Di Since 2, Living In Bay Area, Ca

HI all, I am so glad to have found this blog site, as there are many changes in my story lately.
I was diagnosed at 2.5 yrs and took DDAVP Nasal Tube inhale till I was 8. I am now 33. Btw 8 to now I have been able to manage my thirst, bathroom usage and just adapt, as it was better then the side effects the medicine was giving me when I was young. Huge pounding headaches, really overweight,blood coagulating, couldnt run, and more. My mom at the time( I was 1 in 7 children in the U.S Diagnosed at Stanford Hospital in 1982)- decided to pull me off the meds and try herbal glandular support. Which I must say got me through most of my life. By the grace of God, I managed my huge water intake, and urinating needs, and bladder distension (to point where I couldn't pee during my pregnancy for about 2 months and needed catheters). Same experience as others drinking a 2 liter in an hour was no problem, and peeing it out in the next 2 hrs no prob either. Untill just recently. Now, I am getting numbness, tingling, headaches, shortness of breadth, and tingling in my head. I have to sip on a 8 ounce cup of water and sleep elevated. Tired, no exhausted all the time and getting dizzy where I feel like I am going to faint. Joined a new Med group, and GP all said it was anxiety. Uhm, NO! Finally saw an endocrinologist who referred me to Dr. Katznelson (Top rated Pituitary Specialist on West coast) and will be following up soon. For now I have done blood work to determine kidney functions and more, and will be doing a 24 hr urine collection and then the standard water deprivation and MRI with Contrast to check my Pituitary. I feel like I have put all these memories of testing behind me and am struggling with thoughts of getting hooked on the need to be on medication as I have managed until now. I guess it would be helpful to hear of what symptoms people experience w/o the DDAVP, any similarities and being more normal in the sense of drinking bc your thirsty vs habit?

The endo was great, reassured me that there was more advanced types of med I could take injection pen, tablet and nasal spray. What have been some experiences you have all felt once starting the meds? vz how it was before? I want to feel normal and it seems alot of people manage with the meds normally. I would like to take herbs vz the DDAVP or try both together but not sure how they will interact, and will discuss with my endo 1st, any other experiences with Doctors suggesting alternate remedies to"feed" the pituitary?
Thanks!

gvdiscua gvdiscua
31-35
3 Responses May 6, 2012

I'm also 33 in the bay area with central DI. I also saw Katz Nelson. Ddavp does not work for me. I'm still thirsty and need to go to the bathroom. It also makes me extremely tired. Katz Nelson told me to not take it if it makes me feel bad, he tried two other medicines that did nothing and that was it

My Diabetes is also a result of head trauma. I have taken DDAVP for 27 years now. I could not live without it. It seems strange to me that anyone could have DI and be able to control the side effects enough to not take the DDAVP. I have taken the nasal spray, injections and the pills. The pillls were not an effective treatment for me. The nasal spray works the best for me. Good Luck!

My CDI is a result of head trauma. I will die without DDAVP so I have never had a choice but to take it. My life is pretty normal. I'm no different to my work collegues and no one would know if I didn't tell them. I feel really lucky to have had this medication available to me for the last 35 years. Apparently I was the 4th person in Australia to survive this condition. I have had 3 children and a wonderful life - thankyou science :)<br />
Good luck with your journey. I personally find the DDAVP fantastic although I do have a few of the side effects it can produce. But thats not much of a cost for surviving :)<br />
Cheers.<br />
Di.