Lackadaisy_baby Posted March 30, 2012 Report Share Posted March 30, 2012 Background: During my TTT in January, there were spikes of what my EP thought was an atrial tachycardia. Fast forward to now, and given what happened on the TTT, combined with a short PR interval on my EKG's, and my sinus tach, he asked if I'd like an EP study.I agreed, thinking that if any ablation were necessary, it would be for AT. Otherwise a short, easy peek at my heart. Nope!The AT turned out to actually be what they considered to be IST (I guess the short PR was meaningless/normal after all), so they went ahead and did a partial ablation of my sinus node. I am NOT a happy camper about this.To their credit, my electrophysiologist and his colleagues are some of the best in the business, and they explained that they were very careful to do as minimal an ablation as possible that they felt would get results. I believe them, and believe they would never do something like that unless they really felt confident in the diagnosis. But still...I'm not sure I agree with IST. At the very start of my symptoms, I considered IST. The first week after my first episode, my HR wouldn't go below 90. It got to 150 one morning just going to the bathroom. But within the next few weeks, things seemed to simmer down. In the evening, even when I was up and moving, my HR would generally stay between 80-100. My first holter showed an average HR of 93. High, but still too low to be IST, especially since my sleeping HR reached the 50's, which (as far as I know) does not happen with IST. I wore a 5-day monitor a few weeks ago, which I don't know the official results of, but I imagine they were normal outside of some tachycardia.As far as I know, people with IST get ridiculous tachycardia with very little movement. Their nocturnal HR doesn't go below 80-90, and their sitting HR is usually tachy all the time. They don't have periods of normality, or at least not frequently.I've had episodes of sitting tachycardia.I've had evenings where my HR in bed before going to sleep will be borderline/low tachy.I've had days where I've felt more prone to tachycardia.I've had nights where I'll wake up tachycardicBUT!!!My HR in the morning will be in the 70's-80'sI've had several occasions of normal standing HRIST does not occur in short "spikes" like it supposedly did during my TTTSo... I'm not entirely sure where my EP got IST from. Maybe I'm mistaken, and it can be episodic instead of constant. But if I really do have it, then it's the world's mildest case. =\Either way, I'm not happy at all. I have no idea what this will mean if I get one of my episodes of lightheaded-ness, especially if I have one within the next couple days while my heart's still irritated. I'm terrified my heart will try to speed up, and wind up going nuts because of the lesions. I already had a period of about 20 minutes earlier where my HR was only 58-63, and beating very oddly. Lots of pauses and hard/irregular beats.And of course, I've still got my regular visual and musculoskeletal symptoms.I want to pull my hair and cry. Quote Link to comment Share on other sites More sharing options...
L4UR3N Posted March 30, 2012 Report Share Posted March 30, 2012 so sorry this happened to you! Does your EP know about your bradycardia and weird pauses? Sometimes (depending how much of the sinus node was ablated) they need to put a pacemaker in. Make sure to let them know what is going on with your heart. I really hope things get better for you!!!! <3 As far as the IST goes, I think the lines are blurred a little as far as what is hyperadrenergic POTS, and what is IST. My sister has IST and has had 2 ablations for it. Unfortunately they did not work (and she described odd things afterward with her heart like what you are describing). She is on a high dose of a beta blocker now which seems to be working well for her.Hang in there, and make sure to tell your doctor how you are feeling!! Quote Link to comment Share on other sites More sharing options...
Lackadaisy_baby Posted March 30, 2012 Author Report Share Posted March 30, 2012 I didn't call him initially, because I know that palpitations and slight changes are usually normal immediately following an ablation. But then I had it again for almost 8 straight hours last night, so I finally called him this morning. He told me that when they do anything to the sinus node, the inflammation can block some of the electrical signals. He told me that as long as it's not giving me any physiological symptoms like lightheaded-ness, etc., it's most likely fine and should clear up soon. I really hope so. =\As far as the IST is concerned, I don't know what's going to happen if the ablation doesn't work. If what I've got is indeed IST, it's so mild that just 25mg of metoprolol was giving me sitting bradycardia at night. My rhythm is normal so often (~80% of the time) that I'm pretty sure most anti-arrhythmics will do more harm than good.The thing that bugs me the most about all this is that for an IST Dx, you have to rule out all other causes of sinus tach, which we hadn't quite done. I had been planning on seeing an endocrinologist and a gastrointernologist to rule out celiac, etc. And if even if they hadn't been able to turn up anything, I'd have liked to maybe try an SSRI or maybe even a different anti-arrhythmic first. Ablation is supposed to be a last resort, and I'd have been fine with it under those circumstances.I can obviously still go to other specialists to have testing done. But if they find an underlying cause for all this and treat it, what'll happen to my HR? UGH.What's your sister's IST like, Rissy? Is it episodic at all? And thanks for the support. Quote Link to comment Share on other sites More sharing options...
goldicedance1 Posted April 3, 2012 Report Share Posted April 3, 2012 (edited) Ut oh! Be sure to report your symptoms to y our EP specialist. I know from experience from whence I speak. I do know that hearts behave funny for a while after they are irritated. Nonetheless contact your EP specialist.First of all, did you sign a release for an ablation? Your EP specialist should have been very sure to do an ablation since it is a permanent thing. I remember before I had an AV node ablation they did an EP study first to see what would happen. Then I was given the option and decided to go ahead with it a month later.Hopefully your cardio was right about your problem. Hope you don't need a pacer. You look very very young. Too young to get a pacer.Back in 93, before POTS was a common word, I had a sinus node ablation that really damaged my sinus node. Needed a pacemaker. Then they discovered I had POTS. Still had POTS symptoms. The worse thing I got was then junctional tachycardia because of the POTS my heart still wanted to beat really fast but couldn't. So than got AV node ablation. Now totally dependent on pacer.The good news I think my POTs symptoms are better controlled because of these two ablations. If you look at the POTS newsletters or research there is a recent 2011 or later Japanese study that suggests that people with intractable POTS that haven't been helped by conventional means may benefit by Sinus and AV node ablations and total pacing.In the event that you need a pacer--I recommend you talk to your doctor about getting a BIOTRONIK. I can make adjustments for autonomic changes. Edited April 3, 2012 by MomtoGiuliana Quote Link to comment Share on other sites More sharing options...
Lackadaisy_baby Posted April 3, 2012 Author Report Share Posted April 3, 2012 I signed a release for the EP study and ablation, but I suppose I just didn't think that "ablation" would refer to anything other than a possible atrial tach. in this case.I called my EP Sunday night after I had a couple episodes of presyncope (felt lightheaded and my vision whited out a bit). I explained that either the pauses I'm having are either getting too frequent or lasting longer. I said my heart is either going too slow or trying to go too fast now - there doesn't ever feel like a normal middle ground. He had me come in yesterday to get an event monitor with telemetry capabilities put on, and lo and behold, the company responsible for watching the ekg called me twice to tell me I'd had a 3 second pause. This morning, my HR wouldn't get out of the 40's/50's until I ate breakfast, and I had several miniature head rushes both yesterday and today.The waiting is the hardest part of all this. He can't just slap in a pacemaker on account of only a day or two of arrhythmia for obvious reasons - he needs at least a few days' worth of data before even considering it, especially if I haven't actually fainted or had otherwise serious symptoms. Plus, he has to just give my heart a while to try and recover on its own.The only upside to this is that I know for sure now that I don't have underlying hypotension issues - BP's been normal every time my machine's managed to get a reading, even at low HR's. Quote Link to comment Share on other sites More sharing options...
L4UR3N Posted April 3, 2012 Report Share Posted April 3, 2012 Im so glad you wore the event monitor!! I am a little confused though because typically if someone has even a 2 second pause they put a pacemaker in.... 3 seconds is a very long pause. Im worried about you. I would almost urge you to get a second opinion. It may be that the doctor who did the ablation is trying to save himself from having a "complication" from the procedure and hoping things will just resolve (of course I cant speak for him, but I cant think of any other reason why he would be waiting to put a pacer in with a 3 second pause). I hope things get worked out for you soon! Let us kmow how you are doing!! <3 Quote Link to comment Share on other sites More sharing options...
yogini Posted April 4, 2012 Report Share Posted April 4, 2012 I don't think IST is based on a number - that might be SVT. IST is just inappropriate sinus tachycardia, which means your HR is too fast from activity. It's different from POTS becase POTS is positional - gets worse in upright position. IST is not dependent on position. I have IST sometimes addition to POTS. The other thingwI am not sure when an ablation is appropriate, but it can sometimes make POTS worse. People here usually get multiple opinions before getting an ablation just to make sure. Quote Link to comment Share on other sites More sharing options...
Tuesday Posted April 4, 2012 Report Share Posted April 4, 2012 IST was the first thing I was diagnosed with, and mine is episodic. I do have periods of normality, but sometimes I will have flare-ups, and I also have periods of bradycardia. During a 30 day holter, my hr would go from a resting rate of 80 while sitting, up to around 140 while walking across the room. During that same period, I had a low of 38 while I was sitting watching tv. I have had periods of constant palpitations for weeks or months on end.I don't know what diagnostic criteria they use IST when it occurs alongside other conditions, or how they separate out what is due to IST and what is due to other issues. I have also been diagnosed with NCS, OI, OH, and POTS.Edited to add: I have never heard that IST must be constant in order to confirm a diagnosis, just that the raise in HR is unrelated to physical activity, and not due to anything else. In other words, it's a diagnosis of exclusion, and it just means that they don't know why your heart rate is increasing so they are going to call it IST just to have a way to describe it. Quote Link to comment Share on other sites More sharing options...
Tuesday Posted April 4, 2012 Report Share Posted April 4, 2012 Also, my cardiologist has suggested that if my symptoms ever become bothersome to the point that they cannot be managed with medication and impact my life, that an ablation, or the use of beta blockers and a pacemaker in combination may be an option. So, it seems like it's not necessarily a completely uncommon treatment option? Quote Link to comment Share on other sites More sharing options...
yogini Posted April 5, 2012 Report Share Posted April 5, 2012 My IST is episodic too Quote Link to comment Share on other sites More sharing options...
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