Breathless on exertion - update

Patient heal thyself

by Theknotguy - 2020-05-06 10:14:25

Sometimes it's Patient Heal Thyself.  It's really frustrating when you find out you know more than the medical people.  But then again, we have to live with our pacemaker every day.  

As far as the Medtronic pacemaker and all the settings have been made.  Total bunk.  I've had mine for six years now.  After six years of getting along fine I got into a situation where I'd walk about 1000 feet and run out of air.  Talked with my EP, did a bunch of tests.  In this case the cardiologist said all I'd need was an adjustment to my pacemaker.  

My regular tech made an adjustment to rate response.  Said I was on level one of three levels - and there were some other things he could do after that.  So that was the first adjustment.  

They brought in a Medtronic's rep.  He put the hockey puck on my pacemaker and brought up some screens I had never seen.  Proceeded to ask me when I had had problems.  Also wanted approximate time of day.  Next thing I knew he brought up some screens of the day I had problems and the approximate hour I had the problem.  We then got into a discussion that was in medical English of which I got only about one word in three.  Something about if we adjust the green gazorp the purple whatchamacallit would adjust the whing-dinger and I'd feel a lot better.  I agreed and he said, "Good, I already made the setting!"  I've felt better ever since.  

Point one being, there are a lot of settings that can be made so you just don't have to rely on one doctor's opinion.  Point two, even though the doctors say all previous info on the pacemaker has been erased at your checkup, that isn't necessarily true.  Point three, the manufacturer's rep may have info both your current tech and your doctor don't have.  

You're in the UK so I don't know what options are available to you.  In the US, we can go to our medical insurance and ask for a review and to be referred to another physician in our area in case the first isn't doing their job adequately.  I don't know what you have that is equivalent to the US.  

Based upon your description I do feel you're having the same problem I had which was my exercise level was more than the current settings of the pacemaker could handle.  I feel, with a couple of tweaks, you could be doing a lot better.  

Hope you find some help soon. 
 

Breathless

by arent80 - 2020-05-06 11:39:16

Happy to hear you're doing somewhat better. I hope it continues. Please keep us updated with any new info or changes. All the best! 

SOB

by AgentX86 - 2020-05-06 12:46:08

if stopping the beta blocker helped, it's pretty clear that the problem isn't the pacemaker or its settings.  Being unwell after could easily be, as you hinted, related to your condition.

I'm not saying that they couldn't do more for you.  Perhaps they could but that doesn't seem to have been your problem, though they should have figured this one out.  This is a common reaction to beta blocers and calcium channel blockers.  It''s so common that a different one should have been tried, right out of the gate - before playing with the PM's settings, even.

As far as medical doctors be electrical engineers...  Nuts.  Do you know how to use your computer?  Are you an electrical engineer?

SOB

by paulh - 2020-05-06 13:35:13

I didn't do anything in the 7 days sans Beta Blocker AgentX86 except sit on my backside, apart from the stroll to the hospital shop which resulted in me becoming breathless. That coffee trip was on the sixth day after stopping the meds, I would assume it was out of my system at that stage. So unfortunately I don't think it's clear cut that Bisop 2.5mg is the problem despite the lack of symptoms on my doggie stroll this morning. There could have been many reasons for not gasping for air first thing; slow walking pace, no caffeine, the blood thinning injections I've received this week, after effects of last nights sleeping tablets, who knows I'm not a medic.

However I failed to mention in my update post that after getting out of bed this morning, showering and going downstairs to make breakfast before dog walk, boom... breathless. Quick recovery though otherwise I wouldn't have gone out.

In all honesty the Beta Blocker seemed to be prescribed as a bit of a knee jerk reaction after I'd been on the treadmill. Oh, you have this symptom at that particular heart rate, we'll fix that with Bisop. Almost like it was straight from the med school text book if you get my drift. Seems a contradictory fix to the PM though when you study what Bisop does.

As for doctors being electrical engineers well that was irony given the condition I have and the explantion given for it. And yes I do know how to use my computer!

.

SOB

by AgentX86 - 2020-05-06 20:27:18

OK, it seems that the cause isn't the beta blocker in this case but it's common.  It's usually fixed by changing to another beta blocker.  When you say it's a knee jerk reaction, perhaps, but this class of drugs is used for a large variety of heart issues, from arrhythmias, to high blood pressure.  Other than SOB or lethargy, these drugs have been shown to be troube free and these problems are easily fixed by switching to another in the class. 

The beta blocker isn't used to "fix the PM", rather to bring the heart rate down.  A pacemaker can't lower the heart rate, only increase it.  If there is an arrhythmia, a beta blocker (or calcium channel blocker) is almost always required. High heart rates are dangerous. The PM will take care of the low rates often caused by beta blockers.  There's little reason not to take them and a lot of reasons to take beta blockers.

When you say "boom", SOBm after doing very little, it sounds like you're having paroxysmal Afib episodes, or similar.  Have you had a Holter monitor for a week or two?  These arrhythmias are something that has to be caught.  Your PM may not record them, though if you have a remote box it'll probably capture it in the act.  If you do, send a transmission when you're having SOB.  It's best to get the record as soon after the start of the SOB episode as possible.

The reason I asked whether you know how to use your computer and whether you were an electrical engineer was to point out that you don't need to know how to design something to know how to use it. I don't know how to design a car but I can drive one.  Pacemakers are no different.  An EE degree would be a superfluous, expensive, addition to an electrophysiologist's education.

SOB

by paulh - 2020-05-07 06:42:57

Sorry AgentX86 it didn't read very well, or rather could be interpreted a couple of ways. I didn't mean the Bisop was used to fix the PM, what I meant was it appears to contradict the actions of the PM. As in the Bisop is designed to lower the rate whereas the PM used to increase it. I'm not taking it for the foreseable anyway (my decision not the docs).

My wife, a nurse, mentioned Holter Monitor just as I was reading your reply so we're going to push for this. I'm in Ireland not the UK and as said in previous posts the 'system' here is a little disjointed at the moment. There are a couple of Electrophysiologist professors in the country and we are trying to get to see them. Problem is the process to do so is a little convoluted to say the least. There is a hierarchy in place that is difficult to navigate around.

We will persist with it though.

Holter Monitor

by Gemita - 2020-05-07 07:08:04

Good idea Paul with the holter monitor.  We shouldn't really need an external monitor with a pacemaker implanted, but a pacemaker (unless you have home monitoring and can trigger an immediate download when you become breathless) may fail to pick up an event depending on what has been set up by your doctors.

With a Holter Monitor, on the other hand, you can press a button when you are having symptoms of breathlessness and they can see immediately if this is related to a slow or fast heart rate or to a rhythm disturbance.  I have in and out arrhythmias and changes in heart rate and blood pressure all the time and these can definitely cause many symptoms including sudden breathlessness.  A holter monitor is the way to go and you could ask for a longer term one up to 10 days just in case your symptoms don't occur within 24 hours.  

Good luck.  I am in the UK and everything is on hold here at the moment and we have to fight for what we need, so hope you win the battle !!  I am also taking Bisoprolol.  Not a bad med for me (controls my high heart rates during arrhythmias) but oh it can really lower my blood pressure and make me feel awful.  It is a real balancing act to keep on top of symptoms without causing other problems

Holter onitor vs. pacemaker recording

by AgentX86 - 2020-05-07 15:10:10

There is some confusion, I think, about just what a pacemaker records.  It'll record an event that it's programmed to detect, how often it occurs, and how long it occurs.  It will not record EKGs of the occurance.  There isn't enough memory.  There are some events that it can't record, as well.  At least mine will not record PVCs unless there is a string of at least five, without a normal beat.  PVCs happen too often in a healthy heart and would fill the PM's limited memory very quickly.  THe PM's recordings are more along the lines of statistical information.  It can take an EKG and transmit it to the remote box but it has to be connected to the mothership to do it (it can't store the EKG for later transmission).

A Holder monitor can record EKGs of the heart for days, or more.  There is usually a button to mark the record when you feel something so it can be zeroed in on to figure out, later, what you're feeling but it's continuously recording.  It only records what's going on.  It doesn't have any "brains" to figure out what is going on.  It's only a recorder.  Analysis has to be done later, after it's turned in.

The third kind of monitor is called an "event monitor".  This sort of monitor will only record an EKG when the button is pushed or an "event" is detected. It doesn't continuously record a continuous EKG trace like the Holter monitor does, however it does have the brains to detect certain sorts of irregularities.  The ones I've had also have the ability to call the mothership if something goes wrong, as well as record the event. 

Of these, the holter monitor is used to look for relatively rare occurances lower risk cardiac irregularities like Afib.  Because an "event monitor" can call the mothership if there is a problem, it is used to look for more critical but still infrequent issues, like Vfib or sinus pauses.  It can also be used for a longer period because there is no memory to fill up.

Another tool that hasn't been discussed here is the "implantable loop recorder".  As the name implies, this is implanted under the skin and can record cardiac events for years.  These are used to look for very rare occurances of these events.  These do record EKGs for further analysis and otherwise act pretty much like a PM without the pacing part.

A pacemaker isn't designed to monitor the heart but records statistics, primarily to allow the optimization of the PM's settings.  It's not really designed to be a diagnostic tool, though the information it records may be used for the purpose.

Because you have a pacemaker doesn't mean that the other devices aren't needed.  Pacemakers really record very little information.