STARS Issue 24, January 2006

The Frustrations of Vasovagal Syncope I am a 31-year-old woman who as a child often passed out, this was put down to the fact I was a young girl growing up. At the age of 21 I began to suffer “episodes” of fainting and fitting on a regular basis, as a consequence the recovery after each episode would take longer.

As a result my GP referred me to a consultant cardiologist who undertook various tests including a tilt table test when my heart stopped; I was diagnosed with having Vasovagal Syncope, and was prescribed various drugs to see if they would help. Unfortunately I appear to be extremely sensitive to drugs and their side effects, which only added to my problem.

On 24 June 1998 as a last resort I was given a pacemaker. My consultant had hoped that this would resolve all my problems, enabling me to live a normal life. I was sensitive to being paced and my heart suffered more tachycardia (rapid heart rhythm) and palpitations. Since then my health has deteriorated, causing more blackouts, fits, chest pain and palpitations. My only option is to go to the A & E where they monitor my heart rate. Once it has calmed down, they send me home to rest and refer me to see the Pacing Clinic or my consultant. There isn’t a day that goes by when I can switch off from my health as I suffer with more and more pains in my chest as well as regular palpitations and pacing.

After attending a Pain Management Course, I discovered the charity STARS and through them discovered that some hospitals (albeit very few at present) have Blackout Clinics to help people with symptoms such as mine.

I asked to be referred to a specialist clinic, but because it was out of area the Primary Care Trust (PCT), suggested I see a consultant closer to home whom the PCT had listed as an “existing provider” with a special interest in Vasovagal Syncope. I visited the recommended consultant only to find his special interest was not in Vasovagal Syncope but Cardiac Pacing!!

Nevertheless the consultant spent 2 hours with me confirming that I had the worst form of Vasovagal Syncope.

He wrote to an expert who runs a Blackout Clinic (the one I had initially requested to visit when applying to the PCT) on my behalf to obtain his expert opinion.

The clinic have kindly offered to see me either privately or on the NHS so the only difficulty I am having is obtaining approval from the PCT. This is a great example of the frustrations I live with.

I am in full time employment although with the deterioration in my health I find working full time harder and harder. A consequence of working full time is that my social life suffers, as I tend to spend a lot of my weekend sleeping and resting for the week ahead. This is something I find very frustrating, causes me embarrassment and I become increasingly angry at my limitations.

I am a very determined person who does not want my health to get the better of me; hence I will try anything to improve my quality of life. On the outside I appear a very strong woman but inside I am very scared and continuing “episodes” of fits and blackouts are extremely frightening.

I think the work that STARS does on raising awareness is fantastic, but would like to see an improvement in health services available for people like me living daily with this condition.

Samantha Coney, West Midlands 6