Hi!

Hi Back at You!

by Julros - 2022-08-16 22:41:18

Hi Sarah. I am sorry that you are not back to normal activities. You say that your cardiologist said everything looks as it should, but I wonder if your pacer is responding effectively to your activitiy and if your rate is high enough. I had to ask for both of these because it was not offered. One pacer tech thought me asking for a rate increase was amusing, because "no one ever asks for that." 

I finally did a treadmill test with the pacer rep. present to adjust rate and response to optimise my settings, for my age. You young, so there is no need to leave your at the usual 60-130 limits that are the factory preset limits. You could ask your cardiologist for a CAEP test. 

2:1 heart block

by AgentX86 - 2022-08-16 23:19:26

Since this appears to be a rather difficult electrical issue, have the cardiologist be sure there isn't a problem with your plumbing, then call the electrician (electrophysiologist).  EPs are cardiologists who specialize in the heart's elecrical system.

Don't despair

by Good Dog - 2022-08-17 11:06:12

I agree with AgentX86. If your Cardiologist is not an EP, then you need to find one that is. If he is an EP and he continues to insist that your PM settings are optimized, then perhaps a second opinion is in order. If you decide to go that route, I would suggest someone not affiliated with the same hospital network as your current doc. As I am sure you know, Doc's do not like to contradict other doc's. Especially those that they work with.

It is certainly possible that anxiety can cause shortness of breath. It is a symptom that I personally have experienced multiple times in the past. What is difficult about that is when it happened, I had no idea it was anxiety until the symptoms just magically disappeared. It was only in retrospect that I could attribute the problem to stress. I have found that too much caffeine when combined with a lot of stress and not eating well can create all kinds of undesireable symptoms. 

I have to tell you that since you have had COVID in the past, it is possible that could be the culprit. My sister had COVID back at the beginning of the pandemic. Although she had recovered fully, she suddenly developed a persistent problem with shortness of breath at times. She has been to multiple doctors including a pulmonologist and none of them have been able to find anything wrong. Over the course of two years the symptoms have subsided at times, but they still persist. Not knowing what is causing a problem can be maddening. I know it has been for my sister, but you have to continue to try to find the cause until you have exhausted every avenue. She has and still doesn't know the cause of her problems, but I can say that at least she does not worry as much now knowing that she has ruled-out the most serious problems.

So all I know is that you just need to keep at it and it will almost certainly get better!

 Sincerely,

Dave

Welcome Sarah

by FG - 2022-08-17 12:56:12

You have come to the right place. Many many fine people on here. Be sure to check around, spend some time on this website, look at some past messages even if years old, and you will see that you're not alone in any of it. Check back often. 
 

My initial cardiologist was reluctant to schedule me for treadmill or monitoring. By persistence and encouragement from people on this site, I kept at it and now they will do it. You'll end up with the same result. Take an interest in your own care as you do with your patients. It is sometimes difficult for us in the medical field to see ourselves as patients, but we have to - we actually are human too! What would you do for a patient who had what you have? Your very best wouldn't you!

"are you sure its not anxiety?"

by Persephone - 2022-08-17 17:58:59

Don't let your medical team toss this red herring at you, Nurse. You deserve better.

Your new normal

by Good Dog - 2022-08-18 08:34:38

It occurred to me after reading the responses to your post, nobody answered your question directly. The answer is:

NO! This is NOT your new normal! It needs to be fixed!

Keep Looking

by SeenBetterDays - 2022-08-18 09:01:25

Hi Sarah

I'm so sorry you are going through this, especially at such a young age and when you have children who you want to enjoy and care for.  I completely empathise with your situation.  I had a dual chamber pacemaker fitted in February 2021 following the same diagnosis as you which has now progressed to complete AV node block.  Last month I had a His bundle pacing wire inserted as I had not recovered my health and felt unable to function properly (I suspected pacemaker induced cardiomyopathy due to 100% right ventricular pacing).  I have never been able to establish the underlying reason for the heart block, although one of my suspicions is that it may well be connected to Covid as, like you, I was fit and healthy prior to that and used to be able to exercise regularly and live a normal family life.  I think, as far as Covid goes, the medical profession are still learning but there are definite cardiac impacts for some so it's quite possible that this was a contributory factor in your situation.  

Definitely optimise your pacemaker settings, take some time to learn about these and discuss any potential tweaks at your next check up as factory settings are rarely the right ones for you especially as you are young so will potentially need, as an example, a higher upper rate compared to an older pacemaker recipient.

Unfortunately, I have found that there is a myriad of potential underlying reasons for the symptoms which you describe.  In my case, I have researched long Covid, potential undiagnosed auto immune disease and chronic fatigue syndrome (this is often post viral and may closely relate to long Covid).  It's not always easy to get answers and I am still searching and hoping.  You are still early on in this process so absolutely don't accept this as your new normal.  You are too young and have too much life left for that.  The fact that there are so many potential reasons for your symptoms also suggests that there are many possible treatments and strategies which can be tried to improve your health.  I would also say that your body and mind may still be adjusting to the pacemaker and that this process can take some time so give your body all the TLC it needs.

This site has some absolutely amazing contributors who have a wealth of experience and advice so keep talking and learning and above all don't give up.  I am sending you lots of love and hope that you get some answers soon which can help you on the road back to feeling well again.

Take care Sarah.

dont give up

by athena123 - 2022-08-18 17:10:22

make sure your getting enough fluids, especially electrolytes and magnesium taurate. It helps with the palpitations. you could have anxiety because thats how i felt back when i recieved my PM. as time goes on you will be much better. good luck 

Post DDD palpitations with 2:1 AV block

by Rch - 2022-08-18 22:43:36

Hi, if the interrogation did not reveal any arrhythmias or Pacemaker mediated tachycardia, then the palpitations might be an AsVs alternating with AsVp in a 2:1 fashion and the latter is giving you the symptoms! I have the same 2:1 AV block with a DDD and on the Kardia 6L during my exercise I found this pattern. The Kardia 6L doesn't give pacer spikes but you can easily discern sensed vs paced rhythm in lead II. Nonetheless you would need to consult with an EP or with a Boston Scientific or Medtronic representative. On a side note, if you strongly believe the AV block is temporally related the Covid vaccine, there is a good chance that it could resolve in the due course.