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orthostatic intolerance

Posted by anema94559 @anema94559, Jan 26 2:41pm

Has there been any further research with respect to orthostatic intolerance as per Dr David Robertson of the Vanderbilt University since 1998 .. have had numerous tests and so far all tests come up negative with respect to blood rush ... mris, ct scans, etc.

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John, Volunteer Mentor | @johnbishop | Jan 26 3:03pm

Hello @anema94559, Welcome to Connect. I'm not sure of the further research as Dr. Robertson passed away Jan, 2024. The American Heart Association Journals Organization lists his obituary along with references to his published works here - https://www.ahajournals.org/doi/10.1161/HYPERTENSIONAHA.124.22755.

There are some members who have started discussions and commented on orthostatic intolerance that you might find helpful while you wait for others to respond - https://connect.mayoclinic.org/search/comments/.

Have you tried researching using Google Scholar (https://scholar.google.com/)?

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anema94559 | @anema94559 | Jan 26 4:25pm

Thank you for your very quick response. I will look into your emails and especially google scholar ... any information on this subject will be most helpful to me ... my neurologist has sent me and I have had numerous tests done with negative results ... so far, I seem to be the mystery patient ... some days are better than others and I can almost function normally, other days I have to stop and start .. it is the standing part that is the worst ... sitting has no lightheadedness at all .. once again, than you for listening ... a Toronto, Canada patient ...

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stallen | @stallen | Jan 27 9:28pm
In reply to @anema94559 "Thank you for your very quick response. I will look into your emails and especially google..." + (show)
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Thank you for your very quick response. I will look into your emails and especially google scholar ... any information on this subject will be most helpful to me ... my neurologist has sent me and I have had numerous tests done with negative results ... so far, I seem to be the mystery patient ... some days are better than others and I can almost function normally, other days I have to stop and start .. it is the standing part that is the worst ... sitting has no lightheadedness at all .. once again, than you for listening ... a Toronto, Canada patient ...

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Hello…has your neurologist tested you for small fiber neuropathy? Or autonomic neuropathy? Typically orthostatic hypotension is a result of nervous system not properly reacting to the rise to standing.

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anema94559 | @anema94559 | Jan 28 8:48am
In reply to @stallen "Hello…has your neurologist tested you for small fiber neuropathy? Or autonomic neuropathy? Typically orthostatic hypotension is..." + (show)
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Hello…has your neurologist tested you for small fiber neuropathy? Or autonomic neuropathy? Typically orthostatic hypotension is a result of nervous system not properly reacting to the rise to standing.

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I have had so many tests done by neurologist since July but I have an appt. to see him tomorrow ... will bring up what you suggest ... further, it seems as if my bp is fluctuating wildly and that concerns me a lot ... am also going to phone my gp and do a follow up with her on the same day just after my neurologist ... thanks .. appreciate it ...

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tspivey | @tspivey | Mar 26 7:36pm

Have you looked into Dr. Peter Rowe’s work? (John’s Hopkins University)
Look up a YouTube video called: Orthostatic intoleranc: POTS, hypotension and more. Webinar with professor Peter Rowe 19.10.21.
And a book called: Living Well with Orthostatic Intolerance

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sallys | @sallys | Oct 30 1:42am

Some autonomic labs are using Doppler ultrasound scans in conjunction with orthostatic stress testing to see how blood flow to the brain is affected.

Not many labs have the equipment yet though. Dr Peter Novak in Boston seems to be the leader in this field in the English-speaking world. (There seesm to also be research happening in South Korea and some other Asian countries.)

Dr Amanda Miller is an up and coming researcher in this field too.

And Drs Visser and van Campen in the Netherlands have studied the same topic for many years in the context of chronic fatigue syndrome. (They publish in English and have collaborated with Dr Peter Rowe, who was mentioned by another commenter.)

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sallys | @sallys | Oct 30 1:43am
In reply to @anema94559 "Thank you for your very quick response. I will look into your emails and especially google..." + (show)
Profile picture for anema94559 @anema94559

Thank you for your very quick response. I will look into your emails and especially google scholar ... any information on this subject will be most helpful to me ... my neurologist has sent me and I have had numerous tests done with negative results ... so far, I seem to be the mystery patient ... some days are better than others and I can almost function normally, other days I have to stop and start .. it is the standing part that is the worst ... sitting has no lightheadedness at all .. once again, than you for listening ... a Toronto, Canada patient ...

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@anema94559, I just noticed that you are in Canada. Dr Satish Raj is the expert there.

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