Sam’ Story

I am a 31-year-old woman diagnosed with Vasovagal Syncope and Chronic Fatigue Syndrome 10 years ago.  As a child I would often pass out, and 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.

After discussing this with my GP, I was referred to a consultant cardiologist who undertook various tests and eventually following a tilt table test when my heart stopped; I was diagnosed with having Vasovagal Syncope.  I was prescribed various drugs to see if they would help but 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. Unfortunately my body did not adapt to the pacemaker as hoped, making me very ill, causing me to suffer more “episodes” of fainting, dizziness, fitting / convulsions. As I was so sensitive to being paced 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 Accident & Emergency department 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.

My current consultant has been very supportive over the years but my 6 monthly checks consist of him explaining how well I cope with my health, but he is nonetheless unable to suggest any further medication or help.

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

I recently spoke to my GP requesting I be referred to a specialist clinic, however because it was out of area and after submitting an application to the Primary Care Trust (PCT), it was suggested I see a consultant closer to home and whom the PCT have listed as an “existing provider”. I was told the consultant had a special interest in Vasovagal Syncope.

On visiting the recommended consultant, his opening line was “why have you come to see me”, it turns out his special interest is not in Vasovagal Syncope but Cardiac Pacing!!  Nevertheless the consultant spent 2 hours with me and was genuinely interested / helpful to my condition. He confirmed that I had the worst form of Vasovagal Syncope and he has written 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.

Since this date, I have received a letter from the Blackout Clinic I wish to visit sympathizing with my difficulties in obtaining approval to visit them and also explaining that I should be able to exercise my right to choose and that the PCT are required to spend a proportion of their resources in the private and independent sector. 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. My GP will be resubmitting my application but in the words of the PCT “Ms Coney should be advised that this is sometimes a lengthy process and no guarantee of a successful outcome”.

This is a great example of the frustrations I live with. There are specialists out there who may be able to help and who are willing to try, but I am not always allowed to see them, unless of course I have a wad of cash!!!  In my opinion something is seriously wrong!

I am in full time employment as a Project Manager at a firm of Solicitors in Birmingham. I thoroughly enjoy my job and to keep it means a lot to me, although with the deterioration in my health I find working full time harder and harder, (hence I now work at home twice a week). 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, my only comment would be, when are we going to see an improvement in health services available for people like me living daily with this condition?

Read about other Vasovagal Syncope Patients

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