SVT, IST, Confusion and Frustration

[Cheers]

About 2 years ago I went to the ER with a fast heart rate. It went up to about 155 while relaxing. When I got there they did many tests (blood work, urine,  and 2 EKGS). All normal. Vagel maneuvers did not correct the fast rate which was sustained around 150 for four hours or so. Finally I was given 40mg of propranolol and it went down to 80. I wore a 24 hour halter that night. And I had an echo 2 days later. The cardiologist said that I had SVT. For many years I had gone to the Dr and ER with similar symptoms and was told it was panic/anxiety. The Cardiologist said that it was likely always SVT. I was put on 120mg of propranolol a day and once I got used to it, I was fine. Actually felt so much better. Before the episode I had been having PVCs A LOT. The med changed my life and I got pregnant soon after and continued on the drug. Everything turned out fine. However, something is bugging me. During that time I saw an EP cardiologist who had all my records of the tests I had taken. He said nothing to worry about. He said there was nothing that he could see that needed to be ablated and that it may even be IST. Well, why cant they tell for sure if it is SVT or IST? Both the EP and Cardiologist just said to stay on medication and no followup is necessary. Said I am fine. Well, all of a sudden developing a heart problem doesn’t seem fine to me. And it bothers me that I do not know FOR sure what I have. I mean, if they are not sure whether it is SVT or IST…how can I be assured it isn’t something dangerous??  I now have severe health anxiety. I am tired and worried all the time.

[Cleveland Clinic]

cheers,

thanks for the post. There are a lot of worse problems you can have. You have a healthy child, you tolerate the medication without significant side effects, and it sounds like the rest of your cardiac work up was normal.  

Thats easier said then done isn't it.  SVT is a common problem. Often we can tell an exact mechanism but sometimes its not possible. If the rest of your health is fine, I wouldnt spend too much time worrinng about this. With a normal rest of your evaluation, it will not carry any long term significance.

You are always welcome to seek a second opinion. Any of the electrophysiologist at the clinic would be glad to see you in clinic.

good luck

[Cheers]

I am so sorry about your experiences. I feel like a jerk complaining about mine. I will only get an ablation or any invasive procedure for that matter if it is ABSOLUTLY necessary to my safety. I am so grateful that my meds are working to control the tachy. Did drugs not work for you?

[Duchess47]

I just posted a question regarding my heart rate going up high and fast while just relaxing.  But after reading this post, I think I must have one of these SVT's.  I have had many tests, would the doctor not mention it if it something that is comsidered benign?  Or does it only show up at the time it is happening.  By the time I was in the e.r. and on a monitor my heart rate had gone down to about 110 or so.  A holter monitor only showed fast heart rate but normal sinus rythym. Would a stress test or echo show this problem?  Thank you

[Cheers]

Thank you for the response. I know I should be very grateful that I do not have something worse. I guess I need to just chill out and forget about it. It IS easier said than done..but I will try.

Thanks again.

[KAD]

cheers,
     Please don't feel like a jerk for complaining about your problems.  They are no less than anybody elses problems.  I hope everything works out for you(:!  Just try not to focus on it to much.  I know that's hard.  Meds didn't work very well for me.  They had me on very very high doses of beta blockers, calcium channel blockers and antiarrhythmics(flecainide) with little to no success.  I guess ablation was the best thing for me, but sometimes I still second guess my decisions.  Especially now with all these recalls on pacemakers.  Oh well, I guess you just have to look ahead and be happy!  God bless and good luck.

[calico1]

There have been cases when sinus ablation works. But there are  more cases where sinus ablation doesn't work and you pay a heavy price for that - you'll end up with an artificial pacemaker. This is why most cardiologists opt to use medications as first line of defense.  I actually complained to my cardio about physical & mental fatigue that at times I'm getting from Toprol 25mg.  I asked him if I can split it in half. He said "No. So you're not tolerating...then why don't you take it in the evening".  He basically doesn't want to take me out of my meds.

[tickertock]

I find the key to taking beta blockers is not give in to the side effects, though admittedly I never really suffered from any of the dreaded side effects of beta blockers besides feeling slightly , very slightly sluggish, keep moving and don't give in or concentrate on the effects of the medication. Its mind over matter in most cases, having said that, they are some that just can't tolerate them, but if they are helping with your symptoms don't just give up.

Ablation of the sinus node or sinus node modification is very risky and mostly without any relief at all, usually patients end up with worse problems than the IST itself.

As I understand serious complications from IST are very rare, most symptoms from my understanding usually disappear or get less in middle or advanced age, surprisingly some with IST live well beyond the average life expectancy.

[wmac]

Very interesting comments from all of you. This is of intrest to me at the moment because im scheduled for another epstudy and hopefully an ablation this coming Wednesday. I have nonsustained vtach and svt as well pacs, and pvcs. I also have evidence of a dual av node. Had ep study in january of this year with no luck they could not induce the vt or svt and they were very aggressive with me and then they put me into vfib yikes.  But this is kinda weird I have been having second thoughts about this and really freaking out bad. I dont want to end up with a pacemaker and im just really worried about that. All my test have been good and they say I have a good healthy heart and great ef. I just so happened to get this vtach and it does control my daily life and where I go and what I do all the time. I just wonder if I should just wait and see what happens but I would also like to be fixed if possible. They are doing this at the University of Utah. I would be so upset if I came out worse off than now. I just found it interesting that all of you were talking about ablations and such and dont want it unless totally nessecary maybe I should really think twice about this.
wmac

[tickertock]

IST is a type of SVT, only thing it occurs directly from the sinus node and not from another ectopic atrial foci. I have the same type of SVT, imine used to be called PAT, PAT and PSVT is one of the same, and is broad term used for mostly any atrial tachycardia occuring above the ventricle. Mine is completely controlled with the beta blocker atenolol, though I still have occasional PVCs. I have asked about ablation also, but told it was not warranted or even worth the risk in my case, especially totally controlled with beta blocker.

[Cheers]

Thank you for your comment. It has never been explained to me that way. I was under the impression that SVT and IST were different things. That SVT was a short lived burst of a very high rate..where as IST was more of a constant high (but not as high as SVT) rate. I too still get PVCs especially arount the time of menses. I appreciate the benefits of the medication. But I am so very tired all the time. But, it is still worth it. I have such a fear of getting a high heart rate I even find it difficult to exercise. Not to mention I get SO out of breath and exhausted so easily. That isnt cool when I am trying to lose the last 15 lbs of baby weight!!

I often wonder if I should have more tests or if I should just accept what I have been told, take the medicine for the rest of my life, and try to stop thinking about it...

[tickertock]

Its true the most SVTs due to a reentry loop such as in AVNRT or AVRT ie WPW syndrome are defined as PSVTs and are paroxysmal in nature starting and stopping abruptly, But in general IST is a type of SVT, so is PJRT, like I have been explained Supraventricular tachycardia is broad term for nearly if not all atrial tachycardias.

I really dont suffer any side effects of the beta blocker so in that regard I'm lucky, unless it wasn't controlled with safe drugs like beta blocker, then I would seriously consider ablation or an EP study, other than that I trust my doctors that it is a mere a nuisance more than a real threat. Good luck.

[jan]

The IST is from the sinus node, the (P)AT's are atrial tachys, the SVT's are supraventricular (over the ventricles), and so are all tachys, but originating from different areas of the heart.  Some may say IST is a SVT, but it isn't when you are considering they're from different areas.  A cardio I had in the hospital barked at a resident for listing my IST as a SVT.

I think any can be sustained, except of course a PAT or any of that sort, that means paroxysmal (usually a short burst).

I am not a dr., just a patient given what info I've been given.

[jan]

Oh, I wanted to mention that the previous dr. on this forum suggested to me an ablation for the IST.  They modify the sinus node.

[Cheers]

That is another thing I thought was weird. When the EP looked at my file, he said he "sees nothing to be ablated" so that wasn't an issue for me. But when I read about IST..I often hear ablation as a treatment. So if he 'sees nothing to be ablated' how can it be IST OR SVT??? I am confused by the mixed messages and by not having a confirmed definate diagnosis, ya know??

[jan]

The 1st time I met my EP he asked why the referring cardio didn't set me up for an ablation.  The referring cardio thought it was SVT.  The EP said upon follow up (we met for a TTT) that if it was a SVT he would ablate.  

At that time they didn't even do ablations for IST.  I think when the cardio here suggested it, that maybe only Cleveland Clinic and other hospitals on the forefront were doing them.  That may still be the case.  I, for one, don't think I want anybody messing with my sinus node.  Not at this point anyway, let them get more practice under the belts.  LOL

[Cheers]

Oh I hear ya!!!

Is it more dangerous when something is wrong with the sinus node opposed to ventricles? Just curious.

I had read up on ablations when I first got the SVT diagnosis. When the EP said no ablation for me I broke out in tears..I was bawling because I was SO relieved!!! I did not want to have an ablation..didnt want anyting to be serious enough to warrent one..and couldnt handle the anxiety and anticipation of going thru a procedure like that.

Thanks for your comments. They are very helpful.

[jan]

When my EP said he couldn't ablate because it was IST, not SVT, I was very happy, too.  LOL  

I'm not sure want you mean about being dangerous, the IST or the ablation?  I have been told the IST is harmless, unless it's uncontrolled and your in tachy more than not.

If you're anything like me you will keep asking for info and learning, and through that you will eventually be able to calm down and accept it.  Take your meds, go to your reg. check ups, and just be AOK.  :o)  (If you are having problems with one med don't be afraid to ask if you can try another.)

[KAD]

Hi, sorry to hear about your problems.  I have had 4 ablations for IST.  They were very aggressive with ablating me due to an extremely high heart rate all the time(130-180).  They said I would get an enlarged heart(cardiomyopathy) over 5 years if nothing was done to slow it down.  IST ablations carry risk b/c they are ablating the hearts main pacemaker and if they ablate to much you will end up with a pacemaker.  I did end up with a pacer due to my heart rate dropping to 30-40 after the third ablation.  The other risk with IST ablations is hitting the phrenic nerve that runs directly behind the sinus node.  The phrenic nerve controls the movement of your diaphram with breathing.  All of this is stuff I learned just from my own experiences.  I'm not a physician.  My advice would be to go to a large medical institution that had a lot of experience with IST.  I am only 28 and am now dependent on a pacemaker.  Just found out my pacer was recalled also.  It could be a lot worse though!  Take care and best of luck to you.

[Cheers]

I just want to thank everyone for taking time to comment. All of your words have been very helpful and appreciated!!! Please know that.

thanks alot!!

Heather

[Mike051573]

I dont think anyone could be more as "confused and frustrated" as me on this,yet I have to say how GREAT that there is this "forum" online where you can see/read feedback.
  Anyways,as Ive posted before who knows what I do have,(it could be now IST - Inapropriate sinus tachycardia - anyone ever hear of that?) Yet over the last few days the symptoms (or should I say "the symptom" because its only one) is the PVCs,the "flip-flops" that feel like an "extra strong beat" added to your rhythm.I absolutely do not hit the floor with shortness of breath or chest pain.Yet when you experience these "extra strong beats" you literally (and actually think) you are ABOUT to die.
   I have an average now of about id say 10-15 PVCs a day now (that have jumped in number like this because of the added stress I have had piut on me lately - or who knows maybe 20 now!),I keep thinking that there is some "major underlying condition that they missed",or something serious,etc..
  I tell you this,if I didnt "feel" them then I wouldnt care,yet if youre as obsessed as I am over this,to everyone out here reading this,each time I get a "run" of these or "episodes",I am absolutely TIRED of having to keep "getting ready","To keep getting in the runner's block and kneel",in preparation to have to run to the ER everytime this happens because of the fact it scares me half to death,or suddenly dropping over.
  Like Ive said before in past posts,I have had more EKGs and ER room runs over the past few years then I think most of you have had PVCs combined.Ive also had a holter 24hour and a stress test done which showed no "structural defects,etc.."
  Yet...still,I have a history of no eating right (once a day),severe anxiety,and just am tired of having this carry on.
  In less then three weeks time I am supposed to go out to California for an INCREDIBLE job offer that I could only DREAM OF,and I sit here worrying about this.
  Because of these PVCs and worrying I do NOT want to lose an opportunity such as this.
  I ....am at the point where I am about to start taking Atenolol for the first time for these (PVC's) at a 25mg dose,and does anyone know of any side effects to this med? or been on it? or is that considered a high dose?
  Any info is appreciated,as I one day hope that....I can return to a "normal life" I once knew and used to love....

- Mike (the king of pvcs)

[jan]

You asked if anybody knows about IST - inappropriate sinus tachycardia...that's what we've been talking about.  As far as the atenolol it could make you fatigue, another side effect is depression.  With me atenolol gave me my life back, took away my fatigue.  This is because it stopped the IST and the NCS.

You can look up more side effects at this link:

http://www.drugdigest.org/DD/Home

You really should consider counseling.  If you don't because you can't afford it look for free counselling.  My township had it until recently, maybe yours does.  Also, there are organizations and churches out there that offer it.  Of course if you check out a church you need to find out if they handle only religious counseling.

[dewitt]

check out the st jude hospital in minnesota. they are supposedly now doing non invasive ablations with high frequency ultra sound with a device that's placed outside the body

[dewitt]

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[barclay]

Hello from England

My son was born with PULMONARY STENOSIS which he had an operation for as a baby, he is now 12 yrs old.
He still has a hole in his heart and heart murmor which has not caused him any problems at all and he has 3 yearly check ups.
Although when he gets over excited and out of breathe his lips go very blue and his complexion goes a dusky grey.
He also has a severe complex communication problem and finds it difficult to tell anyone if he feels unwell and when he does show these symptoms he wont rest.
Just recently I have noticed that when he is running around even slightly the symptoms appear and he goes really sweaty but cold. He was sent home from school last week because while he was on the computer he went VERY sweaty and 'grey' and they were really concerned about him.
I took him to see his CONSULTANT yesterday and he checked him over and has referred him to the HEART CONSULTANT (who he is already under) for further ECG's and tests.
He suggested that he may be experiencing SVT and asked me to check his pulse regular and make notes.
I am very anxious now and have loads of unanswered questions.
If it is SVT is it controlled?
Could it be anything else?
There is probably nothing you can tell me until my son goes for this ECG but I had to ask.
Thanks for letting me share this
BARCLAY