Every time I’m ill my heart rate is high the majority of the time I’m ill. This happens when I’m sleeping (like today) or when I’m just sitting or lying down
I’ve been waiting for a 24hr ECG since early this year to investigate possible POTS.
Does anyone else have this happen to them?
These are the pics from today so far, I’ve been asleep the whole time! Only just woke up to the sound of all the exertion notifications!
I know we won't know for certain yet, but what do you guys think?
I've been testing out the overnight data for a couple of weeks and, despite being excited to try it, I just disabled it today.
I don't think it's compatible with my sleeping habits. One of the biggest reasons why is that I always have to get up in the night to use the bathroom 😅 This makes my overall score higher because, of course, my heart rate goes up massively (POTS.)
Another reason is, when are you supposed to charge your armband? I most often put mine on charge overnight and sacrifice one night of sleep data, but it feels important not to if your stability score is relying on it.
Today, I woke up feeling better than I have in over a week. My heart rate stayed in my activity zone in the ten steps it takes to get to the bathroom and I didn't feel like I was about to pass out on the pot. I came back to bed to do my overnight score and it put me at a 2, which felt wrong. I went to my sleep area to check if my heart did anything crazy in the night and it said it was unavailable.
So yeah, I'm going back to morning stability scores tomorrow 😅
Ps. I also don't understand rating the accuracy of your overnight score. I don't have the exact phrasing, but it says something along the lines of 'this is not based on how you feel'? What is it based on then?
If you’ve been wishing that Visible gave more guidance and helped you identify your own triggers and recovery signs, today is your lucky day!
- Cost: Free
- Platform: iOS & Android
- Created by: Newcastle University and NIHR Newcastle Biomedical Research Centre (BRC), Newcastle upon Tyne, UK
- It automatically sets your daily points based on your personal metrics
- Works with most wearables & apps you already use
- Shows you your unique biometrics and how they positively and negatively affect your fatigue
- Has a simple mode for if you don’t want to see as much detail
- Shows your PEM risk for each day (this is what Visible calls stability score - this makes so much more sense)
- There’s a day planner where you can estimate how much time and effort it took, and it learns how much energy it takes to do them based on your data
- Uses steps as an added pacing - which accurately flagged me as being at high risk for PEM, even though I only had a low pace points total
- Free!
Bonus: They are actively developing a features that are more accurate to users who are bed bound
- It’s a lot of information, but the simple mode helps a lot
- I haven’t found that its heart rate alerts are as prominent as I need them to be, so I sometimes mis them and realize that I’ve used up all my points - but this may be a user issue
Has anyone else tried it? Right now it’s working great for me alongside Visible, but I could definitely see myself switching over to it full time.
Have you tried it? What did you think?
Diagnoses i’m using visible for: ME & POTS mostly. But I do have the trifecta & co’s.
After some frustrations with visible because I manage so many chronic illnesses - I’m giving it another go by also using tachymon at the same time. & I find this combo great. & the adhesive idea has been a game changer!!
I got a wrong reading via visible a month ago that took me to the ER cuz I thought I was dying for no reason from wearing it on my wrist. It’s true, it’s ALOT more accurate on the upper arm. The numbers differ at times but I think the time reading sync differs because eventually tachy mon and visible catch up to one another.
I found visible hard to track POTS with when I started treatment for POTS cuz my medication lowers my heart rate significantly now, and I was using my hr to figure out my exertion and pace points. So now that my hr is relatively normal on meds, I didn’t think I needed it anymore.
Then I realized I didn’t know how to pace for my mecfs since becoming moderate in May. Especially because heart rate isn’t a good measuring tool for mecfs. And I was no longer in exertion 24/7 both from being mostly house and bed bound and also not moving much for my hr to spike. But I’ve decided to give it a go again.
I’m using tachymon still because my hr will still jump & drop by 30+ but just stay within a relatively normal range. But the jumps still cause POTS symptoms and since visible doesn’t catch the spikes as exertion as much anymore tachymon helps for that. Also my hr will spike by 30+ constantly (but stay below 120bpm) while laying down & sleeping when I’m in PEM or approaching PEM and tachy mon helps for that. And because of my meds (Ivabradine), I have the comfort of knowing I’ll be alerted if I drop too low. Because now I can be bradychardic from the meds too. Or if I forget to take my meds or take a second dose by accident (has happened because of ADD lol, I’ll know through tachymon). Visible more so for highs if I miss a dose by accident or just get too symptomatic.
As for mecfs, it’s not perfect but I’m figuring it out. I wish we had a way to measure and warn for PEM. Ive had to adjust my pace settings and reset my data now that I’m on Ivabradine. I’ll still spike a very high hr at times , if I’m not wearing a monitor to alert me & remind me (again… very bad ADD lol). However I’m also trying to not live in fear of my symptoms and heart rate & get too hyper fixated on tracking out if fear but just view these devices as tools and reminders to ease & maybe hopeful recovery. I’m also on treatment for mecfs so as things change I have to keep adjusting how I use visible. It can be frustrating thinking you have something figured out and then you have to restart.
Anyways sharing a bit of my journey and also a thank u for the adhesive rec!!! Way less stimulating! More accurate. Also better for showers and baths without worrying about build up & skin rot from getting the band wet. I feel more at peace. Now I’m just trying to figure out mecfs with visible. I find its easier to monitor POTS than ME with visible.
Ps. peep that 101 while standing 🥹 (this is not an ad for ivabradine hahah)
I am considering getting visible as I have Sjögren's and the fatigue can be quite debilitating. Most of my family seem skeptical that I really am as sick as I feel and it makes me wonder if my fatigue is just laziness. Like I know logically that it isn't but there's nothing tangible to understand how I feel. Visible seems like it could provide some proof for myself that it's not all in my head. However I don't know if my heart rate changes drastically enough for the armband to pick up any patterns. Not sure if I should buy the armband and subscription if for some people it just does not provide any useful information.
Also if anyone uses it for Sjögren's I'd be super interested to know if you'd recommend it.
Hey Guys, I had to get a replacement band and by my first impression it seems better so far. It looks like the sensor has been updated as when comparing it my old faulty band, visually it looks different. The wristband isn't as uncomfortable and itchy anymore as it has a soft backing. There's no firmware update though. Has anyone noticed these updates at all? Hoping for the best at this point
I'm not sure, how long this new feature has been around, but I only just noticed that it is now possible to recalculate the heartrate zones with most recent data. I think this is quite helpful, if you have had visible for a while and experienced a baseline shift. So, I just wanted to share it, in case anyone else finds it helpful.
The option can be found under "profile" > "pacing settings" > "heartrate zones" > "update based on latest data".
Anyone else have a wiped calendar? (It's everything since when I started using the band in April, but I only attached June for reference). I'm guessing the developers are messing with something, maybe as they revamp the color scheme or whatever. I can still see my data in the trends at least...
Ofc I messaged support only to realize they won't be available till Monday. By then, hopefully everything is restored and maybe I'm just overreacting. But you can imagine my WTF moment.
Also, my band didn't get my sleep data and I can't help but wonder if that coincides with the developers doing something over night.
I've seen a bunch of people asking for alternative bands, but are there any alternative bands with different materials? I've only been wearing it a few weeks and my skin is sensitive, so I'm not sure if it's the band being wet or not but my wrist is covered in what look like scratches/cuts/cracks? I'm guessing either it being damp against my skin or the texture is destroying my skin. My wrist hurts way to much to wear it at this point and it's bright red almost bleeding.
I have been on ivabradine for about 6 months now, and I got the visible band 3ish months ago. I didn’t find the insights particularly useful… I often went way over my pace budget and would find that I didn’t feel any worse but then I would have days where I barely used any points and I would be really struggling.
I’m not sure if it’s due to my medication and making the heart rate readings less useful or maybe delayed flares from overexertion and I wasn’t able to connect the two events easily?
For context, I have POTS and ME/CFS.
Hi, I use the wristband. I originally bought it because I would be able to wear it on my upper arm. Didn't turn out to be the case. I stuck with it until I started having extreme pain in both of my wrists, which turned out to be carpal tunnel. I now have wrist braces because of it. I am looking for an alternative to the actual band, not the sensor. Something that is softer and not textured. I have the skin-drawing condition, dermatographia. So certain pressure and movement will trigger a histamine reaction. Any suggestions?
I underestimated how exciting a bts concert was gonna be. somehow managed to almost quadruple my goal even though i'm on a beta blocker. had to call off today cause i can barely even stand up 💔 worth it though 🙏
Hi everyone! It’s my first month using visible, and one of the things I’m finding interesting is how my stability score is affected by my cycle. I thought my ovulation phase felt ROUGH but I’m averaging a 3 during menstrual, ovulation, and luteal. Follicular is my best phase with an average stability of 3.67! I’m a bit sad that most of my cycle is a struggle fest, but I can see this helping with planning bigger events for each month. I also find it interesting because all the common advice says ovulation should be when you’re thriving, but that’s when I start tanking.
I’m curious if anyone else has observed correlations like this? Doesn’t have to be cycle related, just if you’ve found patterns that help you plan in anyway. There is not a lot of planning that can be done with chronic illness, so finding a nugget like this gives me hope! Will be interesting to see if my next cycle is the same.
the only widget is your pace points which is still great but i cant have that on my lock screen either... not sure if the devs are ever on here but just though id put this out there
After two years of asking Visible for a better trends section of the app, I'm giving up and I'm going to hire a freelancer to make one for me. I've probably spent 20 hours on and off trying to work with my CSV data. I tried the template that was shared on the Facebook group. I don't have the skills or software and I don't have enough available concentration to learn what I need.
Has anyone hired a freelancer to make them a data dashboard for their Visible data? I'm asking in case there's a freelancer out there who has done this before and I can go to them.
If I hire someone, I'll share how it went.
(I'm not able to answer questions about the Trends tab and what it needs, nor about what I have already tried.)
I have POTS and for the past year have used my apple watch to track my heartrate (using the tachymon app). I wanted to try visible bc i need to work on pacing but there have been times today that my hr on the apple watch has been 10-20 bpm higher than whats showing on my visible app :( super disappointed to see this seems to be a common issue. Is there any hope for i working or getting sent a new one?
This is the back of my left bicep. I have been using the visible tracker for about two weeks. I adhere it to my skin using adhesive stickers designed to cover insulin pumps. Took the off today to charge and have all these weird marks on my arm? No idea why.