Paroxysmal AF is, by definition, intermittent and many of us have had unsuccessful encounters with Holter monitors.
I have AF and was suffering intermittent near fainting episodes. After one day and then one week Holter use failed to pick anything up, I was offered an Implanted Loop Recorder. This device is linked to the hospital and programmed to report automatically every day.
Faints continued – infrequent but sometimes bringing blackouts- but months went by until I attended the hospital Clinical Physiology department.
All’s fine ! I was told; but, I said, what does the record show happened at a couple of specific times that I had noted when I had sunk to the ground? Oh! she said, your heart stopped for ten seconds and even longer the second time!
This had obviously been going on all year but no alarm bells had rung…. The ILR had been recording throughout – but failing to report in.
A pacemaker insertion was promptly scheduled for three days later (during which interval I collapsed again and was hospitalised).
The problem was that the ILR non-reporting was not followed up. The protocol dictated that abnormal records were to be followed up but non-reporting raised no alarm signals!!!
Had I not attended the routine ‘hello’ appointment I would probably not been around to tell the tale.
Please remember that as well as high heart rates AF can also bring low heart rates and even cardiac syncope stoppages. Be diligent to ensure that you get the treatment that you need – and that it works!!
BTW eight years on I am now on my second pacemaker 👍😀🥰🤪
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quanglewangle
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Seems odd that you didn't contact them following those events and ask if they had picked them up? I would have been "Heh this just happened, what was it?"
this is what keeps happening to me feints and weird rythms had monitors but doesn’t pick it up. They are refusing to put loop recorder in keep saying it’s my pots. But this feels different and I go grey when in the rhythm and my family say I look like I’m dying until come out of it. My Apple Watch picks up AF at 2% all the time ( I know it’s not a lot ) but they are not interested as so low. But what changed for me is the low heart rate it’s always been high very high now it’s opposite 45-50 and I can not function for the day at all. So glad you finally got sorted and I would complain to health watch or pals that’s awful to miss something as crucial as your hart stopping !! All the best
Sounds to me like it may be worth talking to a doc about reducing it. I really couldn't manage bisoprolol, even at 1.25 mg and had to stop. 40 to 45 bpm at night, 55 in the day, legs like lead, postural hypotension on standing.
Snap! I only took 1.25mg for 3 days before the pharmacist, who showed far more concern than the doctors had, took my pulse and told me to stop. As I have recounted here before, that is how my life was changed in many ways. As the surgery agreed but didn’t come up with anything else, I found a private EP through the AFA and having introduced me to having a smartphone and a Kardia and having seen a reading I took of my heart in AF, he sent a prescription for Flecainide to my surgery for me to take as a PiP. Now that I take it regularly it has virtually put an end to episodes and I have even been able to reduce the first dose of the day.
2% is the normal response when you haven’t any AF episodes. I don’t know why it can’t report it as 0% but it just doesn’t. You don’t have AF according to the watch.
From Apple: Your AFib History will never show as 0%. Instead, it will show as 2% or less.
I have had bradycardia for a while, no meds, no action…then a few weeks of bpm jumping 54-114 and straight back down etc, now low again. I’ve also been having fit/blackout events, the last one being particularly bad. I can’t do anything for a few days after..physically useless. So I ended up at cardiology for syncope (they ruled out epilepsy) .
Diagnosed vasagol syncope. No meds or treatments. Recommendations of how to prevent blackouts.
I presume your nhs. If you can go to a consultation privately with a cardiologist who specialises in syncope (they will also know if it’s something else). What your experiencing does sounds so similar to me.
A salutary tale indeed. Thanks for sharing. So pleased all is well in the long term. Its a lesson to us all that we need to be on top of our own health and medical interventions. Wonder if and when AI takes on more health care we will need to be even more vigilant, guess so. Best wishes.
What a distressing but informative experience. I appreciate your post because I'm realizing with my own experiences about the importance of getting that treatment we need and a reminder that attentiveness is needed. Grateful you're here to inform us.
My yearly remote pacemaker download in September showed "cause for concern". Heart rate spiking to >200 per minute for short periods, I was unaware of this. Medication changed and another download in three months, January. Normal practice is that they will only contact me if there is something to discuss.
I had not heard anything after a week so phoned them. Was told everything working fine.
I asked am I still spiking high heart rates. "Oh let me look" then "yes but they are not lasting as long". So I expected this to be communicated to the GP via clinic letter but I can see a copy of the letter in hospital app and it just states pacemaker working normally. Next appointment in 12 months.
I still have to go the PM clinic despite bedside box. Currently on 18 month intervals (depends on battery use and life) . Next one 6th March so day out to the big smoke for us Devon yokels.
I used to go to the clinic until Covid, then got sent a gadget that I place over the pacemaker, when requested to, this downloads the data and I get next appointment sent, was six monthly originally but now yearly except last one.
They did say I would only be contacted if they need to discuss something and I believed them until now.
Despite phone calls I don’t know when or how often those episodes are happening, I was told both day and night.
No even though I live in North Devon I have always been treated at Royal Brompton in London. When I was first diagnosed there were no EPs in Exeter where I was reffered originally and John Dean, head of cardiology there , sent me to his mate in London.
Sound advice, I had mine fitted almost 10 years ago and due to have battery replacement on the 4th February and it has changed my life for the better with regular checks, pointless having any device if its not working correctly and yes, highly dangerous.
Read with great interest. Was you treated nhs or privately?
My bpm behaviour is almost the same as yours was pre pacemaker. Expeirencing ocassional black outs/fits/near faints which the last one was particularly bad.
Diagnosed with a vasogal syncope recently . Typical that my heart rate was quite reasonable at the appointment..2 days before down to 43bpm all day for no reason and other days from low to 114 and back down to 48 in one drop.
So I finally got a diagnosis but what I don’t get is why I’m not being considered for a pacemaker to regulate 🤔. The most recent syncope fit/blackout was scary but more scary is the chance of my not coming out of it one day.
Could I ask who and how you finally got to be considered for a pacemaker? What other tests did you have before ie echo etc?
I have throughout been cared for by NHS Scotland. BTW at no time have l ever been offered/ subjected to a cardioversion or ablation and watch tales of multiple procedures with incredulity. - but we are all different and l guess need different approaches. BTW l progressed to permanent AF some years ago . Resting HR has always been 60 and while activity has raised it at times, my pacemaker is programmed to take over when HR drops off
My ILR was recording but not reporting so when l challenged heart stoppages of up to 14 seconds showed up and hence the immediate pacemaker
It sounds as though your symptoms mimic mine so someone needs to look at the drop off intervals more closely - it is worrying/ terrifying when you realise that the faints/ blackouts are because your heart has simply stopped!! Before the length of my stoppages was realised l was very cautious about crossing the road…..
Thankyou for your reply. We do sound similar. It’s scary!
Appreciate your post as it enlightened me to this type of AF. I’m going to monitor and will put treatment/pacemaker to nhs if continues, which I suspect it will. X
after the attempt with the holter I had an implant placed and they had an answer in two actually recorded up to 300 events a and my close to 200 at all the procedure for the implant took about an hour. I was awake didn’t feel a thing just a tiny little spot where they make a sleeve and slide it in. They just removed it when I got my pacemaker. They can keep it in up to five years I was told. They took it out the same way it went in with a tiny scar about the size of a pencil eraser. It was a little bit itchy, but no pain.
depending on the type of a you have the odds could be against you having it found with EKG my doctor was not fooling around. He wanted answers ASAP because of that I am doing so good now I have been blessed from day one except for one doctor as far as getting the best care you could possibly imagine.
when it comes to pacemakers, I just heard from someone that made me smile. We have the same unusual pacemaker. He referred to it as the Rolls-Royce of pacemakers and he has had the success that I have had with mine. It is put out by Medtronics in case anyone is discussing this with a doctor right now. Valentine’s Day will be my second anniversary of what I call my new heart. I will tell you for me. It was almost a year to feel completely healed, but it wasn’t bad before that now I feel normal and I am told I can do anything others can do even if they don’t have heart issues.
if you have a doctor that doesn’t approach new ideas, etc. find one that will
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