I was diagnosed 4 years ago with IST after I was in hospital with suspected myocarditis after a viral infection. I am only 18 now and it has changed my life dramatically. I used to be a really active person, playing for three netball teams but now I hardly do anything, even just walking is difficult sometimes. I’m always tired and get short of breath too as well as occasional chest pain. I was put on Ivabradine and now have reduced to 2.5mg twice a day. It did really help to reduce my heart rate as it would just shoot up to 170-200 just doing minimal exercise. I had a 10 day ecg monitor on not long ago and it finally recorded these thumping ectopic beats I have been struggling with recently. It recorded over 6000 palpitations and an episode where my heart suddenly went to 170bpm and felt like the blood was almost short circuiting my heart if that makes sense. I have dizzy episodes and sometimes struggle with vision - am very sensitive to temperature too! I also have Reynauds so have constantly cold hands and feet which often become discoloured. Not sure if all this has developed due to the medication I have been taking...All my echos have come back structurally normal (except from some uncertainty about whether my aortic valve was bicuspid or tricuspid) but I feel like what I struggle with on a day to day basis is not normal- and not sure if there’s something else as well as IST. I know POTS often overlaps with this condition... My blood pressure is also erratic, especially when going from sitting to standing (increases a lot). Was wondering if anyone else gets thumping palpitations with this condition..???
Ectopics with Inappropriate Sinus Tac... - Heart Rhythm Diso...
Ectopics with Inappropriate Sinus Tachycardia (IST)
Wow, sounds really difficult for you. You are a young person, so my story is slightly different (I am 74). I haven’t had symptoms as severe as this, but after implantation of an ICD in 2014, I too had weird heart flutters etc. After a couple of Holter tests I was finally offered a cardiac ablation, which calmed things down dramatically. I do still get ectopics, but have learned to live with them. When I was discharged from the cardiac clinic the Nurse practitioner suggested that I might be suffering from POTS, not life threatening fortunately. I do sincerely hope they are able to sort out your problems and allow you to regain your fitness and general good health. Best wishes
Yes, I have IST and had thumping palpitations before I got it under control. Some were truly ectopic beats originating from other places in the heart and most were the ist from the sinus node. What type of ectopic beats did the dr see on your holter?
And why are they decreasing your ivibradine if it was effective?
As for pots, you are right, there is a lot of crossover between pots and ist. And some drs think ist is just another dysautonomia, like pots. Look up hyperadrenergic pots and see if that fits you. If you lean more towards pots then you likely need a different course of treatment to get some relief.
Best of luck in finding something that helps! I know it’s very miserable.
Glad to know I’m not the only one with these thumping palpitations! How did u manage to get yours under control? And did u suffer with them on a day-to-day basis?
My cardiologist didn’t specifically say what type of ectopics they were but I will ask him at my next appointment.
And my ivabradine was decreased as I was told I could come off it eventually so slowly decreased to 2.5mg. I got used to it for a while but the last couple months I have been really suffering. The thing is I’m getting these palpitations when my heart is beating at a normal rate so increasing the ivabradine to bring my heart rate down isn’t helping with that - and in fact sometimes it brings my heart rate too low for my liking and makes me feel dizzy. It’s not so much the IST that’s affecting me anymore, it’s more these ectopics, and increasing/decreasing the medication is not improving anything. I just find my heart is so sensitive to everything I do!!
Thank you, I will defo have a look at that and see if there’s any other treatments I can have to help!
Abbie
Sorry to not get back to you sooner! That does sound like a miserable deal... I too was put on ivabradine and then taken off and the palpitations came straight back. The ones that bothered me were the fast ones though. If they feel like a pause, thud, those are probably PVCs. They’re annoying too if you have a lot of them. I guess you do just need to check in with your dr and see if anything might help, because you’re right, ivabradine won’t help with those.
What worked for me because it calmed all my ectopics down, including the IST, was 12.5mg of the beta blocker metoprolol tartrate in morning and midday. I don’t take it at night because I only get SVT at night 1 or 2 times a month. That’s just 1/2 of the smallest dose, I cut the pills.
My heart rate is also very low sometimes but I’d rather function like that than have my heart pounding hundreds of times a day. I can walk around with my heart rate at 48-60 and feel MUCH better than previous and that says how bad I used to feel, ha!
I’ve also heard a lot of people with hyper pots having success with the beta blocker propanol, also at a reduced dosage. But if they have low blood pressure, etc they have to take other things with it. Usually you need to see a super specialist to get all that dialed in right. So hopefully that’s not what you’re dealing with.
Anyway, best of luck and please keep me posted when you find out what to try next!
No problem- and yes I’m pretty sure they are PVC’s but will confirm this when I see the doctor again. So did you have the palpitations before you started on ivabradine??
Wow thank you that’s realyl helpful - I will have a look into that beta blocker and perhaps suggest it to the cardiologist.
And yes true, that is much better than a pounding heart 24/7. I also feel my heart beat all the time and it drives me mad! Also, are you intolerant to exercise?? Because when my heart rate is going quite low and I start to exercise or just walk around I feel really light headed...
Ah okay, I need to look into that as I have a lot of symptoms of hyper pots so may be suffering with that as well.
Thanks, I will let you know what happens next!
Abbie
Hi, yes I had palpitations before I started on ivabradine. It made my pvcs worse but my IST better. They only took me off because I'm in the states and it's not approved here for IST, so it would've cost a ton.
As for exercise intolerance, yes, that's one of my biggest issues besides intolerance to any sympathetic stimulation (laughing, eating, excitement, bending over... well pretty much you get the picture, haha). I think my heart is overly sensitive to adrenaline and I produce an excess of adrenaline, bad combo. The older beta blockers block adrenaline so that's why it helps in my case. I just have to get used to the occasional drowsiness, I just counter it with coffee and ironically, mild exercise.
Funny thing is is that I used to be an exercise junkie and was even a collegiate athlete in my younger days. This issue just sort of crept up on me though if I think way back I can remember short bits of similar problems in my youth. I just think my body was so energetic I could handle the bad parts better then and it happened much less frequently. I'm 40 now and have 2 kids so I really don't need to have my heart running a marathon each day or I'm just wiped out!
You very well are probably dealing with IST, but you could have some POTS type issues especially if you are intolerant to being upright. I think many Pots people have to wear compression stockings, have extra sodium, tons of fluids, etc if they are lightheaded and near passing out.
Anyway, glad some of that maybe helps you and keep me posted on what you find out. Are you going to an electrophysiologist or just a cardiologist? I would recommend an EP if you have IST. They know more about that. If it turns out pots, you need a pots specialist or an EP that is super familiar with pots treatment plans.
Good luck!
Hi, ah yes that makes sense - luckily it’s licensed over here in the UK!
And I completely empathise with all of those sympathetic symptoms haha! Yes, I think mine is also over sensitive to adrenaline - and it makes my hands really sweaty and my face flush a lot... Do you find that certain foods/drinks set it off as well?
Wow, yes I think being fitter makes you cope better with the bad symptoms - which is why I think I manage to cope on a day to day basis as I was very sporty and played in national netball teams. Of course, you have enough to worry about without your heart making things worse!
Yes, it’s nice to finally speak to someone who understands what it’s like! At the moment I’ve seen many cardiologists and electro cardiologists but yes I think I’m now being referred to an electrophysiologist but it’s taking time even with private health care.
Will keep you updated.
Thanks 
Seems like our conditions have a lot of similarities! And yes, certain foods/drinks set it off or make it worse. Heavy carbs or junk food, beer, etc. I’m fine with coffee surprisingly. I switch to a diet higher in protein, at least breakfast and lunch, that’s helped a bit. And I can’t have over 2 alcoholic drinks or I run the risk of having svt in the night or a bad morning the next day.
Interesting that you too are athletic... I think it definitely helps to stay somewhat conditioned no matter how miserable conditioning becomes. Does you heart rate stick up high after you exercise sometimes?
Anyway, keep me posted when you see the electrophysiologist and I hope you are not too miserable in the interim.
Yes definitely - I find that any food I like gives me bad palpitations! Like you say junk food and heavy carbs. Also, I find I’m worse after I have any sort of takeaway or go out for dinner. If I were to walk anywhere after eating a big meal I feel awful and sometimes barely able to walk due to the thumping palpitations... And I understand - it puts me off having an alcoholic drinks too.
How long have you suffered for?? I was hoping that this problem would eventually settle down after a couple years but no luck so far.
Yes, I find when I can exercise I feel better for it after and think it all helps. My heart rate used to stay really high after I did any light exercise but now it’s calmed down a bit because of the ivabradine - sometimes only takes 5 minutes or so to come back to a normal rate. How about you?
I have good days and bad days so I try to exercise when I feel ok as otherwise my palpitations limit me to my sofa! It’s hard especially as I’m supposed to be off to uni in September and my heart is just affecting everything I do - drives me crazy sometimes, can’t even remember what normal feels like anymore.
Anyway, best wishes and will speak soon.
Thank you x
Abbie
Sounds, very, very familiar... all of it. Yes, I had problems with heart rate after exercise, it would bounce around 80-130 for hours after, but you're right, ivabradine helped and the beta blocker I'm on now helps. Mine only sticks high now if I mix exercise with high emotion. A month ago, I did a fun run 2K with my 9 yr old daughter and my heart rate was 175-190 for 30 straight minutes, ha! And it's not from deconditioning, i exercise 4-5 days/week. And that was on the beta blocker. That's rare though. The beta blocker is just not enough to handle the combo. Next time I'll probably double my dose and see what happens.
And, like you, i had forgotten what "normal" was. If you can feel it again, you will be so shocked as to how great it really is! I really hope you can. I feel normal 80-90% of the time now and I'm still worried one day I won't and I'll have to go back to that misery that is IST. I forgot to take my medicine yesterday afternoon and woke up to my heart pounding this morning at 110-120, so I'm constantly reminded what things used to be like.
Mine's been going strong for 2.5 years. I too, thought it might go away, as did my Doctor. I don't know if it ever will without meds and maybe they'll figure out a procedure to help in the future. I do remember short stints of the same thing happening to me in high school and early 30s but it didn't last like this.
Try to stay sane & good luck getting your palpitations under some control!!
Best,
Margi
Hi I know this is an old post so you prob don't check it anymore but I am struggling with the exact symptoms you describe, did anything help you? Hope you're feeling a bit better anyway!
Hiya! Well I have had many more tests since I first made this post and have seen numerous cardiologists, it's been such hassle. This year I have had a cardiac MRI, tilt table test and many ecg and blood pressure monitors! I have now been diagnosed with vaso vagal pre-syncope with reactive sinus tachycardia, although my new cardiologist has labelled my condition as "autonomic dysfunction". It's been a long road and all the MRI showed was a slightly enlarged right atrium, but last month I was finally put on some new medication which has helped reduce my supra ventircular ectopics a lot! I've gone from having thousands of ectopics a day to hardly any! I was started on verapamil tablets which worked amazingly in helping with the ectopics to start with but they soon came back (and it made me feel even more dizzy as one of the side effects of the tablets is a lower blood pressure) so I switched to flecainide tablets, which I'm taking now. They have really helped and my ectopics are a lot less, although they have not completely gone away and some weeks they do come back just as bad as before but on the whole it has improved my quality of life. My cardiologist has talked about a possible ablation procedure but I'm only going to consider that as a last resort! What are your symptoms? I really hope you find something that helps soon.
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