many questions ??

I have posted before, But I swear I'm at my wits end with this PM business. I had the Medtronic revo surescan PM implanted for 3rd degree heart block on 2/5/22013. I went 4 months and 20 days with my pacemaker set wrong and severe shortness of breath, thousands of dollars later being billed to Medicare, so so many tests,4 hospitalizations, 2 heart cauterizations, and a pulmonary specialist all to no avail, Not my lungs, no blockages NOTHING! It was the settings all along!
I was going to be discharged from the hospital, and the doctor orders the Medtronic pacer tech to change the upper limit from 120 to 140, and I go home that night and realize I can breathe again normally, when I question the doc, and pacing tech about this and said what made you think to change the upper rate, he said because we tried everything else! I said why wouldn't you have tried that first! He admitted to being wrong for not doing that 1st, but said, it didn't look like you were needing it raised because your heart rate wasn't getting up past 120! That's because I couldn't get enough air to do anything to raise it for god sakes!
To make a longer story shorter...I was still experiencing some SOB, and every week, they just couldn't get the settings right, I'd leave the office pretty good, and then a few hours or days later, either SOB or a god awful ache in both arms and across my chest and back area with any brisk walking. When they changed the settings the ache went completely away! Again some SOB. They finally decided to put me on a treadmill, and I couldn't do it, I had really bad SOB at the time and they told me now I have upper atrial tachy that my HR was at 170 sitting? He said I need meds and maybe heart ablation surgery! This arrhythmia Dr he sends me to and that I have met twice now for a whopping total of 45 minutes in all, prescribes meds flecainide , which seems to be working, changes some settings and sends me home, for the first 5 days I felt fantastic , the 6th day I start to get this SEVERE ACHE in my entire right arm again with ANY KiND of exertion at all, at a stand still, or sitting, NOTHING!
Only when I try to hurry a little. No SOB though! Thank God!

I went to the store yesterday and pushing the empty shopping cart was excruciating to my arm, I had to leave the store and go home. I thought I was going to faint with the ache so bad
I go to this doctor again, the nurses and tech runs a EKG and Pacing graph readout and the doctor comes in and says your EKG and PM settings are PERFECT! I said no they are not, my arm is hurting like it did once before when the settings were wrong, he then says to me, you'll have to live with it, because I wouldn't know what to change, even if I were to try! He says some people have depression and that might trigger your symptoms! I said I'm only depressed because you can't get the settings right! I never have, and don't have any anxiety what so ever with my PM, never have! I just looked at it as back-up!
He said your a enigma to me, would you like a referral to see another Dr for a second opinion? If not I'll see you in 3 months! I swear I just want to cry, I'm so over this all! What should I do now? How is it I meet PM people that say,I've never felt better in my life, I got a new lease on life!
And by the way, I was running 5 miles a day-5 days a week, when I collapsed with the heart block originally. I'm in great shape physically otherwise!

If anyone can answer some questions I have, I would be ever so grateful!
1.Has anyone experienced the ache I'm talking about?
2. Can your PM settings change on their own after a few days, or is it my heart?
3.Is there a way to see from the EKG paper results and the PM readout to show perfect settings?
4. Now that I'm on the meds, does that fix my atrial tachy, or just suppress it? Does my heart work as hard, or is it just masking it??
5. Can ablation work if your not actually have the abnormal arrhythmia at the time, or can they trigger it with meds?
6. He says my heart has changed and now I have upper and lower electrical problems, and I would need the ablation, because my PM is confused and can't do the top and bottom???
He says I'm 100% paced now, and when I was in his office, he says I'll show you that you need this and he turned off the pacemaker, and I almost fainted, and then he turned it right back on.
I'm sick with worry over all of this. please... any input will help!

7 Comments

Many answers??

by Selwyn - 2013-08-19 05:08:32

.Please see my response to pain in the arms earlier today for a club member. The cause may be of a serious nature.
2.PM settings are set- they do not change over time unless someone or something changes them. If the power supply runs low, there is a safe mode that the PM goes into as part of its design to keep functioning.
3. Settings are individually based, though in general the initial settings are according to the standard for that PM and are then changed according to your needs. You should be able to obtain a paper print out of your settings- this has a large amount of technical information. If you need help with this, I would recommend you speak to your technician or doctor, or use this club site.
4. Medication for the control of atrial tachycardias are of 2 types- control of rate, and control of rhythm. Which approach is needed depends on the individual, age, activity, side effects of drugs etc. Personally, I take medication for both rate and rhythm. It is always best, if possible, to have normal sinus atrial rhythm for heart function.
5. The purpose of ablation is to stop the arrhythmia from happening ( or if your are talking about a AV node ablation to disconnect the upper chamber electrics from the lower chamber sensing). You can have an ablation procedure even though your heart at that time is functioning normally ( I had an ablation for atrial flutter- such a condition, comes and goes and is called paroxysmal, as in paroxysmal atrial fibrillation. Although ablation is not without complications, failure rates, and relapse rates, sometimes it may offer a permanent 'cure' of atrial tachycardias.
6.A lot depends on the type of pacemaker that has been fitted in the first place- some monitor the upper and lower heart chambers, others not. The dual monitoring PMs will switch off the atrial sensing when the atrial activity is excessive ( on the print out ASM ) and use the lower chamber ( ventricle) sensing to pace you.
If you do not have a dual pacing/sensing PM then you may well be compromised with an atrial tachycardia, though drug therapy ( if effective) may well be the simplest answer as all ablations carry risks - you can search the club site for these if your dare to!

I hope this helps a little, I am sorry to hear you seem to have had a particularly rough deal. Things can only get better!

and ...................

by IAN MC - 2013-08-19 06:08:26

Selwyn gave you a superb set of answers to your questions and I. too, hope that things get better. Hearts do change on their own, but it is highly unlikely that your PM settings would.

To add to question 4 . If you take drugs for tachycardia they do actually slow down the heart i.e. it works less hard This happens by a variety of mechanisms depending on the drug

So they reduce your spells of rapid heart beat and don't just "mask them" .Drugs don't "cure' the condition in that if you stop the drug, the tachycardia would come back but it they work it feels like a "cure" . Hope this is helpful

Ian

many questions

by katbell - 2013-08-19 07:08:42

I made a appointment with a new doctor for Friday, I'm so ready to feel better again.I decided I'm not going back to someone who is not willing to help me.

Settings

by jenny97 - 2013-08-19 09:08:46

First, let me second what the others said. Pain in the arm can indicate a more serious problem and should be evaluated (although it sounds like you've had many evaluations). A second opinion is not a bad idea since your current docs don't seem to be able to figure things out.

Settings can make a huge difference and your body's reaction to them can change over time, which is why they sometimes have to be tweaked from time to time. To minimize or at least identify the ramifications of such changes, I ask for a print out of all my settings at every PM interrogation. If I go home afterwards and feel poorly immediately or start to feel poorly within a few days, I compare the PM settings listed to the previous printout to figure out what's changed (since they don't always tell me). There have been times when this practice has resulted in improvements to how I felt because I was able to specify which particular setting seemed to be making the difference.

It's a fine line though, because I don't understand everything about the PM and how it works on my condition and in my body, so I really do have to rely on my dr and my tech. Having a dr who I trust and who trusts me makes a huge difference. When we're working together as a team, then my health improves.

Regarding medications, sometimes they have unexpected side effects or sometimes expected side effects come on so gradually that you may not realize that the problem you are experiencing is actually a side effect of the medication. When you're adjusting PM settings and changing medications at the same time, it's very difficult to determine what is causing what, so it's a good practice (if possible) to make only one change at a time. Sometimes, of course, this is not feasible. But when it is, it can really help you again isolate what is helping and what is not helping. I always get annoyed when drs want to start me on multiple medications at once; how can you tell if they are working?

I should mention that I received a PM for 2nd degree heart block with intermittent 3rd degree heart block and vasovagal syncope, so the situation is quite a bit different from yours. Nonetheless, I hope the information might be helpful. I do have postural orthostatic tachycardia too, so they wanted me on beta blockers to keep the high heart rates down and the PM made it possible to attempt that as well. But ultimately my BP was too low on the beta blockers and it was causing more problems than the tachycardia so I no longer take them and just try to manage my conditions with the PM, exercise, diet, and a bit of common sense (when it's available :) ). Sometimes I manage better than others ;)

Anyway, I hope you find a good medical team and a resolution quickly!

All the best,

Jenny

How did your appointment go?

by jenny97 - 2013-08-27 09:08:21

I hope you got some answers.

questions???

by katbell - 2013-08-27 11:08:37

Well I saw the new doctor last Friday, his physicians assistant stated my pacemaker was set wrong, and that my pacemaker should never have been set with out of the box settings or the same as a older more sedentary patient. The doctor changed the settings, and I feel perfect for the first time since Feb. 5th. I asked him before he changed the settings if he had ever heard of a patient talk about that deep ache in your arms, back or chest area? He didn't hesitate to say absolutely! It went away immediately. He actually stated he look over my records quickly, and that he would look them over more carefully, but he thought I didn't even need to be on the flecainide (heart meds) or nor did I need a heart ablation surgery! I can only pray that he is right! I can actually breathe again, no more shortness of breath!! This just goes to show you to get a 2nd or 3rd opinion, before anything major should take place with something as critical of your heart! I had 3 top doctors too! And I do mean top! Chief of cardiology at a major hospital here in Austin, every title and accolade you could receive..etc..etc.. He was very nice, but just to busy and he had too many irons in the fire! He's the one that sent me for thousands of dollars and 4 months worth of tests trying to figure out my extreme shortness of breath, only to accidently change the pacemaker settings and it went away! I said to him, why did you finally change the settings? His answer was I had tried EVERYTHING ELSE! I called him on it and he apologized for it, but by that time I decided to move on. 2nd EP doctor was written up in major magazines, named top doctor in 2010--2011. He was the biggest jerk too! He put me on heart meds, and wanted to do a heart ablation surgery! He sent me home and said I would have to live with these settings. PERIOD! ( He set them himself too) Very condescending and rude! I never went back! This 3rd EP doctor has excellent credentials, and bedside manner too and actually set my pacemaker himself! He seemed to really know the Medtronic pacemaker settings inside and out! I'm hoping and praying for this all to stick and let this 6 month nightmare be over with! I hope my story might help someone else that is tired and frustrated, we know our own body better than a doctor could. Trust yourself ! I did, and I knew things weren't right! Just because they have a DR. in front of their name does not make them right!

So glad to hear you're feeling better!

by jenny97 - 2013-08-30 09:08:51

Congrats! I suggest you get a print out of the settings that are working for you. If you start feeling poorly again after a settings change, you'll have a copy of the settings that worked best for you and can ask for a reset.

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I am 100% pacemaker dependant and have been all my life. I try not to think about how a little metal box keeps me alive - it would drive me crazy. So I lead a very active life.