Finally getting transcranial Doppler ultrasound

[kushami]

After my specialist dragging his feet for months and months, I am finally getting a transcranial Doppler (TCD) ultrasound. My (tentative) diagnosis is OCHOS, a type of orthostatic intolerance, not CFS, but I know many people with CFS have similar symptoms, so I thought I’d post about it.

It will be done at a hospital in my nearest capital city, Melbourne, in Australia. The testing unit does not have a tilt table, as the TCD equipment is usually used to monitor stroke and aneurysm patients. So I will be doing a NASA lean test, and breathing into a capnograph to test my end-tidal CO2.

This should be sufficient to diagnose OCHOS or HYCH, two autonomic conditions. It can also simply show a drop in cerebral blood flow under orthostatic stress, which is common in CFS.

(I believe it can also show reduced cerebral blood flow unrelated to standing up, but I will come back and clarify that.)

Why have this test? If you have orthostatic intolerance symptoms, but your heart rate and blood pressure do not react abnormally during a NASA lean test or tilt table test, and you need to prove what is happening.

Definitions of OCHOS and HYCH:
https://pubmed.ncbi.nlm.nih.gov/26909037/
https://pubmed.ncbi.nlm.nih.gov/30256820/

There are a bunch of articles on the Health Rising blog about all this with specific reference to CFS.

Also happy to answer any questions if I can, or will try to direct you to appropriate references.

TCD combined with a tilt table test is gradually spreading, I think about ten autonomic labs in the US offer it, one in Canada, one in the Netherlands, and at least one in South Korea. Alternatively, you could do what I’m doing, and have your specialist persuade a regular TCD unit to test you while you do the NASA lean test.

I won’t quite believe it till it’s happened, but my specialist says he just has to schedule it, so fingers crossed.

P.S. Can this lead to any treatments? Yes, there are quite a few. No guarantees but worth trying. I am on a treatment specific to OCHOS that is helping me about 25%. Can elaborate if folks are interested.

There are also various treatments generally for OI, plus specific ones for specific types.

Long but good lecture on OI from Bateman Horne Center.
https://batemanhornecenter.org/remaining-upright-approach-to-orthostatic-intolerance/

(This lecture doesn’t mention OCHOS or HYCH as they were described just after it.)

 

[kushami]

Just to clarify – I have had serious fatigue and orthostatic intolerance for 20 years. At times I considered CFS, but my symptoms never quite lined up, and it now looks like I have OCHOS.

Also I found out that my condition is purely auto-immune, as it improves under immune treatment. Sadly I have only had this incidentally, when it was given for other conditions. I’m trying to persuade a rheumatologist to prescribe treatment specifically.

I do have horrible crashes after stressful situations (doctor’s appointments!) but don’t have CFS PEM.

Also I’m one of those odd bods who often feel much better late in the evening

 

[kushami]

I’m sorry to report that my specialist is continuing to drag his feet. Not surprising after all the previous delays he has caused, but still disappointing.

It’s now 5 weeks since he said he would schedule the test, and we still have no date.

I have two medications on hold because of the testing washout period that could have been doing me good in that time.

I am at the point of telling him to ”stick it”.

(I have another specialist in the wings who I am hoping to switch to very soon.)

 

[Judee]

Maybe try calling his office one more time. I just hate for you to burn a bridge behind you that may still yet be helpful in the future.

I would say, at least don't tell him to "stick it" which would definitely close that door. Instead maybe just quietly move on to the next specialist.

Anyway, just my thoughts. (shrug)

Also I’m one of those odd bods who often feel much better late in the evening

Yeah, there are lots of us like that. I get to evening and think maybe something I took that day helped but then remember that I almost always feel slightly better in the evenings.

 

[kushami]

@Judee , you are right, it’s not wise to burn bridges. The new specialist doesn’t have a long wait time, so I can move on fairly quickly, I hope.

Still not sure what to do about test though. Keep waiting or …?

 

[kushami]

Explanation follows that may be hard to follow due to complications of Australian health system …

New specialist may be able to order slightly different but still useful version of test (carotid/vertebral Doppler), but only if I go on the waiting list to become an outpatient of a public hospital that he also works at. (Will be free but may take a long time, possibly years.) Bonus: they have a tilt table.

However, if I get the transcranial Doppler done as planned, and it works okay with the NASA lean test, it will open up this testing to other people because the staff at that hospital will then know how to perform it. So any specialist in Australia will be able to order the test for patients with ME/CFS, LC or orthostatic intolerance who need to prove low cerebral blood flow. (Will be free, and the test can be ordered directly with the testing unit, you don’t need to go on a waiting list to become an outpatient at the hospital.) They don’t have a tilt table, but who knows, they may get one if there is research and clinical demand.

I would really like that to happen.

 

[Judee]

Still not sure what to do about test though. Keep waiting or …?

Can you keep trying to work with both doctors at the same time, i.e. pursue both avenues at once? Is that a possibility? Just maybe don't tell the one what you're trying to do with the other?

 

[kushami]

@Judee , that’s a very good idea! I have been awake half the night worrying about it, but now I feel a bit better.

 

[kushami]

A small update: the referral to the new specialist has been sent. If he accepts it, I should be able to see him in about 4–8 weeks. (No reason to think he won’t accept it, just being cautious!)

 

[kushami]

New specialist is trying me on new medications. Sadly he has never worked with Doppler ultrasound, so couldn’t help with the testing. He also doesn’t seem to have the autonomic knowledge to take over my care, except for the vasodilator part. Oh well.

Still waiting to hear from hospital testing unit.

 

[kushami]

Have heard from hospital testing unit. Test is booked for 25 July.

As I thought, the hospital staff seem to know what they are doing. However, I still have serious concerns about my specialist being involved because of his bumbling throughout my treatment.

The manager of the unit was able to reassure me that if transcranial readings don’t work they can default to carotid readings. (A small number of people do not have suitable “skull windows” for the transcranial probe to scan through.)

And I can ask her some more questions before the test, so that’s good.

 

[kushami]

Am on medication taper and will start “washout” tomorrow, so signing off for now.

Will report back in August.

 

[Suffering Succotash]

IRT: Doppler, heart rate, nuances.

This should be sufficient to diagnose OCHOS or HYCH, two autonomic conditions. It can also simply show a drop in cerebral blood flow under orthostatic stress, which is common in CFS.

(I believe it can also show reduced cerebral blood flow unrelated to standing up, but I will come back and clarify that.)

Why have this test? If you have orthostatic intolerance symptoms, but your heart rate and blood pressure do not react abnormally during a NASA lean test or tilt table test, and you need to prove what is happening.

Dr Peter Rowe at Johns Hopkins gave a good lecture last year on those who have had an orthostatic intolerance disorder, or POTS, for quite a while. The body often adapts and does not show as big a leap in heart rate or drop in BP as with patients who have had POTS for fewer than four years.

Their research also showed a striking number of patients who had POTS but who actually had normal heart rate and blood pressure, 62% of patients. So the comparison between the two sets of labs, one while supine and resting, and one when upright and experiencing symptoms during the TTT, is necessary for diagnosis. It's the difference between the two sets of numbers that makes the diagnosis, along with diffs in HR and BP.

Rowe and other physicians always recommend Doppler ultrasound. Though it's typical to measure blood flow in the cerebral arteries, Dr Rowe says that the more important blood vessels to measure blood flow are the carotid arteries, internal jugular veins, and the vertebral arteries at the back of the neck. These blood vessels will not have much blood running through them up to the brain when you are upright, and are depleted of oxygen more than usual when they return from the brain, indicating that the brain is starved of oxygen. The reduced blood flow in these arteries can make the diagnosis if there is not a big leap in heart rate (like 30 BPM) or drop in blood pressure.

Here is a link to Dr. Rowe's lecture.

Based on what you wrote, I'd be concerned that your physician does not have sufficient expertise to accurately differentiate between a variety of orthostatic or autonomic disorders (and specifically determine POTS subtypes), and does not know why two different sets of labs and Doppler readings are important to make an accurate diagnosis.

One set of supine labs is taken after resting in a darkened room for 20 minutes; the other when upright and experiencing symptoms. It's not the raw numbers or one set of numbers that make your diagnosis because they may be adaptively low. It's the comparison between the two sets of numbers that is important.. For example, your norepinephrine may zoom up when you are upright, but be at normal levels when you are supine. So get the complete panel of catecholamines and neurotransmitters while supine and another set while upright experiencing symptoms.

I'm sending you best wishes to you get an accurate diagnosis and dialed-in treatment for your specific orthostatic disorder, and that you feel better and are more functional.

 

[kushami]

@Suffering Succotash , it’s kind of a long story that I am going to make a post on here about eventually.

I haven’t seen that lecture yet, so thank you very much for the link.

I have found out from the hospital test unit manager that a neurologist is going to be present at my test. I have to call back and get some more details. This will be a neurologist who is familiar with Doppler scans, and I am hoping this person will be heavily involved in interpreting my results.

But if all goes pear shaped with this attempt, I have a couple of back-up plans.

Thank you for your kind wishes.

 

[kushami]

At the time I requested this testing from my specialist … ten months ago! … I was focused on Dr Peter Novak’s work, because he named the condition that I suspect I have.

And so I Googled “transcranial Doppler ultrasound Australia”, and nearly fell off my chair after finding it readily available at a nearby hospital with testing able to be ordered by any specialist (i.e. not just specialists attached to the hospital).

And so that is what I asked for.

But, as @Suffering Succotash rightly points out, Dr Rowe and his collaborators in the Netherlands have published many studies using measurements from the carotid and vertebral arteries, and that has some advantages.

However I had better not change horses mid-stream.

Will report back in August!