I am currently going through a bit of a rough time, and was very glad to find this wonderful and very reassuring forum.
My nick name is megavolt so I signed up as megavolt but my real name is Steve.
I have an ICD for over 9 years, and my original one was recently upgrade to a dual chamber two wire one on account of my problems with AF.
I originally was only suffering with VT runs, and had experienced a couple of shocks from my ICD (appropriate) after coming back from holiday in September. After the second one I became breathless at the slightest excursion and notice my heart rate would go up.
I went to see my GP and he listened to my heart and said he suspected I was in AF, he sent me down to have an ECG and confirmed this was the case.
My cardiologist put me on Digoxin and a little extra Bisoprolol. I have a problem that causes my Potassium to waste and am constantly on Sando K at a rather high dose. My electrolyte imbalance was suspected to be the root of my problems and I had my dose increased further.
I had a further shock from my ICD and went to see a new specialist; he talked to me about having an ablation and offered me the option to try Amiodarone first. I foolishly just wanted to get back with my family so I thought the trying of drugs to suppress the unwanted signals causing arrhythmia was my best bet.
Last week, I had just begun my first dose of Amiodarone. I found this forum and read a little about the drug and decided it was a good place to read and be reassured. Shortly after joining this forum I had to be admitted to hospital for monitoring after I had two shocks in one day. ( I was feeling OK, I knew I was in AF but could still walk ok at a gentle pace.)
While I was in hospital, I felt a VT run and suddenly felt as if my ICD was having a pacing battle and about to go off. I felt faint, but it subsided and so I told the cardio nurse that was looking after me.
Next there followed my first experience of a VT storm, I received a total of 42 shocks in one night. I was put onto a drip of Amiodarone and also Lidocaine and in the early hours of the morning I was stabilised.
I am now out of hospital, and have had my meds tweaked quite a lot. I am being paced at 90bpm all the time and they have temporarily disabled my second wire in my ICD. I am currently on 200mg of Amiodarone. I am feeling very breathless at the slightest excursion; I find it hard to climb the stairs.
I also have a really bad shake, am very jumpy, and my memory / concentration has taken a bit of a bashing. I now deeply regret not going straight for the ablation, and am hoping I will still get the chance.
Any thoughts or comments greatly received…