Extreme fluctuating pulse, all tests normal. Ablation done 2 years ago.

[Jack8]

Hi everyone,

Just curious if anybody else finds themselves in the same predicament as me? In 2014, I started suffering terribly frequent PVCs (ectopics), around 10,000 a day, as well as a very unsteady pulse. I had an ablation in February 2016, and this thankfully was successful and eliminated 98% of the ectopic beats, as most of them were emanating from one focal point.

One thing that hasn't subsided, however, is my fluctuating pulse - I'm not talking AF or anything like that, but a regular change in my sinus rhythm. For example, if I take my pulse over the course of a minute, for the first 5 seconds it will be 55 bpm, it then increases to about 95 bpm by the ten second point before abruptly returning to about 65. This repeats continually, running on a 'wavelength' of about 10 seconds.

I mentioned this to my electrophysiologist, and the only thing he suggested was further EP study of my heart, but I'm afraid of pushing my luck too far and getting unlucky and potentially ruining something that's already on a knife edge permanently. He looked at the changes on a holter readout and described them as 'abrupt changes in atrial rhythm', but reiterated that there is absolutely nothing dangerous going on - no structural issues or severe rhythm problems like AF.

The only thing that does somewhat control it is the following concoction of drugs - 5 mg Bisoprolol x1, plus 50 mg Flecainide x 2 per day, although this makes me feel tired and also induces the occasional fluttering in my chest. I currently don't take any medication, but this is driving me insane. I can't even stand outside for 1 minute without the awful sensation in my chest of my heart rate changing constantly, and I dread physical activity (Something I used to love) in case it agitates it.

I developed depression and panic disorder in 2014 due to this, although thankfully that has disappeared as my brain has slowly learnt that it's not killing me.

This is no way to live - I know my only two options - either to go in for further EP study, or go back on the meds.

I've never come across anybody with this complaint, plenty of people with AF and the like, but I feel terribly lonely with this, and I'm curious to know if anybody else experiences it?

Interestingly, eating aggravates it massively. It doesn't matter whether I eat a healthy salad or gorge on chocolate, once it starts digesting, the heart starts rebelling, with bad symptoms usually lasting for 5 hours or so following a meal. The days I feel best are those where I don't eat. Clearly not an ideal situation.

Anyone else out there with this frustration?

Jack

[wal4d]

Hi

I also have complex arrhythmia such as yours with constant fluctuations though not quite as severe. Even though I have had four EP procedures and two ablations they have had only limited success due to the very erratic and random nature of my ‘misfires’. I tried several medications but found they only complicated the condition and had to stop them - with my ep’s agreement. Eventually I had a pacemaker fitted and this has helped a lot more as it responds to the drops and restores the rhythm - mine drops to low 40s on a regular basis and I have up to 8000 ectopics a day.

I do have bad phases and get very tired but have been able to become more active though I am careful not to overdo it. Eating also can impact on my condition but not as badly as yours.

I would definitely get your condition checked by an ep - complex arrhythmia needs to be regularly monitored even if it is not life threatening.

Best wishes

[Jack8 in reply to wal4d]

Hi, thanks for the reply I had three private follow ups (paid for out my own pocket) with a good EP, and he's reassured me that any issues are not originating from my heart - I've had the full run of tests, including an MRI of my heart, showing no issues. One thing I've never suffered with is bradycardia - occasionally it'll drop to 50 ish for two or three beats but it always ramps up again shortly afterwards! I wish you the best in finding some balance with your condition. Jack

[2k2d]

I have had something similar and my ep also does nor entirely know the explanation. I think there are several things that could cause such fluctuations that I know of, probably more. Dysautonomia, vagal nerve issues (like you could have acid reflux or other gastrointestinal issues playing with your vagus nerve), an excess of epinephrine or the way your body deals with it, channelopothies (very complicated). I don’t know specifically how you feel, how high/low your heart goes, etc but I know that it’s a very miserable problem to have. And honestly, I still don’t know why mine is better now but I made tons of changes to my lifestyle even though I was very fit and healthy before, and I started taking low dose metoprolol and that seems to even out the highs/lows more, plus I don’t feel the surges when it does happen. Mine was triggered by any sympathetic stimulus like eating, exercise, bending over, etc and sometimes just sitting doing nothing. Highly annoying. I know my heart still goes as high as 130 and as low as 38 for no reason whatsoever at least several times a week but I don’t feel it constantly. And, the worst would be, like you described, when it would constantly cycle to say 65-90 over and over again endlessly, or even 80-140 for hours. I point the finger at dysautonomia for that but who knows! I was never officially diagnosed with anything other than inappropriate sinus tachycardia and possibly sinus nodal reentrant tachycardia but for a time I know I probably had leanings toward hyperadrenergic pots. It’s just a pain to travel 10 hours to a specialist, so I waited it out and it’s better for now. I so, so feel for you though. It’s the worst. Hope you can figure out your cause or at least find relief soon!

[Jack8 in reply to 2k2d]

Very interesting response - dysautonomia certainly has a place in my search history! I'm beginning to think that at least two issues are/were at play... The ectopics were undoubtedly the result of cardiac electrophysiology, hence the success with the ablation, although the fact that my heart remains in sinus rhythm (albeit irregular in the non classical sense), does the job of pumping ok and does respond to external stimuli in a healthy way (the average BPM does increase in response to exercise, stress, heat, illness etc) makes me think that the heart from the sinoidial node down is behaving well, but maybe the signals the SN are receiving are the cause of the problem? It's very easily excited - for example, if I combine a heavy meal with jumping into a hot bath afterwards, my HR will be in the region of 150 after a few minutes, so bathtime is only a necessity these days as opposed to a relaxing experience! I often need to nap immediately afterwards as the rapid pulse seems to sap my energy. Day to Day, though, I manage my eating in a way that doesn't over exert my heart - there is a very fine line whereby if I eat just a little too much, I feel a net loss of energy - the demands of digestion and a high HR begin to outweigh the calorific energy intake, and I feel sluggish for a few hours. I do feel that there is some vasovagal connection, although I'm not sure if there's any point pursuing it? Have you had any success with finding a doctor willing to play the trial and error game? As an aside and to take some humour out of all this, here are some quotes I've received from doctors (including cardiologists) over the past 5 years...

"Stop worrying, *laughs*, look at you, you're a fit, healthy young man!"

"Hmm, I can't think of any reason that eating and digestion could cause this - there is no link between the heart and the stomach."

And my favourite... "No, stop thinking about an ablation, ok? It's not something that's going to help this, as ectopic beats originate from random points in the heart." This was from a cardiologist. I actually mentioned that they should check the morphology of the ectopics on an ECG as they may have the same focal point. This was met with a shake of the head and dismissal. 12 months later I had my successful ablation after an excellent EP I found did exactly that...

I used to have the greatest of respect for doctors, as I do for anybody who's taken the time and effort to educate themselves to that level, although after those experiences, I'm not sure I can face going through it all over again by postulating a nervous system issue! This is why I'm curious if you've gone down this path yet or if, like me, you've finally just tried to accept that you're in a slightly broken body!

Either way, thanks again and I wish you the best for the future.

Jack

[2k2d in reply to Jack8]

Hi Jack,

Sorry to hear that you had been given the run around from many of the doctors you saw...and, yep, those are some pretty crazy (and not so intelligent) comments!! I am glad you got the area ablated that could be ablated but you’re correct, in that the problem now lies either within the sinus node or the messages being sent to it. The problem with dysautonomia is that most doctors have very limited knowledge and even the ones that specialize are still studying to try to figure out the mechanisms behind it and all the different effects.

My electrophysiologist was nice but a very busy man so I only saw him every 6 mos and by slow trial and error he determined that he thought I had Innappropriate Sinus Tachycardia. You may have the same. The only thing on the Internet usually is a description of IST whereby your pulse averages over 90 but my EP and 1 other said there is a more common type of IST where your heart responds ridiculously to every minor stimulation. The tricky thing is, there’s some argument as to whether IST is a form of dysautonomia or a sinus node problem so truly they don’t know.

And I too am effected by hot showers, carb heavy food, junk food, and other. I changed to almost zero carbs before dinner then was able to back off to zero before lunch. Just one of many things I changed to help.

Are you in the states or uk? If uk, you’d have an easier time getting access to ivibradine which slows sinus impulses without dropping blood pressure. I tried a sample and it worked but I couldn’t stay on it because I’m in the states and it’s not approved for IST.

As for whether it’s worth pursuing or not, I think you have to ask yourself if it’s driving you crazy and or greatly effecting your quality of life. In my case, the answer was yes, yes.

If you explain to your EP that you are not worried and know this can’t hurt you BUT you are miserable and can’t enjoy things you used to, then they will find something to help. Just don’t let them ablate...mine got to that point and I tried every med again till I found one I could live with.

If mine got bad again I would probably travel to a dysautonomia specialist and see if they had any insight.

And don’t feel weird that you are so bothered by this mystery thing. Most people liken having these types of issues to having late stage heart failure, feeling wise, not actual bodily harm wise. It’s miserable!

Best of luck and give an update if you pursue!