New wearable that tracks blood flow to the brain

[wabi-sabi]

That is just an example of something I did NOT do, could not find a trigger for the crash. But I could have made it so much worse if I had relied on that my memory or mental analysis to tell me that there was no 'cause.'

Maybe that's my issue. I keep trying to figure out the cause of the crash so I can avoid it in future. I can very clearly see a pattern in my data, I just can't figure out what's driving it. But if I can't find the cause, how do I avoid the crash?

How does the garmin body battery work?

 

[Jyoti]

But if I can't find the cause, how do I avoid the crash?

Million dollar question!

I guess my goal is to minimize my crashes. To nip them in the bud. Or at worst, to not exacerbate them.

How does the garmin body battery work?

There is a really long thread on pacing and HRV, but this one is shorter and more to the point: https://forums.phoenixrising.me/thr...h-to-reduce-stress-charge-body-battery.88358/

 

[Murph]

I keep trying to figure out the cause of the crash so I can avoid it in future. I can very clearly see a pattern in my data, I just can't figure out what's driving it. But if I can't find the cause, how do I avoid the crash?

THis is such a good point. I wanted to link to this thread:

https://forums.phoenixrising.me/thr...tion-is-hard-to-get-right.90234/#post-2436304

It basically says that latency (the delay between trigger and symptoms) and half-life (how long symptoms last) both make self-experimentation really hard.

Hitting your thumb with a hammer has zero latency and low half life: the symptoms come on immediately and the pain lasts for a short amount of time. So you can retest four times in one afternoon and get really confident on the link between cause and effect.

So many problems in me/cfs are different to this. PEM is one, it comes on with a lag, so I'd guess most of us went through a period of malcomprehension and denial before we made the link: exercise really is bad for us.

And research is telling us that PEM lasts for many days. So it can lower our defences to other things that we do later. That long half-life of symptoms creates random variation. Sometimes we can handle a bit of exercise, other times we can't, and it may be to do with the long-lasting effect of a big effort we did earlier in the week or even a few weeks ago. It makes this disease really confusing.

We can't necessarily expect to solve it with self-experiments and memory. Our n=1 experiments seem simple but they are actually confounded. That's why wearables and objective measures are a good idea.

 

[wabi-sabi]

And research is telling us that PEM lasts for many days. So it can lower our defences to other things that we do later. That long half-life of symptoms creates random variation. Sometimes we can handle a bit of exercise, other times we can't, and it may be to do with the long-lasting effect of a big effort we did earlier in the week or even a few weeks ago. It makes this disease really confusing.

This is it exactly. I get so frustrated and confused and then throw in the towel and ignore everything... so I crash.

The visible has been helping me because it shows me my PEM is lasting much longer than the time I feel bad. It's just so hard to be patient and stay in bed until it passes. But it's the latency that is the hardest for me to grasp. If I overdo on day 1, I feel something a few hours later and more on day 2. But the idea that I do something on day 1 and a symptom shows up on day 3?! I just have such trouble with this. And of course, I haven't really gotten over what I did last week...

it comes on with a lag, so I'd guess most of us went through a period of malcomprehension and denial before we made the link: exercise really is bad for us.

I did this with yoga class when I first got sick. Went to class day 1, felt so much better. Went on day 2, didn't feel better. Went on day 3, felt worse. I kept thinking I was doing yoga wrong...when actually I had done yoga for years and this never happened when I was healthy.

That's why wearables and objective measures are a good idea.

I am so grateful the long COVID people are tech savvy and creating this stuff!

 

[Mary]

This is so fascinating to hear! When my HRV is 49 I am very, very sick. When I'm doing well it's in the 60s. I wondered if these values were just me or applied to other people or not as well.

Yeah, 49 is high for me. I was very surprised to see that this morning. I haven't tested my HRV in over a year so it will be interesting to see what my average is now!

 

[Hufsamor]

This is so fascinating to hear! When my HRV is 49 I am very, very sick. When I'm doing well it's in the 60s. I wondered if these values were just me or applied to other people or not as well.

In the visible app, my best reading is 52.
Perfect for me.
Both 60 and 49 is a strong warning to take it easy.
I’ve been at 72 and I’ve been at 39.
Rather devastated at both occasions

 

[hapl808]

So many problems in me/cfs are different to this. PEM is one, it comes on with a lag, so I'd guess most of us went through a period of malcomprehension and denial before we made the link: exercise really is bad for us.

A stupidly long period, as I kept trying to exercise my way out of it, with friends and doctors cheering me on.

 

[Mary]

My HRV was 61 this morning! And I do feel better than yesterday, when it was 49 - it's so much higher than over a year ago. So glad I got reminded of the visible app!

 

[Hufsamor]

My HRV was 61 this morning! And I do feel better than yesterday, when it was 49 - it's so much higher than over a year ago. So glad I got reminded of the visible app!

I’m very sorry to tell you this unless you know it already,
but sudden spikes in the HRV is the body trying to put the brakes on.
I don’t remember the reason why you feel better, but if you try to act as if you have a good day on such a day, you’ll most likely crash hard.

HRV rising over a longer period is a good thing.
HRV rising high from one day to another is a bad sign.

Here’s an example:
I was in PEM in the beginning of this period.
HRV was a bit low.
HRV was perfect on Thursday, but I knew I should have stayed at home.
But I had an appointment I had to keep. Red circle.
My worst PEM usually hits on day three.


Here’s what happened.
HRV is spiking. At Friday and Saturday it was difficult to calm down, I had lot of nervous energy but knew it was from doing too much, so I did my best to rest.
Day 3, Sunday, I was feeling really ill, dosing on and off through the day. Blue circle
But I have really overdone it this time.
When the body sees I’m finally resting, HRV falls again, downhill the next three days. Finally it tries to stabilise. Green circle
(I don’t usually have PEM for a week, but too much have been happening for too long)

 

[Jyoti]

One of the good things Mary will get when she has uploaded data to Visible for four consecutive days is an estimation of her HRV and HR 'range.' And clearly, yours went out of your range, @Hufsamor, when it spiked. You were on a bit of a roller coaster!

My HRV was coincidentally 61 this morning as well. And it was up, but 'within my range.' I really like that Visible acknowledges that an HRV too high (or out of your personal range) is as perilous as one that is too low. I was very annoyed with another HRV monitoring app that would tell me I was doing better the higher it went. By the time my entire body was entirely out of whack, it would proclaim that I was a stellar athlete in tip top shape.

Any news from STAT @Mary?

 

[Mary]

I really like that Visible acknowledges that an HRV too high (or out of your personal range) is as perilous as one that is too low.

@Hufsamor , @Jyoti - I didn't know that one's HRV could go too high, or that going high too fast could be a problem! There's so much to learn, but am really glad to hear that Visible helps a lot with this!

By the time my entire body was entirely out of whack, it would proclaim that I was a stellar athlete in tip top shape

Oh my goodness!!! What can you do but laugh?

Any news from STAT

No, sorry! But I'll post when/if I do -

 

[wabi-sabi]

Seeing other people's data is so helpful! I've noticed too that a sharp rise in HRV is a bad sign, but I still useually feel worse on a low day. I was 51 this morning after a night of no sleep, so I'm feeling pretty awful.

 

[wabi-sabi]

I just ordered one of those garmin things. Hoping the body battery will help. I'll let everybody know!

 

[RyeRyeBread]

That's really cool :O
I want one lol
but sounds expensive, and isn't available for android yet (according to the FAQ section on their website)

 

[Hufsamor]

That's really cool :O
I want one lol
but sounds expensive, and isn't available for android yet (according to the FAQ section on their website)

If you can’t afford a garmin, you can get a long way with measuring HRV with the visible app (free)
And to help you through the day you might by a unit that measures pulse only.
I have friends with serious me/cfs who goes by just fine with a pulse unit of some kind.
The price are at a completely different level.

 

[Jyoti]

If you can’t afford a garmin, you can get a long way with measuring HRV with the visible app (free)

I also used to use Welltory, which measures heart rate and gives you a sense of your 'wellness.' It uses your phone camera to measure HRV and you can use it all day long if you desire. It is the app that annoyingly told me I was in tip top shape when my HRV was super high, but if you learn to interpret it yourself and just go for the numbers, it could be helpful. And free too.

And here is the Garmin I have--not too expensive at $89.

 

[wabi-sabi]

I'm trying out the viviosmart 4 now. It seems like a really fun toy and it good at giving me realtime heartrate as well as heartrate over time. I'm slightly worried about the body battery function. It showed that bathing-which reliably crashes me-charged my body battery. Hoping this will shake out with time. Or it may just be meant to be used by healthy people. Sigh...

 

[Jyoti]

It took me a couple of months to get into synch with my Garmin @wabi-sabi. There were functions I had to turn off (like the oxygen saturation reading) because they were either inaccurate or just too scary.

It showed that bathing-which reliably crashes me-charged my body battery

Do you see stress levels drop while bathing? Or the BB arrow going upward? Or both? I wonder what it is measuring that shows this result?

I think I just kept notes and compared the Garmin's results to my subjective experience for a while till I started to see the confluences. I hope that happens for you!

 

[wabi-sabi]

It took me a couple of months to get into synch with my Garmin

Well, maybe I should give it more than 24 hours...

When I first put it on, it read me at 43% charged, which felt was pretty accurate. After I washed, it had gone up to 65% charged, and after I spent the rest of the day in bed too tired to roll over, it read me at 100% charged, since I had been resting. Of course, I was resting because bathing crashes me so badly.

I'm assuming it thinks bathing charged me, since that's hard exercise and it seems to think exercise is good for a person! On the other hand, the visible rated me a 4 this morning, when I would give myself a 2. My guess is that these devices work less well the more severe you are.

The sleep tracker is interesting though. That may be useful. I'm guess I'm just disappointed since I was hoping this would help me pace better. I still can't figure out what it thinks is charging me up or down.

 

[Jyoti]

It definitely will take a few days to track your particular rhythms. I bet it was still working on picking up all your data. Like---Visible won't give you a 'stability score' till you have four days of measurements. So give it some time. It may have been trying to figure out your basic stuff while you were bathing.

As a number of us have observed, some of the most useful feedback we get is the speed with which the BB drops, or the speed with which it goes from a 'down arrow' to an 'up arrow' once you start resting. Some days I can lie down for an hour and it almost immediately starts to charge back up. I don't worry too much about how low it has gone on those days if I have the opportunity to rest.

On other days, I can lie in bed resting, aggressively, and the number keeps dropping. That is usually pretty ominous, no matter where it starts or ends.

Plus.....from talking with others who use it, it seems we need to develop our own relationship to the numbers themselves. Over time I have learned what my flashing light numbers are. As you will, I hope. They are not the same for everyone!

I do have a friend who is just a couple of degrees up from VERY severe--she is mostly bed bound and totally housebound, can feed herself now (after CCI and TC surgeries) but just barely. Shakes and the like. And she has found it really helpful. So obviously I can't speak to how it will serve you, @wabi-sabi, but I do know someone very deeply into severe territory who uses it to good effect.