I am lost, please help

Are you lost?

by Gemita - 2023-08-27 07:25:32

Hello Dimabai, I hope I can clarify things for you.  

I see you felt no better in NSR (normal sinus rhythm), so that seems to suggest that your Atrial Fibrillation is not the only problem you have.  I see that you also have PVCs (premature ventricular contractions) and believe me PVCs can certainly cause some difficult symptoms when they are active, especially if they are frequent and prolonged.  Perhaps you are like so many of us, very sensitive to any heart rhythm disturbances?

You have a choice.  You do not have to accept an ablation for Atrial Fibrillation if you have any doubts that it may not relieve your symptoms. There is no need to rush into any procedure.

I am slighly unclear about your history.  Do you actually have a pacemaker, since your Bio has not been completed and you say that your cardiologist has run an array of tests and suggests you are healthy?  Certainly some of us can see heart rates in the 30 to 50 bpm at night and this can be perfectly normal.  I had this for years too prior to my pacemaker.  It was only after I started getting low heart rates, pausing, and syncope during the day that I was offered a pacemaker.  

I see you have Mobitz type 1 heart block?  Depending on the degree of your block, it may or may not need treating with a pacemaker.  I would get your electrolytes checked and ask whether any heart rate control medication for your Atrial Fibrillation is possibly causing your block symptoms? 

It sounds as though another medical opinion might help you to decide the best way forward?  The fact that you can have one good day of aerobic exercise and then be bedridden the next day suggests to me that you need to learn to pace yourself more effectively, not to do too much one day and be confined to bed the next day.  We all do it sometimes, me included.  Exercise consistently, gently, building up slowly is my best advice when you are dealing with arrhythmias.  Arrhythmias like Atrial Fibrillation or even irregular heart rhythms like ectopic beats (PACs - premature atrial contractions or PVCs - premature ventricular contractions) can really mess with cardiac output.  I am not surprised that you are suffering.  I hope this starts to answer some of your questions.

Thank you!

by dimabai - 2023-08-27 08:20:18

Angry Sparrow, Gemita, Thank you for your support and feedback! I don't currently have a PM. This option was offered, when i was in the hospital with Covid where they found my night heart rates dropping to 30s. They also identified a Complete Heart Block, the diagnosis that my Cardiologist disagreed with. He went through all my hospital ECGs and did another Holter after the hospital. Said that Complete Heart Block was transient and caused by Beta blocker that i took one time before the hospital to slow down my heart rate when it skyrocketed. On after hospital Holter my heart Did Pause for 4 seconds several times at night. His diagnosis - Mobitz 2:1 (Wenkerbach, benign). I didn't have a syncope, nor did i have a fainting spell yet. PVCs i am getting only during excercise, not when i am at rest. This has been confirmed during a Stress Test - I had my heart rate up to 160 on the treadmill, my Cardiologist points at this fact as confirmation that i don't have bradycardia. He said that people with Bradycardia can't get their hearts revved up to these numbers during excercise. Re pacing myself, this is another story. I am a competitive athlete and i don't know how to pace myself - i feel good, i go. Ex: i did 20km brisk walk + 50 flights of stairs + tennis practice = the type of excercise that is normal to me, i didn't feel tired, i felt great. That night my heart rate stayed at 30 and i was in bed all next day, i didn't recover at all. I used to repeat this type of excercise on a daily basis With Joy. Gemita: i don't take heart rate control meds. I only take BP med (Telmisartan) and blood thinner (Edoxaban). These meds don't normally cause excessive tiredness. Does that mean that in order to be consistently active i need a PM? 

Sounds like borderline

by piglet22 - 2023-08-27 09:17:25

As you were offered a pacemaker, it could be you are having symptoms that meet the criteria.

Another consultant might give you a definite yes, another says wait.

Heart block tends to be progressive, but not in every case.

Make sure they keep a close eye on you and do your own checks. Simple wrist pulse checks can tell you a lot and maybe invest in a blood pressure monitor that does arrhythmia as well.

No, you may not need a pacemaker, but only time will tell

by Gemita - 2023-08-27 09:29:39

Dimabai. I am not sure what this means for you personally, only that you need a good cardiologist/electrophysiologist to keep a close eye on your heart, to monitor it for long periods.  They can then determine whether you would benefit from a pacemaker or other treatments, like an ablation/medication for your intermittent heart rhythm changes.  Usually when we start having electrical disturbances, they tend to progress unless we make lifestyle changes.  It may be that eventually you will progress and need a pacemaker, but as you will read in these pages, a pacemaker certainly doesn’t stop our energetic members participating in their various sporting activities.

The problem with a fast arrhythmia is that we may ultimately require rate control medication and or an ablation to control it.  With either treatment, there is always a risk that we may make our electrical disturbances worse (more volatile) and then need a pacemaker in any event.  A pacemaker will not however stop a fast heart rate or be able to control any blood pressure falls or increases.  You must realise this.  A pacemaker can only treat heart block; bradycardia/sinus node dysfunction - also Chronotropic Incompetence;  pausing and may help with some forms of syncope.

Personally my heart rhythm disturbances have been immensely helped by my pacemaker keeping my heart rate steady and higher at 70 bpm 24/7 and there is no doubt in my mind that I made the right decision to have one implanted, but we are all individual which is why you need to work with a doctor you can trust and have confidence in as you move forward

Will PM help in my case?

by dimabai - 2023-08-27 09:58:47

""The problem with a fast arrhythmia is that we may ultimately require rate control medication and or an ablation to control it.  With either treatment, there is always a risk that we may make our electrical disturbances worse (more volatile) and then need a pacemaker in any event to protect us from worsening electrical disturbances"

This part bothers me a lot. That Ablation can make the problem worse. I had one serious case of Afib with heart rate 220, but other than that, heart rate is normal, night time slow. I am not taking rate control meds. I am not sure what makes me so tired, Cardiologist is also saying that by looking at my ECG, he doesn't see what it might be. I will meet with EP only on the day of ablation - that way process works in Canada. I am not taking beta blockers as they will make my night time heart rate drop to the floor and exacerbate heart block. I tried to change my BP meds from Amlodipine to Telmisartan to see if that might help. So far no changes. Experiences with either or both of them? Will pacemaker give me more energy? I read that it will not. Only will control the pauses, that's all.

dimabai

by Gemita - 2023-08-27 11:11:15

I am assuming you are in Atrial Fibrillation quite frequently.  It can occur at a slow, normal or fast heart rate and at any of these speeds, it can cause extreme tiredness because of the “irregularity” of rhythm and the tiredness may linger for hours well after the Atrial Fibrillation stops. 

A good cardiologist/electrophysiologist will usually recommend an ablation if your symptoms warrant it.  They should always consider symptoms as an indication for intervention.  If you are having symptoms - e.g. have tiredness, breathlessness, chest pain, faintness and symptoms like these and particularly if they can be confirmed as having been caused by an arrhythmia (from monitoring), then regardless of time spent in an arrhythmia like Atrial Fibrillation, they should offer you better treatment.  Some doctors prefer to try conservative treatments first using both rate control meds (like Amlodipine which is a calcium channel blocker or Metoprolol which is a beta blocker) and anti arrhythmic meds before proceeding to an ablation.  Some centres though offer an ablation as a first line treatment because it is more effective than medication alone.

My personal advice is that you should ring your hospital consultant and ask whether you could see someone urgently to discuss all of this because clearly you are not sure what you are facing.   The potential risks and benefits of an ablation and of all your other options, including a pacemaker, need to be discussed and fully understood so that you can be in a position to give “informed” consent to any procedure.

If you can stop an arrhythmia like Atrial Fibrillation you will improve cardiac output, have more energy, sleep better, have less brain fog because there is no doubt an arrhythmia can adversely affect blood flow causing weakness, shortness of breath, tiredness.  Lack of oxygen due to an irregular heart beat can damage our organs over time.  However you tell me that even with normal sinus rhythm you were tired all the time, so perhaps you need a general doctor’s opinion also and to have some blood checks to look for other causes first?

Heart rate control and rythm control

by dimabai - 2023-08-27 11:44:31

Gemita, thank you a lot! You probably meant Amiodarone, not Amlodipine for heart rate control. I tried rate control meds - Amiodarone and beta blockers. Both drop my heart rate that is already in bradycardia level and make me even more tired. After cardioversion, i was in NSR for three months. 3 days ECG during that time showed 97% in NSR, Mobitz 2:1, PVC, palpitations. So, both heart rate and rythm control was achieved. I wish their would be a way, other than a permanent PM implantation, to test my theory that bradicardia at night brings about tiredness... :( Thank you a bunch, i do have a high degree of anxiety over all of this, which i understand doesn't help a bit... 

You could ask for a Sleep Study to see what is happening to your breathing and heart rate at night?

by Gemita - 2023-08-27 12:20:56

Dimabai, No, I was talking about Amlodipine which is used as a rate control medication as well as for blood pressure.  Amiodarone is an anti arrhythmic medication, one of the best out there and usually very effective which is why it is often used as a last resort med when all else fails.  It comes with some rather nasty side effects, so a patient needs frequent monitoring while on it, but Amiodarone can work when many other rate control meds, like Amlodipine, Diltiazem (calcium channel blockers) or Bisoprolol, Metroprolol (beta blockers) fail.  Rate control meds are safer than anti arrhythmic meds.  If rate control meds don't work, we are tried on anti arrhythmics like Sotalol or Flecainide first, before progressing to Amiodarone or to an ablation.  

You see with a pacemaker you would be able to try rate control or anti arrhythmic meds fairly safely, having the back up of a pacemaker should either of those meds cause a significant heart rate drop while treating any arrhythmia

A sleep study would help to see what is happening at night, how well you sleep, whether your low resting heart rates are allowing you to fall into a deep sleep or triggering wakefulness and frequent sleep interruptions.  A sleep study would measure so much more than just your heart rate.  It really is all about monitoring, getting that evidence to support your need for treatment.  No one wants to intervene without an indication, so I can understand your concerns.  

Don't forget your PVCs.  They can cause tiredness too.  Please speak to your doctors and consider all your options.  You clearly have known heart block and arrhythmias and many of us would move to a pacemaker or to more effective medication and/or an ablation.  Be guided by your doctors since sometimes with electrical disturbances it can be trial and error before we hit upon the best medication or a "complete" treatment plan to suit.  Electrical disturbances can be tamed but they are certainly not quick fixes, so we need to be patient.  We are always here if you need help.  I send my best wishes for a successful outcome

A few more questions please...

by dimabai - 2023-08-27 16:31:04

Thank you, Gemita! I am overwhelmed by all this, I am only at the beginning of my journey - was diagnosed in January, during shoulder nerve ablation - i also have a lot of grieve, pain and anxiety from my busted shoulder, all ligaments torn. This had Huge impact on my quality of life, and apperantly stress from it, triggered heart issues. They were preparing me for shoulder proceedure, and my BP was 240/130. They immediately canceled the proceedure, send me to ER, where they diagnosed me with Afib. Apparently I had it much much longer. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3576947/

If i understood correctly, among CCB only Diltiazem and Verapamil are used for rate control. Maybe i am wrong...

"Other calcium channel blockers (amlodipine, nifedipine, and felodipine) are not appropriate, as this is not their main mechanism of action"

So, i am trying Telmisartan 40mg, this is ARB blocker, started last week. My BP now is rather high 140/90. I had a feeling that Amlodipine interrupts with my sleep. So, decided to try ARB instead. 

What meds are you on? Did Ablation help? Your PM seems to be set on a very high heart rate 70bpm, does it not interfere with your sleep? What do you do for an excercise? Do you travel with your condition? Thank you so much!

A few more answers

by Gemita - 2023-08-27 17:11:59

I have now answered your private message with answers to your above message.  Hope it helps?  I see you have asked a few more questions:-

I find 70 bpm perfect for me.  It helps me to stay asleep and to keep my PVCs away as my heart rate naturally slows at night and that is when the PVCs would strike.  Without PVCs and PACs I can keep other arrhythmias away, so 70 bpm works very well for me.  Many members find by raising their minimum rate setting, this can help with ectopic beats like PVCs.  

I do a lot of walking and can run if I have to and can still dance.  I also garden and that is heavy work.  Today I was up the ladder again using the loppers and what little muscle strength I still have left (while my husband did the washing up since he prefers housework).  

Although I haven't done much long distance air travel recently, I travel all over the UK when I have to, by train, boat, air.   My pacemaker doesn't hold me back in any way.  In fact it keeps me energised and protected.