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rezz_berry

Updated 1y ago

Struggling with Diabetes Insipidus: Medications and Sodium Levels

Anyone with Diabetes Insipidus (DI) or anyone out there that has Complex Central DI? I am wondering what meds you take, What your struggles are? My struggle is with me forcing to drink a lot of water to make sure my sodium isn’t too high. (160’s been the highest for me) I also cannot lower sodium too fast bc once in the hospital, the nurses did with IV, and i was an 8 year old hallucinating, very scary. Average sodium is 155ish for a “normal” level. Major med i take is Desmopressin. Used to take nose spray but endocrinologist changed it to tablet to be more effective. I am on a bunch of other meds as well, but Desmo is one i NEED.

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StripedTurtle

2y

What?! My endo said the nasal is more effective over the pills. DI is by far my most inconsistent and frustrating conditions. I feel its always up and down and all over the place, so frustrating!!
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rezz_berry

2y

I did the nose spray age 8-10ish so maybe it was because it was done incorrectly? Ex. not blowing my nose, ect lol, but my endocrinologist doctor changed it and i’ve been taking the pill for years and it has been working well! But yes it is extremely frustrating, growing up with it for about 15 years i am totally over it
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RoseVirgo

2y

My biggest struggle is managing my water intake,as I don’t have a thirst mechanism.
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rezz_berry

2y

Ugh same! I really have to force myself once i start getting dehydration symptoms
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RoseVirgo

1y

I take desmopressin as well.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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