... put it like this... I know more about insipidus diabetes than my "specialist". Do I get frustrated.. Yes.. I can't get answers. Nobody understands me. Its already to a point that my family members tell me go drink water somewhere else. Sometimes I just want to get the gallon of cold, icy water and drink it all. I cry because I'm tired of the situation. I reach to this group for advice and to know if I'm the only one going through this?
Hi I hope its getting better for you, you said specialist, hope you have a GOOD endocrinologist ...
They can help you stay on top of this, do you take Desmopressin, this is what helps me control the thirst... from urinating to much... the thirst is what helped them know what was wrong originally, It has been bad, I get up also in the middle of the night to drink, and have to have water with me always, but the pills, really help that, now I they have changed the brand, and they are not working as well, looking into the exact name, and manufacture, so I can ask doctor for a script just for those, so I can feel better, started losing to much water again, getting night cramps and all, so know the new kind is not working as well, with this type of thing, we really do need to be into our self care, and monitor what is going on, they can help, but we need to journal, or do what we can to track the symptoms, wish you well, in your journey..
It's not easy. It's very hard to find an Endocrinologist that has experience treating Diabetes Insipidus. The unquenchable thirst is the worst. Are you taking DDAVP (Desmopressin)? Did your Doctor give you a guideline on fluid intake? Try sugarless hard candies or gum , it will help. Try to avoid the sugar. We were very fortunate locate a great experienced Doctor in New York, it was life changing for him. Good Luck and Stay Strong. Plus if your not satisfied with your current Doctor keep looking, they are out there.
I just posted my question, and we have A LOT in common. I crave all things WET. I drink 1-2 gallons of water a day, along with a lot of Seltzer water, when I need something fizzy.
I subsequently pee 20-30 times a day, and travel is a bathroom nightmare.
Don't know what I can say to encourage you, except... you'll learn to live with it, AND... IGNORE THE IGNORANT!
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