I just had a very bad and life threatening ventricular tachycardia episode, so I'll give you a little bit of a background of my condition..
I'm 21 years old and I was born with Coronary Heart Disease, VSD, and Tetralogy of Fallot. Because of this, I suffered from tachycardia as a very young child (from when I was 18 months until I was 7 years old.) I had open heart surgery (total correction) when I was 7 years old and the surgeons were going to fix the tachycardia, but were unable to find it. They let my parents know that the tachycardia seemed to have disappeared but could come back since they were unable to ablate it.
I didn't have any problems with the tachycardia until about November of last year. It started out very minor, where I was just getting small palpitations here and there. In mid-February of this year, I had an episode that lasted for about 15 minutes. I didn't have another episode until mid-April. For this one, I went into the ER and found out my heart rate was at 300 bpm. After about an hour of it beating fast, it suddenly dropped to 90 bpm. They ended up releasing me a couple of hours later.
Recently, I had another episode. This one was the worst by far. I was at a concert when I had the episode and was taken to the ER by ambulance. My heart rate was at 250 bpm. They tried giving me a drug that was supposed to lower my heart rate but it wasn't working - nothing was working. I was hypotensive so it took forever for them to get an IV into me. I was lying in the bed and after about an hour and a half, I started getting symptoms of cardiac arrest - I was dizzy, my vision was blurry, I was nauseous, I was very hot and sweaty, and my blood pressure was about 90/40. I passed out, not sure for how long, and woke up to them hooking me up to the defibrillator. They ended up putting me out and shocking my heart.
I had to stay in the hospital overnight and all day the next day. They had me on Amiodarone (not sure if anyone else has had this?) for the entire time I was in there. I've been off of it for about 4 days now, but I still become sick to my stomach, I'm unable to sleep well, I'm suffering from bouts of dizziness, and I don't really have an appetite. I don't know if its the side effects from the drugs or if its the aftermath of the tachycardia episode.
I would really appreciate any feedback from anyone who has experienced this or been on Amiodarone so I can figure out why I'm feeling so crappy! The doctors told me I should be able to get back to my regular activities, including work, but I find it hard to stay standing up and walking without getting dizzy or tired or sick to my stomach.
Also, I've been having nightmares ever since I got released from the hospital and they usually involve me dying or in life-threatening situations. I'm also afraid that I'm going to do something that'll trigger another episode and I do not want to go through that again. I don't think I'm dealing with this whole situation too well, so any support would also be very appreciated.
I have had episodes of SVT for over 20 years since I was 19 and know your pain. I have never had an issue with them converting me back to a normal rythum but they have lasted anywhere from 10 minutes to 7 hours.
I too have sleepness nights and constantly worry when my life will be disrupted by crazy beats or my bpm going over 200. I have seen a therapist about it and also carry xanax to help out with the panic.
I would definately look into a therapist to help you with your fears. Mine has helped tremendously. I am actually not afraid to leave the house and somewhat am able to live a normal life.
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I had an espisode of ventricular tachycardia as a side effect of Adenosine in the ER and it was very scary. It led me to getting my ablation for AVNRT which was the best thing I've ever done medically. Gosh, I just want to say I'm sorry that you are having so many problems at such a young age, I would continue looking for a treatment that can be even more helpful. These things are getting better and better so there is always hope for a cure! You take care. Curious, Lylone, why you don't get an ablation and get cured?! No more ER's...been there...done that. Expensive and ablation is so easy. Just my 2 cents.
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I haven't had the EP study yet because I am afraid that they may make mine worse than better. You may have had a happy ending with correcting yours, but your story is the first I have heard. A friend of my sister's had it done, and it made it totally worse. She was having two a week and always going to the ER to have them converted. Then she went in for her second study and ended up with a pacemaker for life. The procedure was done by a very highly known doctor here in Atlanta, in a highly specialized heart hospital.
Mine also haven't reached the point of being life threatening, and I have only had to be converted with Adenosene 3 times in my life and all three it "worked beautifully".
I also maybe have at the most 5-6 episodes a year, but went for 5 years with not a single issue. I quit smoking and they came back, but still I have only had about 3 so far this year. When the episodes get more numerous and I can't convert them more frequently...then I will probably consider the procedure. At this point the risks outweigh the benefits.
I think that the ablations that weren't perfect are the ones that generally hang on the boards. The successful ones don't get reported mostly. My hospital was the first in the country to have the new equipment (I'm in KC) and they do like 2 or 3 thousand ablations a year there. I am mad at myself for waiting frankly. 2 hours of my life, it was a no-brainer and I could have never had to worry again but it took me 18 years to get it done. Just my opinion but I think it's never good to have your heart going 200 beats a minute. I thought the risks outweighed the benefits too until one day I was in the ER getting adenosine which always worked great and it put me into a ventricular tachycardia with severe chest pains and I ended up in the intensive care. It all seems good until it suddenly goes bad and that's they way it is with the heart - sudden! I read the side effects of adenosine and realized I was on borrrowed time, eventually I think everyone will have a bad side effect...plus as we age this condition tends to get much worse and having a racing heart is much more dangerous. I think you have to look at the type of SVT too. I had AVNRT and that is 95 - 98% curable so I would have been a fool not to go for it. I'm exactly 4 months post-op and I really think I'm cured. I've had a few thumps and weird beats but nothing happens because I guess it has nowhere to go! Woohoo...love it. Believe it or not, I was worried that we would have a pandemic or something someday and we would have to stay at home not to die from getting a contagious disease and what would I do if I had an SVT and had to get adenosine. Now that's one big worry gone. Plus flu season. I feel totally empowered. My life has changed so much! I'm working out over 2 hours a day now and my heart does nothing ever. Well, good luck to you in the future. I hope you have great success in whatever treatment plan you follow!
Thank you everyone for writing back! I know this message is very delayed, but I've been busy.
Since my life threatening episode, they sent me home with the LifeVest which is an external defibrillator. I went through a whole bunch of tests, from heart cath's to MRI's. I had the ablation done at the end of July and it was quite successful, although they weren't able to ablate everything. Because of this, they implanted an ICD about a week later and I hadn't had any problems for about 3 and a half months.
Recently, at the end of November, I was out partying with my friends and received a shock from my ICD. It was painful and scary, but the doctors told me that it saved my life because I was going into a fatal arrhythmia. They put me on beta blockers, which I never adjusted to and they made me feel very sick and lowered my blood pressure way too much so they took me off of them.
Anyway, things have been great. They concluded that my "trigger" was alcohol, so I'm not allowed to drink anymore but thats fine by me. The only thing that sucks is that here in Canada, its the law that after losing consciousness or needing a shock from a defibrillator we aren't allowed to drive for 6 months. So not only can I not drink, but I can't be the DD either!
But I do want to say that after my ablation, I felt amazing. It was like I had a whole new life and every weight and stress was lifted. I highly recommend it.