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Trying

Do Endos Prescribe Desmopressin for Orthostatic Hypotension

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Regarding ADH (anti-diuretic hormone), do endos only prescribe desmopressin for Diabetes Insipidus, or do they prescribe it for Orthostatic Hypotension? She uses the restroom 3/4 times at night (only 22yo), and it would help her energy/sleep if she did not. Retaining the water would also be helpful for her blood volume/blood pressure. I have read that some people with OI have taken desmopressin, but I do not know if most endos would do so.

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I tried to get help from an endocrinologist recently and she said there was nothing she could do for me. She repeated the ACTH stim that we knew would be normal... that is all. Every doctor is different, but mine wasted my time and money. I bet this drug would be helpful for me.

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I had no luck getting it from an endocrinologist either following two hypertonic saline tests for DI. One was inconclusive, the other negative. Endos are usually only familiar with this indication for it and are not experienced in autonomic disorders. The one I saw diagnosed "psychogenic polydipsia" - for following the fluid intake advice of the specialist who diagnosed my POTS!

An autonomic specialist would probably be of more use in prescribing it for this indication, however it is important to have DI ruled out first. There are a couple of research studies that you can find & print out by searching for desmopressin & pots also desmopressin & orthostatic hypotension which may help you argue the case for it.

B x

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@Trying - until recently I had the same problem with nightly urgency and urinating too much and too often during the day. Since I started with weekly IV fluid therapy it all changed - I no longer pee too much, I sleep through the night without urinating, I am no longer retaining fluid ( 5 lb weight loss without diet changes ). I believe that it is caused by the electrolytes in the fluid ( lactated ringer solution ) are creating a healthier fluid and electrolyte balance in the body. The fluids also greatly improved energy, OI and exercise tolerance. 

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My labs initially looked like diabetes insipidus and I was prescribed dDAVP.  It is a simple test at first with a blood draw after an overnight fast: DI or partial DI if your serum sodium is above 145, serum osmolality is above 295 and urine osmolality around 300. Later once DI was ruled out for me by a water deprivation test (not fun,) my family doc continued to prescribe dDAVP, but only overnight and it was for nocturnal urination and POTS. My son's pediatrician prescribes it to kids for bedwetting. The concern is hyponatremia - when your serum sodium level drops too low, which can happen quickly on dDAVP if you continue to drink any fluids. Several Vanderbilt articles mention using dDAVP for POTS and OI. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3419341/

https://www.researchgate.net/publication/290995380_Desmopressin_In_The_Treatment_of_Postural_Orthostatic_Tachycardia

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2 hours ago, firewatcher said:

 Later once DI was ruled out for me by a water deprivation test (not fun,) my family doc continued to prescribe dDAVP, but only overnight and it was for nocturnal urination and POTS.

Do you just take it at bedtime then? I find a tiny dose before bed very helpful in getting a full night's rest and feeling less dehydrated in the morning. It doesn't help me stand any but it does improve my quality of life. I would be worried about taking it during the day due to potential hyponatraemia, particularly as I don't produce renin or aldosterone & don't want to have to fluid restrict. Also do you take the nasal spray or tablets? Even one spray was far too much for me - I didn't pee for nearly a whole day and my BP went very high. I split a 0.2mg pill into 6 so take about 0.03mg which works but I believe my body is very sensitive to it due to having no production of my own (except when being infused with hypertonic saline for the test which isn't the case in daily life).

B x

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bombsh3ll - I took a tablet before bed. I never tried the nasal spray. As long as you don't drink after you take it, and urinate regularly during the day (or excessively) you should not have hyponatremia issues, due to the "release" of excess fluids. I only had hyponatremia issues when I took it round the clock. I don't take it anymore, after beginning hormone replacement therapy I found that I was concentrating my urine normally and was able to stop taking it.

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