STARS Patient Information
If I think back my first loss of consciousness was in 1983 when my son was 9 months old, he is now 28 years old!
These episodes continued each time, my injuries clear to see. In the end I decided to go privately to have some investigative tests carried out, this was in August 1991, I went on like this for a few years but no diagnosis could be given.
I was a single parent working full time as a Branch Manager of a Building Society (now Bank), so a busy and demanding job, a job which I took great pride in doing and one which I thoroughly enjoyed.
My life changed completely in February 1995, two days after my son’s 12th birthday, I had another unexplained loss of consciousness with devastating and life changing results. Whilst shopping I fell to the ground and my head got impaled on an industrial cleaning mop, the two exposed metal prongs fractured the skull and penetrated the optical region of the brain.
I was off work for 5 months recovering from my injuries. Physically I looked fine, my hair had started to grow again and I was beginning to feel that I had had a very lucky escape. My confidence was at an all time low, I had lost the vision in the left quadrant of both eyes and trying to work in a busy and demanding bank was proving very difficult. By November 1996 I had retired on medical grounds.
These episodes continued to plague me and each time I would go to my doctors but still no diagnosis could be given. In the end on a visit to my doctor’s surgery, for another reason, I had one of my episodes and as a result of this I was referred back to the hospital for tests, this was in March 1998.
It was not until May 1999 that a diagnosis of Epilepsy was made and medication commenced. You have all sorts of emotions when a diagnosis like this is given to you, but for me it was a relief, I felt that finally I would be in a position to take control of my life, albeit with the help of medication.
One year later whilst I was reading the local evening paper I saw an article about Epilepsy which had been written by the National Society of Epilepsy. Useful information - something which I found was hard to get hold of - but what caught my eye was the fact that they were looking for volunteers to help run the Epilepsy Information Network.
I immediately picked up the telephone and had a very rewarding conversation with Kim Barlow-Miles, within a matter of months I had been trained and was officially an Epilepsy Information Network Volunteer, assisting in Dr O’Donoghue’s clinic at the Queens Medical Centre, Nottingham.
Volunteering for the National Society of Epilepsy is very rewarding, I felt that my life had purpose again and I loved talking to the patients, handing out information and providing emotional help and support.
Things were turning a corner for me and once again I felt valued. The only fly in the ointment was that my episodes continued and my injuries were clear for everyone to see; I was always ending up at the A&E department being stitched up and sent home, with the epilepsy medication either being increased or changed.
This went on for eight years until April 2007 when I had yet another episode. This one was particularly nasty; I ended up with a split nose and two black eyes, and yet again I was taken to hospital to be patched up and sent home. This time it was different. The doctor came to talk to me and at first I thought it was going to be the usual go and see your doctor and discuss the medication but no, he wanted me to see Dr O’Donoghue the Epilepsy Consultant I did voluntary work for at the Queens Medical Hospital.
August 2007 I had a very long consultation with Dr O’Donoghue, who decided to start afresh with a complete look at my medical history and at the end of our consultation he recommended that I have another Tilt Test done as his initial thoughts were that it was not Epilepsy but Malignant Vasovagal Syncope!
Whilst waiting for my Tilt Test I decided to carry out some research of my own and Google searched Tilt Test, this lead me to the Stars website. All this information was really useful, I could see why Dr O’Donoghue was thinking that maybe I did in fact have Vasovagal Syncope.
I signed up to become a member immediately! I felt that I was now in possession of more information and knew what to expect when I had the Tilt Test carried out, and I also knew what the worst case scenario was……. A pacemaker! I thought that this would never happen to me!
To speed things up I went privately, my Tilt Test was carried out on the 9 November 2007. What happened surprised and shocked me, I had not one but two of my episodes and was immediately admitted to hospital where a pacemaker was fitted!
I was so grateful that I had found the Stars website and had been able to read all the information. This in some small way prepared me for the shock of having a pacemaker fitted.
Dr O’Donoghue advised me a month later that my episodes were as a result of the blood pressure dropping and the heart stopping. The pacemaker would now sense this event and stop me losing consciousness. Gradual withdrawal of anti epilepsy medication commenced straight away.
April 2011 over four and a half years later and I am no longer taking any medication, I am managing my lifestyle and go for regular check ups at the pacemaker clinic, but life is so much more different for me now. Slowly I have been able to pick up the pieces and start to take control of my life again and I owe a big thank you to Dr O’Donoghue in making a correct diagnosis.
I also owe a big thank you to STARS as without their website and the information, I would have gone to my Tilt Test totally unprepared. I always look forward to receiving my newsletters and found the article ‘You are what you Eat’ in Issue 34 January 2011 eye opening and very useful. In fact I passed this article and website details on to my niece who may also be suffering from syncope!
So exactly how good is life for me now? Well it can’t get any better and I now have a part time job as a Money Sales Assistant and I am loving every minute of it. I am still working as a volunteer for the NSE as after all it was through them that I met Dr O’Donaghue and the rest is history. Thank you! As Dr O’Donoghue said to me getting the job is the ‘icing on the cake’
It has taken a long time and life has been challenging but I look forward to having a successful career once again.