Brigham Protocol

[Sarah Tee]

Has anyone been here for testing?

https://www.brighamhealthonamission.org/2019/06/03/expanded-autonomic-testing-helps-to-pinpoint-causes-of-orthostatic-intolerance/#:~:text=Orthostatic Cerebral Hypoperfusion Syndrome (OCHOS,OCHOS can be disabling.

It sounds very comprehensive. If I win Tattslotto I'll be on a plane from Australia!

[MTRJ75]

From Australia or to Australia. I can't find where they're located. 

I did a search the other day and it seems there are more places that claim to specialize in Dysautonomia, but I think many of them are brain retraining programs. I forget the exact term I searched, but more places than I expected popped up. None of them anywhere near me though and none likely covered by insurance. 

[Sushi]

1 hour ago, MTRJ75 said:

From Australia or to Australia. I can't find where they're located. 

Brigham and Women’s hospital in Boston. There is another researcher there, Dr. David Systrom, doing interesting work on exercise intolerance.

[RecipeForDisaster]

I’ve had it done. I did come up with unusual abnormal findings (HYCH, I think) , but I haven’t heard from the doctor yet, and it was a month ago. I don’t think Novak is taking new patients (I’ve been seeing him for years), and I did not have good luck with Systrom although his research is really neat. He wants to do an invasive cardiopulmonary exercise test on everyone.

[Sarah Tee]

On 12/11/2020 at 4:41 AM, MTRJ75 said:

From Australia or to Australia. I can't find where they're located. 

I did a search the other day and it seems there are more places that claim to specialize in Dysautonomia, but I think many of them are brain retraining programs. I forget the exact term I searched, but more places than I expected popped up. None of them anywhere near me though and none likely covered by insurance. 

It's in the USA, and I'm in Australia 🙂

The other specialist place I see mentioned is in the USA too:

https://www.vumc.org/adc/

Vanderbilt Autonomic Dysfunction Centre.

[Sarah Tee]

On 12/11/2020 at 8:00 AM, RecipeForDisaster said:

I’ve had it done. I did come up with unusual abnormal findings (HYCH, I think) , but I haven’t heard from the doctor yet, and it was a month ago. I don’t think Novak is taking new patients (I’ve been seeing him for years), and I did not have good luck with Systrom although his research is really neat. He wants to do an invasive cardiopulmonary exercise test on everyone.

Is Systrom a medication?

I hope you hear back soon. It is great that someone is doing fundamental research and gathering data.

[RecipeForDisaster]

Systrom is another doctor mentioned in the post above mine. He’s also in Boston.
 

I generally don’t have great luck with the office staff of either of these, but I do have a remote appt on the 23rd and hope to actually receive a diagnosis after many years.