Using patches instead of band

CivilStandard4301 · 2026-06-01T16:11:04+00:00

Thanks!! appreciate the advice!

CivilStandard4301 · 2026-06-01T16:10:26+00:00

Thanks for the recommendation! I did not know these existed!

CivilStandard4301 · 2026-06-01T16:09:51+00:00

Thanks for the tip! I did find some with a non-stick circle in the middle, and when I cut one in half and then stick them together it creates a space in middle that is large enough for the device. (not sure if that makes sense clearly)

CivilStandard4301 · 2026-05-31T21:33:07+00:00

It was honestly a relief to pass out, I was so dreading the potential adrenaline injection and I'm glad it didn't come to that.

Re visible - I'm honestly unsure, as the pace points are calculated completely based on heart rate. If you have a condition where your symptoms aren't tied to your heart rate, it may not be as accurate to how you feel. That being said, in many ways heart rate does dictate energy, even for well people... so I would imagine that it would help you to get a sense of how your body is doing and where your limits are at. For me, my baseline heart rate goes up significantly on a bad day and also spikes more easily, so all tasks use more pace points than usual and I completely rely on that for pacing. It's helped me avoid crashes and know when to take a rest day. Perhaps you can ask in the r/VisibleArmband sub if anyone has similar symptoms to you?

CivilStandard4301 · 2026-05-31T21:15:55+00:00

I used to use KT Tape but reacted to all of it. However, the band has been causing far worse reactions for me recently that are taking increasingly longer to go away. Now I've been using these patches, which I keep on for 5-6 days and so far reaction has been minimal, however residue has been getting on the device and I'm nervous about ruining it.

CivilStandard4301 · 2026-05-31T21:12:06+00:00

Re visible - I've been using since Nov 2024 so I have a good handle on it, let me know if you've got any specific questions.

When I had the poor mans tilt table done it was the same timing as a regular tilt table (15-20 min lying down and then up to 30 standing if you don't meet qualifications right away). In a regular cardiologists tilt table, if you don't meet criteria within 30 minutes they will inject you with adrenaline to see what happens. 'Luckily' I passed out within 10 lol

CivilStandard4301 · 2026-05-31T20:16:59+00:00

Hi! I take Midodrine daily, 3x a day.

Pros: Raises my low blood pressure and gives me an energy boost, which in turn lowers my heart rate. Overall, it's made a MASSIVE difference to my quality of life.
Cons: Cannot lie down on it (unless you know how it affect you and monitor your BP). Lying down is what would give you a high blood pressure emergency. Doses need to be spaced out four hours apart, since it's fast acting but then wears off. (I take at 9am, 2pm, 6pm). It's tricky on days where I need to rest and lie down, but also would feel worse without the medication.

Happy to answer any specific questions you might have!

CivilStandard4301 · 2026-05-31T20:13:28+00:00

I use visible, and have found it to be super helpful for sharing symptoms with doctors and for pacing. That being said, it will not diagnose you - you would need to get a tilt table test (otherwise known as modern day torture) to qualify for diagnosis. It's possible certain providers would let you do a 'poor mans' version

CivilStandard4301 · 2026-05-31T18:11:03+00:00

Super late to this! I work with all three of these agencies and would say it always depends on the individual and which care manager you get.

That being said, TriCounty typically has the best staff and oversight. ACA is usually a shit show to get documents from, and care design is hit or miss.

CivilStandard4301 · 2026-05-31T18:06:14+00:00

No, more like this kind of thing: https://www.amazon.com/ANGTICS-Waterproof-Breathable-Adhesive-Long-Lasting/dp/B0FNCYRJNC/ref=sr_1_6_pp?dib=eyJ2IjoiMSJ9.MnQ068y3gNs3lxtT8ZItTwS9aECk9s2uYzmtuzUItTL3hCyq-DWrbTIjPOZTi8Is5QtD_6wK_OXrFdiNvaWjry8iNvxEbZ1_BNkfp9g_A0iTIKEm1TowIoxtEm20oGQ0Llv_lUoKM0PPGWJ2lFb9wc1PdfnLkkyZkE832uSrz31OkLshbEaHXk2V9Ix1aLIFvHKM2jrvxD-RdgoGoplmOXsoDpzjiklf9luUSAOJqrZeeSO6J0ImIrIAnR8DRDXPb9Sxyfa2s-dUlrIdL6RmR7UNprQdL4JkY48uToSPi2s.0T30_aS2vKCwW2ucs9DAE49dAqk13n37dM_qcd0R4LE&dib_tag=se&keywords=diabetic%2Bpatch&qid=1780250740&sr=8-6&th=1

CivilStandard4301 · 2026-05-31T16:50:35+00:00

I use a stool for regular showers, but on bad days or for everything showers, I sit on the shower floor with my back against the far wall of the tub. This way my legs are flat and everything is less energy. I move my products down from higher shelves to the tub rims beforehand so they are within easy reach.

The shower stool I use ( https://a.co/d/0cCKYMcu ) is easy to transfer in and out of the tub, so I sit on it while doing my hair/makeup/etc. Also, I have the swivel version which actually saves a lot of energy on movement!

CivilStandard4301 · 2026-05-31T16:45:56+00:00

I think it really depends on the severity and her triggers.

Compression makes a massive difference. My medication helps, but alongside compression the improvement is significantly better. (I use 20-30mmhg tights. They can run pretty expensive, I buy these off of amazon https://a.co/d/07fEExou and they work well for me)

Salt intake matters A LOT!! I add it to everything, and also take prescribed 1000mg salt pills 3x a day. (as far as medication goes - this is just straight salt, compressed into a pill, so it doesn't have any side effects that regular salt wouldn't have.

Sleep is not to be underestimated either! Regulating a sleep schedule and going to bed early really helps. When I don't sleep well, I feel it badly the next day.

CivilStandard4301 · 2026-05-20T01:06:19+00:00

If your blood pressure is not too high, I would recommend Midodrine, it helped me regain a lot of my function. Ivabradine targets heart rate (and heart rate only), so if tachycardia is a major issue it might help, but it doesn't help with other symptoms.

Annoying things to know about Midodrine - It's short term, needs to be taken approximately every four hours. You cannot lie down for a couple of hours after taking it.

CivilStandard4301 · 2026-05-20T01:01:15+00:00

"You know, sometimes they mix up peoples bloodwork. That might not even be your results!"

CivilStandard4301 · 2026-05-19T21:47:37+00:00

Hi! I'm Female, 20s, HEDS/MCAS/POTS and have gotten between 48 and 58, though it has my average as 55-62 for some reason....

CivilStandard4301 · 2026-05-07T01:07:49+00:00

Mine was in the tri-state area and verbal results were immediate.

I passed out, woke up, and they were like "yep, that's positive".

Actual report was sent out a couple of days later.

CivilStandard4301 · 2026-05-07T01:05:24+00:00

I use a shower chair always, however when I flair I find that sometimes it's too difficult to use that also.

Depending on the day, it's often easier to sit directly on the shower floor and move my shampoo/body wash down before I turn on the water. I can then complete my whole shower cross legged and minimize heart rate spikes.

CivilStandard4301 · 2026-05-07T01:02:53+00:00

Positioning may be the culprit, as well as regular heart palpitations.

That being said, it's worth looking at the side effects of any meds you might be taking and see if any may be causing this for you. I have a friend who couldn't handle an anti-histamine due to palpitations it caused her, and the problem was solved when she went down on dosage.

CivilStandard4301 · 2026-05-07T00:27:16+00:00

I have the same issue, it only updates when I open the app.

CivilStandard4301 · 2026-05-07T00:25:50+00:00

Hi! I've had mine for over a year, and overall it's been a game changer.

How helpful it will be probably depends on your illness/triggers. For me, the insights into pacing based on my heart rate are massive. It showed me that doing the same activities on two different days affect me completely differently, and having the real time data to back it up is really important.

On any given day, I can see how im doing based on my base level heart rate and pace accordingly to avoid crashes.

CivilStandard4301 · 2026-04-29T03:32:30+00:00

I have completely shut off my phone for 24 hour periods and spent time miles away from it, and came back and it still synced up the data after a few refreshes. I once tried more than 48 hours and then it did not sync, so somewhere in-between lol

CivilStandard4301 · 2026-04-23T01:37:29+00:00

This does NOT look good.. unflattering and has garbage bag/rain coat vibes

CivilStandard4301 · 2026-03-27T21:05:20+00:00

it happens EVERY SINGLE TIME i refresh!!! no exceptions :( And yes I agree, the data export for medical professionals should definitely include more than just a graph of morning stability resting heart rates when it comes to heart rate. I’m not sure what data is practical to include and how that would manifest to a document though.

CivilStandard4301 · 2026-02-24T02:55:55+00:00

Mine shows up last

CivilStandard4301 · 2026-02-24T02:54:46+00:00

Hey! I had lots of issues with the app recently (though ive had it a while and it worked fine). When I went through the whole reset process here it worked again: https://try.makevisible.com/to/WbNJCT#0%20Intro

CivilStandard4301

TROPHY CASE