Desmopressin (ADH) for polyuria (excessive urination)

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aquariusgirl

Senior Member
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I gave up using it ....but I was Rx'd a tiny dose compared to what I saw in one study ....think I was on .5 x2 a day
 
MeSci

MeSci

ME/CFS since 1995; activity level 6?
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Cornwall, UK
aquariusgirl said:
I gave up using it ....but I was Rx'd a tiny dose compared to what I saw in one study ....think I was on .5 x2 a day
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It depends on how you are going to take it, e.g. intranasally, orally, etc., and it depends what units you are talking about.
 
T

tdog333

Senior Member
Messages
171
Is there any way to monitor your sodium without getting your blood tested every day? For example, what if your pee is clear, and what if it is orange, would that signify anything, I'm not sure how it works since you're holding water.

Also, wouldn't drinking water with lots of salt still be safe? Or will the salt all get filtered out and do nothing?
 
Shanti1

Shanti1

Administrator
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I thought desmopressin was going to be my knight in shining armor, but it ended like a bad date :yuck:.

I decided to try desmo because of my high water intake (about 7L/day just sitting in my house), low BP (85/55mm/hg), ADH below the detection limit on lab tests, and a sense that I was not getting enough blood flow/O2 to my brain.

I started with a quarter of a 0.1mg tablet and within 10 min felt my brain fog clear and a sense of relief move through my nervous system, but the dose also gave me dry eyes and mouth and a slight headache, so I dissolved the tablet in 100 drops of water and settled on 10 drops a day or about 0.01mg.
As my cognition improved, I realized that I live with a sort of constriction and sense of anxiety because my brain is always struggling to process information, connect the dots, and react appropriately. Suddenly I found myself doing this as second nature. I found I actually wanted to call friends instead of communicating out of obligation. My water intake went down to about 1. 5L/Day. I thought perhaps I had found my answer.....

The desmopressin honeymoon lasted about 2 weeks. Despite being careful not to overload on water, and taking a very small dose, I quite suddenly developed a profound sense of weakness and very mild neuropathy on the palms of my hands and soles of my feet. My muscles themselves weren't weak, but the will to move them was gone. Same, with my mind, it was still clear, but the will to get it to think was gone. It was the first time I have experienced fatigue without brain fog.

I may have developed hyponatremia or some other electrolyte imbalance, but I will never know as my doc accidentally ordered a CBC instead of the chemscreen I had requested and I was not able to get a hold of her over the holidays.

Anyhow, it has taken me a few weeks to come back to my baseline (hence my absence from posting). I took CoQ10, PQQ, ALA, adn Benfothiamine and my neuropathy has resolved. About two weeks ago I wondered if I would do ok with an extremely small dose of desmopressin and I touched my tongue to the inner part of a halved tablet, only to relapse with weakness for a day.

However, perhaps my "bad date" wasn't all in vain. Even though I have been off desmo for a few weeks, my thirst and excessive water intake haven't come back. I also noticed that I could eat foods while on desmo that would usually put me into "food coma", particularly starches. My increased tollerance to these foods has also continued. We will see how long it lasts.

Eventhough desmo wasn't my answer, my temporary improvement gave me hope that it is possible. I have had several experiences that point to low brain blood profusion/O2 being a big player in my symptoms, so next in my line up is Nimodipine.
 
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Pyrrhus

Pyrrhus

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Shanti1 said:
I may have developed hyponatremia or some other electrolyte imbalance, but I will never know as my doc accidentally ordered a CBC instead of the chemscreen I had requested and I was not able to get a hold of her over the holidays.
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:bang-head: I hate when the wrong test is done and I am in no position to repeat the experiment! :bang-head:

Shanti1 said:
However, perhaps my "bad date" wasn't all in vain. Even though I have been off desmo for a few weeks, my thirst and excessive water intake haven't come back. I also noticed that I could eat foods while on desmo that would usually put me into "food coma", particularly starches. My increased tollerance to these foods has also continued. We will see how long it lasts
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:woot: This is very interesting! Keep us updated...
 
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