7 minute read
Rona Saunder’s Story and Silver Wedding for STARS
My name is Rona, I am 21 years old, a Primary School Teacher, and I was diagnosed with Neurocardiogenic syncope two years ago.The attacks started in February 2005, totally out of the blue and a diagnosis was made a few months later.
Looking back on my childhood and early adulthood I probably suffered a couple of similar episodes although nothing to the extremes that I have had over the last two years. However, the fi rst attack with severe chest pains came one evening whilst I was tidying up after a youth club in my church. I can’t remember doing anything different or out of the ordinary but had prior warning before I fi nally passed out. I don’t remember too much of the attack but just put it down to tiredness or a ‘one off’ and went home to bed and carried on as normal the next morning. Little did I know that this was going to be the start of a roller coaster ride!
During the following week, I had another couple of similar attacks, so decided to make an appointment with my local GP. He said that it was probably heartburn, prescribed an over the counter indigestion remedy and told me to return within the next two weeks if the attacks persisted. The attacks worsened so I went back to my GP who then said the chest pains were probably due to a muscular problem and he didn’t seem overly worried about the periods of blackouts but he did agree to send me for an ECG. A couple of weeks later my father, who was speaking to a consultant cardiologist colleague, explained my situation and I was asked to come into his Infi rmary as a matter of urgency. The hospital did several tests and I was given a 24-hour heart monitor for a week as they thought I might have a life threatening condition. After going through many different tests I was diagnosed as having Atria Ventricular Re-entrant Tachycardia and then referred to the outpatient department. The Cardiologist there did not appear to be convinced of this diagnosis and agreed to do a tilt table test. This was an extremely horrible and very frightening experience for me. A few days later I was diagnosed with Neurocardiogenic Syncope. I thought, at last a diagnosis, maybe they could now do something to make the attacks stop! As many of you are aware this is simply not the case, I have tried several different types of medication, none of which block out the attacks completely. I have had a number of trips to my local A and E department and given my family a few frights! It is diffi cult when no one really knows much about the condition! I discussed the option of a pacemaker. However it seemed that this would not lower the number of attacks I was having as it would have further complications and more complex diffi culties with the way my blood pressure and heart rate work.
At fi rst I wanted to deny that I had this condition that no one had ever heard of! I tried to carry on as normal and pretend that it was not there, still being as fi t and active as I always was, but I have learned to deal with that and now am much more sensible with it, knowing my own limitations or others telling them to me!! It is still very frustrating at times and I always get very embarrassed when there are people there who don’t know me very well.
Its hard to tell at times what triggers an attack but they tend to come on more “ frequently if I am tired or stressed or in a warm room/ area! Strobe lighting and other fl ashing lights even Christmas tree lights) also seem to have an effect on me. I do particularly hate it if I am stuck in an area where there are a lot of people and I can’t remove myself quickly. If I feel over crowded and get more fearful of an attack happening, I think I may even send myself into one.
I suppose that I am fortunate to have some prior warning of attacks happening. When an attack is coming on it feels as though people are very far away as their voices seem distant. My vision can go funny although I do try to get something to focus on and my right arm can jerk. I feel as though my reactions are delayed and I seem to lose my balance but always manage to sit or lie down before I go into a full-blown attack. I always feel the need to hold onto something really tightly and knowing someone is there is always reassuring.
Put it down ut it down to tiredness to tiredness or a or a ‘ one off’ ‘one off’ “
lie down before I go into a full-blown attack. Sometimes I fi nd it diffi cult to breathe and I am unable to speak. This can be the most frustrating part.
The worst part is coming back into consciousness and I usually feel very tired after an attack. However, it can be very diffi cult to remember what happens during or after it.
It was great to see Shelley’s article in the Daily Mail and I immediately got in touch with STARS. It really has helped me to know that there are others who suffer from similar attacks and I have received lots of useful tips and advice to cope with this. My friend Helen ran a half marathon to raise money for STARS, as she knows the help it has given me and wants to help raise awareness for others. I have good spells and bad spells now but am much more able to manage the attacks. They are much less frequent and I have plenty of prior warning and now often have ‘near misses’ I can handle them by doing some physio to offset the attacks and also taking medication. My friends are very good at spotting when an attack is coming on and they have all learned to deal with it along with me!!
As everyone knows this is an extremely diffi cult condition to deal with but with all the love and support of my family and friends I have managed to understand it and raise awareness for others! I think the work that STARS does is fanastic and it’s great to know that there are people out there who are shining light on blackouts.
Rona Saunders Glasgow
Silver Wedding for STARS
We recently celebrated our Silver Wedding Anniversary with a ceilidh for family and friends. We requested that no personal gifts be brought but rather that people may wish to make a donation instead to STARS to help further support and research into this condition. We received helpful information/ literature from STARS, which we made into banners for the walls of the venue. We also decorated the room with coloured stars to promote the work of STARS and draw peoples’ attention to what is being done to help those with this debilitating illness. A silver collecting box was placed on a suitably decorated table in the middle of the hall and the sum of £1700 was raised on the night.
The evening was all the more special because our daughter, Rona, who suffers from neurocardiogenic syncope, gave a speech and led the good wishes of the assembled guests. This was a particularly signifi cant moment for us all as she ably demonstrated that she seeks to manage the condition and lead her life as strongly as she can with the help and support she has received from STARS and her medical consultant.
This was our way of seeking to help STARS carry on the good work that is being done.
