Pulse rate monitor

Hello

I've been on a PM for 18-years with no trouble until recently.

Ectopics have started and are interferring with normal life.

The problem is that all I get from the physiologists is "PM is working fine, 70 bpm"

What I feel at my wrist pulse is quite different and is more like 30 to 40 bpm, blood pressure is low and I don't feel right.

I've got to find a way of bringing this to their attention and break the hurdle of "PM is fine".

The blood pressure monitor tells the truth from what it feels which is the arterial pulse, not the ECG.

I've been looking into this and there are research articles on using pressure sensors at the wrist but there aren't common and those that there are are expensive and still need an arm cuff to calibrate.

What I'm proposing to do is get hold of an electronic pressure sensor and see what happens. The research ones have a small cavity that fits over the point where you feel your pulse and the sensor fits into the cavity. If your pulse can move your finger, it will do something to a pressure sensor. If it has a useful output, I can link it up to an oscilloscope and see and record the pulses.

Why don't I just use the BP monitor? Because I want to see what I can feel and a wrist device is going to be easier than a whole BP monitor.

If it works, it will need a small device called a microcontroller to do all the sums etc.

In theory, it could cost about £20 in parts and a bit of programming. I've got an old BP monitor which I can hack for parts including the pressure sensor.

Small microcontrollers are so powerful now and come with memory and communications like Bluetooth, WiFi, Zigbee. Anyone who uses "smart" devices like switches and light bulbs will have a microcontroller already. Your PM uses one too.

The expensive part is the oscilloscope but I already have that, but it could be straightforward to display on a phone.

Any thoughts?


12 Comments

My thoughts

by Lavender - 2023-04-20 14:29:15

You're so tech savvy that you lost me along the way. I've read your posts-obviously you're going to figure this out if anyone can! 

Less Effort

by Penguin - 2023-04-20 14:59:47

Hi Piglet, 

You're obviously an intelligent man with a good grasp of how to replicate some of the technical equipment used by medics.  I'm very impressed at your technical know-how and don't doubt that you could rise to the challenge you have set yourself. However, and I mean this with good intent, I think that you need to address the central issue here - e.g. that trust has broken down and you don't feel like you are being listened to or helped. 

Wouldn't it be less effort to transfer your care to another hospital? 

 

Pulse rate monitor

by AgentX86 - 2023-04-20 22:52:12

I think you have a pretty steep curve ahead of you but if you're in it for the challenge, go for it.

Often the issue can only be detected in the carotid and femoral arteries so monitoring the the radial artery wouldn't help detect the arrhythmia, other than a yeah/nay test.  If you only want to detect the rate, forgetting the ectopic itself, it'll be easy to monitor.  Just use a recording pulse-ox meter.  There are tons of them.  I don't know what sort of online buying you have access to but Amazon has tons of them. One example:

<https://www.amazon.com/Wellue-Monitor-Continuously-Tracking-Software/dp/B08VW3VQKW/ref=sr_1_3_sspa>

 

A complex study?

by Gemita - 2023-04-21 04:06:07

Hello Piglet, I have been aware of your technical ability for some time and feel this is a brilliant idea to gain a complete overhaul of how your pacemaker is set up and functioning.  I have always felt with an arrhythmia we have to take the evidence to our doctors to be believed and this is exactly what you have set out to try to achieve.

My main question is, would you ultimately be able to explain in simple terms to a technician or to a doctor, just how your little device would assess heart rate (and rhythm?) and compare it with your Pacemaker device for accuracy?  In other words, can you prove in the presence of an arrhythmia that your device is accurately picking up all your heart beats, whether they be weak, strong, pausing, intermittently fast/intermittently slow, irregularly irregular heart beats, interspersed occasionally with regular heart beats?  A pacemaker device for example could be set up to record an ECG as backup evidence of the arrhythmia present, the heart rate and duration of such an episode.  What backup evidence could your device provide to confirm the accuracy of any recording?

As we know a pacemaker cannot correct a sudden fall in blood pressure and this seems to be as important a cause for your symptoms (arrhythmias) as a sudden fall in your heart rate and I would look to your current medication and other factors for some answers too.  As we get older we are not so efficient at eliminating our meds.  Kidney and liver function for example will decline with age and disease and you could be slowly building up medication in your blood stream triggering many unwanted symptoms, including electrolyte imbalances leading to arrhythmias.

To conclude, you say you have had a pacemaker for 18 years without problems until more recently, so something has clearly changed, wouldn’t you say?  Could this be due to:-

. A change in pacemaker settings or lead function?

. A change in your Lifestyle?  

. A change in your heart or other health condition?

. An emotional set back like the loss of a loved one? 

. A change or a build up in your medication which can clearly affect how your pacemaker functions?  

All these factors have to be taken into account too Piglet for your brilliant study to be meaningful.  Please keep us updated with your progress. 

Thank you all

by piglet22 - 2023-04-21 10:25:42

Morning and thank you for the interest, compliments and comments.

Firstly, I'm not clever.

What I can do reasonably well is solve problems and I spent 25 years in a regional (UK) water company earning a living doing just that. I and a small team did the jobs that nobody else wanted to do, they called us the cavalry.

From the moment I found that attaching a bulb to an Eveready battery and got light, I was hooked. I tinker, take apart, find how things work.

Professionally, I adapted things like instruments to fit particular needs. It was a mixture of nuts and bolts through to coding and programming. I liked the satisfaction of making things work when others gave up. It's called stubbornness. If you can’t get what you need off the shelf, you modify and adapt or make it yourself.

What I'm doing now is born out of frustration.  Headline today "Nearly five million patients each month in England wait more than a fortnight for a GP appointment"

These days, I still tinker. I suppose sometimes you have to throw the rules out and as they say think outside the box. At least I won't have to work out why a very large very expensive rocket turned into scrap metal.

Going back to pulses, what I feel is different to what "they" tell me is going on. I want to see it in real time. The oximeter shows the pauses but says it's 70 bpm. The BP monitor is the closest to picking up real heart rates, but it struggles because it's trying to pick up those little oscillations in an artery and the rhythm doesn't fit the algorithm, What I want is something between the two methods.

Apparently, the Chinese in traditional medicine place a good deal of diagnosis by just reading the radial pulse.

They use three finger tips and feel three points on the radial artery.

These are called Cun: Distal or Front (at wrist crease); Guan: Middle (just medial to radial styloid process) and Chi: Proximal or Rear. Their electronic pulse meters have three wrist straps.

To answer the queries and suggestions from everyone.

Lavender

You're too kind, I don't deserve it.

Penguin

Yes, it's a challenge, but that's what I like. Something has got to change at the regional (RSCH) cardiology department, but it's all bound up in what looks like an NHS in meltdown. I would have to go to London or somewhere else and honestly I don't need all the extra effort. There is that old expression about giving enough rope. For now, I don't like it, but I'll go along with it. Right now, I'm looking at over 8 weeks for a 15 minute phone call.

Marybird

I'm with you on the dodgy readings from the BP monitor. It just can't cope with ectopics which is why I think a simpler approach is needed. My oximeter shows the pauses but still reports 70bpm. Again, it's trying to do two different jobs, rate and saturation.

Actually, my proposal and bits and pieces are exactly what are in the BP monitors, the sensors the microcontroller etc. Sure, if you asked the GP how it worked, you would probably get a blank look. You might get something about arteries oscillating between systolic and diastolic, but the method of working in the monitor would be a mystery.

It would be interesting to see more psychologists trained in electronics as that is what it's all about.

Don't forget, that what we take for granted now, these little devices that keep us going, were probably put together by a bunch of enthusiastic tinkerers with far less resources than today, Probably some medics with ideas and a bit of electronics knowhow and some electronics guys with a bit of medical knowledge. And of course, don't forget the very first pioneer patients. I bet there were mistakes made and painful ones at that.

As for validation, this will be does it work or not.

Our BP monitors are clinically calibrated, the better ones, but how often do they get checked? It would be really complicated to check them and at best, you could only check if the pressure reading was right, the oscillations would be hard.

I used to set up sensors in remote locations under attack from the environment and vandals.

There I had to use validation just to check if it was still there. Often I had to add another six sensors to validate that the one of interest was actually doing the job. A water quality monitor is no good if it has no water to monitor.

AgentX86

If I can get this SpaceX Heavy Lift off the ground, I'll be well happy.

Pretty early on I'll know if it's going to work, If the basics work, I can refine it. I'm optimistic.

I had a look at the recording oximeter in the link. It's quite a lot of money, £180 if it didn't do the job. For now, a bit of cobbling together might do what I want.

I don't want to see what's causing the problem, but I do want to see the perceived effects.

There are some YouTube things on homemade ECGs using cobbled together stuff like PP3 batteries, audio amplifiers and cheap ECG modules. In your country you have maker companies like Sparkfun and Adafruit who do loads of interesting stuff.

Gemita

You will know as I do what a state our NHS is in and I think we have to do as much as we can to help ourselves.

I don't think I will have a problem presenting data to the right person, i.e. someone who is prepared to listen and doesn't keep coming up with "everything is OK"

The physiologists have a job to do but they won’t stray outside their brief. It's worse still when it's a 15 or 20 minute phone call as it is with RSCH. If I was a consultant, I might be interested to see how my work was holding up even if it was 18 years ago. To not see one in all that time smacks of I've done my bit, over to you.

Yes, I'm with you on all the medication stuff. The change from decades of Atenolol to Bisoprolol was only down to me initially stop taking it then contacting the GP. It was another bit of tinkering.

Your could it be due to suggestions all fit and as you know, it has been a stressful 18 months. It takes its toll even by piling on all the extra chores you have to do. Dealing with terminal cancer in the middle of Covid was as stressful as it gets.

Pulse, extra beats.

by Selwyn - 2023-04-22 07:43:05

A pulse is either regular, irregular or irregulary irregular ( ie. no pattern).

Extra beats ( that is felt as an irregular pulse) can be physiological ( ie. normal activity) or pathological ( ie. due to disease). The ECG shows a QRS complex ie. the large upward swings relating to heart beats which are transmitted via the arteries as a pulse beat. 

If you want to know what is happening ( ie. physiological or pathology), you need an ECG ( EKG in the USA is the same). If the beats are intermittent on a day to day, hourly basis, I think a KARDIA monitor is handy - not only can you see the QRS complexes, you can download these as a .pdf file and hand a copy to your cardiologist.  Seeing is indeed belief! 

The peak of the QRS ( ie. the R wave) is the top of the saw tooth pattern. You can use a ruler and measure the distance to see if your heart beats are regular, or just count the squares up on the graph paper of the ECG.

Pulse pressure and heart beat may not be the same, depending on the state of your arteries,heart, and circulation. I have certainly seen plenty of live people without a radial ( wrist) pulse, or a femoral ( groin) pulse. It is even possible to have a clogged up carotid ( neck) artery and no pulse there and still be without symptoms. 

Getting their attention

by Gotrhythm - 2023-04-22 13:53:52

I'm not smart enough to have an opinion of how to rig something that would prove anything to a medical mind, since, in my experience they only put their faith in their own equipment. But I've been where you are and know the frustration well.

I well remember the occasion when everytime I tried to describe my symptoms, the PA and nurse would answer, "Your pacemaker is working fine."

I'd say, "Yes, I know but..."

And like a Greek chorus, they would reply, "Your pacemaker is working fine."

Finally I raised up my hands, and cried-out to Heaven, "I believe! I BELIEVE! HALLELUJAH! I BELIEVE!"

Taking their shocked silence and open mouths to indicate that I finally had their attention, I then said, "I believe with all my heart that my pacemaker is working the way it is programmed to. But what I want to know is, is it possible that my heart doing something that the pacemaker program can't deal with?"

Funny, I can't remember now which one of the curve balls my wonky heart was throwing at the time. But once I got them to focus on my heart, they did conduct the needed tests (with equipment designed for the purpose) and it was resolved.

I agree

by Penguin - 2023-04-22 17:52:13

I agree with GotRhythm that doctors will not trust your equipment and will defer to the results from their own.  Having said that I hope you succeed and are listened to.

 

SpaceX Heavy Lift

by AgentX86 - 2023-04-22 19:23:22

Oopsie! I hate it when that happens.

Selwyn

by piglet22 - 2023-04-23 08:39:22

Thanks for that information.

I don't have a clue what I have actually going on other than it's ectopy. whether it's PAC, PVC or anything else, I've no idea. Other than "It's heart block", the medics haven't elaborated and at the time, I wasn't aware of anything else to be able to ask them.

Wikipedia has some good information under Ectopic beats with links to PACs and PVCs.

Both cause pauses which you feel and are either compensatory or non-compensatory.

It's the pauses that are giving me trouble.

Gotrhythm

by piglet22 - 2023-04-23 08:46:24

Thanks for that interesting information.

Your experiences exactly mirror my own. It's as though stock questions merit stock answers.

"I don't feel well" - "The pacemaker is fine" Repeat.

You certainly must have made their day, but eventually you got there.

Penguin

by piglet22 - 2023-04-24 07:52:32

The trouble is that medics aren't scientists and vice versa. Not always the case and just as well.

I'm a postgrad scientist and work with data. In science, no data, no-one listens.

Of course the medics only trust their own stuff, they have to work to a protocol.

When they refuse to listen to your concerns, then trust in them breaks down and it's they who need to change. Sometimes, you the patient will have better information on your condition than they do.

It's why there are now organisations like Patient Knows Best who are accepted by many of the NHS trusts in conjunction with My Health and Care Record.

Over the years, my confidence and satisfaction in hospital care has reduced considerably and I would rate it at about 3 out of 10. GPs rate better at about 6 out of 10.

In one 5-day stay in hospital, I got more real care from the Polish auxiliaries, cleaners etc., than from the clinical carers. After breaking my pelvis and being unable to walk, I refused to leave when they expected me to make my own way home. I couldn't put one foot in front of the other so getting into a taxi or bus was impossible. The whole experience was awful.

The move from clinic appointments to "Virtual Device Clinics" hasn't helped.

In the whole time I've had the pacemaker since 2005, I can safely say that contact with consultants has been sparce. It can be spelled out in four sentences.

"I've got a diagnosis" You have complete heart block", "you need a pacemaker". 11 years later when it was replaced, I got "We don't see you much"

As for what the problem was in the first place, what had caused it, what the outlook was, absolutely nothing.

Even if it only ends up as personal satisfaction, I will press on to try and get better data on how I actually experience ectopy. If they listen, good, if they don't then nothing lost except for maybe another rating.

You know you're wired when...

You run like the bionic man.

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