Idiopathic ventricular tachycardia

[Staffylover67]

Hi,

does anyone have any tips for this diagnosis?

Had an ablation that hasn’t worked although I’ve been told it can take more than one procedure is the medication temporary or permanent?

Any tips & coping strategies would be very appreciated 🙏

[Okapis]

I discovered after my first ablation that there was a "blanking" period of 3 months while the heart sorts itself out where they (cardiologists) ignore arrhythmia. Wish they had told me!

I had three cardiac ablations over 20 moths before it worked with sepsis between 2 and 3. I had 8 years of peace from AF. Wonderful. Then alas went into heart failure precipitated by an LBBB

Tips - best one I can give you is try and sleep. Episode would then terminate. Met a specialist cardiology registrar who said that when we slept we released a particular chemical which helped.

Disappearing off to have a sleep is not always possible though

Stop moving, sit, do not try to continue whatever you were doing.

If the episode continues (ask your cardiologist how long) you will need to take yourself off to A&E for a chemical stop or even cardioversion.

Ask about pill in the pocket strategies with either bisoprolol or flecainide especially if you can feel an episode coming. Hope that helps

[Staffylover67 in reply to Okapis]

Thank you for sharing your experience and tips.

IDLVT means they can’t find a diagnosis or what’s causing it?

Hopefully in January they can give some insight to what and why this is happening 👍

[Chinkoflight]

Hi staffylover, This going to be a lengthy answer for a reason which I'll explain at the end.

I too had a diagnosis of idiopathic left ventricular tachycardia. This followed a Sudden Cardiac Arrest (SCA). My treatment was implanting a Cardioverter Defibrillator (ICD) and adding Bisoprolol to my existing Edoxaban anticoagulant and atorvastatin. I had previously had paroxysmal AFib detected as follows up monitoring for a stroke. My medication is for life.Sharing more detailed information can be helpful when you need support. It feels like you are still in early days of your treatment and are floundering a bit to understanding what your treatment plan is.

So firstly, it seems to me you don't really have a diagnosis, more a description of what has happened. Idiopathic is used when the event can't be explained, so it's not really a diagnosis. (So is paroxysmal for Afib and cryptogenic for stroke) The doctors have determined there is perhaps an area of your heart rhythm generator that might be causing the tachycardia so have attempted by ablation to knock it on the head so to speak. They look at the ECG traces for some of this diagnostic work.

Cardiology units, especially in General Hospitals seem to me to have limited specialities in the teams, so my hospital did stents and implants but no ablations. So I had an implant! My hospital didn't have the expertise to investigate my heart condition other than a basic scan, x-ray, angiogram and echocardiogram. It couldn't do specialist Cardiac MRI or PETscan. So some of my cardiologists wanted to diagnose a heart attack, because that is most common event (90%) with an ischaemic cause. I had raised blood troponin levels on admission (a signpost for HR but can be other things) but they were surprised to find no ischaemic or obvious heart defects in the angiogram and echocardiogram. So idiopathic LVT, fit an ICD and discharge.

I had a conversation with the locum cardiologist and asked if they had any curiosity about what had caused my SCA, and of course that would mean being sent to specialist units for the extra investigations. This meant a nurse, ambulance to be detailed twice to take me 50 miles to the specialist hospital. They could not offer a diagnosis but did find scars and thinning of my heart and signposted the need for investigations in the other 10% of possible causes. So they looked for evidence of sarcoidosis (inflammation) but couldn't see any active cause but stopped then to look for other causes because of time and cost.

I think if I had been living in the area where the specialist hospital would have admitted me I would know even more about my condition, possibly with a name and treatment plan in addition to the ICD.. They would have done all the tests.

I think you need to know more about your tests and results to date that have driven your treatment plan.

I have gone on at length because 10 months ago I knew none of this and it's really important as you manage your condition going forward that you know more.

I have just moved house so need to transfer my monitoring of my ICD. In the uncoordinated health service, referrals to hospital other than emergency must be via a GP. But I need my monitoring switched over asap not at the end of a non urgent 36 week+ waiting list to my local hospital. I have already checked that in my area there are three hospitals and only one monitors ICD's. I have contacted that hospital team so they know about me, they confirmed I needed to be transferred to them, and I arranged to see my new GP , you'll have a phone call in a 6 hour window, was the response. I waited, it didn't happen, but I saw on the NHS app in spite of me passing all the information to the GP surgery, he wrote to the local hospital because I had a pacemaker!!! Sloppy......

You will see for many people on this forum, the need to own and be on top of your own health care is really important. You need to know how your cardiology team is currently satisfied or explains why there are limitations in describing your condition as idiopathic as the starting point.

I hope it isn't too long a read, is helpful and I hope your condition settles. Knowing more has helped me cope better, otherwise you can be left feeling helpless.

Kind regards. Nigel

[Staffylover67 in reply to Chinkoflight]

Thank you Nigel for your in-depth reply 😊

So I don’t have a full diagnosis as of yet ? I presumed Idiopathic was a condition.

I’m under Harefield heart & lung hospital but also Wexham, I see the consultant in January.

When I had my first ablation in September they took me off flecanide & Bisoprol 5 days before, which I know why, on the day of the procedure they caused bleeding and had to put me out, they never told me, the consultant said all was well.

I wasn’t put back on my meds at the end of September I was rushed into resus with erratic beats… kept in for a few days and put on higher levels of flecanide and lower dose of bisoprol.

Was admitted again mid November as kept getting a gurgling or bubbling around my heart.

This was at Wexham, they decided to fit a cardiac monitor, I saw a doctor on the ward whom explained to me I could have died as there was a complication?

I feel frightened what the outcome will be? I presumed after the ablation I would of fully recovered … I know there’s a blanking period.

I wear an Apple Watch to give me reassurance but I’m always anxious as I find the whole experience traumatic… they had to take the monitor out last week as it was coming out the skin, so will be having a refit in January.

Appreciate your time

Thanks Kay

[Chinkoflight in reply to Staffylover67]

Hi Kay, I sensed you may have had a lot worrying you. VT's are for Doctors the scary end of treatment and risk because they are so unpredictable. I was in CCU, the most observed section on the cardiology ward for 6 weeks right next to the crash trolley!! Fitting an implanted loop recorder is the most accurate way they have of recording your ECG outside of hospital. The AI analysis of the ECG output the ILR sends off through the bedside monitor is reckoned to be more sensitive to picking up irregularities than any human can be wading through ECG paper traces.

I think describing what has happened to me may help you get more put of your cardiology appointment. It would be really helpful to know whether they have ruled out any structural heart problems, that is all your valves are all working okay, and the blood being ejected from your left ventricle is in the okay range. This is the EF ejection fraction. The fraction of the blood capacity of the chamber pumped out, and I believe anything above 50% or so is good. In VT the chamber can pump so fast it sort of flutters and actually doesn't ject much blood hence the likelihood of collapse and cardiac arrest. The brain and the heart as the two vital organs don't get enough blood so shut down.

My ILR was implanted to aid investigations to find a cause of my cryptogenic stroke. They were looking for Atrial fibrillation. The atrium sits above the ventricle, controls the overall heart beat from this area. Again, if the atrium goes into a rapid beat, it doesn't actually pump the blood out into the ventricle to then get pumped on. This blood can 'pool' in the atrium, sort of stagnate and start to clot, form an embolism. When the heart beat gets going again, it pumps out the embolism which goes quickly through the large arteries to the brain or in some cases into the internal arteries supplying oxygen to the heart itself. Both are not good events! It's why if there's any perceived risk the will prescribe an antiplatelet or anticoagulant medication.

The ILR, three months after implant picked up a short Afib event, without me knowing it. The consultant phoned me at home and called it paroxysmal AFib. This indicates my stroke may have been caused by an embolism so immediately my meds were changed to an anticoagulant, for me Edoxaban. Remember, cryptogenic, paroxysmal and idiopathic all mean effectively no diagnosis of the associated observed condition/event.

The ILR was left in, although it had done it's job, I was prone to unpredictable and infrequent Atrial fibrillation which put me at risk of further strokes.

So when I had my sudden cardiac arrest, initially described as a syncope. Again I had no warning symptoms often associated with syncope. I was running in a parkrun at a moderate and comfortable pace when I just collapsed in an instant. While in ED they were treating me for a fainting/suspect heart attack I said look at my ILR. After two days in ED on a chair I was discharged. I then had a telephone call later telling me to go straight back in and when a bed became available I was to be admitted to the coronary care unit in cardiology. Once there the cardiologist who had fitted the ILR came over to me waving a trace saying ' it was a perfect monomorphic left ventricular tachycardia and I was lucky to be alive!'. I had said to the second when I collapsed as it was on my smart watch and the trace matched the event! It's not often that an LVT can be tied directly to a syncope outside of hospital.

Subsequent investigations as I said dispelled the early assertions that I had the common reasons for heart problems ie valves or blocked vessels and it was hard to explain why I had all of my singular out of the blue events.

They make mistakes dealing with our bodies, to be fair, because we are all different and not stereotypes and typical. When my ICD was implanted they messed up implanting a lead. The device was erratically sensing and setting off as the offending lead floated around. The three weeks I lived with this before they switched it off were hell. I had to have a further procedure which was much riskier but has thankfully worked.

And if course bisoprolol was prescribed because of the VT to try and stop the heart going into the dangerous top end heart rate.

So it is really understandable that you are worried and scared, not least because the treatment outcomes haven't just sorted everything.

The ILR coming out is definitely unhelpful and frustrating as well as obviously strange. I'm acutely aware of my ICD having quite noticeable if rounded off corners which are very close to the skin!

What it suggests to me is that they haven't conclusively pinned down what is going on with your heart electrical signals and until they do your condition will be idiopathic.

Try and follow some of the terms I have used to understand how they link together to cause heart problems and understand the actual risks. By virtue of your medication treatment you are at less risk now than before of a serious event and you are being managed.

This is good even though there have been hiccups because you are unique. 'Could of's' are always very alarming and it's difficult for those around you to get to grips with and understand how to share your fears, often because they have fears of their own. It can all get very lonely.

Let me know how it goes in January and your next cardiology appointment if it helps to share.

It helps me to share my stuff. The number of people with VT problems is relatively small part of the overall heart community. So thank you for reading my essay if you got this far. The info may sit at the back of the mind but pop out sometime in the future if it rings a bell!

Cheers

Nigel

There is a DM feature on the forum. Feel free if that's a better way.

[Staffylover67 in reply to Chinkoflight]

Hope I’m not being a nuisance…

Just wanted to give you a quick update and if you have any thoughts on this…

Ended up in A& E this morning as just after breakfast palpitations kicked in and being erratic

Had the usual checks everything is fine they have increased bisoprol from 1.25 to 2.5mg, got to have an Echo in a couple of weeks.

I’ve looked in my notes this evening.. read the discharge letter which says.. diagnosis conductive disorder of the heart? Just wondered if you’d heard of this?

Many thanks

[Chinkoflight in reply to Staffylover67]

Hi , no problem. So sorry to hear you ended up in A&E but it was definitely the right thing to do. You shouldn't ever think you should perhaps wait and see and suffer with something that feels wrong. I don't feel my heart at all unless my ICD works. It tests it's circuits every now and again, but when it was faulty the palpitations it caused were very unpleasant I'm sort of grateful I don't feel the problems but anxious too because I've had no warning before the 'big events'.The bisoprolol dose increase is still a low dose, I believe the normal maximum is 10mg which is a not unusual dose if there are no side effects or other risks. Other risks might include a low rating heart rate, bradycardia , do you know whether your heart rate is well below 60bpm. I'm watching TV and relaxed and mine will typically be 40 ish. Very low. So they won't up my bisoprolol dose above 1.25mg. I have a pacing function on my ICD and when first implanted it was set at 60bpm, overriding my natural heart rhythm. Along with the defective lead this contributed to the palpitations, my heart was fighting it. So it's now set at a safety level 33bpm to intervene if my HR drops to that level.

I can't say what your diagnosis is. I think they are still not sure, but the problem is real, they are taking it seriously and have indicated that it is the electrical signals and pathways that are causing your problems. But they are not saying yet I presume what is causing you to have these conductive irregular heart rates.

Erratic might mean lots of missed beats, it might mean extra beats, and these may be in the atria or ventricles. Your heart has a main beat generator which then sends signals over and through the heart muscles. These waves hit other beat generating nodes that amplify and relay the rhythm signal to get it to the muscles quickly at the same time to get the uniform pump if blood. In my case I occasionally have atrial fibrillation, the top blood receiving chamber suddenly starts rapid beats for a short blast, maybe 8 seconds or so. But my ECG also shows unusual patterns. This area of learning and understanding is why heart specialists are top minds! I had monomorphic left ventricular tachycardia when I collapsed. For some reason the electrical signals whizzed round my chamber and got back to the relay node before another main beat had arrived. So it sent another beat. This accelerates and the beat keeps spinning round the chamber so it flutters at 200 BPM or so rather than pumps the regular beat triggered from the atrium. They have found a scar on my left chamber and wall thinning of the muscle. This probably interferes with the normal signal, may happen more than I'm aware but for the most part corrects itself before problems are caused.

The scars were only observed on a specialist Cardiac MRI done at Oxford. Routine tests failed to show any heart abnormalities.

I can talk with limited authority on what is wrong with me, and hope in so doing can point you to areas where you might be confident to ask your Doctors to explain more.

A&E skillset is quite limited but they wouldn't discharge you in an unsafe situation. The echocardiogram will look to see if your heart chambers are pumping blood efficiently, they should see if your valves are working okay and raise any concerns if your vessels are clear and working. They will have a simple measure which they may share from the echocardiogram called the ejection fraction EF. Good is a fairly low figure around 50% I believe. If you haven't already had an angiogram I would expect this to follow where they clearly see if the heart blood vessels are not obstructed and whether you need stents to open up small blockages or a bypass operation. However by saying conductive disorder I think they are looking mainly at the electrical pathways. But it's not clear yet whether they have ruled out some structural heart problems like a myocardial infarction, scar as I have.

Blood test results would also be important to check whether you have signs of irregularity in any of the sodium or potassium based nutrients that help the electrical signals to work. There can be many causes and this is very specialized diagnosis I believe.

In the end I wouldn't be surprised if you might be offered either a pacemaker or ICD depending on what risk they might be managing or heart function they wish to support.

Do ask me if anything requires more clarification. I am trying to stay general and use my experience to describe what they are using the tests/investigations to look for. If I were in your shoes next time you might ask the direct question

" Is my ECG showing specific problems and what are they?". And " in this test/procedure what are you looking to find or eliminate as a problem". "Do my blood tests show anything unusual" You might also ask "How serious is this problem and should I be changing my lifestyle in any way". "Should I exercise and exert myself or not, for example stop doing exercise that makes me breathless"

Feel free to keep asking me for any help or support and as I said if you want to use the messaging function on this platform to chat outside of the general posting area that's fine. I do think you seem a bit more focused now and I'm sure as you gain understanding this will help. Hopefully some of the anxiety will reduce on a day to day basis.

I did find it's even more important for me to live my life and to do as much as I can to to enjoy and improve my health or slow it's natural decline. We come to the shortest day in a couple of days which optimistically means summer is on its way! My two sons always take part in a #shortdayout adventure generally on their bikes. I'll be going out for a longer than normal walk tomorrow around the West Wight! I'll be looking for my #chinkoflight. Take care.

[Responsable in reply to Chinkoflight]

So very informative! Thank you so much!

[Chinkoflight]

Hi Kay, how are things going?