Orthostatic hypotension with tachycardia

[Evergreen]

It's all very frustrating and upsetting.

I'm so sorry you're going through this. Am right there with you.

 

[Evergreen]

@MinIreland I found the study I was thinking of. It's this one, which has a thread here. It demonstrates that some pwME/CFS's test results are messy.

Among those with ME/CFS (n = 11), four had a consistent PoTS profile across assessments, with others alternating between PoTS and OH (n = 4) or PoTS and borderline readings (n = 3). In LC (n = 5), three showed alternating among PoTS, OH, and borderline profiles, with one each alternating PoTS/OH and PoTS/borderline, as detailed in Table 5. These findings highlight an individual’s variability in dysautonomia profiles and the potential for day-to-day phenotype shifts.

LT=10 min active Lean Test

Serial 10 min LT testing revealed that, although most patients are consistent with one dysautonomia profile, there are patients who fluctuate between PoTS, OH, and borderline profiles, which has not previously been reported in the searched literature. Fluctuation in profiles may reflect measurement variability and inconsistencies or daily autonomic fluctuation. This variability complicates diagnosis and monitoring, suggesting that single-point testing may underestimate disease burden. Future protocols should consider timing LT assessments at the time of day when the patient is most symptomatic and incorporate repeated measures to capture these fluctuations.

DMP=Dysautonomia Management Protocol

I know time of day plays a role for me. I have never been tested in the morning, and that's when my worst OI symptoms are. Overall, I think the testing in this area is not particularly reliable as it is currently done. But having objective evidence of OH or POTS does count for a lot with other doctors.

Hope this helps.

 

[MinIreland]

@MinIreland I found the study I was thinking of. It's this one, which has a thread here. It demonstrates that some pwME/CFS's test results are messy.



LT=10 min active Lean Test


View attachment 35304
DMP=Dysautonomia Management Protocol

I know time of day plays a role for me. I have never been tested in the morning, and that's when my worst OI symptoms are. Overall, I think the testing in this area is not particularly reliable as it is currently done. But having objective evidence of OH or POTS does count for a lot with other doctors.

Hope this helps.

Thanks so much @Evergreen, I might bring this study to the cardiologist. Just to show that my symptoms are highly likely because of ME/CFS.

PS. Have you found any doctor in Ireland to be helpful?