Diabetes Insipidus Member Introductions

Please take a moment to introduce yourself to the community. Everyone here has something to share about Diabetes Insipidus. For the discussion boards, we ask that you keep your full name and location private.

surgical removal of pituitary gland 10 years ago i am 48

41 year old male diagnosed with Central DI in Dec 2006.

My daughter has been diagnosed with DI, and EE.

40 year old male with Idiopatic CDI from birth

37 yrs old, recently diagnosed with central DI, trying to learn more about it.

I’m currently residing in Ilsan, South Korea which is just on the outskirts of Seoul. I was diagnosed with DI at the age of 16, 3 and a half years after I was diagnosed with a histiocytosis tumor that was surgically removed. I’m doing well and recently gave birth to twins - a boy and a girl.

Mother of Ryan. Ryan is 18years old and has been diagnosed with idiopathic CDI last September.

I get online very little. I have had Diabetes Insipidus since birth and two of my three sons also have it. Was one of the original ‘testers’ of the first start of DDAVP in the late 60’s.

I have familial Diabetes Insipidus

29 yo old male, New York City, diagnosed with Central Diabetes Insipidus at age 12. No known cause for CDI. Living and loving life… work in finance and teach group fitness classes. Taking DDAVP.

I’m a girl age 12.
I’ve central d.i. since I was 8 years old.

I have a brother who is 62 with diabetes and wants to retire due to poor health. He is afriad that he will not be able to afford medication just with his Social Security

Hi :slight_smile:

Mom to 4 beautiful children. The youngest, Chance has a rare brain disorder resulting in diabetes insipidus among many other issues.

I have diabetes insipidus, and used to enjoy the Yahoo site, so I am hoping to reconnect for information and comradery about our issue, here!

I have a tumor on my pituitary and have developed diabetes insipidus from it.

I have a daughter that is 12 that has DI. We have had her for almost 2 years now. I need information it seems daily.

I have Central Diabetes Insipidus. I live in Alabama and I am 46 years old. I was diagnosed about 5 years ago. According to my doctors there is no know case for the posterior portion of my pituitary glad to have ceased to function but, it did. I on the other hand, think there must be a connection between the petechial rash I found on a portion of my forearm one morning and the DI because the rash appeared two days before the DI was triggered. I take .2 mg tablet of DDAVP when ever I need… sometimes as soon as 5 hours apart and other times 14 hours apart. I would love to find an in-home sodium monitor. It would be so helpful to know if my headaches are from too much or too little sodium. I have 3 to 4 days a week with bad headaches. I have found that drinking Gator Aide everyday really helps far better than any other drink, including water. I look forward to learning from others with this condition and I hope I can help someone with my experiences.

Hi Artistatheart:

I have had Diabetis Insipidus since birth, and am now 62 years old. I use
DDAVP nasal spray twice a day. I have found it worked the best for me as
have used pills and shots previously. What I have noticed is that if my
medicine runs out for very long, I usually get a very big headache as well.
I put it down to withdrawal from not having my medicine in time but it could
also be from low sodium because I pass large amounts of water every hour
without my medicine. Hope this helps.