Thought I would give an update as to my personal study of my AF.
For those that have not been following my posts, I consciously decided not to take medications for my AF so I could study the beast by trying alternatives to medications.
One of my earliest thoughts was to set up a citizen science website about AF for gathering data via polls so all members could contribute experiences to compare what works and what does not work.
Although setting up a website to do this was not too difficult, I have decided instead to develop a concept/tool for myself in analyzing my AF that any AF sufferer could also use.
I have Vagal AF (99.5% of the time it occurs when in I am in bed), I use a wearable that I sleep with and it records 17 different heart problems.
The problem with my wearable and perhaps with most/all of these devices is that the data is for a single period and you can't interact with the data eg. add 'what was eaten or drunk that night' or exercise etc. And then look at the data historically to work out triggers etc.
I have about 65 nightly recordings so I have teamed up with a data analyst to crunch the numbers and create a tool to display graphs of recordings over time plus notes (foods eaten etc).
I believe that we as sufferers of AF have hidden answers that the medical profession cannot find as they are not studying us. Sure, they do studies but they are not really for us.
What use is a single 24 Holter monitor recording and a ten minute appointment with a cardiologist to diagnose that you have AF and then be medicated? That is all they can afford to do with us. (Sorry, that was my rant!)
Below is a screenshot of the dashboard. This image shows just AF and only over the last week, it could show any time span along with daily notes.
The 242 episodes of AF are 242 minutes of AF in about 3,300 minutes of sleep over the last week. Some of those 242 minutes are not full minutes of Afib either. The week before was 140 minutes of AF over 7 nights and 3 weeks ago it was only 78 minutes of AF.
You can see the days are also shown, some nights very little AF and others a lot of AF.
I can make this software available to anyone reading this that have a wearable that records events, all that is needed is a Gmail account.
Ideally a few people that are as keen as I am come on board early so we can together work with my data analyst to improve the system.
I have an appointment with a new EP in about 3 weeks time and will be presenting my historical data in a format that is very easy to understand.
Keen to hear peoples thoughts about this new tool.
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OzRob
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I might be searching for the holy grail but I am finding some very interesting things about my AF. I can switch it off with a Valsalva maneuver as long as I catch it in it's early stages. If I ride my exercise bike for 5 minutes before bed it lessens the AF during the night.
I truly believe that if all newly diagnosed AF sufferers (at least Vagal ones) explored before being medicated then they may discover that they can control the AF burden and perhaps find what is actually causing the AF.
The MDs are fully concentrated on the heart, because of the "rogue signals" they can detect and follow with the devices at their disposal. Nobody and never has hit the idea that the heart reacts as it does, because of the signals coming from outside, from the control ganglia in prolonged spine cord. When this signals are gone, the heart reverts to NSR, and easily! So, any playing with the foci at the heart, which generate the rogue signals, is wrong - the cause is somewhere outside the heart. Just as an idea...
interesting you say this about the ganglionic and vagal af. There is a thoracic surgeon in Houston Tx that believes this very thing about AFib and does a surgical mini maze by ablating the nerves to the ganglionic plexi and a full ring around the outside of the heart. Success is 80-95% depending on duration and length of time you have had AF. He also clips the LAA negating the need for blood thinners. This isn’t an advertisement I just found it fascinating that you have come to the same conclusion. Cheers!
I did not know the details about this procedure, but very interesting to hear it! Preventing the signals to come to the heart is a good idea, but still better idea would be to prevent the control ganglia to generate rogue signals. And, believe me, it is possible. Strangely, this influence is not electric, but mechanic - many people have reported to be able to influence the arrhythmia via breathing techniques, via some exercise etc.
In general, the people have the problem to understand the process of ageing. It is considered to be "normal" to loose clear sight when ageing, to have poorer body temperature regulation etc., but it is not considered to be normal to have poorer heart control. And it is quite normal... The ganglia which function perfectly well during decades, start having problems processing the signals in a correct way, or have problems processing extremely high or low signals. On the other hand, the heart, as the organ which executes the commands, has more and more problems to fulfill it's tasks. So we end up in arrhythmia.
Have read what you have written in your profile. Would be interested in how your problems with the parasites resolved. If you want it that way, you may send me a Personal Message...
If we hadn't spent so much on other necessities and the Christmas season I'd have ordered the Wellue monitor by now as - from the China source your suggest - it's now only £168 (+VAT no doubt). The Kardia, in comparison, without the tenner a month simply fails to show anything worthwhile unless AF is occurring while testing.
It seems to me the Wellue AI device is the way to go.
If you buy a monitor you are welcome to use the data displaying system I have set up.
I am just working on the front end of the software for easy data entry, so when you wake up you just enter your recorded data via a simple web based entry form.
Here is another screenshot of the last few nights showing other data including AF.
That's fascinating. I have never been able to correlate any food intake with any arrhythmia, only activity or body position. So, bending, stretching, sitting, laying down, eating can all bring on mild tachycardia and ectopics, and occasionally AF (was AFl till my ablation). I feel that this is because my diaphragm is easily pushed against my heart thanks to anatomy / distension / constipation. A cardiologist noticed this when I first had chest pain and a strange clicking sound from my chest and told me he thought it would remain benign unless I was unlucky. Well over the years I had what were put down to occasional panic attacks, but now it seems they might have been AF/AFl (not that I wasn't anxious!).
I'm thinking of selling my Kardia 6L as they fetch a decent price second hand, then buying the Wellhue from the Chinese supplier (price will be plus 17.5% VAT though). It will have to be in the new year owing to an expensive end of 2022!
It is a known fact that body position can start an AF episode. Sleeping on the left side will start my AF.
As the vagal nerve is connected to most of your organs it makes sense that putting pressure on the nerve can start AF.
We are all looking for triggers by avoiding foods and drinks etc trying to guess what is causing our AF. And up till now it has been an educated guess without real data.
An idea I have is that we can now start testing what we think brings on AF for confirmation. So instead of avoiding foods or positions we can poke the bear so to speak to try and bring AF on while we track and record everything.
My understanding (from reading and my cardiologist / EP) is that pressure on the vagus would cause severe bradycardia followed by swings of severe tachycardia - and not AF except in unusual cases.
Since using the monitor I think their is a direct correlation between PAC's(Premature Atrial Contractions), PVC's (Premature Ventricular Contractions) and AF. Sanjay Gupta from York Cardiology talks about this in one of his videos.
We are told that everybody experiences Pac's and Pvc's, and they are thought to be harmless.
The below screenshot from my AF tracking shows the night of the 6th of December, it was not a good night. 2,600 Pac's and 1,240 PVC's. I will be taking this data to my new EP in 3 weeks time asking what his thoughts are.
As you can see, my AF was a very low burden and not even noticeable. But I thought I had AF most of the night as the palpitations were constant.
This morning I have registered the domain name trackaf.com, once I have a few more months of data I plan to have this website setup to allow people to download my tracking software and to join this project where we can share tracking information. I can tailor the software to suit any monitor on the market, as long as it provides basic data after wearing overnight or during the day.
Hopefully we can get a few EP's interested in consulting with us to help us better understand things.
That sounds fun! I wonder how many I get at times. It's certainly vastly better than the Kardia can manage. I think they will soon need to up their game to use a modern idiom as £10.00 a month for very little useful information is far too much.
The past few days have been especially heavy ectopic-wise. No AF, though, or if any just fleeting. The feeling for me is much the same AF or ectopics and I suspect it's the mild tachycardia and anxiety that account for much of this, although chest discomfort isn't from that. I've stopped paying for Kardia's "advanced determinations" so all it reports these days is either NSR or "Inconclusive" these days caused, I suspect, by the "Wide QRS" which I tend to get regularly thanks to LBBB.
I look forward to buying the Wellue monitor in the new year. How long did yours take to arrive?
I started with PAF more than 10 years ago and kept a detailed record of when it occurred, previous diet and notable events immediately prior.
However I soon discovered that medical doctors (at least in the UK) are not really interested in finding out "Why" something is happening, they are trained to focus on fixing it as soon as possible. Talking to others, not on this forum, it seems this is what most of the public want from a health service.
I'm sure the information that may be gathered by you and any volunteers may be of interest to anyone studying the causes of AF, but I don't think that is likely to an MD
I have the Wellue AI patch, which I reviewed in detail on Amazon uk though I bought it direct from the manufacturer at a significantly lower price. My main frustration is the data presentation. I have several printouts from commercial 24H Holters, and the difference is huge. The problem is that the data is there: what is missing is the reporting. So this project is very interesting.
My smartphone is a small one and not on the list, so I never bought a Kardia, though it seems to be the industry standard. Kardia is very fussy about the smartphones it works with + I have the additional problem that I just do not get on with Smartphones: the screen is too small, typing is painful because I often miss the correct key, etc.
I am also frustrated with Wellue. I have written to them. I wish there was a 24 hour Holter machine out there for around 500 pounds that did a better job. Perhaps I could then share the cost of it with some friends. The nearest alternative I can find is over 1000 pounds, plus VAT (ridiculous) and I have no guarantee the information is that much better.
I am glad I bought the Wellue. I especially like it that I can get 24 hours of readings. I would love to see some expert comment on them. Go to their website and download a sample report. If you pm me I would happily send you some real world reports.
See my review on Amazon for more of what I think. I especially miss the graphical presentation of heart rate/time and AF/time. For instance, I feel my heart as more regular at certain times than others, but cannot prove it. Seeing this on a time graph would make it obvious. The data is there, Wellue lets itself down in the data presentation.
There are also basic numbers like the QRS interval which are not calculated, even though they are when I use the Pulsebit machine with the Checkme-Pro software from another machine.
I have just bought the Wellue device but I haven’t got it up and running yet. For the technologically challenged like me it is a bit of an issue if you don’t have an IMac or a Windows 10/11 pc. I use an iPad and the Wellue device apparently requires a direct connection using a USB to the computer to download the recorded data so it seems I’m going to need some sort of adapter. I’ll get there eventually.
I bought the device direct from Wellue , cost just over £200 with a Black Friday discount. It took 10 days to arrive.
It requires a standard USB connection. The software runs on Windows 7. But, the loading sometimes takes a long time. And sometimes when I exit the program it stays in memory. I once caught it chugging away in the background using over 10% CPU memory! I routinely run Process Explorer (sysinternals) so it is easy enough to kill if it stubbornly stays in memory. You run the software, insert the patch connected to a cord inserted in a USB slot, and download the data to your computer. You can then view the long ecg to see if it has genuinely recorded something. Then you click on Analyse, and it uploads to servers somewhere. You get a pdf report AND the program provides time stamped links to the abnormalities it suspects.
I am looking for Ventricular Tachycardia. I think I get a lot of false positives. We need some experts to evaluate the likely quality of the interpretation. But rather false positives than false negatives.
I don't have that problem with mine. What I do that may avoid problems is I have the software application closed while I connect the device to my computer. Then I fire up the program.
Anyway, this entire post is to explore data tracking of devices, be it the Wellue or any other device that can record events over time rather than a device that just takes a reading manually. (I can modify the data input to suit other devices quite easily)
Tracking of data will help us monitor our AF better and hopefully be an extra tool for us.
One day these devices may offer historical graphs and charts and allow user input such as foods eaten etc. Until then we will have this new tool.
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