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.)
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.)
