Central Diabetes Insipidus

Does anyone here have this, or know of someone that does????

I was just diagnosed with it, this past week after years and years of strange symptoms, being diagnosed with something else, or having my symptoms ignored. I have spent years and years suffering with pain, cramping, muscle twitching, anxiety, paranoia, joint pain, muscle pain, increased thirst & urination to name a few.

I have been diagnosed with Kidney disease, Fibromyalgia, anxiety, PTSD, Menopause, Myofascial Pain Syndrome, COPD, and Migraines to name a few. Some of these I know are real diagnosis, such as the PTSD and COPD, but most of them now, I wonder.......

I have been put on a drug called Ddvap, it is a synthetic hormone to replace the one that my Pituitary gland has never produced, after 55 years of living with this, and not being diagnosed. I feel it's working well, and many of the strange symptoms are gone, but I need help with an issue.

I have always drank a lot of liquids, due to this condition, Although at the time I just thought I drank a lot. Now, I am told by my Dr's to NOT get dehydrated, but to be careful on how much liquid I take in, because I can get water intoxicated, due to the fact that this drug is an Anti Diuretic...... My problem is.....I don't know what is enough to drink, when I should drink, and when not to. My pituitary gland never fully developed and it is the gland that also tells the brain when you are thirsty and when to drink......

I had to call my Dr yesterday, because I became really dizzy, and sick to my stomach. Not sure if I was coming down with something, if I was dehydrated, or if it's a side effect of the Ddavp. He asked me to drink a lot, and then to see if I felt better. Which I did, and I did feel better. So I think I was dehydrated. So HOW do I monitor my intake of water, and HOW do I know when to drink, and how much????? This is proving to be NOT an easy task!!!!!

As a suggestion, how about posting this also on the Diabetes board here and hopefully between this board and there you might get some answers. Good luck.