Complication w/3rd Implant

I received my 3rd implant on 5/8/12. (My first pacer was installed in 1998.) All was textbook until 5/10 when I began having double beats - my heart was beating in doubles: 1,2....1,2....1,2.... and then would fall back into sinus rythmn.

I went in for pacer check on 5/11. Checked pacer, not leads; was told pacer was working as it should and the double beats probably was from the pacer beating over my natural heart beat (per pacer tech). Still not feeling right.

On 5/18 blacked out twice, rather quickly for short periods of time. On 5/19 went to ER when I blacked out again. Pacer tech said I had a bad lead. He reprogrammed pacer to run on one lead, thereby have the pacer use itself to complete the circuit in lieu of the second lead. Set pacer at highest voltage output and 60 for the bottom parameter and 110 for the top. I know not what the top 110 means. I was told the pacer had a life of 2 - 3 years not 10 - 12 now.

On 5/22 did followup with my EP. He indicated the side effects of inserting a new lead far outweigh the benefits at this stage. Said my pacer was working fine and all would be okay. I am to see him in a month. When I explained I had blacked out, he had a hard time believing that as I'm 10% paced - I have heart block. I told him my 10% must come all at once every few hours. LOL

On 5/26 & 27 had a couple of episodes where I felt "weird" and my vision began to have a fuzzy white margin around it. At one point in time I truly became panicked and believed my heart stopped. I think I might just not have been feeling in the right place for my heartbeat. I was exhausted those two days.

I have not had any of those episodes but am still having lightheaded feelings when I reach the top of the staircase or bend over. When I slightly exert myself or move quickly, I feel pressure on my esphogas/throat area. When in the car and I ride over the smallest bumps, it feels as though my heart is bouncing/vibrating. I cannot adequately describe it.

I want to go back to the tech and have some settings redone, but I do not know what to tell him to work on.

I am also in the market for a new EP for a variety of reasons.

Have any of you had any of these feelings?

I'm delighted I found this site. I guess before now, I didn't need it, but really feel I do now.



18 Comments

Sounds like you have the right idea

by ElectricFrank - 2012-05-31 02:05:00

The setting you mention is likely what is known as unipolar pacing and the current path is like you described.

This setting is only meant to act as a backup for short times if a lead fails. I'm wondering if your bad lead isn't actually a detached lead. In this case as it moves around in the heart it effect changes. Simply going to unipolar and turning up the voltage isn't a satisfactory approach.

I suspect the EP is more motivated by not wanting to deal with the real issue. In some cases an insurance company this a "warranty" case, and expects the surgeon to repair the problem at little or no extra cost. This results in the surgeon taking the easy way out and using settings to get past the warranty period.

It would seem from your comments that it may be better to change EP's as you mention before trying to get the problem resolved.

By the way you are "right on" when you mention the effects of having all the necessary pacing coming close together. Even for someone who only paces 1% that pacing is very important when it is needed. Look at it this way. There are 1440 minutes in a day. I my heart stopped for 1% of that time it would be 40 minutes. If that all happen in one episode I would be quite dead!

frank

Thanks Frank

by Mary1998 - 2012-05-31 02:05:01

Yes, unipolar is correct. The surgeon believes the insulation for the one wire was damaged on the installation of the pacer. He sited needing to go on cumadin if I had a new lead placed in the same vein and also my arms would forever be swollen. He explained the insulation gets fragile after years (14 in my case) and it rarely happens, but I'm one of the lucky ones.

BTW when I was in the ER, they did Xrays to verify the leads were attached. They appeared to be.

The tech in the ER and the EP seemed to think I could use unipolar for a couple of years. The ER doc thought I should have new leads put in - but he's not an EP.

I've been thinking about my other symptoms - the pressure in the upper chest, throat area. I think I'm having quite a bit of irregular heartbeat. Does anyone know if that's a symptom of it? When I take my pulse during that time it's definitely not what my sinus rhythm used to be.

I just know I don't feel right; and I just don't know how to approach the next doctor's visit.

It used to be when the new pacer was installed, I would feel it. They set this one exactly like my old one was set - that was before we were aware of the issue with the leads.

Can someone explain what the 110 upper setting means?

Thanks.

To Don R

by Mary1998 - 2012-05-31 07:05:02

Thanks for bringing bigeminy up. I will look into it. My passing out, I believe, was related to my PC not working as one of the leads was bad. Since they reprogrammed the PC to run unipolarily, I've not blacked out nor have I felt bigeminy.

My irregular HB is becoming more frequent. It's really irregular. I don't feel the same as I have when I have had an episode of Afib. It seems as though all I have to do is move and my heart goes crazy. I am drop-dead exhausted.

I have decided to call one of the EPs @ UCLA, as that is probably the closest for me.

About Santa Claus, EB and Tooth Fairy - come on now, don't kill all my dreams. ;)

I feel fortunate to have been paced for 14 years without these side effects - but now I want them diagnosed and fixed!

With Afib, I've felt flutters. I really dont' have many flutters but do have an interior pression in my upper chest, specifically around the esophogus and up into my throat.

Thanks for taking your time to give me further info.

Bah! Humbug!

by donr - 2012-05-31 09:05:27

I hope you were wearing high rubber boots when you were talking to the Pacer Tech & your EP! You were, IMNSHO, wading through the biggest pile of fresh horse manure known to mankind.

The description you gave of 1,2...1,2...1,2... sounds exactly like a rhythm known as "Bigeminy." (BTW - Bigeminy does essentially mean "Double Beats.") It's not uncommon by any stretch & will make you feel totally crappy when it goes on for any length of time. It is a normal beat, followed by a PVC (Premature Ventricular Contraction). It really decreases your oxygen flow to the entire body & will (Ask me how I know) make you feel verrrrrrryyyyyy dddddrrroooowwwwsssseeeeyy if it goes on long enough. Like you want to fall asleep & pitch face down into a plate of Pasta in a Chili's Restaurant.

I suppose that it could make you black out if you have other problems. Go to Google & ask "What is Bigeminy" The Wikipedia description is the clearest I read this AM.

Did the PM Tech mention that word? How 'bout the ER Doc? Did any of the peculiar pattern show up on the monitor while you were in the ER? Did they even hook you up to a monitor?

Pseudo-Dr. Frank is pretty much right on in his discussion of your case. You need a new PM Tech AND a new EP.

Though you were joking about the PM running its 10% all at once, that is not an outlandish situation! You can have "Runs" of irregular heart beats at any time. Then you can go days w/o anything weird happening. All these irregularities are NOT randomly distributed! A heart rate is a fiction! (There is no Santa Claus, Easter Bunny or Tooth Fairy.) Each & every beat is an individual event created by a "Count down" timer in the SA Node. The node just happens to be pretty reliable & accurate in its counting, & we recognize a whole bunch of beats in a row as a HR. Supposing that something happens to the SA node's ability to count accurately for a short while - your HR will go bananas. Suppose that the something happens to the delay mechanism between the SA & AV nodes for a short while - you can then get PVC's or stretched out delays before the Ventricle contract. The AV Node can go rogue for a short while & become dominant & you get weird junctional rhythms. All sorts of weird things can occur to make your heart run "Funny" for a short period, or a long one, then go back to normal. What Frank said about your heart going banana for that 10% all at once is what kills young, apparently healthy, athletes on the basketball court or football field.

You got spammed, punk'd or whatever by the system.

I only fell off the turnip truck a short while ago, but I still think you have been given a run around & need a good second opinion of your case.

Read what Frank said about the Kaufmann trial a few posts down from here. And we TRUST those weenies?

Like Pres Reagan said "Trust, but verify!"

Don

Wow! Pseudo-Doc Frank just noticed something

by ElectricFrank - 2012-06-01 02:06:56

That 110 bpm upper setting you mention may be a major part of the problem. This is likely what is called the Upper Tracking Limit which is the maximum HR the pacer will pass on to the ventricles. If you are at all active or anxious your HR is likely to try to exceed that setting. The way the pacer enforces the limit is to cause your heart to start skipping beats. The 1-2 skip 1-2 thing is exactly what the limit will cause as your HR just reaches the limit. If you push more it will enter a 1 skip 1 skip1 mode. What we don't know is what your previous pacer was set to (even though they say it was the same). I had this same problem on my original implant. the limit was set to 120 and even a fast walk against a head wind would start my heart missing like an old car engine.

Do you have a copy of any of your check up reports from before and after the replacement? I have a standing order with the cardiologist that all reports either in the office or Carelink are to be supplied to me. It helps in understanding what is happening and also keeps them honest. I requested and confirmed twice that my replacement pacer was to be programmed exactly the same as the previous one. Only after I looked them over did I discover several changes. You mention UCLA so you must be in Calif. In this state there is no question about getting any of your medical records. I have the complete OR report and notes from my implant.

Best wishes with getting a new EP, and don't let don drive your HR to the limit with the Santa Claus, EB and Tooth Fairy.

frank

Got an Event Monitor

by Mary1998 - 2012-06-01 05:06:00

Passed out prior to getting up this AM. Texted my EP and asked for event monitor. I now have one. I also was able to book an appt. with another EP, but that is a the first part of July and am waiting for a call to "fit me in sooner."

This last fainting episode scared me. However, I'm not having arrythmia very much today - guess my body senses I am going to "capture" those episodes. LOL

@P-D Frank - Thank you, as I was wondering what that upper figure of 110 really meant. I felt it might be part of my issue, but I really don't understand it.

You would think since I've been paced for 14 years I would know more about it. However, being paced has been a non-event after the first week or so of my new pacer installations. Not so this time. Before I really didn't feel I needed to fill my head with specifics, as all worked fine.

I appreciate the feedback I'm getting here - thanks so much.

My only quandry is whether to fill the monitor up with arrythmia episodes or save some for if/when I black out again. Hmmmm Dr's. office (didn't see him) really didn't have a concrete opinion.

Event monitor

by ElectricFrank - 2012-06-02 01:06:50

Do you press a button or such to indicate an arrythmia episode or does it handle that itself. If you black out you aren't likely to press a button. I'm really taken back that the EP isn't any more concerned about your passing out than he is. That's serious business even if the heart event itself isn't life threatening. Falling and hitting your head or burning yourself on a stove can be serious events in themselves.

By the way I can understand your pacer being a non event over the years. When all is going well it isn't much of an attention grabber. The only thing that makes me aware of mine is being on this forum nightly. That doesn't bother me..it just reminds me I have one, and when I am making comments I try to put myself in the persons experience.

Good luck on getting another EP. With your current problem coming on right after a new pacer, I can't help but think it is related.

frank

Event Monitor Con't.

by Mary1998 - 2012-06-02 02:06:16

Yes, I do press a button - it will "capture" 15 seconds before and 45 seconds after the button depression. I can capture up to 15 episodes, which is a lot more than I could 14 years ago. I've tried to capture 4 - 5 events so far, but I see only 2 are recorded. Strange.

I believe it's the holter monitor that capture continuously for 24 hours.

You know, I'm not sure my EP really believes my blacking out. Strange, though, as I certainly do - so does hubby, as he's seen at least one of them. Those were before I had the pacer reprogrammed in the ER. After this morning, I truly don't get it, as I thought the reprogram of the pacer took care of the problem of the pacer not working correctly. Now I'm a bit concerned the second and final wire might be compromised. :(

I agree; I believe the majority of my issues probably is related to the pacer. I just wish I knew how. Of course,

Thanks for your supportive comments. I think forums are such a wonderful invention. One can read and pick up so much info.

I'm still welcoming any ideas...


Event Monitor Con't. Correction

by Mary1998 - 2012-06-02 04:06:48

I just read the info on the monitor - captures 45 seconds before button depression and 15 seconds after.

RR - HAve you considered that?

by donr - 2012-06-03 01:06:56

Mary - you are authorized to feel crappy & contradictory at this point.

Have you read any of Franks discussions about the Rate Response function? If your RR function is turned on & you have a low upper limit, that could very easily run your HR above the 110 & then all the bad things that Frank mentions take place!

Here's a quick test Frank proposes for folks w/ RR problems. Reach over & thunk your PM w/ your thumb, lightly at first, then slightly harder. If it is too sensitive & is the cause of your problems, it should cause you to feel like you do when you feel bad.

Your description of what triggers feeling like something you step in out in the back yard after your dog has been out sounds just like an RR problem.

I cannot recall you mentioning them mucking around w/ your RR settings. Maybe they did & did not tell you!

If it turns out to be a RR problem, credit Frank for finding it, not me!

Don

Contradictory - @ Don

by Mary1998 - 2012-06-03 01:06:59

There is a reason I'm contradictory - that's my true state right now. (sorry) I had the "bigeminy" heartbeat for the first week or so. Those beats were very strong. I don't remember if it went until I was in ER and had my pacer reprogrammed or whether it changed before then. I now have arrythmia and a heavy feeling in my chest and head and am so tired my eyes could cross. It seems each day I feel worse.

I stayed home from work on Friday; got an event monitor. I also passed out Friday, which I thought would be behind me since they reprogrammed the device. I'm due to travel to VA on the 13th and don't think I can make it.

I am prone to sinus allergy and am wondering if I could also have that as I'm drop dead tired. I'm not rested when I wake up at all. I'm going to take a sudafed to see if that relieves it at all.

I have captured a number of rapid heartbeat events that result in a pressure on my esphogas/throat area. If I walk slowly, I don't seem to have them. Riding in a car, carrying something, going upstairs, moving fast all trigger the rapid heartbeat. Also when riding in the car and going over normal road my heart tends to jiggle????

I attempted a 15-minute drive yesterday and had to stop in the middle of it, as I didn't feel well. I won't be doing that again.

I'm wondering if the 110 upper setting would truly have an effect on a person who is 10% paced? Does the pacer kick in to kill higher natural heart rate beats? I can't seem to find that answer anywhere. I've spent a lot of time on the Internet trying to figure this out. So many of the leads just peter out - don't give the info I think they will.

I'm scared, tired and frustrated.

Thanks to you and Frank for continuing to shed light on my crazy situation.

I truly appreciate your support.

RR - GEEZ-trying to understand it

by Mary1998 - 2012-06-03 02:06:33

GEEZ tell me again why I go to a specialist?

I just got off the phone with a Biotronik rep. I found a 24/7 800 number and called it.

What I wanted to find out was what the 110 number meant for a person who wasn't 100% dependent. She said the pacer would do nothing if my normal Atrial HB went above 110. It would not try to reduce it, it wouldn't pace the ventrical. She did indicate that the response mode was on and that I might be sensitive to that. I'm trying to remember whether or not I had that turned off on my St. Jude model. I think I did. One would think when I asked for this one to be set up like the last one, it would be. Of course, with the damaged lead I suppose all bets are off. Then again, since the ER tech had to reset it to unipolar when he didn't have all my info might be why he turned it on, if in fact it was him who did it. GEEZ

I'm signing off to find Frank's RR discussion. I just boxed my PM and didn't feel anything.....GEEZ

Thanks!

Read Frank's RR info

by Mary1998 - 2012-06-03 02:06:34

Thanks Don and Frank. I'm going to march myself back to the (un)tech and request my upper limit be raised and my lower limit reset to 55 not 50. My old pacer was at 60. I'm going to find out what the old pacer's upper limit was. My RR will be turned off.

Once again - GEEZ!

Thanks!!!

Doesn't NECESSARILY mean...

by donr - 2012-06-03 02:06:46

...that you do not have a problem w/ an RR. Maybe you didn't thunk it hard enough or in the right direction.

Try jumping up & down in one spot & see what happens - or perhaps running in place for a few seconds. There may be a long delay before it kicks in - that parameter is adjustable.

You mentioned having a problem when going up stairs - how far up do you get before the crappy feeling kicks in? If it kicks in on about the second step, it's a short delay. If you get nearly to the top, it's a long one.

Anyway - it's something you need to pursue - and - it's most likely something to do w/ this new PM! (See Don's Razor below.)

Apply two maxims of solving problems:

1) Occams's Razor - nothing to do w/ shaving legs - it states that when solving a problem, examine the easiest , simplest solutions first they are probably the best solution.

2) Don's Razor - When you have a problem & you have just recently fixed something, revisit the item you fixed. It's most likely the source of the new problems.

Don

Stairs, razors etc.

by Mary1998 - 2012-06-03 04:06:45

My weirdness starts at the top of the stairs. I've not had this before. (Though some would claim otherwise.) I do agree it's the PM. Eventhough I requested the same settings with this new one as the last one, I don't know if the different units operate the same, especially now that this one is set unipolar. Does that somehow change how the other settings need to be? GEEZ

Not sure I like your razor, Don. I want to "fix and forget." LOL

I'm going to study what RR might mean for me. Why do I have to study and take my ideas into the "experts"?

Thanks!

Bigeminy again...

by donr - 2012-06-03 06:06:43

Mary: Have you learned anything about Bigeminy & if they decided you had it?

You wrote kinda contradictory when you mentioned it in a much earlier comment.

Don

Running in place

by Mary1998 - 2012-06-03 06:06:54

Think my rate of response must be less than 5 seconds.

As far as "experts" go - I just believe that someone (dr. or trained tech) who deals with a subject each and every day for years should have knowledge much broader than mine. That's all.

Why do you keep coming to the experts?

by donr - 2012-06-03 06:06:57

Did you try hopping up & down or running in place?

Because, as I've stated elsewhere - none of us know everything, but each of us knows something. And when that something, regardless of how small, is thrown to the group it can be added to and eventually develop into a correct, total answer. With humans & their ability to think, analyze & stretch their ideas, the whole can be vastly greater than the sum of the parts.

And - if that bunch of humans is this bunch, it's like throwing a huge hunk of raw, bloody red meat into a cage full of hungry tigers. What they do to & with it may not be pretty, but it is surely interesting!

Don

You know you're wired when...

You have a high-tech ticker.

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