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| information & support for patients and their families |
personal stories from people who have IST |
| fran back to personal stories from people who have IST I was diagnosed with Inappropriate Sinus Tachycardia (IST), around 5 years ago. I have had heart arrhythmias for at least 15 years. IST is so unknown to the majority of cardiologists, let alone the rest of the medical world! Information for patients is very hard to come by. It all began in my teenage years.....(as lots of SVT arrhythmias do).....I noticed the odd palpitation or 2 between 14 and 18 years old, nothing I was worried about at all. I remember very clearly when all the 'trouble' started. I was at uni and climbing stairs started to become a problem....I was a healthy 18 year old! I also began to feel palpitations again, only this time they would last a few hours. I didn't understand what was going on and was understandably scared. I saw my GP who checked my thyroid (which was normal), I ended up in A&E (the ER) one day (because I was very dizzy) with a heart rate of 150 at rest. I was given a 24hr Holter ECG to wear and told to return it the next day, and sent home. The same day I returned the monitor to the hospital, I got a phone call from their office. "Please come up to the hospital tomorrow. The doctor has asked to see you straight away". Now, this I had to say, did worry me some. Once in his office, he told me...."Well, we looked at your 24hr ECG and your heart rate is fast, very fast in places. You have a heart rhythm problem called SVT" He also checked me over and told me I had a heart murmur too. "I'm going to ask a cardiologist colleague to see you soon". So, I had a heart problem I though. Not what anyone wants to hear. I had an echocardiogram (ultrasound scan of the heart) and then saw an EP (Electrophysiologist, cardiologist specialising in rhythm problems). He also told me I had SVT (supraventricular tachycardia, a fast heart rate originating in the top chambers of the heart) and "probably an extra pathway in my heart, causing the SVT". He asked me if it really bothered me, I said yes. He suggested having something called an EP Study (a cardiac cath where the electrical system of the heart is tested from inside) and then an ablation (where the extra pathway, or other part of the heart causing the arrhythmia is burnt/damaged to cure the arrhythmia). He made it sound easy, very easy, a cure, so of course I agreed. He also started me on an antiarrhythmic drug called Flecainide to try to slow my heart rate down. I had the EP study and they did not find SVT. I was told that they could not find an abnormal heart rhythmI felt very dissapointed. I had been told I was going to be cured (so I had thought). So, no cure, back on cardiac drugs. Unfortunately, the drugs had nasty side effects, and besides, did not seem to really work very well. I went through over 10 different drugs, antiarrhythmics, beta blockers, calcium blockers, some worked better than others, but none controlled the really fast episodes....... ended up going through several cardios and EP's also, over several years of frustration, a long time of being told "you're having panic attacks" or "it's nothing to worry about" and "you'll grow out of it in a couple of years"........I felt strongly that my age and my gender (female) put me at a huge disadvantage. I felt that doctors thought I was simply anxious (they saw the sinus tachycardia and didn't see beyond it). I got a new EP about 5 years ago, who gave me all the tests again (apart from the EP Study - at that stage), he told me almost immediately that I had Inappropriate Sinus Tachycardia (IST). My heart rate never went under 100 a minute until I was asleep. On some tests it also showed that at times, my sinus node (the heart's natural pacemaker) wasn't working properly and that I was getting tiny pauses and my AV node would generate an 'escape rhythm', a much slower rhythm for a few seconds, which I recorded on a 7 day ECG 'patient event monitor' when I had been getting dizzy turns. I was also having another type of abnormal heart rhythm called V-Tach (Ventricular Tachycardia), but only for a few seconds and it was not causing me problems. So, I was put on more antiarrhythmic drugs and these ones worked much better, but had unpleasant side effects. I had to stop them. I was eventually offered a Sinus Node Modification / ablation procedure, (it was a very difficult decision for me to make - there are very definate risks attached). Well, I had my EP Study and ablation for IST approx. 4 years ago, my EP also discovered I had another arrhythmia called Atrial Flutter, so he ablated that one as well. Unfortunately a couple months later it was discovered that my sinus node was not functioning properly and I had very slow heart rates over the next few weeks that caused dizziness and falls and meant I needed a pacemaker implanted. After getting my pacemaker I felt a good deal better and no longer experienced dizzy spells. I honestly forget my pacemaker is even there now. A couple of months after receiving my pacemaker I had to have another ablation, this time for the arrhythmia called AVNRT (Junctional Tachycardia), which had given me episodes of tachycardia at 270bpm. I had 4 EP studies and ablations in the end and I am feeling much better now that my IST is gone. I still continue to have episodes of PAF (Atrial Fibrillation) and Flutter; but my IST remains cured four years on. Seeing a specialist who has a thorough knowledge of these conditions is essential. My greatest wish remains for heathcare professionals to become more educated about IST, and other arrhythmias that may look like IST so that more people do not feel like they are being brushed off as being 'anxious' or 'crazy' and they can get appropriate care from professionals. Best wishes to all, Fran x x x |
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| The content of this page was last modified at 22:00 GMT Monday 5th November 2007 |
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