34 with AV Block

A/V Block at 34

by TAC - 2022-01-22 13:06:19

Wow! At 34 you should not be worrying about your heart. However, anything is possible under the sun. At your age, unless you inhereted some bad genes, you should have a healthy heart. Anyway, the evidence shows that you have some problems in the electric system of your heart. Are you hypertensive? Are you diabetic? You have no choice but to wait until you have the complete work up. I agree with your ED that a PM should be only used only if it's the end of the rope. I sympatize with your case and hope that you problem could be helped with medicines. Try not to get too worried. Anxiety and apprehension overstimulate the autonomic nervous system and the heart. Keep us informed.

At 34

by AgentX86 - 2022-01-22 15:22:12

It really doesn't matter how old you are.  If you need a PM, you need a PM.  There is no "too young".  There are many people who have been told that for years.  When they finally got their PM, their whole life opened up. They had no idea how poorly they felt, for years.

You didn't mention how long these pauses were but I assume they were just a couple (less than five) seconds. One second is just one beat at 60pbm, so not a pause.  Three seconds doesn't get anyone's attention.  More than five is PM territory. I had a six second pause and my EP's hair was on fire. I had a PM the next Monday (it was a Friday).

Near-syncope is nothing to ignore.  Please don't drive.  The life you save may be your son's, or someone else's daughter.

Positive attitude:  It's the only attitude that makes sense. You know you need help and are getting it.  Dwelling on the negative outcomes doesn't help and actually is damaging. No, you shouldn't get a PM unless they're sure you need one but they also need to be cautious in case you really do.  If you need one, there is no stigma and any change to your life will be miniscule (are you a professinal football player?). Just do it.  You'll fell better.

I had a near-syncope episode and was hospitalized for a few days.  They had no idea why, so sent me home with a heart monitor.  This particular style connected to the cell network and was much like a monitored home alarm system.  I was to wear this for a month to see what was going on.  A few days later, I got a call at 3:00AM telling me to get to an ER.  Hint: call an ambulance.  I didn't get the hint so drove into the city and camped out in my EP's office.  I had a 9:00AM appointment anyway. That was the Friday. After I got my PM that Monday, by the time I got to the recovery room I felt almost high.  I hadn't realized how much I really needed the PM.

Just look forward down the road.  You can't control where you've been, only where you're going.  You're going to see your sons grow up, get married, and give you grandchildren.  Focus on that.

At 34

by TRobinson87 - 2022-01-22 15:58:43

Thanks AgentX86. So in the two weeks I was on the holter they caught 4 pauses. Three were deemed heart block stage 2 and one was full on stage 3 total block due to the length and was 4+ seconds. I had 5 P waves with no lower chamber response. They are of course concerned about the stage 2 blocks they saw on the holter to. Those were around 3-4 seconds but the full on stage 3 block is the one they are the most concerned about. I am definitely not driving right now. My EP wanted me to try this levsin medicine to see if potentially my gut issues are overstimulating my vagus nerve. He said he has seen many times patients have overactive/overstimulated vagus nerve due to some other issue that would cause heart block episodes. They are definitely not taking it lightly. I have never fully passed out from any episodes that I can remember but have been seriosuly close several times and now that my wife and I think about it we can think about episodes occurring off and on as long as about 2 years now. The constant PACs are what made me go to the cardiologist because they were happening so frequently. My cardiologist said he would treat the PACs usually with a beta blocker but with the 4 episodes of heart block they caught on the holter he said absolutely not. 
 

agreed it is all on attitude. My mom and sister are both nurses and have said the same thing that a PM doesn't mean shortened or alter my life and may actually get rid of some of the other random just not feeling right that I've been having for the past year or two. My EP is just trying to be sure it's not something else causing it before we go to a PM as he said having heart block at my age with no underlying causes or health issues is head scratching. No diabetes, no hypertension, I work out a few times a week, drink lots of water, have healthy diet. I appreciate your words I really do. I am definitely trying to focus on the path forward not behind and also not be worried about the diagnosis as like you said it is totally treatable with a PM if they can't find any other cause of the heart block. It's just crazy that the constant PACs that I have been feeling are what led to discovering this. No not a football player or any high contact sports haha. The only high contact thing I have is my 4 year old son who wrestles me haha. 

Similar situation, maybe (?)

by ElizabethCA - 2022-01-23 00:00:03

Hi TRobinson and everyone else -- I have been reading the informative posts on here since last April when I was told I needed a pacemaker. I still do not have it and wanted to share the twists and turns here in case any are relevant to you.

The backstory is that I am older than you, 49, but still "young" in pacemaker terms. I have always exercised a lot and am in very good physical condition. Once, about 10 years ago, I was driving with my husband and young kids in the car, and we were eating lunch on the trip. I took a bite of a sandwich and then got tunnel vision, like the curtains were closing, but then it passed. But it freaked me out -- I had been going 70 mph on the highway! So I went to an EP shortly thereafter and did all a Holter, exercise stress test, echocardiogram, blood tests, etc. They just found level 1 heart block and a minor number of PACs/PVCs. They cleared me to drive. Periodically over the years, I would go back for more testing, usually prompted by my noticing palpitations, and nothing major came up in any tests.

Fast forward to last year - I was driving while eating a Starbucks breakfast sandwich, and the same thing happened. At least I was only on a surface street this time. The episode passed before I blacked out, but I went straight back to the EP. This time, I wore a Zio (so much better than the Holter!) for 2 weeks with the monitoring service included. I got multiple calls from Zio noting pauses of 3+ seconds and asking what I had been doing, and eventually something in my results triggered a call to my EP, who told me to stop driving immediately. 

To make a long story slightly less long, after a bunch of tests, they feel confident I have vagally mediated paroxysmal AV block - my heart is normal, but my vagus nerve goes haywire, especially if eating something large and dry (like a sandwich). But pauses happen more often than that. The longest pauses noted on the monitor were 3-5 seconds. I didn't notice any of them - like I could sometimes feel an esophageal spasm, but I didn't feel as though I were about to pass out. This suggests the driving episodes that sent me to the EP because of the near-fainting were longer, like 8-9 seconds. Per the EP, I am not fainting because I am "young" and in good shape, but this will become more of a problem as I age - he said 3 seconds can definitely make an older person faint.

So the pacemaker path seemed clear. But then I had to wait for a couple of months while my insurer and the hospital system renegotiated their contract after letting it expire. During that time, my EP's practice performed a newer procedure that has been used in Europe for 10+ years called cardioneuroablation where they target nerve endings associated with this vagus activity in the heart. My second opinion from UCSF also recommended that I would be a good candidate for this. The procedure is starting to be done here in the US and was featured on the Today Show a couple of weeks ago.

I am not really an early adopter by nature, so I am basically waiting for more data and studies. I can live without driving for now because my husband drives the kids around and I can do most of what I need to do on foot, bike, or public transit here in San Francisco. The EP assured me that this was not the kind of thing where I would drop dead, so the practice essentially said that if I am able to deal with being banned from driving for now, I should wait because more data is being collected all the time on this and this is a very hot topic at most EP conferences. They think it will be a standard treatment in 2-3 years. I also don't eat food without a drink nearby anymore. 

So that is super long-winded, and I don't know if this is relevant for your condition or if you are near a center where you'd feel good about their abilities to be on the leading edge (whereas pacemakers are tried and true at this point!), but I mention it in case you want to ask your doctor. The doctor in Europe who developed this technique has the last name of Aksu, so FYI on that if you want to Google the research. I really don't know if I will end up doing the ablation or the pacemaker, but one of them will need to happen for me to get cleared to drive again.

Good luck and please keep us posted!

At 33. Originally diagnosed with AV Block

by JayKay - 2022-01-23 01:58:10

Hey there! I joined the club at 33yrs old a little over a year ago. Always been in great shape. Originally told I had type 2 heart block, then vasovagal syncope. Also had IBS as a kid, and my super healthy dad died suddenly at 40 (v-fib at rest). 

Then I had a number of episodes of polymorphic ventricular tachycardia while sleeping, and had and ICD implanted. I was subsequently diagnosed with Idiopathic VF after lots of testing.

Anyway, I mostly just wanted to say AgentX86 is spot on about maintaining a positive outlook. I’d also add that keeping track of your symptoms and advocating for yourself is key. Sometimes it's tough to figure out if symptoms are related to medication, hormones, nervous system, or some other underlying issue.

Sending support and best wishes!

I have intermittent swallow syncope

by Gemita - 2022-01-23 02:34:41

Elizabeth/TRobinson, thank you both for sharing your experience and for the details Elizabeth on cardio-neuro ablation.  I too have complex vasovagal causes for my electrical disturbances and have been diagnosed with intermittent swallow syncope due oesophageal dysmotility.  It took years to catch the problem as it was actually happening, years of frustration, worry and not being believed.  Suffice to say that a pacemaker cannot unfortunately help with all vasovagal conditions which may be triggered by so many different mechanisms which is why my doctors held back for so long.  It will be a combination of treatments, including a pacemaker that is more likely to succeed.  

I was referred to a neuro-gastroenterologist with specialist knowledge in treating vagally mediated conditions affecting the oesophagus.   She was very interested when I told her that swallowing solids/liquids seemed to be the trigger for my arrhythmias and lead to syncope.   She recommended a range of treatments, including meds to help with reflux (PPIs - proton pump inhibitors) and occasional oesophageal dilatation to help solids pass into my stomach.  She also said I needed to see a cardiologist for the arrhythmias.  I did eventually go down the pacemaker route and my quality of life is so much better.

I still get occasional pre syncope with my pacemaker due to sudden swallowing difficulties which trigger my arrhythmias, particularly AF with a rapid ventricular response rate.  I surrendered my driving licence a few years ago because of this, but I would say on the whole my condition is now better controlled.  Hope you both come to the right decision.

TRobinson, just one request please.  When you post again, could you perhaps kindly break your message up into manageable paragraphs?  I found your original message difficult to process at times and others have too, because of the long "block" nature of your presentation.  I have noticed that trolls sometimes post here with a similar presentation and I would not wish to wrongly place your all important message into the same category

Great thread

by Elisabet - 2022-01-25 20:15:02

Such a fascinating thread. 

When I first got the pacemaker, it was described as a "seatbelt" to keep things going when I had those intermittent pauses. It turned out though that within a month I was pacing 98% of the time although that wasn't noted until the six months later at my next interrogation. Bottom line: I'm glad it was there. 

I was able to confirm with a timestamped picture on my phone that I'd been on the erg at the gym during the 4-5 second pause the doctor showed me from the Holter report. Yes, there were jokes about performing self-CPR. I'd taken a picture of the workout stats on the machine because it was such a pathetically bad session that I'd had to stop early. 

The esophogeal dysmotility angle is really fascinating. I have that too - basically uncoordinated esophageal muscles due to the chest radiation I'd had for cancer a few decades ago. Gravity and big gulps of water are my friend when it comes to getting food down, because my muscles just do their own thing instead of pushing food down. I've never noticed any association with my own heart. Really hoping the new ablation approach can help you, and if not, a pacemaker is generally not hard to live with.

makes you normal

by dwelch - 2022-02-01 15:57:19

first off ignore all the fantasy you see about pacemakers in tv and movies.  It is not a disability it does not shorten your life, it in fact extends your life, it can, with a block certainly, make you normal.  

I have CCHB, complete congenital heart block....meaning complete and from birth.  Found in my pre-teens, first pacer at 19.  And from the activities I was into, I should have died before then.  It is hard to find now but pre-pacer stats for CCHB patients had a life expectancy into the teens, adulthood was not necessarily a thing to expect.  

I have had pacers for 34 years now, on device number five.  the device makes me normal, I dont have to worry about driving or going down stairs or carrying my daughter when she was a baby, etc.  I can live a long happy life now.

I would have been dead a long time ago and not have had a daughter, etc.

Point there is that IF you have a block, get the device, you are in no way shape or form young for a device, they are putting devices in kids single digit ages, we have some here at this site from time to time.  And/or their parents.   Some of us were diagnosed and monitored, others managed to make it into their 20s and had one of those normal day then just woke up in the ER with a pacer days.  

If you need the device you need the device, get it as soon as you can, do not wait.

The key in your case is do you need the device.  It sounds like you should not drive, not go up and down stairs, not ..... Until you figure it out.

Honestly this is the first I have heard of these gastro issues, and ii an interesting topic and even with that I wonder if a device is still the right path.  If you are senstive to this and it is perhaps mechanical and not something you can take a pill for or get a surgery for, then it sounds to me like it could still happen on any particular day.  

Nothing really negative about pacemakers, give you one less thing to worry about in your life.  Heart is take care of...check.

I am 54 now, wont go into details but doc made a comment about "saving the other side", 34 years on the left side, push comes to shove (one of my leads is 34 years old and another 27) we could move to the other side and get another few decads of devices..

There was a person here last year that started a decade or more before I did, he had one of those hockey puck sized devices, mine were two to three times the size of todays, but compared to those early ones, still wee tiny.