleep or half awake and talking gibberish.

I left hospital 2 weeks post SAH and the early weeks at home were very tough with almost constant severe headaches and fatigue. Even simple things like getting dressed or having a bath would drain me completely. I was taking only paracetamol for the headaches up to now, and still the headaches were ever present. Sometimes, the pain killers seemed to make no difference. I received fantastic support from my wife and children which was the biggest factor in speeding my recovery. They probably took the most fallout from what was the biggest event of my life.

One particularly bad day about a week after leaving hospital, I had a particularly severe headache that would not ease. It was almost as bad as my original SAH headache, so I returned to Basingstoke hospital by ambulance. Following several hours of investigations including a CT scan and discussions with the doctors at the Wessex Neuro Centre, I was given the all clear and sent home with some stronger pain killers, codeine phosphate. I used these in conjunction with paracetamol to help alleviate at least some of the pain.

As well as the headaches, I would experience odd twinges of sharp pain in my head, particularly above my right eye. My speech was also very hesitant and I would have to hunt for words. It was so frustrating because I was very aware of my speech difficulties.

For the first 2 weeks at home, I couldn’t read very much, use a computer or listen to music as any of these activities would trigger an increase in the severity of my headache and fatigue. I could, however, watch TV in small doses. Even that depended on the TV programme. Anything noisy or busy and I would have to turn it off. I was partially deaf in both ears, but even so, any random noise from the TV or the kids would drive me mad. I had been told not to drive (not that I could anyway at this stage) and I informed the DVLA (Driver and Vehicle Licensing Agency, for non UK readers) about my SAH as required by law.

My sleep pattern (if you could call it that) was all over the place. I was going to bed very tired in the early evening, often waking in the early hours of the morning, unable to get back to sleep. I slept most afternoons for 2-3 hours.

I tried to get out of the house on most days. At first I would go for a short walk with my wife or a ride in the car and then have a rest to get over it. I would only go out in the mornings knowing that I would have the afternoons to rest or sleep. There is a lot of talk about listening to your body and resting when it tells you “that’s enough”, but I believed that I had to make some effort to get out and do something, however bad I felt. I think my belief was justified, because each day I got stronger and going out was less of an effort.

My first visit to a supermarket was not good at all. The general background noise and the bleeps from the tills were almost unbearable. I had to get out into the relative quiet of the car park before I passed out!

After about 2 weeks at home, I was able to use the computer for short periods and found a whole load of frightening statistics about SAH on the internet which made me realise just how lucky I was to (a) be alive and ( not to have suffered from any serious disability. I was also fortunate to find behindthegray.net where I learned that I was not the only person in this situation and I took great comfort from reading experiences of others and their advice. I also felt I could give something back by helping others in the same situation. I really believe that this helped a great deal with my recovery.

It was during this time that I paid a short visit to work. My wife drove me the 22 miles there as I was still not able to drive. My employers were very supportive and put no pressure on me to return to work. I was also fortunate that that I did not lose any pay. I have heard that many people suffer financial hardship as a result of SAH and I’m glad that I did not have to go through that.

During the next couple of weeks I grew stronger and the headaches started to ease, although I still had almost constant headache and I slept most afternoons. My hearing had returned to normal, and I was able to watch TV and use the computer for longer periods. The supermarket trips were still a bit traumatic, but not nearly so bad.

At about 6 weeks post SAH I attended a SAH support group meeting at the Wessex Neuro Centre in Southampton, where a consultant neuroradiologist gave a presentation on coiling. It was interesting to find out what the doctors had done to fix my aneurysm and to meet and talk with other SAH sufferers. The meeting was during the evening when I was not at my best, so I was really tired when I got home.

Soon after this, the headaches started to ease a bit, and on some days I began to feel almost normal. I still suffered from fatigue and had the odd bad headache, but I did not have to take pain killers every day. I suppose that was a sign that my recovery was progressing.

In October 2006 - 8 weeks post SAH - I had a cerebral angiogram at the Wessex Neuro Centre, Southampton, to check on the coils. For those reading this who have not experienced (or can’t remember) an angiogram, it is a procedure where a catheter is inserted into an artery at the top of the leg and navigated up past the heart into the arteries in the head. A contrast agent is then injected and a series of x-ray images are taken to view the blood circulation in the brain. This allows the neuroradiologists to check if the coiling has been successful. It is the same procedure that is carried out following SAH to locate the position of the aneurysm and to decide on any treatment. Coiling itself is an angiographic procedure.

About 2½ months post SAH, I started to have more good days than bad days and I got bored being at home with little to do, especially the good days. I contacted my employers and suggested that whilst I was not yet well enough to return to work, perhaps I could do something at home as and when I felt able. My job as a project engineer for an industrial automation company often involves meetings with clients and site visits, so I was asked if I could design a new web site for the company. This was a new departure for me and occupied my time at home when I felt well enough.

I had a follow-up appointment with my neurosurgeon at 3 months. He was pleased with my recovery and the results of my angiogram looked good. He said that I would not have to see him again, but I would require further follow-up in the form of MRA scans at 6 months, 18 months and 3 years.

I received a letter from the DVLA telling me I could continue driving and I returned to work on 12 December 2006, three and a half months after my brain haemorrhage. In the 2 weeks up to Christmas, I only worked 5 hours per day, but I took a step backwards in my recovery. The tiredness and fatigue returned, and I was having more headaches. The 40 minute drive each way to and from work did not help. I slept for a couple of hours most days when I got home from work. It was bearable, so I stuck with it until the Christmas holidays. I had a peaceful Christmas with the family, but the headaches, whilst fairly mild, continued.

I returned to work full time in January 2007, 4 months after my SAH and for the first couple of weeks I felt very tired towards the end of the working day. Towards the end of January, things started to improve once more and I felt “normal” most days, almost like nothing had happened to me.

I went back to Southampton for a MRA (magnetic resonance angiogram) at the end of January and have yet to hear the results of that.

During the last month, I have felt that I am fully recovered most of the time. I’m still more prone to headaches now than I was pre-SAH and tiredness still affects me occasionally, especially if I overdo it.

I have a different outlook on life now. After a big event like SAH, I realise that life can be very fragile and can be snatched away without warning. It also affects family members and friends. I’m very thankful that I can enjoy life with my wife and two sons.

Keith Belton

February 2007