VT??? Please help… @AgentX86 @Tracey_E @crustyg @gemita …. and others?

Hi there guys 

It's been a while. I wondered if I could get some advice as I’m really concerned and it's affecting my day to day life significantly due to worry. 3 days ago I had a heart rhythm episode. For context, I have a Micra leadless in the right ventricle and it seems that I feel it when it kicks in (very rarely I’m hardly paced at all). I either have sinus node dysfunction or vasovagal syndrome. I needed an emergency pacemaker due to a long pause. My diagnosis is sinus node dysfunction (but I have a history of vasovagal episodes leading to pauses too). 

So when I feel the pacemaker kick in (if in fact it is the pacemaker and not all ectopic beats) it feels exactly the same as ectopic beats, like a thump in the chest/neck. It only ever kicks in for one beat, sometimes two maximum. This heart episode 3 days ago felt like a series of ectopic beats one after another. Powerful ones too (a lot stronger than any pacemaker activity I feel or my normal ectopic beats). It lasted less than 30 seconds but was terrifying in the moment (so powerful). I felt so faint and nauseated I thought I was going to lose consciousness, so called 999 (I got put on hold initially as they were so busy, didn't help with the worry). I was alone with my young son and thought the worst. 

In the hospital all bloods were normal etc, they saw lots of single ectopic beats on the monitor but weren't concerned at all. I tried to focus on the event at home and to tell them that it was an episode that had now passed but they just kept saying that everything is fine now! This was clearly a short lived episode like when my heart paused and I needed a PM (they only found that as I had a loop recorder thankfully at the time). 

I haven't had any further episodes of continuous ectopic beats. But I have found out that a series of ectopic beats is essentially what VT is. I had no idea. I always thought ectopic beats were harmless. This has distressed me a lot as I have always known VT to be risky. After this brief episode the nausea continued for several hours and I felt completely wiped out for 2 days. I asked at the hospital what could make me feel so dreadfully unwell like this. 
 

The only thing different that day was that I had one cup of real coffee (not decaf) for the first time in months. I do drink caffeinated tea so am not completely removed from caffeine normally. This episode started about two hours later out of the blue whilst I was picking something up off the floor. It doesn't seem too relevant but thought it  could possibly be a factor. 

I had been doing so well in terms of worrying (it's been 3 years since the PM and I had struggled so much at the beginning due to my brother dying suddenly only 3 months prior to my heart pause and PM insertion of seemingly unrelated, heart failure). He was only 30 and died in his sleep with no knowledge of a heart problem. My dad died suddenly In similar circumstances at age 43 of heart failure with no diagnosis of heart problems whilst alive. I do not have any heart disease etc, although had been getting some unexplained angina type pain on exertion which is unexplained - my arteries seem clear etc from a nuclear CT scan and this pain has seemed to improve over the past few months. 

So, back to the arrhythmia issue. I called the cardio physiologist tech people at the hospital the next morning as the hospital said there was nothing more they could do and blood results (electrolytes etc) and ecg were normal. The PM technicians asked me to send a remote download to check my PM was "working" okay and all seems fine. It's very limited what data they can get from these Micras as they're super basic PMs. It doesn't seem that the Micra has a memory for heart events (although I might need to call and ask this specifically). 

I wondered, can this single chamber PM cause these ectopic beats, especially this series of beats? I feel like it was ectopic beats and not my pacemaker kicking in this time. What about the rate response setting being sensitive? The pacing voltage? (I had to have automatic threshold testing function turned off as I could feel it every hour). The cardiologist did say that ectopic beats and me feeling my pacemaker would probably feel very much the same! A different cardiologist did explain why the PM is felt and also mentioned pacemaker syndrome. I couldn't fully grasp the significance of that relating to me feeling my pacemaker kick in, as so much was discussed in the conversation. What would you advise? What if it happens again? It's so terrifying in the moment. I live alone with my young son. Should I ask for a loop recorder to be put back in?  

I asked my mum to come and stay with me for a few days as I’m so scared. It's 4am and I can't sleep waiting and wondering if it's going to happen again. I don't know why this has affected me so badly. It just felt so wrong and sinister when it happened, it didn't feel right at all. It could also have had a benign cause I assume? Can anyone help me put this in perspective, reassure or advise on the next steps I should try and take. I just want this to all go away. 
 

Many thanks 

 


10 Comments

Hope this helps a little

by Gemita - 2022-09-28 10:24:01

Claire,  

You are clearly troubled by your arrhythmias and highly “symptomatic” during episodes.  With my ventricular ectopics I feel wiped out sometimes when they are prolonged. Coffee for some of us is a definite trigger for ectopics, as is alcohol.  I cannot drink either anymore. 

You say “but I have found out that a series of ectopic beats is essentially what VT is. I had no idea. I always thought ectopic beats were harmless.”  Ectopic beats are generally harmless Claire unless they are constant or frequently found to trigger other arrhythmias like atrial fibrillation (in the case of atrial ectopics) or non sustained VT (in the case of ventricular ectopics).  This clearly happens to me.

So far nothing concerning has been found by your medical team to correlate your symptoms with a specific rhythm disturbance like non sustained VT (NSVT).  This is frustrating I well know.  You may need longer term holter monitoring or a Zio Patch to pick up and record all your daily arrhythmias.   

In view of your family history and the loss of both your brother and Dad at a young age, I would continue to push for answers if you continue to remain symptomatic, particularly with unexplained angina on exertion.

Now that you have a Micra pacemaker to help protect you from any long pauses, syncope (collapse) or a slow heart rate, I doubt that you would be offered another Reveal Linq Loop recorder implant in the UK unless further evidence is found of a significant arrhythmia to indicate a need for better longer term monitoring and treatment.

That being said, you know your own body, what you can and cannot tolerate and if at any time you feel you need help, you should seek it. If symptoms occur again and you feel unstable (faint, dizzy, unsteady, weak, clammy, breathless, have chest discomfort during palpitations and these symptoms continue) either speak to your GP, ring 111 or call an ambulance if you are unable to get yourself to A&E.  Anytime you feel you are in trouble, then take action and get help.  

I recall from your earlier posts there was concern over whether the leadless pacemaker was the best choice for you?  Perhaps you are developing a dislike for pacing in the right ventricle although you say you are hardly pacing? 

Claire, have episodes of NSVT actually been seen? Short runs of NSVT can be a common finding even in healthy individuals.  The definition of NSVT is an ectopic ventricular rhythm with a wide QRS complex (120 milliseconds or greater), rate faster than 100 bpm, lasting for at least 3 beats that spontaneously resolves in less than 30 seconds.  

I get runs of NSVT which are recorded by my pacemaker.  Providing your NSVT episodes are for a few beats only at any one time and infrequently, they may not need treating or cause any concern, but only you will know from your symptoms.   NSVT runs can be associated with heart disease or other acute illnesses but I see no evidence of this from your investigations so far.  I wish you well

extra beats

by Tracey_E - 2022-09-28 10:57:47

I'm not as familiar with the leadless pacers but extra beats are generally harmless. They can feel very scary tho! Sometimes meds can help calm things down. Perhaps ask if you can have a prescription to take one as needed. Don't take them all the time if you don't have to, they have side effects, but I have an atenolol prescription that I take if my resting rate gets too high. 

One cup of regular coffee can cause issues for me hours later. I'm super sensitive to caffeine. 

It's a bit of a vicious cycle, but anxiety can cause arrhythmias also. If the anxiety is affecting your life, it might be time to ask for some help getting it back under control. 

Micra AV

by dogtired - 2022-09-28 11:56:24

The AV version of the Micra is a dual chamber pacer.  Its is how ever limited to sensing Atrial beats and has NO upper chamber pacing campability.  Its VDD and not DDD so its only suitable for folks with normal sinus function, they would not have selcted this if you had sinus dysfunction.

Thank you

by _Claire_ - 2022-09-28 14:01:36

 

@dogtired sorry I didn’t say that my PM is the Micra TPS (the first leadless one) single chamber, the Micra AV wasn’t out when I got mine (I don’t think). 

 

@Gemita, I’m so sorry that you experience NSVT. I really admire how calm and positive you and @Tracey_E both remain. Yes Tracey you make a very good point. I thought I was steadily getting there until this recent event threw everything up in the air for me. I hope to get back to that stage in the future. 

 

@Gemita, my ectopic beats were possibly 10 in a row with this recent episode so I thought that could have been a NSVT episode. My normal ectopic beats are just single ectopic beats, and sometimes 2 or 3 in a row, which don’t normally worry me. I’ve never had 10 or more in a row without a break in between. To be honest I just imagine that VT or NSVT episodes are going to lead to cardiac arrest and sudden death. It’s hard to shake that thought. It’s perspective that I need. I’m not sure why I’m so affected by these arrhythmias, when others remain so calm. 

 

I think by first being introduced to heart issues by my brothers sudden death and then my collapse and heart pause 3 months later, has made my interpretation of heart problems, arrhythmias and pacemakers to be very negative, and at times my perspective might be skewed a little. I find uncertainty difficult. 

 

I think being responsible for a young child and living alone with him, whilst experiencing these episodes is terrifying for me and makes me think of the worst case scenarios. Being completely isolated from other people with heart problems doesn’t help. Thank you so much as these comments have helped significantly. 

 

 

I wish You Luck!

by MinimeJer05 - 2022-09-28 18:56:17

Claire,

While I can't offer much better advice than what Gemita and Tracey and others have already offered, I can say that I understand that negative feeling associated with all of these cardiac complications and I can totally relate to it feeling like you're in having a heart attack/dying and that in itself can cause severe anxiety and lingering panic that can throw you into a vicious cycle of feeling like garbage and likely causing more incidents.

I would try to approach things from as positive mindset as possible -- break things down into chunks and deal with what you can physically and mentally manage and then don't be afraid to tag in for help when needed (doctors, these forums, family, friends, etc.).

For starters, maybe that cup of coffee was a trigger? I guess only you can weigh in on if it's worth trying again at some point or not.

For mental health and stress/anxiety, perhaps try looking into natural cures to this (soothing music, drinking more water, staying hydrated in general, trying to go for peaceful, relaxing walks, etc). If that isn't going to cut it, perhaps reach out to your general doctor for assistance? 

It's so easy to fall into the pits of feeling helpless and like you're on the death bed, but KNOW that better days are around the corner. I do wish you find the answers you are looking for and start having better days very soon.

Take care

Jer

Ectopic beats

by Gemita - 2022-09-28 19:38:58

No Claire, non sustained VT (NSVT) which is an arrhythmia that starts and stops on its own, is not the same as sustained VT or worse VF, so don't imagine the worse.  If you had the latter arrhythmias you would either be dead or have an ICD to protect you from sudden cardiac death.  Having said this, ectopics can cause havoc for some of us who are very sensitive to even the slightest heart rhythm changes (that is me).  Without feeling my pulse, I know when my rhythm changes just by the way I feel.  It is not the odd one or two skipped or missing beats but the continuous runs of ectopics that debilitate me and once they start they can last for hours.

So ectopics are not dangerous in themselves, but may well lead to other arrhythmias and you can certainly become highly symptomatic with ectopics, particularly when prolonged.  Doctors always want to know about "symptoms" since based on symptoms, they make a decision on whether treatment is required or not.  Those without symptoms are indeed fortunate, since they can well leave alone.  Having an irregular rhythm, however benign the heart rhythm, can cause anxious feelings but these feelings usually disappear once our heart returns to a steady, regular rhythm.  

Symptomatic tachycardia

by Rch - 2022-09-28 23:06:55

Sorry to hear about your scary experience especially while being alone at home with your little son!!! My gut feeling is that it is more likely an atrial tachyarrhythmia rather than the ventricular. Nonetheless given your personal and family history of heart disease, you have to insist on further work up to r/o any malignant ventricular arrhythmias. I'm not sure whether your Cardiologist can dig in to look for the pacemaker electrograms on your device corresponding to the date and time of your symptoms. If not, an implantable loop recorder or at least a 30 day event monitor that's compatible with your device, should be ordered! I wish you well!

 

Thanks everyone

by _Claire_ - 2022-09-30 18:34:35

MinimeJer05 - Thank you for your very kind words and helping me to remember about my mental wellbeing. I have cleared my work schedule for next week and am spending time with family, walks etc to try and get over this little set back. I don't think my super busy schedule of being up at 6am and not stopping until 9:30pm when my son is asleep was working very well... I’m going to try to pace (gosh, no pun intended) my days more effectively with times for breaks and some down time at weekends hopefully. Thanks again! 

Gemita - Thanks again for your reassurance. I’m just so sorry that you are experiencing these arrhythmias frequently and for such long periods each time. I can't imagine how I'd cope and you're still so positive. Your comments have helped me feel at ease these past couple of nights when I start worrying about ectopic runs. I dont think you have an ICD (am I correct?) has that been discussed with you, would that be necessary at some point? How are you arrrhythmias controlled? Yes I totally totally relate, I have a super sensitive nervous system and feel absolutely everything. Every beat, every change in rhythm speed, every ectopic (if that's possible), every check my PM does (the 3:30am one wakes me up sometimes), any time I’m paced for a few beats - basically I feel it all, which I think is a special kind of hell! I don't think I'd be half as worried if I didn't feel it all. It's pretty hard to forget with constant reminders. 

Rch - thank you, I hope they are benign ectopics. I did check and my Micra TPS has no event memory function. A little update, I explained about how powerful these ectopic beats seemed, compared to my more normal ectopic beats, and that there was a run of them in a row, my cardiologist has ordered an urgent ILR to be put back in my chest to monitor me again for a couple of years. AF was also said to be a possibility (as I have such significant family history of AF). I hope I never experience an arrhythmia like I did this week, but if it happens at least we will know what happened this time.

I also noticed some low magnesium and phospahate in my blood tests - I’m actually going to post that in a separate post incase anyone has some knowledge. 
 

As always, thanks everyone for your time and wonderful comments! 

Claire

by Gemita - 2022-10-01 05:48:42

Claire, no I do not have an ICD and there is no way of knowing whether one will be needed in the future, since electrical disturbances may change at any time.  Fortunately I have my arrhythmias under control as far as heart rate is concerned which is an important part of arrhythmia control.  

Prior to my pacemaker I was experiencing some very high atrial rates which were conducted to my ventricles and I was extremely unstable.  Now with my dual lead pacemaker, when I go into a rapid atrial arrhythmia like AF, my clever pacemaker switches pacing modes and stops tracking my fast atrial arrhythmia for the duration of the episode, switching back to my original atrial pacing mode on cessation of my arrhythmia.  Although mode switching causes turbulent symptoms on initiation and cessation of mode switching, it is preferable to having uncontrolled, lengthy periods of high atrial/ventricular rates which always led to instability.

My arrhythmias are helped/controlled by (1) mode switching (2) beta blocker Bisoprolol (3) successful outpacing of slow arrhythmias (ectopics) by having my lower rate setting set at 70 bpm, since I had predominently bradycardia induced arrhythmia.  Of course I still get bad periods, but compared to pre-pacemaker days, when I needed high dose anti arrhythmic meds to control my tachyarrhythmias, I have my arrhythmias firmly under control now and they very rarely cause instability which used to scare me.

If your 3.30 am pacemaker checks wake you, ask for the time to be changed for later, perhaps during the day?

Gemita

by _Claire_ - 2022-10-01 18:11:28

Well I’m really glad that they are under control (despite it still sounding like hell). I can't imagine what you've been through, as what you're currently dealing with sounds so hard still. I've really only had a very small taste of the distress that arrhythmias can cause! Your time and patience (and others) in replying and explaining everything have really helped to calm me down after my recent episode. I really thank you for that! It's just what I needed. I’m trying to change my attitude to a more positive one and am going to try and stay more active on this forum. It's so helpful for me to be around those of you that are so calm and positive about your heart conditions and pacemakers. Every time I disappear for months I end up coming back in a state of despair 😆 Your pacemaker does sound super clever. I’m really glad that that strategy worked well. I wonder what a resting heart rate of 70 feels like, I’m soooo used to a resting heart rate of around 50, even late 40s that I can't imagine that. I’m glad it's working though. I did read a post yesterday where you said your heart has been quiet for a few days so I really hope you get some respite and a break from this for a good while. All the best as always.

Claire 

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