Pacemaker literature

Having recently had a pace and ablate procedure I find that I've been hit by a bout of anxiety. Part of this is because I don't fully understand how mine works. All the new language is hard to understand and learn. A CRT-P device seems to be highly complex in its different functions which nobody has explained to me probably because it's too much to explain in a short appointment. The settings such VVI or DDD obviously mean something.

So my question, is does anyone have any or can signpost me to any literature that can give me more information, particularly about settings etc. I know the basics but want to know more. 

TIA


19 Comments

Great Detail

by FG - 2022-08-05 13:28:02

"Thoracic Key" has a wealth of detail regarding all aspects of cardiac pacing. $50 to join. 

One small step at a time

by Gemita - 2022-08-05 14:18:05

Toni, If I'm not mistaken you have a Boston Scientific Guidant CRT pacemaker?  You could try going to their website initially and type in your model details and download the complete manual for your particular pacemaker.  This will give you lots of info about the features your pacemaker has to offer.  

Then when you have read the essential pages (!), you could ask your doctors for a summary copy of your main settings, like mode(s), base rate, upper tracking rate.  You could then look these up, ask your doctors or come here and ask members what your settings might mean for you.  You would then be more in control of what is important to you and what to leave behind until you are better informed.  

Start slowly.  Pacemaker settings are complex and it will take time to understand the main ones.  If you have specific symptoms, it is better for you to discuss these with your doctors and not perhaps to go in and ask about settings on your first visit as I foolishly did.  Your doctors will know from your "symptoms" what settings adjustments might be needed and then you can always ask them to confirm the changes that have been made, so you can keep a record if desired.

VVI mode = ventricular demand pacing 

DDD mode = dual chamber demand pacing

You might like to copy and paste the following links into your browser and learn at your leisure, the first is a You Tube video on modes and essential settings.  Enjoy:-

https://www.youtube.com/watch?v=Y91thWI5qYI

https://derangedphysiology.com/main/required-reading/cardiothoracic-intensive-care/Chapter%209.1.2.7/single-and-dual-chamber-pacing-modes

https://ecgwaves.com/topic/basic-cardiac-pacing-pacemaker-functions-and-settings/

I hope you are doing well following your AV Node ablation Toni?  Any symptoms causing your anxiety?

Settings

by toniorr11 - 2022-08-05 15:41:34

Gemita

You are a wealth of useful information. Absolutely brilliant! And yes, a Boston Scientific Visionist x4

Last week I had some mild symptoms such as feeling my heartbeat in my chest along with a few ectopics and it felt horrible but the clinic and my GP said that it was really early days to be altering settings and no cardiologist would do anything for 2-4 weeks. I understand that. I've got to be realistic and I appreciate that I expect a LOT . However I started to feel pretty normal again. The ectopics decreased and I started to Not feel my heartbeat. I decided to stop wearing my Fitbit during the day because I was checking my rate every few minutes! I've made a concerted effort not to be constantly scanning my chest 🤣 Anyway, I started to feel better. Then we went away to our caravan for a break. On the 1st night just as I was going to sleep I had a really big ectopic which freaked me out and I thought something was going wrong. My heart rate went up to over 100 and only came down to around 80 after 30minutes ish. I couldn't settle so we came home ( wonderful husband!) Got home at 2am. Phoned clinic in the morning and they interrogated my device and found.... nothing! No event had happened and she talked me through what she thought had happened ie an anxiety attack. I hadn't realised that adrenaline still has an effect on my heart rate. Spoke to my GP who has put me on CBT course and meditation for 10minutes daily and go back in a fortnight if no better. 

I guess I'm having a difficult time adjusting to my new normal and things frighten me about it. GP says I'm to work on altering my mindset that this is a gift I've been given rather than an awful thing that I didn't want and hate coping with now. I feel if I understood it more it might help. I don't understand the difference between pacing and sensing for example. But I've a hundred questions! So that's why I wanted a book or something (a book!!! That shows my age lolol everything is digital these days🫣)

So Gemita... many thanks for the resources. Forever grateful. Xxx

Breathe

by Lavender - 2022-08-05 17:19:57

I was thinking of how my parents listened to what their doctor said with no questions. Their generation did as they were told.  My generation became more of self advocates and are accustomed to being informed participants in healthcare decisions.  
Doctors have limited time with each patient. You would need to go to school for many years to learn enough to understand everything. They decide on the best settings for you and because I have no training in this, I have to trust.

I, too, needed to know more than most people. I question and learn. Then I accept. My brain had a very hard time accepting my pacemaker. I did not want this but without it-I die. At first I was very anxious and trying to know more and more. Then I learned to trust that those caring for me had an extensive education in their field. I wasn't their first patient.  I'm not willing to return to college to learn what they know from years of education and experience.  😉
 

I set about teaching myself how to calm myself and get my brain to stop being in fight or flight mode. I had some PTSD from having gone through six months of fainting and no one pinning down the reason. That exacerbated my anxiety thinking no one could help me. 
 

I find listening to headphones with meditation tapes or music to be very healing. One big technique that I use a lot is mindful 4-7-8 breathing. You can do it anytime anywhere. 

Count to four as you take a deep, slow breath through your nose with closed lips-from your belly.

Hold your breath for seven counts.

Breathe out for eight counts through pursed lips.  Try to get all the air out of your lungs by the time you count to eight.

Repeat three to seven times or until you feel calm.

Repeat comforting words to yourself:

I'm safe. I'm healing well. There's no danger. 


Repeat

Repeat


We learn to be scared. We learn to think we are the only ones who can protect ourselves. Life's traumas add layers on until our self defense measures are hyper vigilant.  
 

I'm glad that your wise GP is sending you to CBT-(cognitive behavior therapy) and suggests meditation. Start with that ten minutes and increase it and make it a life long comfort habit. 
 

You can do this. It'll become more normal as you learn to ignore some of the things going on right now with your heart as it heals. 

Pace and ablate and CRT

by AgentX86 - 2022-08-05 18:32:20

Essentially your heart's electrical system has been cut in half so the top half (atria) no longer communicates with the bottom half (ventricles).  Without this connection, the heart would slow way down to a dangerous or  possibly even unsustainable rate.  Enter your pacemaker. It's now timing your ventricles so your heart rate is normal. This is sorta the same thing as a complete heart block, but different. You didn't say exactly why you had this done (it's a very drastic step).

CRT pacemakers are just like any other, except that they control both bottom chambers (left and right ventricles).  This is a more natural pacing method, intended to keep the right and left halves in sync.  It was explained to me as a water balloon squeezed on one side, then the other.  When one side is squoze, the other side bulges out (not good) but if both sides are together, then neither side bulges (good). Everything else is just as it is with a "normal" pacemaker.

You mention 'DDD' and 'VVI'.  Are you paced both ways?  That's a bit unusual.  It would help to know why you needed the pace and ablate procedure.

This three-letter code indicates how the pacemaker works.  The first letter tells us which chamber(s) are being paced.  A=right atrium, V=(right ventricle, or both in the case of CRT), and D=both atrium and ventricles are paced.

The second letter indicates the chambers that are sensed.  That is, where it's looking for a pulse (same letter codes).

The third letter tells us what the pacemaker does with the sensed information.  There is also a third and fourth letter but you don't have that information here.  If the third letter is an 'I', it means that if the pacemaker sees a "natural" pulse, it inhibits the generation of the next pulse (the heart has already done it).  'T' means that when a pulse is found, the pacemaker essentially amplifies this signal by "triggering" immediately.  This is quite rare.  An 'O' means that it's not sensing at all and will just pace at a constant rate.  This, also, is fairly rare but is used during surgery or an MRI to put the pacemaker into a "default" mode so pacing can't be interrupted.

So, your DDD means that both the atria and ventricles are paced and both are sensed.  If the atrium doesn't see a pulse after some time, it supplies one. Likewise, if the ventrical doesn't pace naturally, the pacemaker supplies the pulse to start it.  The third 'D' means that the pacemaker will do any of the functions.

On the other hand, your VVI means that only the venticles are paced, and sensed and the pacemaker doesn't start a pulse if it sees one within some time period.  If it does, it doesn't start another.

DDD is very unusual after an ablate and pace. The usual reason for an ablate and pace is unmanageable Afib, Aflutter, or some other atrial arrhythmia. DDD would still telegraph the arrhythmia to the ventricles. VVI surpresses the atrial arrhythmia because the atria are isolated from the ventricles and the ventricles are paced without interference from the atria.

 

settings

by Rch - 2022-08-05 20:54:29

Teniorr11, wealth of information from the members here!!! 👍👏. Just my 2 cents, Was the intorregation done remotely or in the clinic setting? Remote is read-only. I have had similar episodes like your's within a few days of the implant and interrogation in person, showed PMT and reprogramming solved a lot of subjective feelings like you had. In fact, there were no records of any of my palpitations or tachycardia from the Latitude transmitter! PMT was noted upon stimulation of my HR to over 100 in the clinic ! So, while I don't dismiss anxiety episodes that GPs or Cardiologists talk about, it remains a diagnosis of exclusion. 

What is recorded?

by Gemita - 2022-08-06 01:48:38

Toni, 

Yes I agree, checking your heart rate frequently which will be constantly changing is not always a good thing.  Yes it is perhaps too early to change any settings while your heart adjusts to being paced and recovers from the shock of your AV Node ablation and it will be a shock both for your heart and for you.  

Pity about the caravan break coming to an abrupt end before it got started but I think it is important for your peace of mind at this early stage in your recovery to know what is important in the way of your symptoms.  Next time the same symptoms occur you will be less apprehensive about the outcome.  My clinic always recommended initially that I contacted them whenever I was concerned.  In this way we diagnosed the problem quickly.

The CBT course will be very helpful.  I had this therapy when I was battling serious illness some years ago.  It should be mandatory for all of us with or without illness.

And my take too on “they found nothing” doesn’t mean “it was nothing", that it was all in your head.  We need to remember that our pacemakers are set up to record and store only what our doctors want to see.   There just wouldn’t be space for everything to be stored.  A significant event, say a non sustained or a sustained VT episode would be recorded when it met the threshold for its storage set up by your doctor, i.e. the arrhythmia episode has to be of a certain duration and heart rate to be recorded on your pacemaker’s intracardiac electrogram which can be analysed by your doctors to confirm the arrhythmia present.  This internal pacemaker ECG facilitates analysis of the pacing and sensing status of your pacemaker as well, so it will give lots of good information.

Your pacemaker may therefore be set up to reject any occasional insignificant thumping beats coming from ectopics.  My pacemaker has been set up to reject all ectopic beats for example.  In my case, ectopic beats coming from either the upper or lower chambers are significant triggers for bursts of tachycardia (any heart rate over 100 bpm).   Clearly irregular, sudden arrhythmias like ectopics will make us feel uncomfortable, may even cause breathlessness and anxious feelings.  And let us not forget you will still be having Atrial Fibrillation fibrillating in your upper chambers which you might still slightly feel, even though the signals will be prevented from passing through your AV Node to push your ventricles.  So I think your team can be gently reminded that while nothing significant may have been stored, it was certainly “something” that you felt at the time.

I don’t think you will have to tolerate these symptomatic irregular beats (? perhaps ectopics) in your ventricles forever, only until your heart settles following the AV Node ablation.  AgentX86 who has had an AV Node ablation will know more about this from personal experience.  Sometimes following an AV Node ablation they set the Base Rate slightly higher - say at 80 bpm - to help support the heart in the first few months.  It also serves to outpace PVCs which can be a problem after the ablation, while the heart is healing.  You could ask what your base rate is set at?  I expect it will be higher than usual to keep you safe.

Sensing, our pacemakers keep an eye on us all the time and this is what I call sensing.   When we miss a beat or get into difficulty the pacemaker will step in and help us out. 

Pacing is when our pacemaker senses a problem and then sends out impulses to make the heart beat.

CRT-P

by toniorr11 - 2022-08-06 05:29:38

Thankyou so much for all of your replies.

I feel a bit raw at the moment. Its like my whole existence has changed and I feel a bit adrift with no anchor. I am not used to feeling like this, I have a very challenging job as a healthcare professional , believe it or not, and I am having great difficulty believing any of my colleagues. They do say that healthcare professionals make the worst patients which is true! I really will have to work on being a patient and not being the one in charge. lol

Lavender- thank you so much for your words of wisdom. Of course I must trust my doctors but I don't yet. Trying to get a straight answer is proving difficult ...everyone says ' oh you'll be fine' or some other vague comment starting with 'I think' which is pretty useless lol.However, I do believe that meditation and mindfulness will definitely calm my nervous system down so I'll do everything you and my GP suggests.

AgentX:You have said before that this is a drastic step and I've explained the why's and wherefores of why it was decided to do the AV node ablation. I had poorly controlled paroxysmal AF resulting in 6 A&E admissions over last Xmas. I was on the highest dose of flecainide which stopped working and was put on amiodarone short term. I cannot have a PVI ablation as the risks are deemed too high. Telling me its a drastic measure actually makes me feel worse. Its done now and theres no going back and I think this is part of the problem for me emotionally. I am having a hard time adjusting and I'm sorry to be so tetchy. I hear the acronyms being discussed around me and this alerts me to something that I don't understand.But I was programmed VVI I think prior to the ablation and now am in DDD? Again, its difficult to retain this info when in a 10 minute GP appointment as she was reading out the consultants letter which said he'd really enjoyed performing my av node ablation as we'd had a good chat throughout! I guess I can find out more.

RCH: Yes it was interrogated remotely. They have refused to see me before the 4 weeks has passed after my ablation but I have been told to go back after this time if symptoms haven't resolved. The fluttering in my chest has gone now. But I'm still getting odd ectopics. and i'm sure the anxiety attack was being away from home. Tbh absolutely honest, our caravan sits under power lines and after repeated reassurances from people on here and the consultant and the pacemaker literature I just think I didn't believe them. So the fear set in and resulted in the anxiety attack. I feel stupid. I'm really not like this or I used to be so much more in control. Daft eh!

Gemita: Ectopics are something I've had for at least 10+ years. My paroxysmal AF always started with a few really big ectopics and then jumped into full blown fast AF with heart rates of 130-200. So I think that fear is still there although they said I definitely didn't go into AF on Wednesday. Every time I mention I'm still getting ectopics everyone, absolutely everyone, seems to shrug their shoulders and say something bland. Im sick of it. Nobody has offered a solution and they always say 'oh everyone gets them'. My GP 'thinks' my base rate is 60. I'm so sick of people saying they 'think' something. I want to hear someone say its definitely this or that! You can hear my frustration and I can feel the anxiety rising again! Better go and do some deep breathing and watch some rubbish on the TV! I have just watched that first youtube video re settings. Its true...I'm never going to fully understand it unless I do an electrophysiology internship haha. I never did much physics either so its never going to sink in probably. So blind faith is something I'll have to nurture

Thankyou again for your time everyone. Very very much appreciated. x

Thankyou FG

by toniorr11 - 2022-08-06 06:01:57

FG, Many thanks for your reply. I'll have a think about paying for info.Paying for healthcare info is not something that comes naturally to someone in the UK :) but I appreciate your thoughts x

A bit adrift with no anchor?

by Gemita - 2022-08-06 08:20:05

Toni, You absolutely needed your ablation with uncontrolled AF.  In my experience, an AV Node ablation is not something that is readily done in this country without a need, without the patient being deeply symptomatic and having first tried other treatments, so we can firmly put that thought to bed.

I too have had ectopics for years and they have always led to atrial fibrillation (in the case of PACs) often with a rapid ventricular response rate too and to non sustained VT (in the case of PVCs).  I therefore understand how important it is to get them under firm control and they are certainly not “nothing” as has been so unkindly suggested.  When ectopics are prolonged they cause as much trouble as atrial or ventricular sudden tachycardia episodes.  My pacemaker base rate is set at 70 bpm and has been extremely helpful for me personally in outpacing my ectopics.  My EP always said I had bradycardia induced arrhythmias and he was certainly correct.

A higher Base Rate setting is usually the norm following an AV Node ablation, so that is something you could enquire about on Monday Toni and it might just immediately help with any ventricular ectopics, especially if you find your Base Rate has not been raised and is still at 60 bpm (factory setting)?   Even if you go into AF, this shouldn’t cause symptoms for you anymore because the ventricles are isolated from the atria by way of your AV Node ablation block.  So please no more worries about a fast atrial rate getting through to the ventricles to cause symptoms.  

That video link I posted on Modes and Settings just covered the basics.  Four years ago when I got my pacemaker I couldn't understand any of it but by learning online, reading posts here and talking to my caring team, I can understand bits of it now.  Yes it takes time, but we have to start somewhere.  The more we try to understand, the more we learn, the more we will find our doctors willing to engage with us.  It will certainly empower us to be an equal partner in our long term care.

I would initially ask for a summary sheet of your settings, giving details like implant sites, lead information/settings, battery status, bradycardia/tachycardia parameters, modes, Base Rate, Upper Tracking Rate, AV Delay, whether Rate Adaptive pacing is switched on and settings like this.  They cannot refuse you your pacemaker records but you may have to apply formally on “Form for Subject Access Request under the Data Protection Act 2018 or Access to Health Records Act 1990”.  I applied directly to the Governance Office at my hospital (St. Thomas’ London).  My EP authorised it and I got sent a copy in the post.  They won’t usually give full pacemaker download data to the patient during a pacemaker check, although I see some of our American friends on Pacemaker Club have been more successful getting these.

As always I wish you well xx

Gemita

by toniorr11 - 2022-08-06 08:49:01

♥️

Dismissive

by Lavender - 2022-08-06 09:11:24

It sounds as if you feel that your advisors are being dismissive of your concerns. When this happens to me, it increases my anxiety level. I need someone to stop, sit down and look me in the eye, and start answering my questions and treat me as an intelligent person. If they don't have the answer, then say it. If there's risk to me, let me know that. Honesty and clear answers calm me. 
 

Once I know the situation openly, I am able to deal with it. I do a ton of research until I am satisfied that my issue is being handled in the best way possible. I am not a medical professional but I ask other professionals and research what has been done in cases like mine. 
 

I nearly stopped seeing my cardiologist and was about to choose another. She was always saying to let her worry about it. She told me she was in charge of me. She actually told my guy -in front of me -that if I get anxious to slap me on the shoulder and tell me to cut it out!  She told me that she "was talking me off the ledge " when I asked questions! How insulting! Just because I ask you a question doesn't mean that I am freaked out-it means I need answers in order to process what's happening to my body. I do not blindly trust-it's not my nature.  
 

The pcp was telling me to go on anti anxiety meds and another offered medical marijuana. All because I asked too many questions.  I pointed out to them that I was not over the top- only had called the cardiologist three times in a year-after pacemaker implant to ask about being woozy. I never call the pcps with questions and at my biannual visits, I am only there the alloted time with no extension due to any concerns.  

I actually switched pcps because that guy told me I was "just anxious " after my first fainting spell. He told me to go to bed and all would be well in the morning !  The fainting went on six months culminating in a 33 second ventricular standstill that included my second near death experience.  
 

I was about to switch cardiologists but my new pcp reminded me that my present one is the best around but lacks people skills.

Finally the cardiologist and I had a big confrontation. I felt it time to stop pussy footing around. I told her that I was not being ANXIOUS when I asked questions or sought more knowledge. That is how I process what's happening to me. That is how I calm myself by figuring out as much as I can and then dealing with it. Well, hell yeah!! I'm telling you people that I am fainting for six months, I begged for a long term heart monitor and was told insurance wouldn't pay for it. I offered to pay for it myself. The struggle to be heard was phenomenal!!

 I told her I was not being disrespectful of her, it was FEAR! I was not being informed and was treated like a child -who you expect to have blind trust. How could I trust when the solutions weren't coming and the fainting spells were increasing?? I was the only one left fighting for myself. I'm a grown woman and believe me, if you tell my guy to slap me on the shoulder to snap me out of "anxiety", I see you as someone who is dismissive of me and treating me as weak! Not to mention that my guy didn't think that funny at all and knows what a strong person I am-he wouldn't be with me if he was the type to treat me that way!!
 

Surprisingly...the cardiologist listened and apologized. She actually got up and came over and hugged me.  Hopefully she learned something that'll help her patients. It actually takes a shorter time to honestly and directly answer a question than to avoid one.  
 

In any case, I know why I grew to be this way. It comes from a long history of scary uncontrollable events in life. It taught me to be my own guard. It taught me that people must earn my trust.  It taught me to not let others tell me that I am silly or just leave it up to them. 
 

Being on guard for oneself can come from PTSD-knowing something scary happened and now we try to prevent that from ever happening again. I'm sensitive to my environment and self protective partly due to a past that included scary situations where doctors couldn't help, and I was not protected properly from other nonmedical traumas.  

In time, I learned to anticipate danger. I trusted few and reassured myself by educating myself and learning to calm myself. 
 

You sound like you're on high alert. This is a learned response. You may have a history of scary situations wherein you didn't feel protected early on. Perhaps someone you loved died because medical intervention wasn't adequate or their condition was beyond medical care. Maybe a parent let you down or was dismissive of your concerns. Only you know. 
 

What we do know is that you're smart enough to learn how to calm yourself as you seek answers. Right now your brain is on high alert as it senses danger. Not being heard increases anxiety.  Mindfulness exercises can retrain your brain. It will come to a place of acceptance. 
 

I totally understand you not trusting your colleagues at this point. You need hard answers and time. Meanwhile training your mind to not be on hyper alert is a good start. 
 

Rethinking decisions that are done deals isn't helpful. Your ablation is over. Your pacemaker is implanted. Onward you go!

it will pass like the wind

by athena123 - 2022-08-06 13:57:04

Hi, you just experienced what alot of us on this forum have been through in the past. Know that it is only temporary and in trime you will not even know you have one. We all experienced anxiety at one point or another and some of us still do. anxiety will give you that fight and flight symptom because of the adrenaline your body produces. take a moment and breath and try to re wire your way of thinking. Find any information you can on your device by asking tons of questions when your device gets interragated. The more you know the better your mind will be at ease. Know you will be fine and this will pass. good luck

What an incredible thread this is

by FG - 2022-08-06 17:17:52

What an incredible series of outstanding replies of deep insights and excellent information, both technical and emotional. Personally I am a very technically minded person and get a great deal out of Thoracic Key. I played with it for some time before I paid, just to be sure it was worth it. It certainly is for me. It's like a research project you have to spend time with it and get to know it and then you see all these incredible explanations many of them by high ranking cardiologists that go into all kind of details in the reasons for pacing and it's methods. There are superb diagrams of the electrical system of the heart all very well explained. I don't have mine in yet, scheduled for September, but I'm  gonna be forewarned and forearmed!

AV ablation

by AgentX86 - 2022-08-06 19:29:23

Toni, sorry I'd forgotten that we had the discussion about your AV ablation already.  The reason I'm so insistent that it be the absolute last choice, because it simply is.  It's almost(?) always done for QOL reasons (I couldn't function with flutter).  Rarely (if ever) for purely medical reasons.  AF may not be controlled but its serious side effects can be usually fairly easily.  I know many who have been in Afib for decades with no intervention except anticoagulation and rate control (usually beta blockers). For others, AF can be quite debilitating but that goes back to the QOL point. That's where I was with flutter. My flutter was very slow (80bpm) so not dangerous in any way.  The problem was that it was irregular and I couldn't sleep for days at a time, untill I just passed out. I was useless at work.

Some professionals think it's medically necesary and should never be done. The belief is that the some of the best EPs in the country can ablate anything. Others believe some ablations (LAA isolation, mainly) shouldn't be done. I'm not in the "never AV ablation" camp, obviously, but it is that important. Again, I'd forgotted we'd been through this.

I still don't understand DDD unless your Afib is so sporatic that it only requires blocking very intermittently and AF can easily be detected and a mode switch to VVI works. VVI is almost always used after AV ablations because the whole point is to decouple the atria from the ventricles.  It's not impossible to the mode switching but it's not normal. I'm not saying that it shouldn't be done, rather I want to understand.

You're right to kick and scream to get the healthcare you need.  My wife has done that for me (good cop, bad cop).  She's been known to rip staff a new one, within earshot of other patients.  It's almost always been admin staff screwing up but she's not afraid to take anyone on and they know it. My EP laughed his ass off when she got people moving when they forgot to reserve a cath lab when I had an ablation scheduled ("Who are you?"). Someone was about to die that day.

Overwhelmed in a good way

by toniorr11 - 2022-08-07 04:33:36

Thankyou all once again for your time and replies. 

Lavender: I have an uncanny knack of thinking of what I should've said to the doctor about 30minutes after I've left the clinic! Even if I take a written list of questions theres always more lol.And you're right to say I'm on high alert. I guess it'll reduce with time and information and getting used to it all. It could be worse. I am just not used to being like this and I hate it. I've no energy at all. Quite depressed obviously but its situational and hopefully I'll bounce up this week. I need to get out of my head, if you know what I mean.

Athena123: I'm hopeful that time is the great healer but I'm not there yet and I'm a person who wants things done yesterday! xx

FG: I've found the website. I'll investigate today :) Thanks

AgentX: Its ok you don't remember me :) Theres hundreds of folk on here after all. My QOL was really poor last Xmas with so many episodes of fast AF. The triggers were very difficult to pinpoint but I sort of worked out that it happened mainly when I turned over in bed. The cardiologist who did my ablation said this was quite common as your heart flip flops around in your chest, gets a bit squished which leads to atrial stretch and sets off the electrical storm. Your pulmonary veins entering the atrium don't like being upset apparently! Anyway thats all behind me now. It was all agreed that I really had no other option for a QOL.It IS nice to be able to turn over in bed now with no fear LOL However, I underestimated the mental adjustment of the whole thing and this is the new bit to process. 

I think you're right about the DDD setting. I only went into AF sporadically. I had zero episodes from 2016 and taking flecainide 300mg daily until December 2021. Then 6 episodes in 8 weeks. They tried adding in  verapamil but that had no effect at all. I don't have high blood pressure. Can't take beta blockers because I have asthma. So I hit the brick wall medically speaking.

Re: DDD-I think someone told me that if I go into AF now, it'd switch but I will check. 

Its definitely becoming obvious to me that they don;t tell you much about settings because you don;t really need to know. They react to symptoms and perhaps Id be better thinking about those at the moment. I'm getting sporadic ectopics....quite hard ones which freak me out. I will tell them this if they continue because they won't talk to me until the 4 weeks is up. I hope they disappear. I have no idea if they are PAC's or PVC's. Can you tell?

 

I would suggest PVCs

by Gemita - 2022-08-07 06:13:36

Toni,

How “symptom alike” we are or have been.  The turning over in bed being a trigger for me too.  I have always suggested here that a “positional change” could just change the outcome of an arrhythmia, as indeed we are discovering with vagal manoeuvres for certain arrhythmias like SVT.  One of the reasons why I haven’t had an ablation is that I do not trust my heart to behave itself afterwards (being so “vagally” influenced) even if I had an ablation done by the best EP in London. 

Yes your EP was spot on about describing the heart flopping around in the chest, leading to atrial stretch and setting off an electrical storm.  I can feel that very pressure before the AF kicks in.  I can often stop it quickly by changing position but hardly the way to live.  I was on Flecainide until it became pro arrhythmic.

Have they checked your electrolytes and are you well hydrated.  If you haven’t already I would get the GP to look for other causes for ectopics (get a general blood check done too).  I wouldn’t just put it down to stress/anxiety, and your mindfulness and CBT will address the latter in any event.  I believe your mental adjustment difficulties is because you are still having symptoms.  Without symptoms you wouldn’t be here asking questions.  Arrhythmias whether benign or malignant will cause anxious symptoms.  When my heart doesn’t feel steady during an arrhythmia it is because it isn’t steady and blood flow to many of my organs is sub optimal causing brain fog, chest discomfort, weakness.  It feels as though the body is trying to shut down.  Anxious feelings naturally follow.

Yes it will be helpful to know what mode you are in since I note you are not  in permanent AF.  I rely on mode switching when I am in AF at high heart rates when my pacemaker switches to a non tracking atrial mode and then returns to my atrial pacing mode on cessation of AF.  It is a great function.  Of course your atrial tachy arrhythmias have been permanently prevented from passing through your AV Node because of the ablation, so the usual treatment might be a single lead to the right ventricle (or in your case CRT pacing).  Dual chamber mode pacing is I believe far superior to a single chamber ventricular pacing system in terms of quality of life.   I know you have a CRT pacemaker (two leads to your lower chambers) but do you by chance still also have a lead to your right atrium Toni?  VVI pacing alone can be associated with the development of permanent AF or worsening AF as well as other known problems.  So the mode you are in will be important going forward.

PACs or PVCs.  Can we tell the difference.  I am usually more symptomatic with ventricular ectopics, with heavier thumping beats, but both atrial and ventricular ectopics can be debilitating and cause weakness and other symptoms.  The only way for sure to determine the arrhythmia present is a surface 12 lead in hospital ECG (if you are having ectopics at the time of the procedure) and to have the ECG interpreted by a cardiologist or doctor trained in reading paced ECGs.  In the past I had an ECG interpreted  as “abnormal ECG” and the finding of “frequent, premature ventricular contractions”, only later to be read by my EP and confirmed as “frequent premature atrial contractions with aberrant conduction (right bundle branch block pattern)”, so a world of difference.  In your case however Toni, I would suggest since your atria are isolated from your ventricles, anything that is occurring in the atria (like continuing AF or PACs) should cause fewer symptoms now following your AV Node ablation.  My feeling is that, in the absence of any other undiagnosed cause or other arrhythmia present, PVCs are the likely problem which hopefully will naturally settle

Pacing Modes

by FG - 2022-08-07 10:12:07

https://thoracickey.com/cardiac-pacing-modes-and-terminology/

Please permit me to see if I begin to understand more of this. Like so many have said I was given almost no explanation just told "you need a PM". The EP walked out the door and with his back to me said "you need a PM and no other surgeries until you do...".

Toni it sounds like DDD would be best if your atria could re-establish NSR (normal sinus rhythm) because the PM would replace the function of your native P-R interval (which is referred to as the AV delay for a PM) since your own AV connection that used to do this has been ablated. The condition of completely independent atrial and ventricular beating is called AV dissociation, and DDD will trigger a properly timed normal ventricular beat when it senses a normal atrial beat at a normal rate and prevent an excessive ventricular rate if you should get too high an intrinsic atrial rate or go back to Afib. If Afib does come back a DDD pacer would only trigger your ventricles at a safe preset rate. So you would certainly be safe but might have palpitations. If permanent AFib is a foregone conclusion it looks like VVI single lead might be all you need but just go with dual chamber because of its greater flexibility. I will get 2 leads, one in the right atrium and the other in the right ventricle they did tell me that. I have made 2 more appointments in the next 2 weeks before my surgery date to hopefully get more explanation and I'll let you guys know what happens.  FG

Me again!

by toniorr11 - 2022-08-07 17:08:26

Gemita: you're right about the anxiety coming from the symptoms ie tight chest fluttering in chest and ectopics. Once my 4weeks is up I'll be banging on the cardiologist door asking for a consultation! It's difficult to know if the adrenaline is causing it or the other way around,if you know what I mean. I really don't know what to think and I'm a bit concerned that they will fob me off but I usually find persistence is key. 

I do have 3leads. Both ventricles and right atrium. I'll find out my settings this week. 

Re PAC or PVC. I'm getting really hard thumps so most likely PVCs.I think anxiety has been my enemy for a long long time. I really need to start tackling it without chocolate and wine 🤣 neither of which really help. Lol. 

FG:: thanks for the link. I've had a quick look today and it's quite intense but interesting. You're so lucky to be able to get more appointments up front. Trying to actually speak to my cardiologist is nigh on impossible and I've never seen the same one twice...ever. I saw 2 junior ones at Xmas then my cardiologist once then a registrar did my Pacemaker assisted by one other consultant and Another consultant did the ablation. I'm not sure what I think about this. It sounds wrong but I just accepted it. They're all a really strong team apparently based in Edinburgh. 

FG good luck and let us know how you get on.

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