Adapting to PM?

Try it and see...

by Gotrhythm - 2023-09-10 14:07:55

Unfortunately there is no objective guide book that will show which settings will always produce which symptoms--or aleviate them.

I get your frustration with the walkabout/how do you feel test. Been there. And yet, once or twice, one small change really did make a difference that was unmistakably right and good, if not instantly, within five minutes. So, it's not totally unreasonable on their parts. I

Cylcling is a special category for pacemaker settings, one I'm not qualified to comment on. But the dizziness--that in itself is very complex, and may turn out not to be pacemaker related. In my case, there was a touch of orthostatic hypotension complicating the issue. 

But no. You are not supposed to just learn how to live with it.

Document and complain about everything!

by USMC-Pacer - 2023-09-10 14:27:46

My biggest issue with both of my devices have been with "upper tracking limits," or MTR (max tracking rate) - IF you are hitting that, you will not feel well at all. (drop in HR, dizzy, sick feeling in stomoch, weakness) That's an easy fix. For me, I also had some AV Timing issues that took a few visits to get squared away. I finally had to get on a treadmill, all wired up with a Medtronic Tech to see what was happening real time. They made a few adjustments and I instantly felt better. Don't except their "good enought" stance. If you don't feel right, there's most likely a setting that is causing it. Write it down and keep complaining. 

Been there too.

by Penguin - 2023-09-10 15:18:57

I had a change made to my rate response and was advised to walk around the corridors afterwards. I did so and I was fine in the clinic.  I then went out for a long walk up a hill the next morning and had some unpleasant feelings I didn't recognise.  Symptoms didn't improve - they got worse.  It was the settings.

Did your clinic change your setting to AAI with Rhythmiq on and did your consultant / pacing tech suggest how long you should wait for any symptoms to settle? 

It's really difficult sometimes when you feel like you're constantly reporting issues. It doesn't mean that you're making it up or should put up with it beyond the trial period suggested by your docctor.  You're quite right to keep asking for help.

Thanks for the replies!

by Aintgotrhythm - 2023-09-10 19:46:40

I'm definitely not accepting the "good enough", I've sent a message to my EP telling him I'm lightheaded all the time and sometimes worse so these settings are clearly not working for me.

I also noticed (and told him) that the rate response settings aren't right. On a relatively short ride (24 miles) today I noticed that while riding a steady tempo my HR dropped to 84. When I started a climb it took 15-20 secs for my HR to rise so by the time it hit a level commensurate with the effort my muscles were blood/oxygen starved.

And to answer the question Penguin asked: at my last visit I went in with the intent of having them change the settings to AAI(R), they did so but I immediately started dropping a significant number of v-beats (about 20%). I'm currently at DDD(R) with RythmIQ on.

I'll keep at it...

Been there, done that, got the tshirt

by Lurker - 2023-09-10 23:46:37

I find that no mater how slight a change,  my body needs at least 2 to 3 weeks to get used to the change. The last time the rate response was really cranked and it took a very time. 

Doc DX

With exercise I would have rhythmiq off

by PacedNRunning - 2023-09-11 00:43:58

Maybe why your beats dropped while exercising is because of rhythmiq if that's on at the time. Do you feel the slowed beats or you see it on your watch or device? This algorithm checks for intrinsic xxx minutes which tries to look for intrinsic beats. It will check with exercise. If you can tolerate it then maybe leave it on but for me and exercise it was very disruptive to exercise. I would be running and all of sudden became short of breath. Never really experienced lightheadedness or dizziness. It would take me a while to recover after each check. 
 

Did they adjust rate smoothing? Perhaps pick Up or down. I found both on didn't feel good. I have down on only and that should help with slowed beats. I don't think rate smoothing is on when rhythmiq is looking for intrinsic so you'll feel the slowed beats. Not really sure. 

It is tricky to set it right. Best bet. Pick one exercise you do the most and try and tweak it to that. There is a give and take but you have to decide what is toleratable and acceptable. An example l would be leaving rhythmiq on Vs having it off. If it feels better overall with it on then it may worth the trade. Hope that makes sense.  It takes the accelerator a week to learn your heart. So give it time to learn.  This is where notes come in handy. I would forget how I felt with each setting change. It helped to look back and see what I was experiencing. 
 

Im hoping you will get there. Hang in there. 

PET scan

by Penguin - 2023-09-11 10:15:52

I might  have missed it when reading through your posts but I couldn't find an answer to Gemita's questions about a PET scan that she asked on an earlier post. After reading all your posts I see that your surgeon / EP was concerned about some to scarring on your heart and had put in a PM for now, with a review pending in a couple of months to see if an ICD is necessary. 

 You're at 6 weeks post implant now and have another 2 weeks to wait (approx) for the 2 months to be up.  Has your EP / consultant arranged to see you again then? 

Just wondering whether he's collecting data from your PM to determine what's going on and whether that may be why he wants you to stick with one setting until he sees you. 

Did you ask him about any VT or what he thinks about the PET scan? 

Sorry to bring up something depressing, but the scarring probably needs to be struck off the list of causes at some stage. :-/  Fingers crossed that all is well. 

Some responses

by Aintgotrhythm - 2023-09-11 15:59:10

Thanks all for your continued interest and replies. A few comments:

Lurker: it might well be the case that adaptation/adjustment is required. I know that I'm constantly lightheaded/dizzy now and it's been a week since the settings were last changed so it seems like they're just not right.

PNR: they did not change rate smoothing, at least I don't think so, I've not yet seen the full report. The exercise I do most is cycling (by far) and that's what I'm trying to get it tuned for. I don't see anything in the documentation about the PM "learning" but perhaps it does. I do keep a daily journal and it's been helpful to go back and see my reaction to changes and describe what I'm feeling to the EP.

Penguin: I had the PET scan on 9/8, no results yet. The EP has said he wants to wait until my next device check (November) to see me but two more months seems a long time to be dizzy. I'm assuming I'll speak with him about the PET results and will have a "full and frank" discussion at that time. And yes, the scarring needs to be struck off and that could well be why he's choosing to wait on settings changes.

Thanks again all!

Welcome

by PacedNRunning - 2023-09-11 20:45:39

I was out walking today and forgot to mention to only make one adjustment per pacer check. This way you will know what works and what doesnt as far as settings.  You can also ask for a print out and it will show the changes made.  

I hope they can find a tolerable setting soon and then fine tune from there. I had gone in once per week for a month to find the right setting for one adjustment.  We kept shortening my AV delay until it felt good.