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

xchocoholic

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Hi ALL,

We had this conversation on another thread but I thought we might want to keep this info handy.

http://forums.phoenixrising.me/show...ME-(ICC)-vs-CFS-(Fukuda)-Diagnosis-Poll/page3

Feel free to correct this if I missed anything ...

I've had the poor man's tilt table test several times in my doctor's office so I figured I'd try it at home.

All you need is a bp + heartrate cuff and something to write close by. I use an el cheapo ($25 - 30) wrist cuff made by Life Source. It appears to be working since my numbers are the same at the doctor's office.

Just lay down flat for an hour and remain calm. Then take your bp and heart rate. I do this with my arm extended outright and my hand resting on something so that my arm is relaxed. I try to simulate how they do it at the doctors office.

Next stand up straight and don't move except to take your bp. Take it at 1 min, 2 min, 3 min and then 10 minutes.

Testing for NMH will require you to stand up longer. Ahimsa describes this below. Thanks ...

* A word of caution on the 10 minute test .. I was close to passing out and it took me an hour at least to recover fully. Of course if you feel faint, stop and ask someone to help you.

A 20 pt drop in your bp 3 minutes means you have orthostatic intolerance. And a 30 pt increase in heart rate after 10 minutes indicates tachycardia / pots.


Quote from ahimsa


This type of home testing will find some types of Orthostatic Intolerance but it will also miss some types. Plus, as xchocoholic says, be very careful that you don't pass out! You could hurt yourself if you fainted and fell over. I wouldn't recommend doing this test at home without someone with you. (maybe I'm way too cautious but thought I'd mention it)

My own type of Orthostatic Intolerance (OI) is Neurally Mediated Hypotension (NMH) and it would not have shown up on a home test like this. I took the tilt table test twice (why twice? the second one was medically unnecessary--exact wording from my doctor--but it was required as evidence for my ERISA long term disability claim. I think they were expecting it to be normal the second time and they were quite surprised that it was so obviously abnormal again. In other words, their strategy of forcing me to take the test completely backfired).

Anyway, on both tests my blood pressure dropped quite suddenly (to some value that could not be measured by the BP cuff) and I passed out, just from the standing (no isoproteronol required). It was a clearly abnormal result that was obvious even to my cardiologist who is not a specialist in autonomic dysfunction.

The point is that it took between 20-30 minutes before my BP dropped so suddenly. 10 minutes of standing would not have been long enough for me. Also, as the test went on I was quite uncomfortable, getting a lot of symptoms (esp. nausea) and I was fidgeting and moving my feet without being aware of it.

Obviously, my subconscious was aware that moving around would help to keep my BP from dropping. The technicians running the test had to come over and tell me to stop moving. As soon as I made myself stop moving around then very quickly after that my BP dropped. Someone trying to do this test at home might think they were being still enough but might be moving around or fidgeting more than they realize.

For an expert's description (as opposed to my rambling anecdote! ) here's an extract from the Johns Hopkins document on Orthostatic Intolerance (Full document here - PDF file ):

How are NMH and POTS diagnosed?

NMH and POTS cannot be detected with routine, resting blood pressure or heart rate
screening. The diagnoses can be made with a prolonged standing test or a tilt table test. Although
a 10-minute test is all that is needed to diagnose POTS, this is too brief for diagnosing NMH,
which usually requires at least a 45-minute period of upright posture.

Many hospitals and
academic centers throughout the world perform tilt table testing. It allows careful measurement
of the heart rate and blood pressure responses to the head-up position, usually at a 70-degree
angle, in an almost standing position. The usual reason for performing a tilt table test in the past
had been for the evaluation of recurrent fainting.

Many people with NMH develop adaptations to
keep from fainting, such as crossing their legs, fidgeting, or sitting or lying down when they get
lightheaded or tired. However, during the tilt table test they must remain still, and they cannot
call upon these natural defenses.

As a result, fainting can occur for the first time during the tilt
table test. Increased fatigue and malaise often occur for a few days after the test is performed,
although our experience has suggested that these symptoms can be minimized if the individual is
treated with intravenous saline solutions immediately after completion of the tilt test. I'm not at all trying to say that everyone out there needs to get a tilt table test. I'm just saying that this home testing may not reveal anything for a certain subset of OI patients.

Tc .. X
 

xchocoholic

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Thanks X. I will have to invest in a bp + heartrate cuff.
You're welcome .. I just hope I didn't forget anything. :D

I found a BP cuff and a glucose monitor very helpful when it came to understanding my symptoms. A diabetic freind of mine loaned me her monitor for awhile.

A little off topic but many of us have chronic hypoglycemia. I didn't realize how bad mine was until I started testing ... BTW. If mine gets much below 80 I start to feel weak. The lowest I ever saw it was 64 and I was feeling horrible at the lab while having a GTT + insulin done. This test showed that I have chronic hyperinsulinemia ...

Dr. Myhill says this is common in ME/CFS. We see quite a bit of chronic hypoglycemia and chronic dehydration on the DINET / dysautonomia board.

Between this info, testing and treating for food intolerances, nutritional deficiencies, dysbiosis, and eliminating caffeine, I've gained a lot of control over my ME/CFS symptoms ... KOW ...

tc .. x
 

glenp

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Thank you for posting that good poor mans test xchocoholic.

Some people have a delayed reaction so sometimes that needs to be considered too. As an example Sometimes I am ok when I first get up in the am (I always go back to bed) but if I have to get up again within 20 minutes it can be worse. Some do not get a reaction until they are upright for awhile. Then it can all change again.

I like this test better then the real tilt table

glen
 

moblet

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One difference between the poor man's test and the rich woman's one is that in the former, you are maintaining posture under your own power, whereas in the latter your body is at rest and posture is maintained artificially. We shouldn't expect these two tests to produce the same results, the effort of maintaining posture ourselves could either improve or hinder out bodies' ability to maintain stasis. To me this is one of those annoying medical anomalies where they only accept a test that has no basis in reality (who among us conducts their life strapped to a tilt table?) and fails to measure our capacity to function in real world conditions.

I recently discovered the toy I would have most wanted as a kid, the Arduino, a small versatile circuit board that can be programmed from your computer and then unplugged to operate independently. As can be seen on YouTube and elsewhere, hobbyists are using Arduinos for things from controlling robots to homemade ECG monitors to automatically muting their television when the name of a vacuous celebrity is mentioned. A range of readily available sensors can be plugged into it and it can store a small quantity of data onboard, and there's also a version designed to be sewn into clothing. That's got me (who's not an electrical engineer) wondering about the possibility of designing an "OI/POTS vest" that samples the wearer's orientation, HR and BP at frequent intervals. The wearer goes about their business as best they can, and afterwards the data is downloaded to a spreadsheet for analysis and presentation to one's quack of choice. Any (other) geeks out there think that a project like this would be fun to try?
 

xchocoholic

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:D Tron suits . Thanks .. I can always count on getting a good laugh from this group.

Thanks for adding to this thread too. I didn't realize how different the symptoms of dysautonomia could
be. It's good to know that there will be times when our bodies don't test the same.

That was a really good point about how our bodies respond to decreased blood flow to. I guess that's why they decided to strap people down for the rich women.s ttt. I never had a reg ttt, but I bet my adrenals and heart would have gone bezerk ..

Fwiw .. I would never have realized that I had pots AND oi if I hadn't tested myself for pots. My docs only tested me for oi. I wonder if pots is a given if you have oi .. That explained a lot of what I was feeling after I.d been standing for awhile ...

I'm not pushing myself to stand or sit as often now that I understand why it's bad for me. In case anyone missed it, peckerman says that pem/pene is from hypoperfusion. That article is on this site.

Tc .. X
 

eric_s

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I have now bought a blood pressure monitor as well, a Beurer BM 58 (it's for the arm), because i wanted to see if i can produce some data to bring to my doctor, before i ask for a tilt table test.

I tried to do this twice: Lay down for 10 minutes, then take your bp and hr, then stand up and stand still for 10 minutes and take bp and hr at 1,2,3,5 and 10 minutes.

In my case, everything seemed normal on both tests. Heart rate went up a bit when standing, but i think nowhere near abnormal levels, i think it was an increase of about 13. Blood pressure looked very good, according to the monitor's manual. I think i will still get a real tilt table test, but so far it seems there's nothing abnormal about my bp or hr in such a situation, even though i have trouble standing or sitting for a long time.
 

xchocoholic

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Hi eric,

It.s been awhile since I saw this thread ...

I don't know about others with dysautonomia but my bp and hr won't stabilize
till I've been down for an hour. If I get up too soon after laying down, my hr jumps right
back up to where it was when I was forced to lay down.

Also, nmh is different from what I have and ahimsa wrote about it. The info is in the first
Post. Nmh takes longer to happen.

It's not that I have anything against the reg ttt, but this allows us to track it ourselvrs. I crashed
from h pylori and a parasite infection recently and watched my dysautonomia worsen via this method.
It was good info to tell my doctor too.


Tc .. X
 

eric_s

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Thanks, Xchocoholic. If i have some time and patience, i will try it with a one hour period too. But i think in the end only a real tilt table test will give a result i can trust, because it's more controlled and standardized and they can compare it to other tests they have done in the same lab with the same protocol. But i wanted to have a monitor so i can do some preliminary testing at home and maybe also do it with other people, so they have something they can take to their doctor.
 

taniaaust1

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Ive found that these issues can also vary on different days. So I suggest anyone who tries a poor mans test, to at try it on several different occassions.

I recently had a specialist do a poor mans test on me and my normal POTS/BP issues on that occassion didnt show (I also didnt get the dizziness and head pressure feeling I often get), when at times Ive got a 55 beat per minute increase on heart rate when standing.
 
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This is very true - I think having to support your own body weight in the poor man's version does seem to make this harder and the results cannot be compared. Qi-Qung standing still exercises are started with less than a minute and reach their max at 10-15 minutes - that's how hard it is :) Obviously you are not supposed to faint, but you can expect your heart to work quite hard before you learn how to relax and breathe right and even then it's still exercise.

One difference between the poor man's test and the rich woman's one is that in the former, you are maintaining posture under your own power, whereas in the latter your body is at rest and posture is maintained artificially. We shouldn't expect these two tests to produce the same results, the effort of maintaining posture ourselves could either improve or hinder out bodies' ability to maintain stasis. To me this is one of those annoying medical anomalies where they only accept a test that has no basis in reality (who among us conducts their life strapped to a tilt table?) and fails to measure our capacity to function in real world conditions.

I recently discovered the toy I would have most wanted as a kid, the Arduino, a small versatile circuit board that can be programmed from your computer and then unplugged to operate independently. As can be seen on YouTube and elsewhere, hobbyists are using Arduinos for things from controlling robots to homemade ECG monitors to automatically muting their television when the name of a vacuous celebrity is mentioned. A range of readily available sensors can be plugged into it and it can store a small quantity of data onboard, and there's also a version designed to be sewn into clothing. That's got me (who's not an electrical engineer) wondering about the possibility of designing an "OI/POTS vest" that samples the wearer's orientation, HR and BP at frequent intervals. The wearer goes about their business as best they can, and afterwards the data is downloaded to a spreadsheet for analysis and presentation to one's quack of choice. Any (other) geeks out there think that a project like this would be fun to try?
 

Sushi

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I've had the "rich-man's" tilt table test and you are indeed strapped to a gurney at about 80 degrees upright. So you can't move, but you are not entirely bearing your own weight and you don't have to maintain your stability as the straps do that for you.

So yes, there are differences and it is easier to measure everything for the 20 to 45 minutes necessary to get good readings. You also have continuous BP and electrocardiograms plus about 4 other tests of autonomic function.

Sushi
 

kday

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I was diagnosed with hyperadrenergic POTS (blood pressure increases instead of decreases on table) with rich man's tilt table test.

But I am male, and this is often how POTS is displayed in males according to my cardiologist/autonomic doctor.
 

xchocoholic

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I'm the youngest of 5 kids, with 3 older brothers. As kids we played cops and robbers and
cowboys and Indians. Now if I even see a strap or handcuffs, my adrenals go into
flight or fight mode. Lol

I've had the pmtt by 4 different doctors so I'm sure it has it's benefits too. I can't be the only one who's adrenals would freak out in that
situation.

Tc .. X
 

Ocean

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Hi ALL,

We had this conversation on another thread but I thought we might want to keep this info handy.

http://forums.phoenixrising.me/show...ME-(ICC)-vs-CFS-(Fukuda)-Diagnosis-Poll/page3

Feel free to correct this if I missed anything ...

I've had the poor man's tilt table test several times in my doctor's office so I figured I'd try it at home.

All you need is a bp + heartrate cuff and something to write close by. I use an el cheapo ($25 - 30) wrist cuff made by Life Source. It appears to be working since my numbers are the same at the doctor's office.

Just lay down flat for an hour and remain calm. Then take your bp and heart rate. I do this with my arm extended outright and my hand resting on something so that my arm is relaxed. I try to simulate how they do it at the doctors office.

Next stand up straight and don't move except to take your bp. Take it at 1 min, 2 min, 3 min and then 10 minutes.

Testing for NMH will require you to stand up longer. Ahimsa describes this below. Thanks ...

* A word of caution on the 10 minute test .. I was close to passing out and it took me an hour at least to recover fully. Of course if you feel faint, stop and ask someone to help you.

A 20 pt drop in your bp 3 minutes means you have orthostatic intolerance. And a 30 pt increase in heart rate after 10 minutes indicates tachycardia / pots.


Quote from ahimsa





How are NMH and POTS diagnosed?

NMH and POTS cannot be detected with routine, resting blood pressure or heart rate
screening. The diagnoses can be made with a prolonged standing test or a tilt table test. Although
a 10-minute test is all that is needed to diagnose POTS, this is too brief for diagnosing NMH,
which usually requires at least a 45-minute period of upright posture.

Many hospitals and
academic centers throughout the world perform tilt table testing. It allows careful measurement
of the heart rate and blood pressure responses to the head-up position, usually at a 70-degree
angle, in an almost standing position. The usual reason for performing a tilt table test in the past
had been for the evaluation of recurrent fainting.

Many people with NMH develop adaptations to
keep from fainting, such as crossing their legs, fidgeting, or sitting or lying down when they get
lightheaded or tired. However, during the tilt table test they must remain still, and they cannot
call upon these natural defenses.

As a result, fainting can occur for the first time during the tilt
table test. Increased fatigue and malaise often occur for a few days after the test is performed,
although our experience has suggested that these symptoms can be minimized if the individual is
treated with intravenous saline solutions immediately after completion of the tilt test. I'm not at all trying to say that everyone out there needs to get a tilt table test. I'm just saying that this home testing may not reveal anything for a certain subset of OI patients.

Tc .. X
Which part of the bp are you supposed to look at, the top number or bottom number? When I stood for 10 minutes, the top number went down a bit and the bottom number went up.

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.
 

Sushi

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Which part of the bp are you supposed to look at, the top number or bottom number? When I stood for 10 minutes, the top number went down a bit and the bottom number went up.

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.
Yes, both numbers matter and the difference between the two is important. For quite a few of us the top number (systolic) will drop and the bottom (diastolic) will go up with prolonged standing. The difference between the two is called the pulse pressure. I can't remember the number of points difference that is used to diagnose autonomic dysfunction (someone else will know) but the fewer points difference, the more autonomic dysfunction.

I think a 30 point drop in systolic on prolonged standing is one of the diagnostic criteria for autonomic dysfunction. If you have POTS, your readings may be quite different and your heart rate will go up significantly.

On the prolonged standing part of my TTT I had a difference of only 8 points--that is not good and I felt like hell and asked to end the test.

Sushi
 

Ocean

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Yes, both numbers matter and the difference between the two is important. For quite a few of us the top number (systolic) will drop and the bottom (diastolic) will go up with prolonged standing. The difference between the two is called the pulse pressure. I can't remember the number of points difference that is used to diagnose autonomic dysfunction (someone else will know) but the fewer points difference, the more autonomic dysfunction.

I think a 30 point drop in systolic on prolonged standing is one of the diagnostic criteria for autonomic dysfunction. If you have POTS, your readings may be quite different and your heart rate will go up significantly.

On the prolonged standing part of my TTT I had a difference of only 8 points--that is not good and I felt like hell and asked to end the test.

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

POTS: your heart rate will go up a lot when you stand as compared with resting

OI/Autonimic Dysfunction:
Your bp (the top number) will drop a lot upon standing compared with resting, and/ore the pulse pressure (difference between top and botton number) will be low

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

Is that correct?

Thank you so much.
 

Sushi

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

POTS: your heart rate will go up a lot when you stand as compared with resting

OI/Autonimic Dysfunction:
Your bp (the top number) will drop a lot upon standing compared with resting, and/ore the pulse pressure (difference between top and botton number) will be low

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

Is that correct?
Sort of, except it is all autonomic dysfunction and with NMH, it is often about a half an hour before your BP goes totally wacky. POTS is kinda like the body trying to do something "intelligent" about the BP dropping..."like let's try raising the heart rate and see if that works." It doesn't!

With NMH, usually the pulse doesn't rise at all or only a point or so when you stand up. In a normal person it would rise about 10 points.

Best,
Sushi