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rezz_berry

700d

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.

Top reply
    • RoseVirgo

      572d

      I take desmopressin as well.

    • RoseVirgo

      572d

      I take desmopressin as well.

    • RoseVirgo

      592d

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

      • rezz_berry

        582d

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

    • StripedTurtle

      700d

      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!!

      • rezz_berry

        700d

        @StripedTurtle 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

        • Peanut1T

          601d

          @rezz_berry I've lived with Diabetes Insipidus since I was 7 and I took the spray in my childhood, but it kept giving me staph infections and my endocrinologist changed to the DDAVP (Desmopressin Acetate). I'm in my 40's now and have to take 4 a day. It works much better for me, than the spray did.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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