Transcranial Doppler equipment grants

[Sarah Tee]

Just watching research grant information from last year and thought it might be of interest which researchers/institutions received grants for transcranial Doppler equipment to use during TTT.

(Several researchers have looked at cerebral blood flow velocity in dysautonomia patients. Dr Peter Novak published an article naming HYCH OCHOS as a new OI syndrome diagnosable with this technology.)

Here are the recipients:

• Tae Chung, Johns Hopkins – has an interest in exercise rehabilitation
  https://vimeo.com/483090164
   
• Melissa Cortez, University of Utah – has an interest in headache and migraine
  https://vimeo.com/359102751
   
• Nate Robbins, Dartmouth Hitchcock – neurologist
  https://www.dartmouth-hitchcock.org/findaprovider/provider/2145/Nathaniel-M-Robbins
   
• Satish Raj, University of Calgary – cardiologist with lots of POTS research under his belt, frequent speaker at DI conferences
  https://vimeo.com/589514511
   

So if you see one of these doctors, or attend one of these institutions, you may be able to have your cerebral blood flow checked soon.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6157889/

https://www.brighamandwomensfaulkner.org/about-bwfh/news/expanded-autonomic-testing-helps-to-pinpoint-cases-of-orthostatic-intolerance

https://pubmed.ncbi.nlm.nih.gov/26427910/

Is there any particular treatment outcome?

Dr. Novak has some medication suggestions in his textbook, “Autonomic Testing”, which your specialist may have. Nothing definite but might be something you haven’t tried yet. Otherwise, treatment is along the same lines as other OI syndromes.

Update: I missed the following paragraph in one of Dr Novak’s papers:

“This syndrome [OCHOS] may result from abnormal cerebral vasoconstriction or abnormal venous pooling in the upright position. Our approach to therapy is the use of calcium channel blockers or angiotensin-converting enzyme blockers for patients with hypertension or prehypertension; and volume expansion with salt, fluids, fludrocortisone, or the use of pressor medications in patients with low blood pressure.”

So, for one OCHOS group – those with hypertension – calcium channel blockers may help reduce the abnormal constriction of arteries to the head and brain.

For the other OCHOS group – those with low blood volume, poor venous return, low blood pressure – the usual OI and pressor medications would be tried.

[Sarah Tee]

I was hoping the grants would go a bit further afield than the US and Canada. Maybe next year they will be offered again. I will encourage specialists here in Australia to apply. (The grants were open to applicants in any country.)

[RecipeForDisaster]

31 minutes ago, Sarah Tee said:

Just watching research grant information from last year and thought it might be of interest which researchers/institutions received grants for transcranial Doppler equipment to use during TTT.

(Several researchers have looked at cerebral blood flow velocity in dysautonomia patients. Dr Peter Novak published an article naming HYCH as a new OI syndrome diagnoseable with this technology.)

Here are the recipients:

• Tae Chung, Johns Hopkins
• Melissa Cortez, University of Utah
• Nate Robbins, Dartmouth Hitchcock
• Satish Raj, University of Calgary

So if you see one of these doctors, or attend one of these institutions, you may be able to have your cerebral blood flow checked soon.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6157889/

https://www.brighamandwomensfaulkner.org/about-bwfh/news/expanded-autonomic-testing-helps-to-pinpoint-cases-of-orthostatic-intolerance

https://pubmed.ncbi.nlm.nih.gov/26427910/

Is there any particular treatment outcome?

Dr. Novak has some medication suggestions in his textbook, “Autonomic Testing”, which your specialist may have. Nothing definite but might be something you haven’t tried yet. Otherwise, treatment is along the same lines as other OI syndromes.

I was glad to get the HYCH label so I’d have -something- other than generic dysautonomia . I’m kind of amazed that the technology is expensive enough to warrant a grant, but I’m glad more doctors will be able to do this. I probably would have had an inconclusive TTT without the Doppler.

[MikeO]

16 minutes ago, RecipeForDisaster said:

I was glad to get the HYCH label so I’d have -something- other than generic dysautonomia . I’m kind of amazed that the technology is expensive enough to warrant a grant, but I’m glad more doctors will be able to do this. I probably would have had an inconclusive TTT without the Doppler.

I know the university has this but chooses not to use it or better said has know one that has an interest. Not sure if it is because of insurance not willing to pay for it. I have seen over the last year that they at least acknowledge POTS and now have a couple of Docs that will work with this.    

[Sarah Tee]

@Pistol, I suspect I have lowered cerebral blood flow too. Not sure about the end tidal CO2/hypocapnia part. Do they always go together?

I have asked and so far no luck locating testing in Australia (haven’t asked that many specialists yet). I wonder if hospitals might have the Doppler gadget but haven’t thought to use it in autonomic testing. If I remember right, end tidal CO2 meters are fairly common in intensive care units, so perhaps many hospitals would already have them.

I actually saw a handheld one being used to illustrate how oxygen/CO2 work in breathing on “Operation Ouch”, a BBC medical education program for children.

The cost isn’t high for the Doppler headset, you are right.

I forgot to mention the bonus that Dr Novak will be mentoring the grant recipients. Maybe the grant was aimed at bringing attention to those who have “plain old OI” just as much as getting more of these gadgets out there. (Not that they won’t be useful.)

[Sarah Tee]

Found a different use in investigating pediatric syncope (Canadian study):

https://publications.aap.org/pediatrics/article-abstract/104/2/237/62438/Cerebral-Blood-Flow-Velocity-During-Tilt-Table?redirectedFrom=fulltext

[Sarah Tee]

Here is the segment on “Operation Ouch” (from 2 min mark approx.):

This shows a capnometer, which may or may not be what they use to measure “end tidal CO2”. Does anyone know?

By the way, this is an excellent show. It is funny and corny and also very educational. I have learnt a lot watching it. I recommend it for all ages.

Not sure about accessing it in various countries. In the UK, you can see it on the BBC. In Australia, you can see it on the ABC.

Other countries may only be able to see the clips that are on YouTube.

https://www.youtube.com/@OperationOuch

[Sarah Tee]

Answering my question:

According to this webpage, a capnometer does measure end tidal CO2. And a capnograph records data over time and displays it graphically.

https://infiniummedical.com/what-is-capnography/

[Sarah Tee]

If anyone here contributes to Wikipedia, autonomic testing for cerebral blood flow velocity could be added to the entry for transcranial Doppler (with a suitable footnote or two).

I used to contribute bits and bobs a long time ago, but I don’t any more.

[RecipeForDisaster]

2 hours ago, Sarah Tee said:

If anyone here contributes to Wikipedia, autonomic testing for cerebral blood flow velocity could be added to the entry for transcranial Doppler (with a suitable footnote or two).

I used to contribute bits and bobs a long time ago, but I don’t any more.

That’s really neat! I’m the same, I used to edit, but haven’t in forever.

[rondo]

I don't have a diagnosis yet but my neurologist ordered TTT for suspected Cardiovascular Autonomic Neuropathy. It is scheduled for this week. I am pretty sure I have neither POTS  nor orthostatic hypotension based on self administered orthostatic vitals. I definitely have orthostatic intolerance. Once my symptoms start, the longer I remain upright, the worse my brain function gets. So I do think my cerebral blood flow becomes impaired. It improves if I sit down or lie down.

 I had to stop working because my job literally requires me to think on my feet all day. 

I suspect the TTT I will be getting will not include CBFV, and so I am pretty worried it will come back as "normal "

(does that sound twisted, that I am worried my test for a serious and disabling condition will come out normal!?!)

After reading about it on this forum, I read some of Dr Novak's work. It seems like a no brainer to include CBFV in all TTTs.

(pun intended:)

 

 

 

 

 

[Pistol]

13 hours ago, rondo said:

I suspect the TTT I will be getting will not include CBFV, and so I am pretty worried it will come back as "normal "

(does that sound twisted, that I am worried my test for a serious and disabling condition will come out normal!?!)

@rondo no, it does not sound twisted. We are so used to getting no answers and no one knows what is going on with us that it is almost a relief when we finally get an abnormal test result! I know that after years of being told there is nothing wrong with me I hugged my autonomic specialist when he confirmed my HPOTS diagnosis with a blood test! Although after that there were still many docs who have no clue what that condition even is but at least there is a name! 

[Sarah Tee]

@rondo, I have orthostatic intolerance with normal heart rate and blood pressure.

Specialists have been diagnosing chronic orthostatic intolerance for quite a while without checking cerebral blood flow.

I have seen two autonomic specialists here in Australia who had no problem making the diagnosis, so I have my fingers crossed that your specialist will be helpful.

It is not weird at all to want to be diagnosed with something. After all, you have already been living with the symptoms. You are not wishing anything bad on yourself, just looking for a name and an explanation (of sorts).

In terms of treatment, as far as I can tell from peering at extracts from his textbook, Dr Novak hasn’t yet found a specific treatment for low cerebral blood flow. You and your specialist will be trying the same selection of interventions as someone diagnosed with HYCH, for instance.

You know, it is funny you posted because I was just thinking “Boo hoo, my diagnosis doesn’t even have a name”. I would have to call it chronic orthostatic intolerance, with normal BP and HR, caused by autonomic dysfunction.

[Pistol]

11 minutes ago, Sarah Tee said:

I would have to call it chronic orthostatic intolerance, with normal BP and HR, caused by autonomic dysfunction.

@Sarah Tee so you have COIwNHRBP? 😉

[MikeO]

On 4/4/2023 at 4:53 PM, rondo said:

my neurologist ordered TTT for suspected Cardiovascular Autonomic Neuropathy. It is scheduled for this week.

If inclined let us know how your TTT test came out.

[RecipeForDisaster]

2 hours ago, Sarah Tee said:

@rondo, I have orthostatic intolerance with normal heart rate and blood pressure.

Specialists have been diagnosing chronic orthostatic intolerance for quite a while without checking cerebral blood flow.

I have seen two autonomic specialists here in Australia who had no problem making the diagnosis, so I have my fingers crossed that your specialist will be helpful.

It is not weird at all to want to be diagnosed with something. After all, you have already been living with the symptoms. You are not wishing anything bad on yourself, just looking for a name and an explanation (of sorts).

In terms of treatment, as far as I can tell from peering at extracts from his textbook, Dr Novak hasn’t yet found a specific treatment for low cerebral blood flow. You and your specialist will be trying the same selection of interventions as someone diagnosed with HYCH, for instance.

You know, it is funny you posted because I was just thinking “Boo hoo, my diagnosis doesn’t even have a name”. I would have to call it chronic orthostatic intolerance, with normal BP and HR, caused by autonomic dysfunction.

He has been trying galantamine - I had trouble tolerating it and didn’t feel a big difference, but I didn’t get my dose up very high. I know it made my insomnia worse, even taking it in the morning, and I think it made the pounding worse. I had high hopes for it. Some people get a calcium channel blocker, like Nimotop. I think my BP is too low.

[Sarah Tee]

@Pistol, haha, I wonder, how do you pronounce that? I imagine a horse neighing indignantly and ending on a hiccup!

[Sarah Tee]

@RecipeForDisaster, that’s interesting, I hadn’t heard of galantamine. Is it for the acetylcholine angle?

I’m sorry it didn’t work for you. Insomnia is the last thing any of us need as a side effect.

The other day I was reviewing all the medications I have tried. I mused, “I think midodrine was my favourite”. My dad said, “But midodrine didn’t work, did it?” And I said, “No, it didn’t work, but it had the least side effects”.

🙂

I hope some very clever and dedicated PhD students are out there devoting themselves to understanding and reducing side effects in medications so we can benefit from their work.

[MikeO]

52 minutes ago, Sarah Tee said:

I hope some very clever and dedicated PhD students are out there devoting themselves to understanding and reducing side effects in medications so we can benefit from their work.

Here at my local provider they now have a specialist and pharmacy that focuses on meds (side effects) or interactions it has been a game changer some peeps. I do still not understand the cerebral doppler stuff. Pass out with no change in vitals is teling. I get the lack of cerebral perfusion and when it goes low one's body most likely will respond. for me it is taking convulsions as my brain try's to adjust and can be a bit violent. also lack of pulmonary filling will spark this as well and a standard TTT should pick up on this.

Just my thoughts. 

[RecipeForDisaster]

1 hour ago, Sarah Tee said:

@RecipeForDisaster, that’s interesting, I hadn’t heard of galantamine. Is it for the acetylcholine angle?

I’m sorry it didn’t work for you. Insomnia is the last thing any of us need as a side effect.

The other day I was reviewing all the medications I have tried. I mused, “I think midodrine was my favourite”. My dad said, “But midodrine didn’t work, did it?” And I said, “No, it didn’t work, but it had the least side effects”.

🙂

I hope some very clever and dedicated PhD students are out there devoting themselves to understanding and reducing side effects in medications so we can benefit from their work.

Yeah, I tried many doses at different times for a long time. I did not want to give up. I am not sure if it was that or as a cerebral vasodilator(I think the latter). I definitely need that! My heart pounding is bad enough without any meds exacerbating it. Same for my insomnia, sigh.

I’d still try the Nimotop but I don’t think anyone wants to write for it. That’s funny, I have meds that I feel that way about, but midodrine isn’t one of them! I have side effects starting at 5mg. It does help, but I have to take tiny doses hourly or so in order to get enough to have any benefit. It’s pretty annoying. I wish it was extended release, so I could take a tiny dose of that one or two times a day. I do know what you mean, though, about the meds that don’t do anything bad OR good. 
 

Yes, wouldn’t that be great? I’m always happy to be a Guinea pig for that reason. I hope to help others.

[RecipeForDisaster]

3 minutes ago, MikeO said:

Here at my local provider they now have a specialist and pharmacy that focuses on meds (side effects) or interactions it has been a game changer some peeps. I do still not understand the cerebral doppler stuff. Pass out with no change in vitals is teling. I get the lack of cerebral perfusion and when it goes low one's body most likely will respond. for me it is taking convulsions as my brain try's to adjust and can be a bit violent. also lack of pulmonary filling will spark this as well and a standard TTT should pick up on this.

Just my thoughts. 

The Doppler lets them see how well perfused your brain is, and how that changes with position. It’s also aligned with exhaled CO2 readings in this case. My brain had 37% less circulation when I was upright (that fits into severe). I did drop my BP and raise my HR (which was already up), but not enough to get a diagnosis from those alone. That said, I always say that during my TTTs, I am not myself at all - off my meds, fighting traffic and navigation for the 2 hour trip up, parking, near misses, etc. I hate big cities, so I always show up way "better" than my baseline. I promise that if I could really have a TTT done at home, it’d be telling.

[MikeO]

22 hours ago, RecipeForDisaster said:

The Doppler lets them see how well perfused your brain is, and how that changes with position. It’s also aligned with exhaled CO2 readings in this case. My brain had 37% less circulation when I was upright (that fits into severe). I did drop my BP and raise my HR (which was already up), but not enough to get a diagnosis from those alone. That said, I always say that during my TTTs, I am not myself at all - off my meds, fighting traffic and navigation for the 2 hour trip up, parking, near misses, etc. I hate big cities, so I always show up way "better" than my baseline. I promise that if I could really have a TTT done at home, it’d be telling.

I know I never seem to present in the clinic or should i say off the TTT table albeit have some smart folks pickup up on it as i try to hide events. All i know is when my cerebral perfusion is low it become a violent event. Still i don't see this becoming a standard inclusion in the TTT's that we get here just for the fact the Docs know this already.

I do have to it would help mentally knowin the numbers.

[Sarah Tee]

@RecipeForDisaster, I was just re-reading this thread. 37%! Yikes!

The research I read had the control group losing an average of 2%, and the OI groups losing about 20%.

In the Australian support group that I’m in, a member with POTS mentioned getting a SPECT scan to check blood flow to her brain. It was done lying down, but still showed deficiencies to the frontal and parietal lobe. The deficiencies were mild but still considered evidence of impairment. It was done not for diagnostic purposes but to use in applying for disability/income assistance.

[RecipeForDisaster]

16 minutes ago, Sarah Tee said:

@RecipeForDisaster, I was just re-reading this thread. 37%! Yikes!

The research I read had the control group losing an average of 2%, and the OI groups losing about 20%.

In the Australian support group that I’m in, a member with POTS mentioned getting a SPECT scan to check blood flow to her brain. It was done lying down, but still showed deficiencies to the frontal and parietal lobe. The deficiencies were mild but still considered evidence of impairment. It was done not for diagnostic purposes but to use in applying for disability/income assistance.

That’d be interesting, too. I’d do it just to know and to help research. But yeah, I understand now why I feel so awful when I’m upright, even sitting without my feet up. There is also other stuff wrong with me, so this is not helping.

[Sarah Tee]

Just an addendum: I read a comment on a lecture on YouTube that this test is being done in the Netherlands by a Dr Visser.

Possibly the same doctor mentioned in this blog post:

https://www.healthrising.org/blog/2013/11/23/high-heart-rates-low-blood-flows-brain-visser-video-series-chronic-fatigue-syndrome-continues/