Home Ttt - Do You Count The Readings On Lying Down Afterwards Too?

[Batik]

I've noticed that when I run poor man's TTTs at home, I often get lower readings afterwards than before I stand up. Possibly it's because when I'm about to do a home TTT, I'm bustling about slightly, even if I'm trying to lie down for at least a few min beforehand. Today, for instance, I did one this morning, and only lasted 12 min before the breathlessness and dizziness forced me to lie down again. (My HR and BP often take quite a while to show results, something I'm concerned may mess up testing in the future.) I've only been off the antihistamines a week, and I think they're still affecting my readings, which are far more stable than they used to be.

So this morning, I took two readings before standing up, and my HR was 63 and 66. Standing up, my HR ranged from 74 to 91. I lay down again, and my HR started at 65 but went down to 56 over the next 20 min. 56 is low for me, but then I don't normally take my HR this early in the morning on an empty stomach, so perhaps it's normal for me under those conditions. Pulse pressure ranged from 28 to 57, including the latest readings. Anyway, this sort of pattern is quite normal for me - sometimes the difference doesn't hit 30bpm unless I count the readings afterwards too, or else it hits 30 from lying to standing, but goes above 40 if I count lying down afterwards as well.

I am rather annoyed that my HR and BP are generally much more stable at the moment. Perhaps it's because having a few solid months on combi antisthistamines and such has helped, perhaps it's because I'm not as ill overall as I was a few months ago, but I have a 24 hour ECG (Holter monitor) in a week and it's going to be very awkward if it doesn't show anything up.

[Batik]

I did manage to get 59 lying to 93 standing after breakfast, though it took 18 min to get up that high, but the question still stands as I'm curious now.

[Dizzysillyak]

Hi batik,

Here's a thread that I started on how to do a diy pmttt based on my experiences at my doctor's offices. You'll find more info on oi if you read the whole thread.

Note that it involves laying down for at least an hour beforehand. I recommend that because I found that the effects of my POTS/ hypoperfusion (high hr, petite mal and sob) will not resolve in less than an hour. So getting up before I've laid down flat for an hour brought those symptoms back.

I had to do this several times writing down my findings to understand what's really happening. tc ... d

http://forums.phoeni...-and-nmh.12291/

[Batik]

I pretty much do all of that except that I don't lie down flat for an hour beforehand, I keep going for longer than 10 min most times, and I have to walk about six feet to get to the corner where I stand. Someone here pointed out that a corner is great for keeping you up, so I stand with my back to the side of the built-in wardrobe and my right side against the bookcase, with the blood pressure monitor, stopwatch, paper and pencil on a shelf right by my hand. So the movement is about as minimal as it gets, once I've got there (with occasional slight detours to put my slippers on). If I stand up right by the bed, I don't have enough to lean on to keep properly still. I find it really, really awkward to organise lying flat for an hour beforehand, so I'm aware that this will be affecting my results. I find it hard to organise taking my BP when I've been lying flat for a while at any point, as the computer is usually off by then and the BP monitor is unlikely to be close enough to grab without really moving.

As moblet commented in the PR thread, I'm aware that I flex various muscles (legs and/or buttocks) while standing up for a home TTT. I try not to fidget, but it can be hard, especially since I usually get really itchy a few minutes in.

This is reminding me that I bought a heart rate monitor off eBay ages ago, possibly years, and last time I fished it out, it didn't work. Time to get out the mini screwdrivers, take off the back of the watch, and see what sort of battery it takes, I think. This might be an easier way of tracking this sort of thing. ETA: Drat. I can't get the back of the watch off.

[Dizzysillyak]

Hi batik

I'm sorry but I'm just not following you here.

For me, this is one of those things that I had to see repeatedly to understand. So I spent a few hours

on different days monitoring my bp and hr and how I was feeling. Realizing I had pots and my body's reaction

(petite mal, sob, hr, etc) really helped me understand why standing up made me feel so bad.

I'd noticed back in 2007, that I felt completely healthy if I had been laying down for awhile but never felt

well when upright. That's what lead me to learning more about oi and getting a bp / hr cuff.

My point is that if you're not feeling healthy when rested your reactions to doing this test may not be clear for you.

It took me a couple of years after eliminating my known food intolerances and toxins to feel

healthy at rest.

Hope this helps. Dizzy

[Batik]

I've got severe ME, why would I feel completely healthy at any point? I generally feel a lot better lying down than I do standing up, but my activities are also different when I'm lying down (e.g. moving about less), so it's not a simple comparison.

What I asked originally is whether we can use the HR readings from lying down after the test as well as from before the test, in order to provide a sort of baseline.

The POTS (or whatever it is) is still a lot better than it was a few months ago, even though I've now been off the antihistamines for ten days. I'm wondering whether having a good few months of solid combination antihistamines, H2 blockers and quercetin has simply brought me up to a higher level, so that even when I go off the meds, the suspected POTS isn't as bad as it was before. I really wish they'd run proper tests a few months ago, when I kept on collapsing and being taken to hospital.

[Dizzysillyak]

I have severe me too but eliminating my KNOWN food intolerances and chemicals resolved most of my symptoms

except oi. I suspect my mast cells were going crazy from all the toxins. And I was an undiagnosed

celiac until I was 50. I had neuro problems, etc from gluten too.

On whether you can use your hr numbers from lying down after the test as well as before the test, my answer is no because

you're not doing the test properly.

For ex, my hr goes down an extra 10 pts after I've been laying down 45 + minutes but not sooner. It's

in the 70's initially after I lay down but drops to 64 - 67. So my resting hr is 64 - 67 not 70+. So even if I've been laying down and watching a movie for over an hour, it stays around 64 - 67.

The last 15 minutes is when I finally feel completely healthy again. My heart, lungs, brain, etc are no

longer struggling to work. And I feel completely healthy until I get up again.

My hr is/was ? 118 - 12? when I have a pots episode and need to lay down. On mc meds, that's been reduced

to 104 ? But it's too early for me to have complete control over meds and symptoms because I'm allergic

to most foods and chemicals. I probably need to see a specialist.

As far as mast cell meds go, you can't tell how well they work until you get your baseline.

Better ? Dizzy

[Batik]

Maybe I should devote some time to working out what my baseline rate is for when I'm lying flat, or close to flat (e.g. watching TV). I've tried it a few times, but it's really rare for it to be manageable for me to lie down for an hour and then do a home TTT. I did manage it the other day, and my HR/BP didn't do all that much after I stood up. Even if I can't manage a proper home TTT, I can at least get enough of an idea of my numbers that I can deduce some things. If my HR tends to be in the 50s when I've been lying flat for an hour, then that means that the tests where I only get into the 80s after standing still count. They more often get into the 90s, 100s a certain amount (not recently), and once 114 (though I had an infection that day and collapsed a few hours later). Besides, a few months ago I was frequently getting a rise of over 30 going from merely sitting to standing, although it does usually take a while for the rise to get that high.

It seems that when I go for the 24 hour ECG (Holter monitor), I should alternate lying down for an hour and standing dead still for 20 min or so. I'll hopefully be going out that evening to a local potluck, and judging by the last time I went out (took my pulse sitting in the taxi with my fingers on my neck and it was about 96), that'll make my heart jump around suitably.

There are so many possible factors with POTS, aren't there. For you food is a big thing, and I'm really glad you've discovered it as the gluten ataxia must have been hellish, but it's not the same for everyone. I haven't been able to get a doctor to take an interest in mast cell stuff, but my GP is trying to refer me to a good ME/POTS specialist and I'm hoping that she'll know something about that side of things.

[Guest Alex]

Here is how my dr suggested I do the diy poor man's ttt :

Lying down for 10 min, then check my bp (eventually take several measurements and average them - luckily my machine does that for me).

Stand and check the bp at 1 min after standing, then at 2, 5 and 10 minutes if you can.

While standing - keep movements, talking, fidgeting, muscle flexing, etc at a minimum. Also, in my opinion, you shouldn't be using a wall/corner to support yourself if at all possible, as it might interfere with the readings.

I've never been told to repeat the lying down measurements after standing for 10 min.

Now I don't even do the 2, 5 and 10 minutes anymore. I only did that while my dr was trying to figure out the doses of my meds.

Hope this helps.

Alex

[Batik]

If I don't use a wall to support myself, I won't be able to stand still. I'll sway, tense muscles, fidget, and generally not last very long. You're supported during a professional TTT, so I'm curious as to why you reckon it's a bad idea for a home version?

[Guest Alex]

I understand your situation Batik.

My personal take on this:

I've tried to measure my bp/hr while being propped against the wall, vs standing unsupported shortly after being diagnosed - there were significant differences in the measurements in my case, particularly in my HR - always higher when unsupported.

As far as the real TTT - it's a bit of a "mystery" to me as to what the reasoning behind it being conducted the way it is...why tilt at 70 degrees and not 90, or 60, or 80 or whatever? Why does it have to last for 10 minutes? When I asked I was told this is "the procedure" and not much else.

Also, during a hospital stay the nurse noticed I had my legs against the bed - I was trying to support myself like that (afraid I would collapse otherwise ) and he came back later to redo the measurements as he said they would be inaccurate because of doing that.

Again, that's just me

Alex

[Batik]

Very interesting! I'll try it standing unsupported, then, and see if I get different results. Does it not matter if you sway etc.?

[Guest Alex]

Not sure. Supposedly any kind of movement interferes, but I don't really know. Apparently there are a lot of factors that can influence the readings that I was unaware of until recently. I listed them in a recent post. Not to mention that with an out of whack ANS anything is possible.

Alex

[Batik]

I tried it earlier, and I can definitely confirm that if I don't sway and clench my muscles, I will fall over! I caught myself just in time about once a minute. And that was with one hand resting gently on the laptop, since I was entering the readings straight onto the computer. Anyway, the readings came out about the same as the other home TTTs I've tried recently, but I'll do a few more and see if there's a pattern.