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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, therefore booked myself an appointment with my local GP. He said that it was probably heartburn and prescribed Gaviscon and I was told 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 black outs but he did agree to send me for an ECG.
A couple of weeks later, my father had been speaking to a consultant cardiologist colleague and explained my situation who asked me to come into the Western Infirmary 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 Atrio 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 few trips to my local A and E department and given my family a few frights! It is difficult 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 difficulties with the way my blood pressure and heart rate work.
At first 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 fit 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 others 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 lightening and other flashing 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 is 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 an attack.
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. Sometimes I find it difficult 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 difficult to remember what happens during or after an attack.
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 receive lots of useful tips and advice to cope with this. My friend Helen has just recently 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 to an attack and now have several ‘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 difficult 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 to others! I think the work that STARS does is fantastic and its great to know that there are people out there who are shining light on blackouts.
Listen to BBC Radio Scotland’s coverage of Rona during Arrhythmia Awareness Week
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