I've Had Cranial D.i For 2 Years? And Still Struggld Yo Deal With It?

I just found this group online and am relieved there are others with this condition. I have no idea how I got this, all i know is that ive lost weight due to this and I cant go 1 night without getting up to go for a pee there my 2 major problems. It try and lead normal life im a scaffolder and i like to play football and go gym, but im not sure if its wrong that I do this as i have DI? I take desmospray as its the best nasal spray feels like its the strongest as i tryed others, i wanted to take tabs as its easier but they gave me bad headaches and a bad stomach. Does any1 manage to get a full nights sleep? And struggle to put weight on? Please could you get back to me on this because Ive never spoken to any1 wuth the disease?
DanH84 DanH84
26-30, M
2 Responses Jan 21, 2013

My daughter just got diagnosed with DI at age 4. She is having the same problems. She cannot make it through the night without using the bathroom and it took her almost 6 months to finally get back to her normal weight after the diagnosis. I make sure she drinks a lot of whole milk and eats her biggest meal in the afternoon which is the best time for her because the DDAVP has not gotten out of her system yet. She is very active, but I am not sure how the summer will go because this is her first summer with the disease. She also got stomaches and headaches from the pills, but eventually they subsided. The spray didn't work for her so that was our only option. I hope this helps.

My daughter was just diagnosed with CDI. She is only 3 weeks old. We just spend the last week in the hospital where she was diagnosed, after thinking that she was just suffering from dehydration and weight loss due to an inability to breastfeed correctly. After two days of trying to rehydrate my baby girl we found that her sodium levels were remaining high (157) they were 165 when she was admitted. I'm looking for other parents with children suffering from this disease. I'm scared for her and it would be nice to have people to talk to who understand my worries.

U probably got headaches because you took your pills and felt fine, but still needed to drink your water. The pills work too well, I found. I take only a quarter at night so I can sleep. During the day, I drink warm water. The body absorbs arm water better than ice cold water, which just makesme thirstier. I run miles, and play basketball for 1.5hrs straight. No problem. Just sip water between games. You'll figure your meds out. Don't worry. :) take care.