Kathy’s story
Living with an uncommon heart rhythm disorder
Inappropriate Sinus Tachycardia
My name is Kathy, I am 53 years old. Up until February 2007 I considered myself a normal working person, no major health issues, nothing that had debilitated my life to this degree.
I acquired this uncommon heart rhythm problem following a bout of chest pain …I have always had a fast heart rate in my younger years but nothing to concern me as I had to work hard to get my heart rate up just like any other normal person. I suffered blackouts in my teens but never knew why and seemed to grow out of them by the age of sixteen. I had a normal life, worked, married, raised a family but, looking back, I wonder if the blackouts could have something to do with what has happened to me now!
Inappropriate sinus tachycardia is a debilitating and chronic heart rhythm condition, whereby your heart rate gives huge exaggerated responses to normal activity … it rapidly accelerates with minimal exertion, it makes trying to live a normal life very difficult as you are constantly compromised by your heart rate. It gives rates in the realms of SVT levels every time you move and try to be active. It is erratic and difficult to control … it is quite surreal, you can hardly believe it yourself ….
An overview of what a typical day is like for me - When I get out of bed my heart rate will accelerate very quickly to130 BPM and will continue to give bursts of high rates with pounding, galloping, palpitations and breathlessness whist doing the most simplest of things. I have had my heart rate in an aerobic mode on multiple occasions throughout the day without even trying, or to put it another way, it is like having multiple bursts of SVTs every time you move. It is uncomfortable and unpleasant, also hard for your body to sustain because you are not actually exercising; your body feels like it is running a marathon. I need to lie down frequently because the severe tachycardia shakes your body up and leaves you very fatigued. Lying down periodically to help alleviate the tachycardia is also a coping strategy, and coping strategies have been my only ally. It is a tiresome situation and I have had to live with this every single day since it began in 2007 when something happened to me to change the way my heart reacts. It went from normal to inappropriate overnight.
It has blighted my life. My body is in total chaos every day, bringing incapacitating fatigue, exercise intolerance, breathlessness, heat intolerance, dizzy spells, chest discomfort and numerous symptoms. Some days I cannot even leave the bed because the tachycardia will not relent and the fatigue is all consuming.
My family and friends go about a normal life, they have no problems sustaining activity, they glide from one project to another, whilst I have to keep stopping and resting. I pace myself now in every thing I do, because I cannot keep up anymore.
I used to enjoy going on long walks with my husband when we would walk for miles and never give it a second thought before IST invited itself into my life …
You start to forget what your normal life was like after suffering for so long - no longer having the freedom to just get up and go! I go into town but no more shop till you drop! I am lucky if I can achieve a visit to just one shop without encountering problems. No planning any forward projects. It is better to take each day as it comes because the symptoms can be quite incapacitating and the fatigue, which I think is a close second to the severe tachycardia, can render you housebound, even bed bound if you try to over exert yourself. I found I was becoming more isolated, housebound and feeling vulnerable. I have had to lower my expectations, adapt my life massively to cope…I find it has altered my attitude to what is important in life…..
My story is typical of IST
In my case, I was taken ill suddenly with chest pain. I underwent all the usual tests for tachycardia, the twenty four hour urine test to check for a tumour called a phyocromocytoma, ECG monitors for 24hour periods and then monitors on in the hospital, including three week monitors and treadmill tests. I also had a telemetry ECG recorder whilst on the ward to monitor my movements. This type of monitor gave the nurses concern when they could see my heart rate soaring to 155bpm whilst having a wash and cleaning my teeth, but this is how your heart behaves with IST - high rates for minimal activity. I was in and out of hospital on numerous occasions with all the monitoring showing unrealistic high heart rates for my activity. I was eventually diagnosed after they had excluded other causes of tachycardia, and after seeing an electrophysiologist. My story seems to be typical of IST patients presenting at the hospital with high heart rate and no explanation as to why … the doctors struggle to find answers because IST is rare. From the IST patients’ stories I have read, it seems that the same scenario ensues, a severe unrelenting tachycardia and a very persistent type of rhythm disturbance. I am told it is an overlapping syndrome with Postural Orthostatic Tachycardia Syndrome (POTS).
Gaining help and support in coming to terms with it
I was fortunate enough to come across a support group which was set up by a patient with this condition and this is where I started to gain help and knowledge
of IST. Through this site I have gained coping strategies and support. There are people who are affected to varying degrees - some of us are very disabled by the condition and this is where I feel I fit in because I have been quite debilitated by the severe and incessant tachycardia. Others maintain some normality and are helped by the medications or have had ablations and pacemakers, but this is not recommended for everyone.
I have come to terms with my condition. The symptoms have remained the same throughout, but I cope differently. I have a NEW NORMAL. I do not stress and waste precious time looking back. My life now has to be different to cope with this condition. Over the three years, I have had help from the cardiac specialist nurses and my family and husband have given me a huge amount of support.
It is very debilitating how the tachycardia and fatigue just floors you when you try to sustain activity and I mean the most simplest of activity. Doing normal minimal tasks around the home is frustrating and upsetting. It has been a life changing experience as I have to plan more carefully - how far I have to walk, can I achieve what I want to do? I do things slowly and try to ask for help if I need it. It is such a debilitating condition that you have no longer have normality. As I said earlier, my coping strategies are my only ally, and that something that changed my life in 2007 and triggered my IST was like throwing a spanner in the works…