New wearable that tracks blood flow to the brain

[wabi-sabi]

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.

Yes, I will try to be patient. I was hoping for instant miracle, you know!

I've been using visible since last fall. Most of the time it's pretty accurate, but it does overestimate me sometimes. I suspect it does that most in the early days of a crash when I am still full of the push adrenaline. It's always tempting to push more when I'm already crashing and wired.

Do you wear yours all the time? I was so excited the first day I kept poking it about every 5 minutes. That's probably not going to help me rest, but maybe that will wear off in a bit too.

 

[Jyoti]

I was so excited the first day I kept poking it about every 5 minutes

Chagrined. I do too. At least on bad days.....I admit to being a little embarrassed by how compulsively I track my BB. I KNOW I am having a very good day when I forget to check it for a few hours, though.

Keep us posted on how it goes!

 

[hapl808]

I check the Garmin regularly, but it's pretty helpful to get a sense of my HR and Stress level. It took me one week before the Battery registered at all - I thought it was broken initially. Now I find it's pretty accurate. Unfortunately I haven't found much that helps my Battery or Stress levels, but at least I get confirmation of what days are good or bad.

 

[Hufsamor]

@wabi-sabi
Im memeber of a Facebook group for people with me/cfs and those wearables.
It’s kind of a rule not to look at your body battery until after at least 3 weeks use.

For now, you can follow your heart rate, as they are precise numbers.
It’s helpful to see if your heartbeats go very high.
Like, if you are doing something, and your heartrate goes over 110 or 120, you need to stop what you’re doing and rest until your heart calms down.
And in the morning I take a look at the resting heart rate (or what it’s called in English) if it’s higher or lower than usual, it’s a warning to take it easy.

But I understand that you are looking at your heartbeats already, so you might know this 🤗

In the beginning, I gave up on the body battery all together. I needed a long times use, and to read a lot about how to read the numbers, before it would help me at all. But now I use it all the time.

I don’t remember if I mentioned this before, but there are an English Facebook group for this as well? If you are on Facebook you might want to be a member and read and learn those three weeks until you can use you own body battery?

 

[Hufsamor]

By the way, how was your heartrate during the bath?

 

[Jyoti]

For anyone with interest in the STAT device: https://solvecfs.org/event/the-futu...-ear-device-that-measures-blood-flow-to-head/

Webinar with the CEO of the company that developed the STAT device with a link to register for it.

 

[wabi-sabi]

Well, the garmin is starting to prove a bit useful. It's been so hot lately and it's been wearing on me. Looking at the garmin, my pulse has increased with the feelings of overheating. Normally my resting pulse is in the 50s to 60s, but with being to hot, it's been creeping up into the 70s. It's nice to have some numbers to go with the feeling. On the days when I drink normalyte overnight I am definitely perkier and with a lower pulse rate in the morning.

It's also interesting to see where the visible and the garmin agree or disagree on my energy levels.

 

[Donsboig]

Here's a video from the founder of the STAT device on Solve ME/CFS youtube channel. Quite interesting. Some basic points (if brain fog will allow...):

• They hypothesise that cerebral blood flow is a more accurate / useful biomarker (than heart rate and blood pressure) for ME/CFS, POTS, and Long Covid.
• It is hard to measure outside of a clinical setting, so that is what their device attempts to do.
• It measures the blood flow in the external carotid artery which passes through your earlobe. It uses this as a proxy for internal carotid artery flow, which supplies the brain.
• They have some clinical data showing that it gives accurate measurements, and perhaps correlates with symptoms more accurately than heart rate or blood pressure.
• They seem to have collaborated with some big-name research groups which is promising.
• They hope to be producing the device in the first half of next year. You can sign up for their email newsletter here: https://www.stat-health.com/

 

[Strawberry]

Just the picture there at the start of the video makes me curious. When I’m laying down at night I can hear my blood squeezing through my veins behind my ears. I definitely need to follow this!

Edit to add I got the same error message as Mary. I tried two emails…

 

[almost]

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.

I purchased my Garmin just for the HRV and sleep monitoring, and I don't think I've had HRV over 55. I'm usually cruising through the 40s, last night was a 39. I rarely move away from the cellar of the 'balanced' HRV range. I can only imagine how good I might feel if I ever hit 60 (near top of my 'balanced'). I just don't know how to raise it. I guess I'm going to have to start taking some notes, although I've been trying hard to keep a consistent evening routine to eliminate variables before bedtime.

I'm assuming Visible and Stat require a smartphone. If so, those will not work for me as I don't have one. It would be nice if they would connect to a PC to analyze the data.

 

[maple]

I haven’t found an obvious correlation between any of the metrics and how I am feeling

 

[wabi-sabi]

I just don't know how to raise it.

I'm not sure I do either. Mine isn't always under my control. I guess that sums up the disease in general, right?

I think I get better data by combining the garmin (mine needs the smartphone) with the visible. They don't always agree and I wish I knew why. The garmin helps because I can monitor my body battery over the course of the day and try to keep it from tanking too much. The visible gives me something that's meant for illness, as well as broader overview. It's like being able to see the forest and the trees.

The only thing that really charges my body battery is sleep. Time and resting make the Visible HRV go up as well, but much more slowly. I guess I already knew I felt better when I was able to sleep, but it's nice to see data to that effect.

 

[Ski_again]

This looks intriguing, so I added myself to the invite list. Their website makes no attempt to describe how it actually works, i.e. what it actually measures, but the YouTube presentation clarifies how it measures blood flow.

No need to decide about the $50/month pricing until sometime down the road. My symptoms possibly related to cerebral blood flow are mild, but I'd be curious to see if it's useful for identifying triggers.

Hopefully we're getting closer to our fantastic biometric future.

 

[godlovesatrier]

just an fyi visible i working now and the cost has come down a lot. Monthly total cost is £64 first month £14 thereafter.

I'll probably go for it, I am a bit sick of spending money on things that don't help me much though.

 

[godlovesatrier]

Well I took the plunge, not that expensive relaly not sure why I hestitated!

First hrv reading was 39 but I am in a bad dysautonomia flare with sound sensitivity moderate brainfog, weakness and exhaustion from a head cold which has flared post covid symptoms. Probably woke the covid up!

I'll report back when I have a proper baseline - a new toy that may be useful!

Mary Stat seem to be doing shipments now but it is damn pricey, will you try it? If anyone does can you post if it works, it sounds like the perfect wearable to measure our issues.

 

[godlovesatrier]

So if hrv was higher say 60 and stable that would indicate available energy that's not likely to cause a crash @Hufsamor ? Or just a stable period of energy indicating the body isn't struggling? This is kind of how I felt pre covid to be honest. I have had a few periods post covid like this though, my most recent good day was Monday

 

[Hufsamor]

@godlovesatrier
A stable HRV is a sign of a stable period, indicating the body isn’t struggling.
It seems every person have their own “natural “ HRV, so the HRV numbers are less important. If your natural HRV turns out be 40, 50 or 60 is less important. We are mostly looking for stability.

If HRV are slowly rising over a long period of time, it indicates your body is doing better. But from day to day and from week to week, we are mostly looking for stability

I hope you’ll post about visible and how it works for you?
The price isn’t bad at all?

 

[godlovesatrier]

Awesome. Thanks!

Yep visible will prob take 3 weeks to arrived I'm using the camera sensor for now. Although I'm hoping it won't take that long as the device is from polar.

Price £14.99 a month. Very affordable for me. Polar device is a one off £50 RRP £80. So decent discount.

I suspect that we will eventually in say five or ten years be better off with the next generation of wearables like sat. But for now this seems good. My fiance sent me a link she saw it advertised on Instagram

 

[Strawberry]

I’m interested to hear how it goes. I’ve given up on my garmin telling me that I feel like junk and should rest. When I darned well know but have to pay the bills……..

 

[godlovesatrier]

Hrv was 69 today. Suspect this is much more like my normal.

But I've got a cold and my heart isn't happy at all. Normally it'd be fine. Thank you covid!! 😡😡

My wearable has been shipped should be here in a few days.