Ectopic beats with DDDR Pacemaker

Hello

I'm on my second PM for complete heat block.

I had no trouble for 18-years but now the old symptoms of skipping one out of three beats are back.

I'm alright if I'm active but as soon as I relax the missing beats start. Lightheaded and BP low.

Scary in the middle of the night.

The irregularities started and I had a run of several days. It was picked up on radial wrist pulse, chest sensations, oximeter and BP monitor.

I contacted the cardiac physiologists and they dismissed the readings I had, blaming the oximeter and BP monitor algorithms.

These same people allowed my first PM to fail, and I had to call the ambulance. The PM was replaced the next day.

For information, the battery had gone so low it changed the PM mode settings. The symptoms apart from feeling very apprehensive were my pectoral muscles and one arm twitching in time with the pulse.

A senior paramedic said a PM couldn’t do that. So much for that advice.

This was despite 3-monthly checkups. The battery was nearly 11 years old.

I've had to get the GP to chase up the cardio people.

My pulse has been getting down to 31 BPM despite an IPG minimum rate of 60 BPM.

To make matters worse, locally they’ve gone from 6-monthly full face to face checkups, to annual, now none.

I have a bedside monitor but it's no substitute for a full ECG and it shows no problems despite periods of up to 2 or 3 hours of very low heart rates.

I have next to no confidence in the physiologists who are the gatekeepers of the cardiology department and I have no confidence in the bedside monitor or "virtual device clinics"


9 Comments

No trust

by Lavender - 2023-02-20 13:53:47

Your relationship with this cardio team has zero trust. How about getting a work up from a new group? 
 

No checkups on your pacemaker??  Sounds strange. Get to another practice for a second opinion. 

GP

by Penguin - 2023-02-20 16:57:19

Hi, 

In your situation with concerns that you feel are not being listened to, and low heart rates which you feel are not being picked up despite home monitoring, you could consider obtaining holter monitor testing or similar. If your pacing team won't / can't organise this you could ask for a referral from your GP to one of the private clinics who offer this.  A Kardia mobile app would be another alternative. 

I see from your post and bio that your previous device got to EOL and this wasn't spotted. Are you concerned that this device is heading towards EOL and cutting down to a minimum maintenance rate and that your previous worrying experience is happening again?

Re: Appointments. I acknowledge how difficult it is to get appointments in the UK at the moment.  It may be that remote monitoring is being used as an alternative for regular appointments in some Trusts who have significant wait times. You could ask the Trust to explain their policy regarding pacemaker check ups and how they intend to manage your care.  This might not change how your care is managed whilst the NHS is under pressure, but at least it would provide you with a point of reference against which to measure the care that you receive.

You are also entitled to select the Trust that deals with your pacing care and to ask for a transfer of care to an alternative hospital if you are unhappy.  

I hope you can get some clarity and resolve the issues. 

 

 

 

 

Old symptoms

by piglet22 - 2023-02-21 06:37:30

Penguin and Lavender.

Thanks for comments.

I don't think there is any possibility of being referred anywhere else in reasonable travelling distance.

Years ago, the local clinics were friendly. Then the frequency of the visits was cut down. Then they closed the local clinic citing how difficult it was for the "girls" to lug the equipment around. Then they said that the clinics were "challenging" for patients and staff and that two members of staff had to be present at clinics. In a hospital?

The final blow was the closure of the clinics altogether.

The bedside monitor arrived by UPS with absolutely no word from the hospital. Nothing on what it was supposed to do, how to use it, apart from the how-to plug-in instructions.

I still don't know if it monitors me all the time and when I do ask, the information is conflicting.

Penguin.

I had a Holter monitor originally. It didn't pick up anything and the battery failed halfway through the 5-days.

The symptoms I'm getting now are outside normal working hours. I had another episode last night. BPM down to 39 and BP down to 100/50. Walking up a steep hill during the day only raised my BPM to 67.

Possible reasons

by Penguin - 2023-02-21 07:08:43

Hi again, 

Sorry to hear about the holter monitor for 5 days.  How long ago was this and did they offer to repeat the test if it failed? I'd raise that with your GP.

Also, things change! If this all happened a while ago and you've only been seen virtually since, your situation now may be quite different. Perhaps put these points forward?  Do you have a consultant?  Ask your GP to write to the consultant and to put your points forward. List the points out before you see your GP perhaps. 

 Re: a private test - if you can't change clinic, how do you feel about this possibility?  

Re: Two technicians - this is pretty standard as you will know. Closing your clinic altogether is another matter. Virtual appointments were understandable during Covid, but things are getting back to normal now. I'd refer you back to my previous suggestions re: the management of your care. It sounds as if you are dissatisfied. 

I am struggling to understand how your bpm falls below the base rate on the PM.  I've felt 'strange' sensations and had lowish BP recorded myself at home and yet my bpm when I check has never fallen below my base rate because the PM picks this up.   That's one to discuss with the clinic I'm afraid as it's beyond my understanding. 

DDDR <- suggests that you have rate reponse switched on.

Walking up a hill - as I'm sure you know may be helped by tuning up rate response. A treadmill test (with a slope applied to the walking machine) might help determine how your PM responds when walking up hill and more importantly - how you feel when it kicks in and whether or not it is adequate for you.

I'd urge you to try your GP again with some of these suggestions and excuse me if I'm stating things you already know. You've had two PMs afterall and probably know as much as I do, if not a whole lot more regarding your own conditions. 

Please take care. 

 

Old symptoms

by piglet22 - 2023-02-21 08:44:20

Thanks Penguin

Ref the bpm.

I went for 18 years with nothing below the minimum setting of 60 bpm. What's happening now is new and I don't understand why I get 31 bpm other than the fact that the PM isn't working correctly.

I'm giving all the people involved a chance to do the right thing, but I won't let it go on.

I have access to my medical record and I'm adding notes about all this.

Excuse the pun, but I think the heart has gone out of the physiology service.

When they turn round and dismiss sound evidence that somethings wrong and don't offer a 20-minute checkup, then things are bad.

I walk 4-miles every day and have clocked up over half a million steps this year. I do the same hill every day. Before PM, no amount of exercise raised my bpm. I'm not so fit that a climb up a hill only raises my bpm from 60 to 67.

This is a re-run of 18 years ago when it took months before the GP began to take notice and do a referral.

His answer before that was to suggest rubbing my vagus nerve in my neck. The same man recommended cider vinegar and honey for bronchitis.

Not good

by Penguin - 2023-02-21 12:08:36

Yes, I agree that your predicament sounds pretty awful. The bpm readings don't sound right to me either and I'd like you to know that at least you've been heard on this forum.

 Unfortunately though I'm none the wiser than you and can't offer any suggestions or explanations. Your concerns need to be heard by the professionals and yes, a 20 min pacing check would no doubt help a great deal. 

Technology / home monitoring is fine and has it's place but I find it a bit like dealing with a call centre in some far away place when I have a customer service issue that needs a solution / friendly face / call out in the UK.  The human element is missing and I recognise the frustration of somebody looking at stats, histograms and %s and telling me that I'm perfectly fine on paper when 'in person' I'm not fine at all! 

Hang in there and keep plugging away for what you need. Most of us know when something's not right. 

 

No confidence?

by Gotrhythm - 2023-02-21 15:08:29

Trust me, I know how frustrating and just plain scary it is to find your well-being is in the hands of people you can't depend on.  You're in trouble. You know it. And they won't listen or even try to determine what is wrong. Been there, my friend.

Health deliverary is different in the UK, but if you have lost confidence in your providers, the same advice I'd give anyone in the US still applies. Go somewhere else.

You say you doubt if there's a chance of getting referred anywhere else in reasonable traveling distance. That implies that you do think there's a chance to be referred somewhere further away.

Well, it's really this simple. You can't change a bureauracy. The only thing you can change is how you respond. I suggest you start with becoming willing to travel an "un-reasonable" distance. Even if it's harder, figure out a way to get to a medical center where you can hope for better, more knowledgeable treatment.

Remember, if you don't get the medical treatment you need, no one in the bureaucracy will feel one flick of pain. The person who will suffer is you. To use sports language, you're the one with skin in the game. You're the one who will pay the price of their negligence. You're the one who will live (or not) with the consequences.

Thank you

by piglet22 - 2023-02-22 06:13:23

Thank you Gotrhythm

The UK NHS is in poor state of affairs and it impacts on everything clinical.

Nurses, doctors, ambulance drivers all on strike because of government mis-management of the health system.

People dying at home because they can't get help. Seroiusly ill people being taken to A&E in the back of vans strapped to planks of wood.

A pacemaker playing up is hardly going to be a priority matter.

I lost my lady 16 months ago thanks to an overworked primary care system Covid, lockdowns etc., and not getting an early diagnosis of secondary breast cancer.

That's what we are up against.

Wish I knew a better answer

by Gotrhythm - 2023-02-22 11:13:53

So sorry for your loss, Piglet. Losing someone is hard enough even when you can comfort yourself that everything possible was done.

When you believe there was neglect, whether systmemic or through accidental oversight, it's doubly hard.

Wish I knew a better answer to your health system quandaries. But don't downgrade the importance on your own needs just because others have more pressing concerns. Who knows? Maybe you could make some clerk's day by offering them an easy problem that they can make go away just by sending you to someone else!

 

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