Good news --well, sorta. At least there is movement.

At my insistence I was seen at Duke today. Happily I saw an NP who listened, and was willing to explain things. According to her,  I emphatically do not have PMT. They seem to believe PMT is "impossible" as my pacemaker is programmed now. 

What I do have, maybe, is Pacemaker Syndrome. It seems my heart just doesn't like to be paced in the ventricle. The NP deliberately paced the ventricle to see if I would react. My involuntary AIIIIIIE! conviced her that I did. 

If I do have Pacemaker Syndrome it would explain all the symptoms I'm having. Apparently my symptoms are classic Pacemaker Syndrome.

There's a story about how I got this far. It's something newbies might need to hear about the importance of learning all you can about your pacemaker and being ready to advocate for yourself. Too tired to write it tonight. Maybe tomorrow.

Thanks everyone. This group has a made "a difference that makes a difference" for me..


10 Comments

HIS Bundle Pacing

by Swangirl - 2020-01-09 23:02:48

I'm sorry Gotrhythm about this diagnosis.  Is your ventricle lead in the HIS bundle?  This is the best practice now for ventricle leads to forestall or prevent pacemaker syndrome.  Was one of your symptoms a lowering of your ejection fraction?    

I want to hear the story

by Joe Newbie - 2020-01-10 01:29:29

Hi,

Someone here figured out what I had done. I still don't know the terms like you. So they did something to the top part of my heart so the bottom part won't listen to the top. Then put a lead in each ventricle, so I am 100% device-dependent now if the PM stops I stop.  I pace at 80 at the lowest all night then higher as I do things during the day.

Soooooooo I DON'T WANT pacemaker syndrome. SO share the story share the good news.......

glad there is a probable explanation

by Gemita - 2020-01-10 05:04:28

Dear Gotrhythm,

i too look forward to hearing the full story when you are ready. Getting an all too elusive diagnosis is so important, isnt it. It is the searching, the not knowing which is so difficult to cope with.  With a diagnosis we can make plans for the future and decide on the most appropriate treatment, confident that any decision we make will be the best one for us. I know from a previous post of yours, you had decided not to replace your pacemaker when it runs out of power, so I am sure you have so much to consider now. We all hope to help you on your journey

movement is good

by Tracey_E - 2020-01-10 09:34:52

Glad you are getting some answers! Now, for some relief. 

When you're ready...

by crustyg - 2020-01-10 10:01:30

Wow!  What a journey!  I had a conversation with the BostonSci rep during one of my PM tuneups about Pacemaker Syndrome, which I've managed to avoid by insisting on a change from DDDR (with RythmIQ - their software designed to minimise vent-pacing) to AAIR.  And, no, I *don't* have a His-bundle RV lead (didn't know enough to insist at the time).

Glad that there is an explanation for the problems that you've encountered, and looking forward to hearing more about it.

What a cliff-hanger!

Swangirl

by Gotrhythm - 2020-01-12 20:46:55

One possible option is His bundle pacing, but it's too soon to say. Haven't a firm diagnosis of Pacemaker Syndrome, yet.

crustyg

by Gotrhythm - 2020-01-12 21:06:38

I was paced AAIR for a couple of years. It worked quite well until I developed Type 1 heart block. Since I was symtomatic (syncope) it was clear that the ventricle had to be paced.

My current EP did some fancy programming--right this minute I can't think of the mode--but again I was symptom free and felt well for over a year. In fact I felt the best I've felt in years.

Unfortunately, interrogation shows I'm being paced in the ventricle more and more since August of 2019. Why, we don't know, but my guess is that the heart block has gotten worse. As I have been paced more in the ventricle my symptoms have become more frequent and more severe.

CRT was discussed as a possible treatment, but I"m not sure being paced in two ventricles is the answer for a heart that won't tolerate being paced in one. [Charlie Brown frown] I"d probably have more faith in His bundle pacing.

Everything is up in the air right now.

 

Mode?

by AgentX86 - 2020-01-12 21:32:13

Gotrhythm: I'd think you'd be paced DDDR, with a heart block and you were paced AAIR before

Gotrhythm

by Pacedmyruns - 2020-01-14 02:40:37

You sound like what I I just went through. My intermittent block was more frequent but my settings were loose to allow my own heart to work. In turn, I paced late and felt pacing all the time. Awful. Just changed my AV delay to kick in sooner and problem fixed! I feel like a new person. I was ready to the thing off it was so bad. 7 mos! 

Gotrhythm

by Gemita - 2020-01-14 07:32:57

I know we are getting ahead of ourselves in the absence of a firm diagnosis but after reading your further comments:  Ref your statement . . . "but I'm not sure being paced in two ventricles is the answer for a heart that won't tolerate being paced in one" . . .  I would like to suggest that it would be more synchronised and natural to pace in both ventricles simultaneously and therefore might help you to feel better ?  Also with regard to HIS bundle pacing, if you have problems with your bundle branches, I am not sure that this would be a solution since the electrical signals might have problems getting through??  Maybe you could start a check list to ask your EP when the time comes for a decision

You know you're wired when...

The dog’s invisible fence prevents you from leaving the backyard.

Member Quotes

I have a well tuned pacer. I hardly know I have it. I am 76 year old, hike and camp alone in the desert. I have more energy than I have had in a long time. The only problem is my wife wants to have a knob installed so she can turn the pacer down.