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DIY Poor man's Tilt table test (PMTTT) for OI, POTS and NMH

Sallysblooms

P.O.T.S. now SO MUCH BETTER!
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POTS doesn't need to have low bp, just high heart rate, 30 beats or more higher when standing, and of course all of the horrid problems that comes with it. Low bp is from other things like NMH etc.
 

Valentijn

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Also, does the difference between the two numbers matter (top number minus bottom number)? I remember reading that somewhere but can't remember if it was related to this.
The pulse pressure (the difference) is important because it indicates how well your heart is moving blood around. "Normal" seems to be 30-50, and I've found several sources that call 25 and under "extremely low".

Mine's rarely over 35, and ofter under 30. It goes under 25 in the evenings on bad days when I'm feeling very worn out, and many times the BP monitor will give an error message when it's so low (under 22), probably because the pulse is too weak to be detected regularly. I can't measure my BP reliably when standing up because the pulse pressure gets too low for me to get a reading.
 

ahimsa

ahimsa_pdx on twitter
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Thanks Sushi. So do I have this right, the possible results you can get from doing this are:

NMH: after a long time, maybe 45 minutes or so your blood pressure will drop as described above

Is that correct?
In my case (diagnosis of NMH), I passed out on my first tilt table test, back in 1995, after only 20 minutes. I started having symptoms after 4-5 minutes but the fainting didn't happen until after 20 minutes (my BP suddenly dropped to something unmeasureable). And this sudden drop might have happened even earlier except for the fact that I was unconsciously fidgeting, moving my feet around, without realizing it. The folks administering the test had to ask me to stop moving. It was shortly after I made myself stand still that I fainted.

The reason that the first phase of the tilt table test is often 45 minutes long is that sometimes it takes that long before a definitive response is seen. But fainting (or some other abnormal result--fainting is not required for an abnormal test) may happen at an earlier time.

Also, my understanding is that the slightly tilted position (70-80 degrees) causes more stress in people with orthostatic intolerance than standing does. I can't find a reference right now but it has something to do with bearing all your weight while standing vs. some of the weight taken off while tilted slightly.

When folks talk about doing a poor man's tilt table test at home, and alone, I worry about a couple of things.

First, I would worry about fainting and getting hurt by the fall, maybe even hitting your head badly. I hope it is not too alarmist to suggest having someone with you if you decide to try this test at home.

Second, I would worry about false negatives. You might subconsciously move around (I was completely unaware that I was fidgeting when they told me to stop moving!), not realize it, and decide that you don't have any problem. You might have a BP monitor that fails when the pulse pressure is too narrow. The standing might not cause enough orthostatic stress to get a good result. Some people don't have an abnormal result in phase one of the tilt table test but only in phase 2 or 3 when some drug (e.g., isoproteronol) is injected.

I am not an expert so take all this information with a grain of salt (LOL!). I am just sharing some thoughts based on my limited experience and reading. I know it is hard when folks can't find a doctor, or can't get insurance coverage, or have some other obstacle that prevents them from getting the proper testing. So, I can absolutely relate to wanting to try this test at home when you can't get any support from doctors. I hope I don't sound like a wet blanket by posting my worries about what might go wrong.

I'll include a link to the Johns Hopkins document again in case it is helpful:

http://www.cfids.org/webinar/cfsinfo2010.pdf
 

ahimsa

ahimsa_pdx on twitter
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The pulse pressure (the difference) is important because it indicates how well your heart is moving blood around. "Normal" seems to be 30-50, and I've found several sources that call 25 and under "extremely low".
Just as an example, back when I was healthy and donated blood regularly, the blood donation volunteers would reject anyone who had a pulse pressure less than 25. I'm guessing that they were worried about people fainting after donation.
 

Thinktank

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Can this test be done directly after waking in the morning?

It's now 6:43 PM.
After lying down for 10 minutes my HR was 62.
Within seconds after standing it reached 112, then quickly dropped to 95. It hovered between 90 and 95 for the next 3 minutes.

Does this result mean anything?
 

Sushi

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After lying down for 10 minutes my HR was 62.
Within seconds after standing it reached 112, then quickly dropped to 95. It hovered between 90 and 95 for the next 3 minutes.
Does this result mean anything?
It certainly indicates some ANS problems and fits the criteria for POTS. A longer test would give more information though you would need someone to interpret what to do with the information!
 
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Here are my results. I don't really known anything about POTS, but maybe that is occurring?

Resting for 50 Minutes: 111/65, HR:62

1 Min: 113/75, HR=101
2 Min: 123/88, HR=95
3 Min: 117/87, HR=95
10 Min: 110/87, HR=92
15 Min: 114/90, HR=107
20 Min: 102/79, HR=103
25 Min: 127/84, HR=105
30 Min: 115/90, HR=105
35 Min: 111/87, HR=95
40 Min: 114/84, HR=101
45 Min: 118/86, HR=107
 

SOC

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Here are my results. I don't really known anything about POTS, but maybe that is occurring?

Resting for 50 Minutes: 111/65, HR:62

1 Min: 113/75, HR=101
2 Min: 123/88, HR=95
3 Min: 117/87, HR=95
10 Min: 110/87, HR=92
15 Min: 114/90, HR=107
20 Min: 102/79, HR=103
25 Min: 127/84, HR=105
30 Min: 115/90, HR=105
35 Min: 111/87, HR=95
40 Min: 114/84, HR=101
45 Min: 118/86, HR=107
Well, your HR immediately increased by more than 28 bpm, which is suggestive of POTS. Your pulse pressure dropped to around 25 within 3 minutes, which is considered "extremely low" by some sources. This is suggestive of low blood volume. None of this is certain. Your data does indicate, however, that it is worth having it checked out. You need testing and diagnosis by a knowledgeable doctor to know if you really have those conditions.

My suggestion is that you take that data to a cardiologist or electrophysiologist (a type of cardiologist who knows a bit more about this stuff) and ask for an evaluation for orthostatic intolerance. The doctor might suggest a tilt table test to confirm your data. If s/he confirms POTS, hypovolemia, or some other form of OI, there are likely treatments that might improve your condition.
 
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Thanks very much :) I will get on the phone Monday morning and see what I can find out. I am just trying to figure out what is wrong with me. I just never feel that good anymore :/
 
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I am scheduled to see a doc in a few weeks, but how much variation in the test results can one expect? I was feeling better today and have been drinking a lot of water the last few days to see if that would help. It seems the results are better. But the heart rate increases quite it a bit after the 10 minute mark. I am not sure what this means?

20 min rest, 119/66 , HR:67 , Pulse Pressure:53 , HR Delta:0
1 , 127/82 , HR:85 , Pulse Pressure:45 , HR Delta:23
2 , 119/83 , HR:86 , Pulse Pressure:36 , HR Delta:24
3 , 120/80 , HR:83 , Pulse Pressure:40 , HR Delta:21
5 , 115/83 , HR:90 , Pulse Pressure:32 , HR Delta:28
10, 119/80 , HR:89 , Pulse Pressure:39 , HR Delta:27
13, 121/89 , HR:92 , Pulse Pressure:32 , HR Delta:30
15, 118/87 , HR:98 , Pulse Pressure:31 , HR Delta:36
18, 120/87 , HR:105 , Pulse Pressure:33 , HR Delta:43
20, 126/86 , HR:103 , Pulse Pressure:40 , HR Delta:41
23, 113/84 , HR:109 , Pulse Pressure:29 , HR Delta:47
25, 119/83 , HR:103 , Pulse Pressure:36 , HR Delta:41
 
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I know for a fact I fidgeted, shivered, wretched, burped, coughed, etc I feel so much worse after doing this and was feeling very faint by the end of it, as well as more nauseated and with awful vissual distortions, muscle weakness, and a weird headache in the back of my head. My brain fog (30 mins later) is now almost as bad as I have evr known it. But despite all the issues with houw i did this test I think its fair to say there are POTS rattling around in my head. I hate to imagine what it would look lik withoout the vnlaflaxine, when my resting pulse waas requently over 120bpm.Interestingly I have had low blood pressure crashes too many times, and my ppulse and blood pressure varies way more than makes any sense. Anywhay, my (very flawed) results:
time_____Sys__Dia_pulse_(pulse)pressure
00:00:00_133__84__82____49
00:30:00_130__77__77____53
01:00:00_135__88__79____47
Stand___ 134__99_126____35
01:01:00_157 _103 _116____54
01:02:00_135__97 _119____38
01:03:00_137_106_108____31
01:05:00_125_101 _118____24
01:10:00_147_102 _113____45
01:15:00_145_100 _116____45

I think theres more than pots hiding there, to be honest, but i don't know.
 
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Snookum96

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I know for a fact I fidgeted, shivered, wretched, burped, coughed, etc I feel so much worse after doing this and was feeling very faint by the end of it, as well as more nauseated and with awful vissual distortions, muscle weakness, and a weird headache in the back of my head. My brain fog (30 mins later) is now almost as bad as I have evr known it. But despite all the issues with houw i did this test I think its fair to say there are POTS rattling around in my head. I hate to imagine what it would look lik withoout the vnlaflaxine, when my resting pulse waas requently over 120bpm.Interestingly I have had low blood pressure crashes too many times, and my ppulse and blood pressure varies way more than makes any sense. Anywhay, my (very flawed) results:
time_____Sys__Dia_pulse_(pulse)pressure
00:00:00_133__84__82____49
00:30:00_130__77__77____53
01:00:00_135__88__79____47
Stand___ 134__99_126____35
01:01:00_157 _103 _116____54
01:02:00_135__97 _119____38
01:03:00_137_106_108____31
01:05:00_125_101 _118____24
01:10:00_147_102 _113____45
01:15:00_145_100 _116____45

I think theres more than pots hiding there, to be honest, but i don't know.
Is that hh:mm:ss? I can't figure out if you were standing for just over a minute or just over an hour.
 

Thinktank

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Done this morning and i think i really need to follow up on this.
My heart rate is clearly elevated and my systolic pressure drops quite low until the 5 minute mark. Diastolic increases after 10 minutes. Oxygen keeps dropping and then stabilizes around 93/94 %.
My pulse pressure looks very low as well.
What do you guys make of it?

I turned off the airconditioning because my orthostatic intolerance is worse when it's hot.
I'll try again tomorrow with the aircon on and the room temperature set to 23 degrees celcius.

BP.jpg
 
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Valentijn

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What do you guys make of it?
Looks pretty similar to what happens to me. Pulse pressure starts on the low end of normal, then gets even lower. Then heart rate rises to try to compensate.

I also have periods, after too much activity, where my pulse pressure is low and my oxygen saturation drops as a result. Then the tachycardia kicks in, instead of doing it directly in response to the low pulse pressure.