feeling like **** and extremely frustrated

Ok so you all say its not the pacemaker its the programming. If it feels wrong then it needs to be changed. Well I have been to the cardiologist almost every week since the first of this month with them making changes. So now what... they have talked to the reps, multiple techs have interrogated, and EP doctor has made his recommendations. So now what? I feel like complete crap. I had what they thought was pericarditis.. have been in the ER the past two nights... one being with chest pain... the next with shortness of breath. I cant walk from room to room in my 700 square foot apartment without feeling palpitations and quite short of breath. Hx is atrial tach and inappropriate sinus tach. Right now I am set at DDDR, rate 80- 110. We are slowly lowering the low rate every month. My last change was to lower the high rate. I have very inappropriate sinus tach, so when I was at a higher rate, my trends were terrible with my heart rate being mostly in the 100-130 range. So, either I get palpitations because my heart rate was in the 130's (before we lowered the rate), or now I get palpitations whenever I go to do something and get extremely short of breath. I am frustrated.... I feel at this point this was all for not.. as right now I am worse off then before. What do I do? What do I ask about? What do I recommend??

17 Comments

What Would I Do

by J.B. - 2009-08-30 11:08:53

Of course I can't tell you what you need to do. I can say that if I was in your situation and having the problems you are having I would have the rate response turn off to see if that will help.

The rate response is a separate circuit from the other impulse control circuit. It only comes into play when you are active. With out it my pacemaker will keep my heart rate at least as high the low set point on your pacemaker. Then without the rate response I would expect to find out just what this thing doing for me or to me. With the RR every time you move, for all practical purposes, you have another player in the game and it is sometimes hard to know who is doing what.

During the first year I had my PM I was going through all sorts of trials and tribulations including chest pain, PVCs and skip beats and my doctor was willing to try things so long as he knew it would not put me in danger. So he tuned off the RR and increased the low set point by a figure of 10. It didn't solve my problems totally, but it did help considerably. Since then the RR response has been restarted but with lower settings.

Good luck,

J.B.

Two questions

by golden_snitch - 2009-08-31 01:08:00

That sounds awful!

Just wondering: are you on any meds for the inappropriate sinus tach? Probably ivabradine? If not, that might be worth a thought as without it the pacer is likely to be competing with or be inhibited by the sinus node. And then, what kind of pacer do you have and why? A badly programmed rate response might cause problems like you describe.

Best wishes,
Inga

ughhhhh

by sam78 - 2009-08-31 02:08:11

I believe what you're saying Frank is indeed the case. we need to be able to get my pacemaker to the point where it will totally let the atra do what it wants to do up until a rate and then make the ventricle set rate took over when the atria goes above it. I think the skipping beats is what makes it feel funny. But like I said it is either feel funny at the lower rate, or have them increase it and then I get more higher hearts most of the time. I think that having the lower rate is the answer but I think that we are going to have to put my meds back on board to settle the atrial stuff down. What I watch on the monitor last night while i was in the ER was that it was pacing me (atrially) in 90's and I was laying flat in a bed. I dont think this should be happening. It should just let my atria set my heart rate up until the 110 and then the ventricle take over. What happened makes me think that this from the rate response. Does that make any sence? Rate response makes sense to me if patients with bradycardia or fib or SSS. But my atrial is still able to appropriately control my rate when i am at rest. I need the pacemaker to sense in the atria so it will conduct to the ventricle but after 110 then it should just ignore the atria and keep my at 110 until the atrial rate drops. Is this possible?

I have been pulled off all my meds but one. I was on digoxin, flecainide, toprol, and midodrine. I dont think the midodrive did anything, They still have me on toprol but we are trying to get off it. Obviously, not working well.

Don't give up !

by ppt - 2009-08-31 05:08:39

It took 8 months to get my settings right. During that period I heard "Deal with it!" from one Cardiologists Nurse Practitioner and I heard "We can not do anymore for you" from the Medtronic Rep. But I kept pushing and I kept going in week after week - they did more and more tests - finally I got to a great EP - I can now go to the gym - you know your body and you know how you feel - push them for answers! Hope this helps :-) Good luck

frustrated

by sam78 - 2009-08-31 10:08:17

at this point I am so frustrated I wish I would have never agreed to this. I am going to wind up back on the same dam medications I was on to start with so tell me exactly the point of what they did. I am beginning to wish I would have requested to go to the cleveland clinic or somewhere that specializes in atrial tach and inappropriate sinus tach. I never quite completely understood why they wouldnt have just ablated my SA node since it is the major problem. Oh well TOO LATE NOW!!! I guess I will ask about the rate response and trying it off. I believe we did some testing with it off but I am not sure. I know that I did testing with atria sense and only ventricle pacing which put me in 2:1 block which was NOT good!

Franks comments

by ElectricFrank - 2009-08-31 11:08:10

From your description that the pacemaker is pacing your atrium in the 90's while lying in bed (assume you could see the atrial pacer pulses on the monitor), that would indicate the rate response acting very strange. It could be from being set way to sensitive to an actual failure in the pacemaker itself.

Are you able to tolerate the pacer being totally turned off for a short time. With my Medtronic the rep can set his programmer to respond to his holding a key down by stopping all pacing. I periodically ask him to use it on me to see how dependent I am. With my AV block my HR drops to somewhere in the 25-35 range. I usually have him try it with me sitting in a chair first, and then try it again with me standing. I feel crappy while the pacing is off but have never felt light headed or shortness of breath.

Anyway, if you could have this test while also hooked up to an ECG it would give a look at what your heart does on its own. Then based on what shows up try some various pacing approaches. The idea behind all this is to try to isolate what is going on. Too often they start adding meds, ablations, various settings until there is no way to tell what you really need.

In electronic troubleshooting I call it "Destroying the Evidence". It took me about a semester and sometimes two for my electronic students to stop flailing around and start doing some controlled measurements.

frank

switch it off

by golden_snitch - 2009-08-31 11:08:12

Hi Sam!

I agree with Frank: the pacer can't help with any kind of tachycardia, it's there for pauses, bradycardia or chronotopic incompetence.

If you don't need the rate response, then let them just switch it off and see how that feels. It's a feature than can be switched off. I'm sure your own atrial rhythm is inhibiting the pacer; as soon as there is a rhythm that's faster than the pacer, it will be the "boss". From what you wrote I can only guess that you have a heart block? Or what's the reason for the pacer? Sorry that I keep asking, but I find it a bit hard to understand your questions without knowing what your diagnosis is.

I believe the atrial lead could also be switched to just sensing, not pacing, but I'm not sure about that. You'll need to ask your doctor.

I'm having this problem that the pacer is inhibited by other atrial or even fast av-nodal rhythms, too. Doesn't feel good. I'm on Amiodarone now, 99% paced in the atriums, just about 1% in the ventricles. I still go into av-dissociation sometimes because even the Amiodarone is not controlling the fast av-nodal rate all the time, and then I have a pacer rhythm in the atriums and a different av-nodal (or junctional) rhythm in the ventricles.

All the best,
Inga

Frustration

by ElectricFrank - 2009-08-31 12:08:56

I can sure understand your frustration. When we mention that it isn't the pacemaker, it's the programming what we mean is that the pacemaker hardware itself is working OK. The hardware is working correctly if it follows the programming instructions it is given. The only hardware problem that can be encountered is a lead wire problem. This usually shows up on the interrogation report at a checkup.

Now to the real issue. All a pacemaker can do is to stimulate your heart to contract. The most common installation has one lead in the atrium and another in a ventricle. Either or both of these leads can be used to sense what its chamber is doing or it can cause that chamber to contract. The pacemaker cannot stop your heart from beating at the wrong time or at too fast a rate. (A simple way to put it is that the pacemaker can act as a gas peddle, but not a brake). The atrial tach and inappropriate sinus tach both fall into this category. If the atrium decides go off on its own and beat at 130 bpm the pacemaker has no control unless you have AV block in which case it can keep the the atrial tach from being conducted to ventricles.

I suspect that the shortness of breath and palpitations are from the very low upper limit setting of 110. The way the pacer tries to enforce the upper limit is to skip beats which is uncomfortable. With all the stuff you have going your HR probably tries to exceed 110 when you suddenly get up to move around.



If you have pericarditis this can cause the conductive tissue in your heart to be irritable and it can create all sorts of rhythm problems.

frank

SA node ablation

by golden_snitch - 2009-09-01 01:09:34

Hey,

just more one input regarding an SA node ablation:

Don't go for it unless you have permanent sinus tachycardia and absolutely no meds work. A pacer can never be as good as a sinus node even though it may cause inappropriate tachycardia. I have had a permanent sinus node reentry-tachycardia running at 120-140bpm 24/7 (yes, even at night), and as soon as I moved it went up to 180-190 bpm and it took ages till it went down a little. No meds worked, and Ivabradine was not on the market, yet. I had three ablations done for this tachycardia. During the first two they tried to modify the sinus node - no success. So during the third they ablated a whole node, and six weeks later I got the pacer. Now, do I regret this? No, actually I don't, but I'm well aware of the fact that a working sinus node is better than anything else. I paid a high price for getting rid of the permanent tachycardia: like Amanda I ended up with a superior vena cava syndrome years later which required open heart surgery. It was caused by the scar tissue from the ablations. Plus, I developed more arrhythmia, and actually do not know a single patient who underwent sinus node ablations who did not develop new tachycardia afterwards. So I would always say, don't let them even get close to it with an ablation unless you are in tachycardia 24/7 and nothing else works. I'm being treated at a center where they perform about 1800 ablations per year; my EP professor says only 1-2 are sinus node ablations because they only do this in very, very tough cases as the outcome usually isn't that good.

Ask your doctor about Ivabradine. It's a (the only) direct SA node inhibitor, doing nothing else but slowing the SA node down. I have heard some success stories of that.

All the best,
Inga

One more point

by dward - 2009-09-01 07:09:44

In scrolling through this thread I couldn't see how long it's been since you had your PM installed.
Yes, the settings are important and there are many explanations and ideas that have been posted.
Have you considered that "healing" time may also be a factor?
It took about 12 months for me to totally heal. During that time, we thought that my leads may be too close to my Phenic (sp?) nerve because I was getting (involuntary) muscle spasms when my PM would pace in the ventricle and we were considering changing the leads!!

It came down to my choice - replace the lead or wait a while and see if it subsides on its own. I decided to wait.

It totally cleared up after a couple of months, it turned out that my body just needed more time to heal.
Not saying not to ask the questions and fine tune the settings, but I would ALSO keep in mind that healing time may also help - so don't get too upset ('cause I can tell you first hand - that's not healthy!)

Good luck and God Bless...

still frustrated....

by sam78 - 2009-09-01 08:09:47

Thank you all for your feedback.

Frank... yes I have had my pacer turned off to check underlying rhythm... I have an ideoventricular rhythm with a rate of 30.... and yeah feels pretty crappy. My cardiologist tells me I only have two modes which will work for me... either DDDR or DDIR. I tried the DDIR for all of about 5 days and couldnt stand it. I felt like my heart was beating out of sync with every beat. Therefore we went back to DDDR. I will be sure to discuss the problem I saw with them tomorrow. I do feel a bit better with the high rate only being 110 however, we just finished doing a 24 hour pulse ox test and I think they will be shocked tomorrow when they see the results as well as look at my rate trend. Everytime I looked at that monitor my heart rate was 90-110. I dont like the feeling when I am sure my atria beats faster than 110, I can tell it is competing with the pacer and I go into that irregular fast... pause.. normal..etc crap. Tomorrow will be interesting for sure. Still have the chest pain and still short of breath. I am quite certain something else is going on.... be it pulmonary hypertension or still pericarditis, i dont know, but I know SOMETHING has got to be done.

snitch... I have never heard of Ivabradine.. I will likely ask to go back to flecainide before I try something else as flecainide worked fair for me. I know he would like to try that new drug out (well newly FDA approved-- starts with a D).

I will post tomorrow and let you know what we do! Thank you ALL for your support.

Keep us posted

by ElectricFrank - 2009-09-01 10:09:05

With your involvement in the settings and results you have a much better chance at getting things worked out. There is a subtle effect where the medical folks know you are watching and knowledgeable. You are nearly so likely to get the "change something and out the door" treatment.

You ought to see the treatment I get these days when they found out I have my own ECG plus the technical manual on the pacer.

frank

Ivabradine, Dronedarone

by golden_snitch - 2009-09-02 02:09:15

Hi!

Ask your doctor about Ivabradine (Procoralan is the brand name). It's a good thing as it only slows the sinus node down, nothing else. I believe it also doesn't have the serious side effects Flecainide has.

The new drug is Dronedarone (brand name Multaq). It has recently been FDA approved for the treatment of atrial flutter and fibrillation only. So, not sure if you'll be able to get it off label. It's a multi-channel-blocker like Amiodarone just without the iodine components Amiodarone has. It has less side effects than the Amiodarone, especially no irreversible damages done to the lungs etc. But it's blocking all channels, and unless you don't have any other arrhythmias than an inappropriate sinus tachycardia, if I were you I would rather stick to drugs that don't block everything. I mean this could make you feel bad, too.

Good luck for the appointment!
Inga

Heart block?

by golden_snitch - 2009-09-02 03:09:10

Sorry, it's me again ;-) Just one more question:

Do you have any kind of heart block? I was wondering because if you don't, you could also try the AAIR or AAI pacing mode which means that only the atrium is being paced. I have had that for many years after my complete sinus node ablation as my av node was working perfectly well, and I really liked this mode. Now I have a pacer that switches from AAIR to DDIR when a heart block occurs. I do feel the difference, the AAIR pacing feels much better.

Best wishes
Inga



update

by sam78 - 2009-09-02 06:09:54

Frank... I bet they give you some dirty looks when you first told them about the ECG!!! That is too funny,.

Snitch... I think you totally misunderstand my problem. I have atrial tachy and inappropriate sinus tach... I had a complete AV node ablation so yes of course I have AV block.

The doctors visit was quite interesting today. I only saw the PAC but he is quite knowledgable in my problem so I was grateful to see him as opposed to someone that doesnt know my history. Of course my EP doctor scheduled several months out so to see him with urgent problems is impossible. We did a lot of testing in the clinic today. Walked around, let them see my shortness of breath and watch what my heart rate does. We did take the rate response off. We went back up on the high rate so I am now 80- 130. I am just having so much inappropriate tach that I was back into that "competing with pacemaker" stuff where I was getting pauses as such. They put me on a course of steriods to try and help with the chest pain and shortness of breath. They are figuring I still have some pericarditis and myocarditis. We also are going back up on my Toprol. I have not have good results with Toprol affecting my atrial rates and slowing it down, but we are going to try it before we add the antiarrhythmic back in. Lets pray this all will make a difference. I think the inflammation in my heart is what is making me feel so incredibly terrible. I go back in a week to check my histogram and see how much tach I have been having. Cross your fingers!!

av-node ablation and still having tachycardia?

by golden_snitch - 2009-09-03 01:09:46

Hi Sam!

Sorry. You only mentioned the atrial tach and inappropriate sinus tach above, and nothing about an ablated av-node (didn't figure on my own because ablating the av-node is mostly done in atrial fibrillation patients). I asked about why you had the pacer, but you didn't answer, and it also doesn't tell in your profile.So, yes, I didn't quite understand your case.

I wonder, though, why you still have those problems with atrial tach. I mean, I might get that wrong again, but didn't you undergo the av-node ablation to get rid of these tachycardias? With an ablated av-node, your atriums can still be in tach, but it's not supposed to be conducted into the ventricles. The pacer is supposed to slow it down appropriatly. I just know some atrial fibrillation patients who underwent pacer implant and then av-node ablation, and they are still in a-fib, but they don't get any irregular, too fast or too slow rhythms any longer.

I hope all that inflammation will be gone soon. I can only imagine that it makes you feel bad. I have my fingers crossed for you.

Best wishes,
Inga

so ridiculous!!!

by sam78 - 2009-09-03 08:09:44

HEHE i never knew I had a profile.. I did find it and update it for ya snitchers!!!

The problem is the mode that would ignore my atria and set a specific rate would be the DDIR mode. I was in that and felt terrible. I felt like I was totally out of synch. So we have been trying this DDDR or the DDD mode and when my atria goes above the set rate, it gets all confused and skips beats and goes all irregular.

I just got back from my doctor AGAIN as what they set me at yesterday was not working. I got a huge ear full from my doctor telling me that they couldnt have me in the office every week to change settings around. Made it sound like this is my fault and that I just need to deal with it. Extremely frustrating, and makes me feel worthless. I think that they just dont know how to set the pacemaker with what I have. We ended up putting me to DDD with a rate of 70-110 and then it will mode switch if my atria goes to 130 into DDIR. It still gives me like a disassociation when it goes above 110 but at least then it gives me a regular ventricle rate and doesnt get all confused. He said if this doesnt work he is sending me to the Mayo clinic. That ought to be fun!!! :(

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Member Quotes

I had a pacemaker when I was 11. I never once thought I wasn't a 'normal kid' nor was I ever treated differently because of it. I could do everything all my friends were doing; I just happened to have a battery attached to my heart to help it work.