update.. lots of setting changes

Hello everyone! Been a while since I posted. Things have been going remotely well heart wise at least, until the past month or two. Things seem to be getting out of control for me again. I had my pacemaker interrogated two weeks ago which showed nothing out of the ordinary for me other than I had like 43 mode switches in about a month. Typically that indicates my atrial tach or the inappropriate sinus tach. So today I met with the EP doc. I vented my frustration about the fact that drugs arent working and there isnt really anything we can do pacemaker wise to help with things. I again asked him about going back in and trying to do an SA node modification but he is reluctant. His response... live with it. After taking a few deep breaths to make sure I didnt claw his eyes out (haha that probably wouldnt be good) I again explained to him that this is effecting my every day living and I wasnt going to "just live with it". We talked about switching medications, however I have been on 2 of the 5 that are used to treat this problem and I am not willing (nor is he) to do amiodarone, which leaves us with Tikosyn and Multaq. We decided on Multaq but then he asked if I would try something first. He made several changes to my pacemaker. He lowered the low heart rate from 70 to 60. He lowered my upper tracking rate again from 135 to 130 (this seems to be something that always helps which is why I am so low on it). More importantly he switched me from the activity sensing for rate response to minute ventilation only. Thankfully my pacemaker is one that is able to do just minute ventilation. Gonna give this a shot for a month and if it doesnt help then we'll switch drugs. We'll see I guess. Not all that optimistic at this point but I am willing to give it a try at this point. Hope everyone is doing well.

13 Comments

Sinus node modifications

by golden_snitch - 2011-06-07 04:06:32

Hi,
just a few comments:

Firstly, I can tell you some very scary stories on sinus node ablations/modifications, starting with my own. And I cannot even tell you one success story of these ablations. I do not know a single patient for whom this worked well, on the contrary, they all developed more arrhythmias afterwards, and even life-threatening complications like superior vena cava syndrome (which I and two others I know had).

Secondly, all the patients I know who underwent sinus node modifications had, at least at daytime, non-stop tachycardia with rates around 120-160 or even more beats per minute. Not episodes of tachycardia, but non-stop tachycardia. I even had it at night, my heart rate would never drop below 110 or so. In all those patients the ablation was the last resort. My EP would never do such an ablation in someone not running a permanently tachycardiac heart rate. No way.
You seem to be not anywhere close to having permanent tachycardia or am I wrong? Because permanent, drug-refractory tachycardia seems to the only indication for me (and my EP) to do a sinus node modification.

Thirdly, most patients who underwent sinus node modifications end up with chronotopic incompetence so that the pacer's rate response has got a lot to do. Now, I can tell you no pacer rate response comes close to a working sinus node.

To cut a long story short: Keep your sinus node as long as possible. Sinus node modifications didn't work in all patients I know, they all needed several attempts and in the end the sinus node was destroyed completely and the patients developed more atrial arrhythmias later on. Ablation should be the very last resort.

I hope I didn't sound too harsh.

Best wishes
Inga

Another thought

by ElectricFrank - 2011-06-08 01:06:22

Sam,
The important thing to keep in mind is the nature of what you are going to try.

Things like meds, pacer adjustments, or even a different type of pacer are reversible. If they don't work or worse have undesirable outcomes they can be stopped or changed.

Ablation isn't reversible. Once tissue is destroyed there is no going back. A colleague of mine years ago badly smashed a finger in an accident. The ongoing pain was nearly unbearable, and he decided the only thing to try was amputation. It turned out that the phantom pain in the amputated finger was much worse than before.

good luck with the whole thing,

frank

..

by sam78 - 2011-06-08 01:06:54

thanks for the opinion Inga... but you have no clue what I go through day in and day out.

Something to think about

by ElectricFrank - 2011-06-08 02:06:35

"you have no clue what I go through day in and day out" is an indication that you are justifiably getting desperate.

WATCH OUT! That's when we make the big mistakes. As Inga is saying, things could be even worse.

I really do understand. I've been through situations like that myself.

best wishes,

frank

wow

by heartbrokenKrista - 2011-06-08 03:06:41

Hope things work for ya Sam.. you are right, all you can do is try. My doctor always tells me to hang in there that if something doesnt work then he will just try something else.

Krista

.

by sam78 - 2011-06-08 03:06:49

Frank- you are right.. I am getting desperate because what we are doing now is not working. I understand things could be worse but when it gets to the point that you cant function in every day living, its time to request something different be tried. I accepted trying setting changes and will do the next thing he recommends which is switching drugs. All I can do is give it shot right?

clarification

by sam78 - 2011-06-08 04:06:38

I guess I need to clarify.. in the end we decided to make a lot of pacemaker setting changes and if that does not work then we will change medications. Ablation was something that I discussed with him not something that is planned.

On the other hand, I am quite disappointed in the lack of encouragement and support from this website. I thought this was suppose to be a site to helps others, instead I find myself defending myself for questions I asked or thoughts I had.

Permanent tachycardia

by golden_snitch - 2011-06-08 05:06:57

Hi!
Posted another comment this morning, don't know what happened to it. Just wanted to say: If there are people who have a clue what permanent tachycardia is all about, I'm certainly among them. I have dealt with an average heart rate of 120-140bpm 24/7 - yes, even at night. I had no "inappropriate" tachy, but a permanent sinus node reentry-tachy. As soon as I moved the rate went even higher to 180-190bpm and it often took hours to get it back down to 120-140 again. I have had several sinus node ablations because meds didn't work at all; and I have had two ectopic atrial tachycardias, AVNRT and atrial flutter following the sinus node ablations; and I have had superior vena cava syndrome because of scar tissue from the sinus node ablations and needed open-heart surgery because of that. And I'm still having arrhythmia.

I have a clue, believe me, and it's because I have that clue I'm suggesting that you think about a sinus node ablation very carefully, and that you try everything to keep your sinus node as long as possible.

Best
Inga

Sorry Sam

by ElectricFrank - 2011-06-09 02:06:26

I had no intention of putting you in the position of defending yourself. I could say more, but I'll leave it at that.

frank

.

by sam78 - 2011-06-09 08:06:03

Frank - thank you for the apology, however it was not so much you. And thanks for leaving it at that too!

Snitch- read my clarification, and I asked about a SA node modification, not a complete ablation, but again we decided on meds and settings changes. I understand the point you are trying to make, im just not sure how to explain mine any better unless you lived in my shoes. Things are different for you then they are for me. But again I get your point.

Well...

by golden_snitch - 2011-06-11 04:06:35

... if you really want to believe that there is no one having lived in your shoes, then so it be. I'll leave it at that. Good luck with the new settings and meds!

yes

by sam78 - 2011-06-11 06:06:43

yes I really do want to believe that because each and every person is different at least in some little way. Two people with the same diagnosis are still different, some tolerate things, some dont, some have other things that compound the situation. It is like the saying.. no two feet are ever the same, while they may be similar in shape they are still different. Thank you for the luck.

wondering how the new setting are working?

by nat36 - 2011-06-12 01:06:36

I hope they help. I am having a similar issue and at times feel so alone and desperate to feel better. I have days where I would try anything! So I understand what you mean. I have had a sinus node modification and would have already had another one except that my phrenic nerve sits on my heart and it was damaged the first time and it is too dangerous to do again for me. I have changed settings and meds over and over. The latest thing I have tried is to add Toprol to my Sotalol that I take three times a day. It just made me feel awful. I was too tired to function. I had to stop so now I am back to just the Sotalol and I don't go back to the doctor until the end of next month. I am very frustrated as well. It is a very hard thing to live with on a daily basis. I hope you find some relief soon!

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