DIDN'T KNOW IF THIS WAS A SUCCESS STORY OR A CHECK UP STORY!

Heartily

by piglet22 - 2024-11-15 05:41:50

"pacemaker is working fine" is something you will hear a lot 

You might not be feeling fine.

Did you see the cardiologist or was it the electrophysiologist (technician)?

You shouldn't be getting those symptoms and you should be getting an explanation.

I've heard it many times, even when I was falling over or blacking out with low blood pressure and low perceived heart rate.

Pacemakers aren't perfect and about once a second they are making decisions if you had a real pulse from your natural pacemaker or does your implanted pacemaker need to fill the gap. If it's borderline, that's where it can go wrong.

Not everyone is in agreement on the subject, but I can tell you absolutely that other problems like ectopic beats can give you the sensation of missing beats and the physical symptoms like full blown loss of consciousness.

A definition of ventricular ectopy is two ventricular contractions not separated by an atrial contraction.

When eventually I saw the consultant about a, he said no PM manufacturer had a device or software that could deal with problems like ectopy.

It was treated with a high dose of Bisoprolol and hasn't reappeared.

I haven't got a clue what a referred reaction is. That needs explaining too.

Of course the device is working fine, but it's decision making, the algorithms, aren't perfectly tuned.

It's a sad fact that here in the UK you can come up against the problem of not enough time or resources to do the sort of diagnostics and observations that fine tuning requires. I was told by the consultant that I was going to get a Holter monitor. Did it happen? Of course not.

Some patients will have a PM lifetime with absolutely no problems, others won't.

If you get the opportunity, have a look at your device full manual or ask and maybe won't get, a full device interrogation report. The sheer size of it will give you an idea of the complexity of a perfectly tailored setup. Sometimes it's a case of that will do.

If you need any money information, let me know.

Good luck

Edit, again 

More not money. S*dding phone

Not Holster but Holter. Wretched phone

Thanks for the comment Piglet22

by heartily - 2024-11-15 07:27:29

So, no money then?!!

I feel fine most of the time, and yes, they said they were ectopic beats. It was the technician. I have an appointment with the private cardiologist on 17th Dec who will be doing every test known to man and will run everything past him too. If I need more than 5mg of Bisoprolol daily, then so be it.

Apparently I am pacing 100% ventricularly, and only 0.6% on the top bit. Don't know if this has any bearing on anything. Unfortunately I'm remedial with ANYTHING mechanical, electrical or long technical manuals, so won't be capable of comprehending the details. If however, you want to know anything about 18th century English or Irish drinking glasses, I'm the girl to ask!

Yay

by Lavender - 2024-11-15 08:17:33

It's going to take time given your level of hyper awareness and anxiety (been there), but eventually you'll learn to let your guard down and live without constant fear and stress. You'll trust. Glad you had a good report! I love to read about 18th century England ala Charles Dickens. 😉

New Pacemaker

by Good Dog - 2024-11-15 08:28:01

I have had my PM for 38 years and here is my take on your issues. I had the very same issues and concerns in the beginning, so I understand your concern. It is very normal to have the anxiety with the minor issues you experienced with a new PM. In the beginning, ectopic beats can scare the hell out of you. Thing is; they are totally harmless and will likely subside in time. Same is usually true with the flutter and stabbing in your chest. It takes time for your heart to settle in to being paced. Even more so with you and what you are feeling. It is perfectly normal to be hypervigilent in the beginning with every twitch and pinch that you feel. My situation is very similar to yours in that I am paced 99% in the ventricle and about 50% atrial paced. Perhaps the biggest difference is the medication. I take none. Pacemakers are safe and effective. They are also bullet-proof and very, very rarely ever malfunction. My point is that what you are feeling is pretty normal with regard to being paced during the first few months. Your PM may need some fine tuning (adjustments), but you also need to have a better level of confidence that it is doing its job safely which should come in time. The Bisoprolo is another matter. Beta blockers can have some troubling side-effects, so I see them as a necessary evil if you need them. I would be hesitant to increase your dose unless it is absolutely necessary; simply for that reason. However, if the Doc says you need it, then there is no choice on your part. You do what you gotta do! Most importantly, give yourself a chance to adjust to being paced. You will find what we here already know. Pacemakers will give you the ability to live a long and normal life. Pacemakers "DO NOT" disable you in any way. They "DO" enable you to live a normal life. You simply need to gain some trust in it. I am confident that you will work through these issues and come to that realization in due time.

Please keep us posted with your progress....

I wish you the very best!

Sincerely,

Dave

Dave

by piglet22 - 2024-11-15 09:26:22

With respect, ectopics aren't harmless.

They might be for some, but not for others. When PVCs directly lead to over-sensing and subsequent under-pacing, the results can be catastrophic.

When I blacked out as a direct result of PVCs - consultant diagnosis was VE (Ventricular Ectopy) - luckily, it was just the floor I hit. It could have been at the top of the stairs or crossing the road. The pre-syncope symptoms are equally unpleasant. At times, I was scared to fall asleep.

I'm 100% A/100% V paced, so quite sensitive to minor mistimings. Maybe with a lower pacing level, you can get away with ectopics and wonder what the fuss is about.

Bisoprolol taken at higher doses, 10-mg daily in my case, they can quickly and effectively calm the ectopics and possibly avoid more intrusive measures. I had some exercise fatigue and have gradually reduced the dose to 5-mg daily, split into a small portion at night and a larger portion in the morning.

heartily

by piglet22 - 2024-11-15 09:52:59

You don't have to read the manual or the reports. Or even understand them.

It's a case of feel the weight.

The point is that there are a whole host of settings and switches that can be applied to each device. They come out of the box with default settings, a bit like your home broadband router.

For a lot of the time, the defaults work, and in the later review, some degree of tuning can be done, but fine tuning can take a lot of time. It's a case of up a bit, down a bit. The key to fine tuning, as in twin carburettors, is to tweak and test. Remember how many turns to the right it was.

Some things like temperature controllers can auto-tune, but there are far more variables in a cardiac device. As computing power increases in future devices, this sort of fine tuning will be device driven and not rely on precious clinic time.

As for the money, when I've finished off paying the tax to Ms Reeves to play with and warmed up with a bowl of soup, there might be some left over to spend.

For our non-UK friends, the newly elected Labour party, your Democrats, have gone about savaging the most vulnerable people, the retired, the housebound etc., by clawing back a benefit that people on the state provided pension received, called the Winter Fuel Allowance. It was worth £200 a year (55 pence a day) to go towards keeping warm.

Not a good start.

Gratitude for all your responses

by heartily - 2024-11-15 14:14:42

In no order of merit... There are very different viewpoints here, and I suppose we can only talk about our own experiences. Fortunately, my symptoms have never been so bad that I have actually collapsed - I just feel unwell and "not right".

I was assured just now from the private Cardiologist's secretary ( and yes, I know she's not a doctor!) that the 2 x technicians that dealt with me were trained by my Cardiologist and having read my beating history on the computer, they felt I was not in any imminent danger.

I have asked that my appointment is brought forward if possible so every other test can be done on me in case there's something else going on not PM related and probably won't be sanguine until then.

I will ask about taking more beta blockers, but I think it's them that are making me feel so knackered. Does anyone know if there are other beta blockers other than Bisoprolol that don't make you feel tired? Does Bisoprolol make anyone else tired?

Bisoprolol

by Good Dog - 2024-11-15 14:32:43

I have no personal knowledge, but my wife has tried many different Beta Blockers and she said that they all made her very tired. She was most recently taking 5mg of Bisoprolol and was having a very difficult time much like you are experiencing. So she was eventually able to successfully reduce the dose to 2.5 mg and it made a huge difference. She is tolerating that very well. However, if you cannot reduce the dose, this is not much help. I am sorry that I cannot be more helpful. 

Sincerely,

Dave

Thanks Dave

by heartily - 2024-11-15 17:27:04

Initially I was prescribed 2.5mg of Bisoprolol but collapsed when it wasn't enough so the dose was doubled which seems to work. Once my heart has healed, I might be able to have the dose reduced but crtainly not now!

I'm sure the Cardiologist will know what to do!