Presyncope post pacemaker

in June my husband had sudden Sinus node dysfunction that led to getting a Medtronic pacemaker implanted immediately. No symptoms before the first episode, healthy 72yo that only recently started taking a statin early in the year. Pacemaker implantation went well, and he was released from the hospital the next day. Almost every day since then, he is still experiencing the same feeling that he is going to pass out but doesn't because the pacemaker kicks in. He experiences some dizziness and it takes his breath away for about 3-5 seconds, in fact by the time he tells me it's happening he's already pulling of it, but it's distressing for him for this to keep happening. He takes his blood pressure right after these episodes, and it's mostly normal. He's pacing around 50%. His Cardiologist/EP thought maybe his blood pressure was dropping too fast and the pacemaker was keeping his beats low at 60bpm. They made an adjustment to have his bpm go to 100 bpm for 2 minutes, that adjustment did nothing, still having the same presyncope symptoms. Now they think it might have something to do with the vasovagal nerve. His doctors are all stumped, and none of them have had any patients present with these symptoms. Hard to believe he's the only guy in the world to have this happening. They have run every conceivable test out there, and his doctors say it's not his heart or an arrythimia. Anyone else out there have anything like this post pacemaker?

7 Comments

Similar feelings

by JaneJ - 2024-08-02 01:52:57

Hi!  So sorry your husband is not feeling well, that's frustrating after having his pacemaker put in.  I've had those type of feelings also.  It's very disconcerting.  I think mine are due to pacs that mess with the pacemaker a bit and cause my heart rate to be a bit erratic and irregular.  I'm sure they probably would have mentioned this if your husband was having a lot of pacs and pvcs. It def could be a vasovagal type of issue also.  I'm honestly not sure how they treat that.  Hope you can figure things out and get him feeling better soon.

Confusing

by Penguin - 2024-08-02 03:40:11

Hi, 

Couple of questions: 

a) Was the pacemaker implanted for sinus node dysfunction and was this the cause of pre-syncopal episodes prior to having the PM implanted? 

b) Does your husband have just one atrial lead (single chamber) or another ventricular lead in place (dual chamber) ?

The sudden 3-5 second breathless episodes sound like PVCs.  They can feel really unpleasant and be a bit of a shock - if momentary.  The pacemaker should record them - most are programmed to do this.  If he keeps a diary of the events (precise times) it may be possible to check what is happening on the device's memory.  Keep a diary for a week or so and record every one of them. Ask the technicians (nicely) to take a look.  JaneJ (above) also describes PACs.  Either might explain his symptoms?

I didn't understand the adjustment that you describe from 60 bpm to 100 bpm.  Was 60 bpm his base rate?  Usually the h/rate races to prevent a faint - fighting against falling BP if you like. The pacemaker doesn't impede this when the base is set to 60 bpm as far as I know, but it can't do anything about falling BP unfortunately - although some pacemakers have some algorithms to catch h/rates which fall rapidly. Perhaps this is the adjustment you are describing? 

There are medications for vasovagal syncope (to increase BP mainly) and practical / self help measures too, but normal BP (mainly) sounds reassuring.  VV Syncope can cause v.low BP indeed (below 90 systolic, below 55 diastolic as a very rough guide - tolerance varies!).   Fear, heat, strong emotions can be major triggers if his vagal nerve is playing up and having a new device can be frightening particularly if things are not going too well.  If these episodes are short lived, perhaps he could try to distract from them if nothing terrible happens e.g. he doesn't collapse or faint.  Sometimes telling yourself that you are safe (and believing it) is reassuring when sensations are unpleasant. 

I too hope that you get to the bottom of this. 

 

 

 

 

Presyncope

by piglet22 - 2024-08-02 07:12:39

I had a run-in with symptoms like your husbands; about 18-months ago, after 18 years of no trouble pacemaker use.

Mine was to treat Complete Heart Block (CHB). Pacemaker settings (Medtronic) DDDR and IPG base rate 60-BPM.

January 2023 the unpleasant sensations started. The head rush, grab something, wait for it to pass. Sometimes it didn't pass and I would come to lying on the floor.

It didn't take long to work out that something was wrong with my heart rhythm. Why was I getting an erratic pulse with pauses, why was my rate 40-BPM? Afterall, I had a pacemaker to cure those very symptoms.

It turned out I was getting a lot of PVCs, specifically Ventricular Ectopy (VE).

My BP dropped, the oximeter was giving abnormal readings.

PVCs are sensed by the PM and get included in the PM decision making i.e. to pulse or not.

The PVC might be strong enough to fool the PM, but not strong enough to do anything useful, hence the pauses felt on my wrist.

As it stands, there isn't a PM setting route to fixing this. They tried upping the IPG rate from 60 to 70 to no avail.

You might be told that the PM is fine, which it is. It's doing the right thing and ignoring what it thinks is a normal signal, but it can't tell PVC from normal. Personally speaking, I can’t see why not.

Eventually, I got to see the pacing consultant who confirmed all this and he upped my Bisoprolol daily dose to 10-mg. This calmed the ectopics and order was restored. I'm now reducing the dose to something I can live with (causing physical fatigue) and have halved it with no effects, so far.

I can fully sympathise with the alarm it causes.

Of course, it may not be ectopics, but it is a common complication.

As you probably know, conditions like heart block can progressively get worse over the years and I am now 100% PM dependent.

The others - Jane and Penguin - have mentioned Vasovagal events and this is what my GP suspected when I first sought help in 2005.

Unfortunately, he didn't order any tests and suggested I rubbed my neck to stimulate the vagus nerve. Well, that did nothing and was inconvenient. Only the full suite of tests months later revealed what was going on.

I'm still pretty wary and keep a close eye on BP, oxygen sats and rhythm. As Penguin suggests, keeping records can be helpful, possibly essential.

Not a good start to his PM experience, but persevere with investigations through your pacing team and it should be resolved.

Presyncope

by Rch - 2024-08-02 18:10:41

Hi

Do these presyncopal episodes happen while in bed, sitting, standing or change in positions of the head?

Also, if they happen just once or twice a day, unlikely to be PVCs which you will feel more frequently with a slight thud in the chest! While not approved with PM, I generally use my Kardia mobile to get some insight into what's going on during these episodes. You can see ventricular pacing spikes which look different from PVCs, you can see pauses or bursts of tachycardias etc! You won't see PM spikes. It's not perfect but you have some data to start a conversation. You can also download and send to your Cardiologist. Providers generally do not like patients using the phone apps, but you have to do what you have to do if their management is not helping you, Your husband can't be feeling the way he feels for ever! If your Cardiologist feels that it's not cardiac, you could ask him for a referral to a Neurologist or another specialty. Hope you wil get some answers soon!

 

Ectopy

by piglet22 - 2024-08-03 07:07:52

Ectopy episodes can happen at any time of the day and the number of episodes where you can be directly affected to the point of feeling unwell can vary.

I had plenty of time to observe what was going on and when episodes might happen.

Initially, I was told by one pacing consultant that I had VE (Ventricular Ectopy) and a significant PVC burden by another. I didn't get anything like chest thumps.

There are patients here who report tens of thousands PVCs a day, but may not suffer any symptoms like full loss of consciousness.

There are no hard and fast rules. You might have a PVC burden of just hundreds or low thousands a day, but if just a few stop the pacemaker from pulsing, you can rapidly feel the effects.

I couldn't pin down a trigger, but there was one common factor. Relaxation was almost always involved, I never had episodes while I was active. I could sit down, watch the TV for an hour and feel the pauses in heart rhythm starting. Same thing at night lying down.

I had to judge the time to stand up with a view to grabbing the door frame. It didn't always work. Sometimes at night, I dreaded falling asleep with low blood pressure, 90/50, erratic pulse as low as 33-BPM, often 40-BPM, despite an IPG base rate of 70, raised from 60

A high dose of Bisoprolol brought things under control and the last virtual clinic in July 2024 showed no recorded PVCs. I’m now reducing the dose.

What you can't do is dismiss PVCs.

One of my relatives was suffering from falls and long blackouts up to 20-seconds.

For a long time he was under the care of a neurologist who got nowhere with it. Eventually it was handed over to cardiology and the problem was rapidly diagnosed, he received a pacemaker and has been free of symptoms ever since.

Of course you may need a multidisciplinary approach and my relatives experience demonstrates the dangers of focussing on a single issue.

Thuds & PVCs

by Penguin - 2024-08-03 11:08:08

BeckyLou, Rch is quite right about a thud in the chest with PVCs.  I don't feel PVCs as a rule, but those I have felt have felt like a pause followed by a thud. 

(That's not to discredit anyone else' experiences of them btw - perhaps experiences vary?) 

It would be good to hear back from you.

 

Base rate with PACs and PVCs

by JaneJ - 2024-08-04 00:57:50

Hi Piglet,

I was curious to know more about the base rate of the pacemaker and ectopics.  So if your lower rate is set at 70, (like mine), if their are pacs it can drop lower than 70?  I'm surprised they can't have the pacemaker read it as a pac by programming it?   I've had a huge uptake with pacs and several times of coming close to passing out, once while driving.  Is this because the ventricular rate drops low?  I'm a bit confused by this....It was also so frustrating because I would tell my ep doc and clinic about it and send over remote transmissions and nothing would ever come up.  They finally after some inststence from me that something is not right, agreed to a  holter, which showed a PAC burden of 3%, which doesn't seem that high, but def causes me to feel pretty bad.  Thanks for insight, this is very helpful info to know about.

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