medtech in everyday life

Shaggy dog story?

I’m about to go to bed, really happy because I will be seeing my son tomorrow.

As I take my Pjs out of the dryer, I remember I have been wearing the Empatica E4 again and I wonder if it captured anything.

I caught three wrong buses today, and I nearly missed an appointment at the dog groomer’s, so my first thought when I saw the 172 HR peak was that it must have been during the stressful period (‘Am I ever going to make it to that 4pm appointment?’ ) this afternoon.

Ignore the red line on the trace near 4pm. I was just fiddling with my coat sleeve and accidentally pressed the button.

You can clearly see how stressed I am as I struggle to make the appointment, getting lost between 3.30 and 5 (look at the EDA)

Ha ha! My EDA goes through the roof because I am both hot and stressed: over 11, LOL)

it turns out that the 172 HR peak isnt anywhere near this point in time.

How odd.

I look in a bit further, expecting to see a massive change in the accelerometer as an artefact sign, but I don’t see that either.

Unless I am mistaken, at 19.26, the heart rate jumps from 87 bpm (quite high for me, my resting is around 65 bpm) to 172 bpm (!) in just 5 seconds.

close up of the Empatica E4 trace, showing HR jumping to 172 bp in 5 seconds.

I don’t have much time to look at this, I need to sleep as well as I can this evening. But I’m wondering, where was I at 7.26pm and what was I doing?

Drat. I can’t use Life360 to find out, because my phone ran out of power. But I remember catching  the 1903 bus (there was only 1 per hour), and then another, and the timetables suggest the bus gets to the stop near my home some time near 1930.

Looking at the wider view the accelerometer traces appear to show me getting off the bus at 1932. So it was 6 minutes before I climbed off the second bus.

Then I remember: the bus took an unusual route from the station to Sandgate Road, and for one horrible moment, I thought I had caught the fourth wrong bus of the day. Getting the wrong bus means a huge amount of pain when my joints are subluxed, and one or more of my knees or ilia are usually in the wrong place. Getting the wrong bus could mean a fall, a full dislocation and not being able to get up again. It is a big deal. And at this point, because I had walked so far due to the other wrong buses, so many joints were subluxed that I could barely stand.

So at this point, the fact that the bus started going the wrong way – it was a potential nightmare. The HR jump to 172 bpm is when I had a bit of a panic. Not long after eating.

Odd to think that my heart rate jumped from 87 bpm to 172 bpm in just 5 seconds, and yet I didn’t feel it at all. But I do remember feeling pretty awful after I climbed off the bus just a few minutes later. I thought I was going to fall over again and I staggered around a bit.

This is the ‘feeling pretty awful’ chunk of time – only about 30 seconds of it. The E4 is pretty amazing to be able to see the beats like this – to see how deep the detail goes, take a look at the time stamps.

So yes. That’s me staggering about a few minutes after getting up out of my seat and climbing off the bus, a few minutes after a  172bpm panic.


There is a another fast jump later in the evening at 21.12 – HR goes from 75bpm to 137bpm in 20 seconds. After I had eaten again (sioc).


The few things that I am suspecting so far:

  1. If I do have moderate POTS-like HR changes, they might show up more after eating, since few or none showed up during the 24hr ECG week (I still have to check this) when I was not eating very much (my Tax Credits were cut again! I had very little money to eat), but they are showing up here. Of course, this data might juts be noise.
  2. Given the relatively level accelerometer, it is possible that the ‘feeling awful’ period does have some visible BPV features. I don’t know.
  3. If the data aren’t just artefact, then yes, my HR does jump up when I panic, but I can’t feel it (that’s odd, because two decades ago, when I had palpitations, I really did feel it. A lot). Now (In my late 40s) I don’t feel my HR rate changing, I just stagger or wobble at this point. I just feel awful and keel over.

In other news

I’m really excited about the fact that I managed to pop both ilia back in *on my own!* last night. The back pain was really bad, so I watched (another) YouTube video about how to put your subluxed sacroiliac joints back in the right place, this time involving a stick, a pilates band and a ball. I followed the instructions a few times and there were four loud pops, two each on each side of my pelvis, and the pain was gone. Hurrah!

Its significant, not only because putting your pelvis back together reduces pain (a lot!) but also because I need my ilia to be aligned for strengthening exercises (otherwise I am building up muscle in the ‘joints out’ position, which isnt good). To date, my problem has been that my ilia are so unstable, even if a physiotherapist professionally adjusts them back into the right place, they only stay ‘fixed’ for 45 minutes – basically as soon as I sit down, they crack open again and the pain/wobbling is back.

But strengthening up is my only hope. So the only way I can stop the pain is if I can successfully realign my pelvis frequently enough to do the exercises in the Muldowery protocol).

Yesterday, for the pain to go away, both ilia / SJs had to pop. This tells me that the pain isnt from single upslip: its double upslip (which happens a lot in Ehlers Danlos people). So I need to keep both ilia in check whilst I try to strengthen up.

Ending with a freshly-groomed doggie picture.


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