Advice needed. Heart rate accelerating with very little movement!

Hey all,

Need some input/advice!  I have CHB with a Medtronic dual chamber atrial sensing rate responsive pacer.  The last few weeks, and with increasing frequency my heart rate has been rising up to 120-180 plus (measured via pulse oximeter) when barely moving or even just standing. If I am laying down I am ok, car rides seem to activate it as well.  I get shortness of breath and major palpitations when it happens and upon laying down it will take up to 30 min to fully slow down to normal 70-80 range.  Sometimes it lingers at over 100 for almost 20 min before starting to drop.  I have never had this issue before and as far as I am aware my settings have not been changed.  I have the device for home checks but I don't know if I need to capture it during an episode or if it will back date to a certain point.  Anyone know what might be causing it?  Also it doesn't seem urgent enough to constitute a urgent care or ER appointment since I can slow it down by laying down (plus with covid I would like to avoid the germ factories), if you think I am incorrect and that this needs to be addressed urgently please let me know, otherwise I was going to wait until I get in with a new cardiologist, just got a referral yesterday (but that could be a few weeks).  Thanks all!!! Hope you are staying safe!


11 Comments

High heart rates

by Gemita - 2020-08-08 18:01:23

Hello Asully,

You need to speak to your doctors sooner rather than later in my opinion and get some accurate monitoring of your heart rate and rhythm done.  

I see you have had tachy arrhythmias in the past.  Have you got a Kardia Mobile monitor or similar to check your heart rate and to do an ECG when you are symptomatic ?  Not sure how accurate your pulse oximeter is going to be at high heart rates or during irregular rhythms.  Armed with a Kardia Mobile ECG print you could go to ER for analysis or they could interrogate your pacemaker?

The tachycardia could be pacemaker mediated since you say car rides can trigger your symptoms, so perhaps one of the settings needs to be adjusted or turned off, although I see you say that you do not believe your settings have been changed.  I would certainly not be prepared to wait for several weeks with this problem before getting some answers.  I would try to do a download when you are symptomatic and then have a word with your clinic.  If your heart rate goes up to 180 bpm this should trigger an alert on any download.  

Good luck Asully  

Get a cardiologist

by Gotrhythm - 2020-08-08 19:30:01

Looking at your bio/ comment history, I noticed you asked about atrial tachycardic episodes a month ago. Are you talking about the same problem, or something new?

Did you ever talk to an actual MD, or EP cardiologist? What were you told?

The simple answer to your question is call your cardiologist. Your pacemaker apparently is programmed to record tachacaria episodes, so if you could manage to send a download when an episode is occuring, or has just occured, that could provide useful data when you are eventually seen by someone.

Covid or no covid, don't let fear of infection keep you from going to the ER, if you really think you have an emergency. ERs carefully separate patients with covid symptoms from others. Masks must be worn by everyone all the time--including you.

But even in the best of times, the ER is not the place to go to get a diagnosis.

I understand how strange, scary even, a suddenly racing heart can be. For years I had tachy-brady. Even though I needed a pacemaker for when my heart was too slow, there would be times when suddenly, for no reason, my heart would pound and beat very fast. Over the years as my percentage paced went up, the tachy episodes went down until technically they weren't tachycardia at all. They were just occasions when I was at rest and my hr would jump to 100. My personal interpretation is that as my sinus node failed more and more, it ceased to be capable of speeding up at all

But that's me. I'm not a doctor and would not attempt to diagnose you. But this much I can tell you. The cause (whatever the problem is) is not the fault of the pacemaker. It's also not something the pacemaker can prevent. That's just not how pacemakers work.

Going fast for no reason is something your heart is doing by itself. The problem is your heart. That means you really should see a cardiologist.

 

 

Tachycardia

by AgentX86 - 2020-08-08 20:17:53

Gotrhythm has it exactly right, exept I'd substitute "really should" with "really need". I also agree that an ER isn't the place to go unless you think it's a real emergency.  If this has been happening for some time, it's not an emergency now but you really need to see a cardiologist, preferable an EP but if you don't have a relationship with one, they can be even more difficult to see.  Given that you have a pacemaker, you need to have a relationship with one or the other (or both).

Gemita has a good insight, as well.  This might just be pacemaker mediated tachycardia.  This usually just requires some settings changes to protect against it but, while it may not be an emergency, it needs to be dealt with ASAP.

If you have a home monitor for your PM, a transmission while it's happening will give them a good idea of what's going on.  A transmission afterwards will have lost a lot of information. If really is an emergency, they'll direct you to the ER or they can make an appropriate appointment to see an EP/cardiologist.

 

Thanks all for the responses!

by asully - 2020-08-08 23:09:37

I had thought about Kardia a few days ago, my dad who has CHF, AFIB, and a handful of ablations thought it might work for better readings at home.  Unfortunately we read the website and it states it won't work with paced rhythms, well technically they said something like "it has not been proven" or some other liability reduction phrase.  Haven't been worried enough to shell out the cash for something that may or may not work.  I am not sure if these are the same tachycardia episodes I have had in the past and the duration is just getting longer and they are more frequent (with a family history of AFIb and chances of pacemaker mediated tachy, this has been a concern).  I still do not have a EP, technically I have never had one; I found out why however.  Apparently my old cardiologist was trained in EP along with surgery, CHF, and all the other sub speacialties so I didn't need one.  I have been waiting for a referral to go through for an EP since I moved about six months ago, took me three to get in with a cardiologist and he ended up being a dud (couldn't even get a routine echo approved by my insurance, tried to claim I do not have heart failure lol, and keeps not returning calls or following through with ordering tests.  I just got a primary (since the move, it took six months to get one) and I had him refer me to a much higher level cardiologist so I can get appropriate attention and care but the whole red tape new patient HMO thing on top of covid keeping all the docs busy here has really slowed down the process of getting set up in a new state.  So I am kind of stuck in that waiting period.  I know an ER visit would likely result in me just being sent home with a referral or maybe overnight monitoring and release with no solid answers etc .  Urgent care will just send me to ER and primary has already put in the referral :(.  Despite Covid I still think ERs are pretty useless unless u have an immediate life threatening issue or a broken bone etc.  I wish I knew how long my pacer home monitor will capture, tried the on call cardiologist this evening to ask for suggestions and have not gotten any response (so it goes).  I am curious if the new pacer tech who interrogated my stuff to establish care here about a month ago made a change and did not tell me, which would not be very cool (I did mess up and forgot to get copies of the interrogation like usual). Extra info I am paced 100 percent in ventricles and about 30 percent of the time in the atria. Oh, and in case anyone did not notice, I am in rural Georgia outside Atlanta and despite precautions in hospitals they aren't doing great, I was over there the other day for labs and saw cross contamination, mostly mask less or misused masks (nose hanging out, removing them etc), and little enforcement of social distancing or evidence of routine sanitization.  I am going to put in a call to primary first thing Monday and see if Incan get him to put a rush on my referral.  Thanks again for advice and support!!!!  I try to explain this stuff to my other half and he just gets confused lmao I just usually give up and tell him things like (not an emergency but urgent, or needs to be monitored) it's nice to have others who know the details!

 

Stay safe!

Cardiologist

by AgentX86 - 2020-08-08 23:36:03

Hi asully, if you need an excellent interventional cardiologist send a private message.  He did my heart cath six years ago and does PM implants, though my EP did mine.  My brother comes cross-country just to see him.  He's in Peachtree City, so not too far from you.

My EP is at Emory Midtown, so a bit of a drive into the big city. He's been taking care of my flutter and did my left atrial ablations and AV ablation.  It'll take a while to see him and it's better if you have a referal.  He's a really nice guy too.  At least one other poster here goes to him.

Let me know if you're interested.

Monitoring

by Gemita - 2020-08-09 04:22:05

Hello again Asully,

The Kardia Mobile ECG can be read without difficulty by a competent cardiologist and good info can be gained.  My doctors at the start of my journey with arrhythmias even recommended it !  Kardia have not tested for use in patients with pacemakers, that is correct, but it still works.  For those not expert in reading ECGs, the ECGs of pacemaker patients may be more complicated to fully assess but a good cardiologist will have no real difficulty.

Yes your pacemaker will log a high heart rate like 180 bpm.  What I would do is to keep a note of the time and date you have a really troublesome symptom and when you next see a doctor who interrogates your pacemaker, they can check the data for confirmation of the event.  I had a really bad attack of Flutter/Tachycardia/AF in April. Was very symptomatic and unstable for several hours.  When I went for a recent pacemaker check, sure enough the event was logged and an ECG was stored.  Unfortunately technicians couldn't really 100% confirm from stored ECG whether event was all due to atrial tachy activity but my excellent EP was able to immediately confirm a mix of both atrial and ventricular tachy (the latter only brief runs).  The main point is that your pacemaker should log an event if parameters have been set to record any tachyarrhythmias over a set limit of say 170 bpm.  Mine certainly does but it depends what the set limit is and for how long you sustain the arrhythmia.  The parameters have to be met before the arrhythmia is logged but as you are getting lengthy periods of tachycardia and symptoms of breathlessness, I feel fairly certain that your pacemaker will be logging the information.

I note what you are saying about A&E/ER.   Of course I accept they are emergency departments only but over here in the UK they are sometimes the only choice we have available to get seen quickly when we get worrying symptoms.  I have taken my husband to A&E several times in recent months due to deteriorating symptoms and was able to get him the treatment he absolutely needed (insulin and an urgent pacemaker adjustment) since our general doctor and our hospital consultants are still only mainly doing telephone consultations due to the virus which are far from ideal.  A&E/ER can quickly assess your problem through a range of tests and either start treatment immediately, for example, make any necessary pacemaker adjustments, start antibiotics for any chronic infection causing your tachycardia, correct any electrolyte imbalances, prescribe new medication, stop or adjust dosage of your current meds which might be causing your problems or make an urgent referral to the appropriate specialist, so I would not regard the visit as a total loss of time.  Yes it might be a potential risk going there at the moment with Coronavirus but I would suggest you are at some risk already particularly if you cannot get seen by a competent doctor quickly, so the choice is yours.  Good luck and stay safe too Asully

Pacemaker logging information

by AgentX86 - 2020-08-09 22:04:22

PMs will only log information on events that have been programmed  as triggers.  The onboard memory and functions are limited - much less than a loop recorder.  EPs have to set event triggers to events they're expecting and many cardiac events can't be used to trigger recordings at all.  The EGMs can be read directly, either during an interrogation or by wireless transmission, regarless of settings or events. The bottom line is that it's much better to capture the problem real-time, particularly if the cause is completely unknown.

You really need to see a cardiologist (take two)

by Gotrhythm - 2020-08-10 15:56:10

If there's one thing I've learned in this pacemaker journey I'm on, it's that you have to be ready to advocate for yourself. At any time.

Rereading this post and the one a month ago, I see that you were seen in some cardiologist's office a month ago. The person you saw as a device tech. The fact that you forgot to ask for a printout is immaterial. You can still ask for a copy. And no matter who you might be waiting to see, they can still give it to you.

That leads me to my second thought. Again, you are still on that office's books. Call them and tell them about the change in the tacycardic episodes. Don't wait for them to tell you what they can/can't do about it. Tell them you really think you need to be seen. They won't be impressed that Gemitra, AgentX and I all agree, but our concurrance should give you the confidence to be a little pushy. In a tactful kind kind of way.

Not seeing a cardiologist because you're waiting for an EP/cardiologist appointment, doesn't make sense right now. You have tachycardia. You have a family history of Afib. A plain cardiologist can diagnose Afib, if you are having it. And you can still keep the EP appointment when it rolls around.

About advocating. I'm good at being pushy for other people's sake. Not so good when it's for me. Even if you're super self condfident, and never loose your cool, you really should always have someone with you. A spouse. a friend, an adult family member. Two heads are better than one--a cliche but still true.

A spouse, a friend..

by AgentX86 - 2020-08-10 16:18:38

Good point. My wife and play good cop bad cop when the need arises. It doesn't matter if she pisses off the staff, as long as I'm nice to them. ;-)

Seriously, sometimes it's needed.

Update from device clinic after home transmission:

by asully - 2020-08-17 16:03:16

Sorry if I spell this wrong, it's confirmed that I am having pacemaker mediated weinkebach.  Which doesn't solve the whole problem, I am having SA dysfunction in increased amounts.  I was correct that I was experiencing atrial tachycardia.  We now know that I am tachy at inappropriate times and the weinkebach from the pacemaker dropping beats in the ventricals is making me feel worse, pacer tech is trying to find out if she can raise my upper limit for ventricles at all to help with some of the weinchebach but my heart rate is getting so high I will still be uncomfortable and the weinkebach will still kick in just not as often.  She says unless it becomes more sustained or I really can't stand it wait to see my new cardiologist and he will set me up with an EP for the arythymias, while I wait I guess I try not to trigger it lmao.

Atrial arrhythmia causing tachy, sounds like i need ablation and a biventricular pacemaker

by asully - 2020-09-17 18:28:21

Still waiting on my 4 week home halter monitor, doing it sense my PM records little data unless an event is over 180 bpm even then EP says it doesn't give her the info she needs to asses the arrhythmia.  Was visiting my primary care the other day for totally unrelated events and happend to be mid tachy episode (125bpm resting with lots of dropped and skipped beats). Primary slapped ekg on me recorded a strip and sent it off to my EP who confirmed its atrial tach and said I will need ablation and upgrade to biventricular pacemaker. Meanwhile stuck taking metoprolol for heart rate, but my bp was already in the tank so although it's slowed my rate down for now I still feel like doggie doo.

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