Tilt test experiences

[waitingyet]

Hi i have had cfs for some years now, and right now i am doing tests for demonstrate some symptoms. Soon I will have a tilt test

Anyone here that got a tilt test could tell me their experience?
I am gonna get a tilt test done soon (due to cfs, POTS mainly). But I have fear that during the test my Pots doesnt appear (i had a nasa test prior to this tilt test and it did show pots)

Anyone could tell me if the pots manifests itself more in summer or winter? I need to demonstrate my pots again with this test. Any advice?

 

[cfs since 1998]

My POTS has always been worse in the summer, but, like you, I think there is a chance that I will go through the trouble of a tilt test and it will end up negative, so I haven't done one. But I can demonstrate it consistently at home.

 

[Insomniac]

I had it done and it did not show up dysautonomia, even though I am sure I have dysautonomia.

I had a lot of adrenaline in getting to the test and I drank 3 cups of coffee before the test in order to have the energy to leave the flat and wore compression socks to the test.
The doctor doing it told me that wearing compression socks and drinking coffee makes no difference to the results but I think that was wrong.

I really regret doing the test. It was a complete waste of energy and spoons
POTS manifests itself more in Summer

 

[cfs since 1998]

The doctor doing it told me that wearing compression socks and drinking coffee makes no difference to the results but I think that was wrong.

That doctor is an idiot.

 

[kushami]

@waitingyet, have you received any instructions for preparing for the test?

There are some instructions here:
https://batemanhornecenter.org/wp-content/uploads/2016/09/NASA-Lean-Test-Instructions-1.pdf

For most people, POTS is worse in summer. But some people feel worse in winter, and some feel equally bad all the time.

 

[Rufous McKinney]

The doctor doing it told me that wearing compression socks and drinking coffee makes no difference to the results but I think that was wrong

?? I would not listen to that person....

 

[Rufous McKinney]

I'm on BP medications, including metoprolol. Wonder what is the half life of those meds? It's "a bit risky" to abruptly stop taking those pills and I"ve never looked up how long before a tilt test, should one cease taking them.

I had alot of tachycardia and problems when I was off metoprolol due to a gerontologist doctor telling me to stop taking it. And I had dengue and another flu or infection of some sort and the tachycardia was BAD.

But most to of the time, I dont get the heart rate increases that badly, yet feel like I am deprived of brain oxygen much of the time, especially when sitting up.

 

[wabi-sabi]

I've had two tilt table tests. The first i fainted on and the second I didn't, but the tests were conducted differently. The first they just stood me up and waited took -40ish minutes. I can't quite remember. The second they kept putting me up and down so I didn't faint. I don't know why they did that. But... both tests showed that I was just deconditioned. Because objective evidence of abnormality isn't objective when it comes to us. My NASA 10 minute lean test is always abnormal too.

I think the test is as useful as the person interpreting it. If your doctor doesn't know how to read the test, or will dismiss all results as deconditioning, then it may not gain you much. But if you have a doctor that knows what the abnormalities mean, then I think it will be helpful.

 

[waitingyet]

Thank you all

For people who did the test. What were the results? POTS, hypothension, dysautonomia, sinusal tachycardia?

 

[Zebra]

Hi, @waitingyet

Are you only receiving the tilt table test?

Or will you be receiving the "full battery" of autonomic testing?

The tilt table is revealing, but not comprehensive, so just wondering.

There aren't that many Autonomic Disorders Centers out there, so some of us have better access than others.

Also, I *may* have held on to my pre-test instructions. I'd be happy to try and dig them up if that would be helpful to you. Just LMK.

 

[wabi-sabi]

For people who did the test. What were the results?

Deconditioning, of course! Never mind that I was still well enough to work and not really anymore of a couch spud than my coworkers.

I've tried to figure out the results myself, but I'm not sure- maybe neurally mediated hypotension. But that's the problem- for the test to be worth it, you need to have someone interpret the results for you. Also, I have MCAS so that contributes to the issue.

This is the guidance from Dr. Peter Rowe that I used to try to figure out my results. I still follow the guidelines for POTS since it mostly seems to help and POTS seems to be the most well known.

https://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf

 

[kushami]

@waitingyet, this article has a list of quite a few of the possible diagnoses:

https://pmc.ncbi.nlm.nih.gov/articles/PMC4972931/

There are other diagnoses related to actual heart problems as well that can come out of tilt table testing (as opposed to autonomic problems, which affect the regulation of the heart). I'm not too familiar with those.

I have OCHOS, although I didn't have a tilt table test to diagnose it because it needs specialised monitoring equipment to diagnose OCHOS that isn't available here in Australia in the right testing configuration.

The research group of van Campen, Visser and Rowe have published many good studies on orthostatic intolerance and cerebral blood flow problems if you can manage to read articles.

Or the topic is covered in some short videos (in Dutch with good English subtitles) by Prof Visser here:

 

[waitingyet]

Hi, @waitingyet

Are you only receiving the tilt table test?

Or will you be receiving the "full battery" of autonomic testing?

The tilt table is revealing, but not comprehensive, so just wondering.

There aren't that many Autonomic Disorders Centers out there, so some of us have better access than others.

Also, I *may* have held on to my pre-test instructions. I'd be happy to try and dig them up if that would be helpful to you. Just LMK.

Yes I am only receiving the tilt table test. What are the full battery of autonomic testing?

Of course, if you could send me your pre-test instructions I would appreciate it.

 

[waitingyet]

@waitingyet, this article has a list of quite a few of the possible diagnoses:

https://pmc.ncbi.nlm.nih.gov/articles/PMC4972931/

There are other diagnoses related to actual heart problems as well that can come out of tilt table testing (as opposed to autonomic problems, which affect the regulation of the heart). I'm not too familiar with those.

I have OCHOS, although I didn't have a tilt table test to diagnose it because it needs specialised monitoring equipment to diagnose OCHOS that isn't available here in Australia in the right testing configuration.

The research group of van Campen, Visser and Rowe have published many good studies on orthostatic intolerance and cerebral blood flow problems if you can manage to read articles.

Or the topic is covered in some short videos (in Dutch with good English subtitles) by Prof Visser here:

Very interesting. Thank you so much