Desmopressin Does it For ME/CFS/POTS patient

[Cort]

Cort submitted a new resource:

Desmopressin Does it For ME/CFS/POTS patient - Dr. Bateman warns catching this patient early may have been crucial

From a 2016 IACFS/ME Conference Overview

Complete Treatment using desmopressin of suspected central diabetes insipidus, POTS and/or ME/CFS following a series of adverse immune events

A poster from the Bateman-Horne Center highlighted the complete recovery of a person with severe ME/CFS and POTS - something that doesn’t happen very often -...

Read more about this resource...

 

[PamelaG]

I have What would be considered mild chronic fatigue. Heart pounding when
trying to sleep, exercise exhaustion just generally fatigued.
I have, as everyone has, been to dr after dr with no explanation.
Finally found a PAC with expertise in functional medicine.
She did some tests and diagnosed diabetes insipidus. I also do
not have the thirst that usually accompanies this disorder. Known as adypsic
diabetes insipidus. I had orthostatic hypotensionand by end of the day after
being on my feet felt exhausted.
The PAC sent me to endocrinologist who determined that I have anear complete loss of vasopressin.
Tests for this very specific, serum osmolalty together with urine osmolality
and ADH. Old blood work from 2014 showed no detectable ADH but apparently this just went unnoticed and not marked by lab as the values are starting at zero.

I wanted to write this post to possibly help anyone else! Thirst is not always
a factor! I urinated so much during the day and always once or twice in the night. This seemed normal to me. Also never had electrolyte imbalance. All the while
the heart pounding when I would be be in bed, some days more than others.
I would drink water with salt and try to hydrate. My sitting bp was fairly low.
Never had the desperate thirst that is described so it was missed!
The combination of tests have to be right! This is an old post but I hope it gets out there!