“Is it time to move beyond blood pressure and heart rate during head-up tilt testing?” Miglis et al, letter to the editor, May 2024

[kushami]

“Is it time to move beyond blood pressure and heart rate during head-up tilt testing?”

By Mitchell G. Miglis, Noor Syed, Melissa M. Cortez, Frans C. Visser, C. Linda M.C. van Campen & Peter Novak

https://link.springer.com/article/10.1007/s10286-024-01036-1

Unfortunately it is behind a paywall, but you can read part of the letter here:

https://www.deepdyve.com/lp/springe...t-rate-during-head-up-A27wOQkjUg?key=springer

The authors advocate for the use of capnography (measuring end-tidal CO2) and Doppler ultrasound (either transcranial or on the carotid or vertebral arteries). Then it cuts off. I suspect ME/CFS gets a mention.

Nothing new but good to see it all summarised in one place.

 

[kushami]

Spoiler alert:

Yes, it is!

It is time to measure orthostatic intolerance where it happens, in the noggin, like these and other researchers have been doing for decades!

And to stop missing hundreds or thousands of cases of potentially treatable cerebral hypoperfusion:
https://www.brighamandwomensfaulkne...-to-pinpoint-cases-of-orthostatic-intolerance

And to have a couple of nice big studies published by different groups in different countries on what percentage of ME/CFS patients have cerebral hypoperfusion, so it is effectively proven.

 

[kushami]

Also, these extra variables can be measured during a stand test. It is slightly more difficult than doing them during a tilt table test, but it can be done.

 

[Judee]

SNT Gatchaman at least was able to get us the synopsis: https://www.s4me.info/threads/is-it...ing-head-up-tilt-testing-2024-mitchell.38582/ (2nd post down)

Edit: This might also be talking about it but Idk: https://www.brighamandwomensfaulkne...-to-pinpoint-cases-of-orthostatic-intolerance
(Unfortunately, mornings are times when it is harder for me to read and process a lot so maybe my links won't be helpful. )

 

[maddietod]

And to stop missing hundreds or thousands of cases of potentially treatable cerebral hypoperfusion:
https://www.brighamandwomensfaulkne...-to-pinpoint-cases-of-orthostatic-intolerance

I'm always interested in what doctors do about whatever problems they find. This article says they treat with diet, exercise, and medication when necessary. Does anybody know what this looks like?

 

[Donsboig]

This article says they treat with diet, exercise, and medication when necessary. Does anybody know what this looks like?

It says the treatments are similar for POTS, so that would be:

- additional salt and water intake.
- compression clothing, including abdominal compression.
- midodrine, fludrocortisone, ivabradine, pyridostigmine, beta blockers (these are the main medications)

 

[cfs since 1998]

The NIH study measured blood pressure in 4 minute intervals and heartrate after 10 minutes. This interval is not proper to detect OI/OH in ME/CFS. I know my blood pressure drops instantly upon standing, then my heart races. Blood pressure returns to normal after about 60 seconds, and heart rate returns to normal after about 3-4 minutes.

 

[kushami]

I'm always interested in what doctors do about whatever problems they find. This article says they treat with diet, exercise, and medication when necessary. Does anybody know what this looks like?

Mostly the usual treatments for orthostatic intolerance, but there is one form of OCHOS (which I have) that is treated quite differently, with vadodilators.

(NB The exercise part would of course have to be modified or omitted for patients with ME/CFS.)

 

[kushami]

It says the treatments are similar for POTS, so that would be:

- additional salt and water intake.
- compression clothing, including abdominal compression.
- midodrine, fludrocortisone, ivabradine, pyridostigmine, beta blockers (these are the main medications)

If we are talking about the patients who have a drop in cerebral blood flow but no unusual change in heart rate or blood pressure during orthostatic testing, then ivabradine and beta blockers would not be used.

 

[kushami]

SNT Gatchaman at least was able to get us the synopsis: https://www.s4me.info/threads/is-it...ing-head-up-tilt-testing-2024-mitchell.38582/ (2nd post down)

Edit: This might also be talking about it but Idk: https://www.brighamandwomensfaulkne...-to-pinpoint-cases-of-orthostatic-intolerance
(Unfortunately, mornings are times when it is harder for me to read and process a lot so maybe my links won't be helpful. )

Yes, the article from Brigham and Women’s Hospital is talking about the same situation. So your brain is working well enough

 

[kushami]

What are the usual treatments for orthostatic intolerance?

This is my summary of the ideas behind the treatments, rather than naming each one.

* Keep blood volume topped up
* Prevent blood pooling in lower body
* Prevent excessive blood diversion to digestion after eating
* Expand blood volume if needed
* Treat any disturbance of heart rate or blood pressure

Additionally the specialist would look for and treat comorbidities or other symptoms that commonly accompany OI. And they would also go into the specific treatment for the specific type of OI.

Exception: One type of OI, hypertensive-type OCHOS, is different from the others. It is caused by abnormal vasoconstriction somewhere in the head, probably at the arteriole level (the first branch after the artery level). These patients don’t have low blood volume or blood pooling. Treatment is vasodilators to allow normal blood flow. Dr Novak suspects this condition is autoimmune, although the antibodies haven’t been identified, so non-specific immune treatments could also be used.

 

[kushami]

Article by Dr Novak explaining common types of OI syndrome:

”Cerebral Blood Flow, Heart Rate, and Blood Pressure Patterns during the Tilt Test in Common Orthostatic Syndromes”

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

This article is missing one further type, hypocapnic cerebral hypoperfusion (HYCH), which he described a year later:

https://www.ncbi.nlm.nih.gov/pmc/articles/pmid/30256820/

As far as I’m aware, any of these can co-exist with ME/CFS. For instance, in his original article on OCHOS, Dr Novak notes that three of the patients he diagnosed with OCHOS had ME/CFS.

 

[kushami]

The NIH study measured blood pressure in 4 minute intervals and heartrate after 10 minutes. This interval is not proper to detect OI/OH in ME/CFS. I know my blood pressure drops instantly upon standing, then my heart races. Blood pressure returns to normal after about 60 seconds, and heart rate returns to normal after about 3-4 minutes.

Yes, this is another reason that basic testing has to be treated with caution. A patient could do a basic stand or tilt table test and show no abnormalities because the BP and HR monitoring isn’t fine grained enough. Another problem is when the test isn’t long enough.

I’m sure you’ve seen this presentation, but for anyone else:

Initial Orthostatic Hypotension: Don’t Blink or You Will Miss It

It is really important for doctors to take a good patient history, and to pay attention to symptom onset and pattern.

Unfortunately, some doctors blindly do tests without being aware of the limitations of the tests. A big problem generally in medicine, as I’m sure everyone reading this knows!

 

[kushami]

Diet changes for OI also include reducing carbohydrate intake and having small meals, such as having four small meals instead of three larger ones.

These changes help some and not others, so there’s a fair bit of trial and error.

Edited to add: When autonomic specialists suggest reducing carbohydrates, they do not mean a drastic reduction. The idea is to reduce gradually in combination with having smaller meals, and see whether it helps. Nothing extreme.

 

[cfs since 1998]

Yes, this is another reason that basic testing has to be treated with caution. A patient could do a basic stand or tilt table test and show no abnormalities because the BP and HR monitoring isn’t fine grained enough. Another problem is when the test isn’t long enough.

I’m sure you’ve seen this presentation, but for anyone else:

Initial Orthostatic Hypotension: Don’t Blink or You Will Miss It

It is really important for doctors to take a good patient history, and to pay attention to symptom onset and pattern.

Unfortunately, some doctors blindly do tests without being aware of the limitations of the tests. A big problem generally in medicine, as I’m sure everyone reading this knows!

Actually, I hadn't seen it, but this is wonderful information. The author also describes how tilt-table testing can't measure IOH. I am working on a composition to send to the NIH study authors; it's going to take some time but I will definitely be including this. Thank you for the discussion.

 

[kushami]

Here’s a short lecture in Dutch (with decent English subtitles) from Dr Visser in which he explains and demonstrates Doppler imaging of the carotid artery.

Note that “echography” means the same as “ultrasound”.