Newly Diagnosed And Struggling

I am really interested in hearing if anyone else has been through the same problems as me. I was diagnosed with DI in November 2011 but the doctors are still unsure of what i really do have. I went through all the usual issues of drinking up to 24l per day and getting rid of all of it night and day. I have also been passing out during the day and ending up in hospital. I have been prescribed both tablets and spray but my doctors seem fearful of me taking too much DDAVP and causing further issues. I am constantly exhausted and very depressed. This has been the worse 6 months of my life but i a very fortunate to have both supportive employers and family. has anyone else been through this?
cheers

james
jamesfloyd jamesfloyd
22-25
5 Responses May 15, 2012

Thank you all for your comments. It is really great to have so much support out there. Its a fantastic feeling knowing that you are not the only person out there struggling. Also just as a quick mention to anyone struggling in london- Dr Bano and her team at st georges hospital have been nothing but amazing, seeing me constantly and trying anything they can.<br />
<br />
Just as an update- i have been diagnosed with genetic NDI but with partial CDI. Apparently this is extremly rare and almost seems impossible to treat. (by the way i am one of those old english familys who havent moved out of the same area in conrwall for 11 century’s). Has anyone had experience of taking hydrochlorothiazide and amiloride as they just seem to make me go to the loo the whole time!

Finally, a semi-recent discussion!<br />
Hey James,<br />
Let me get to the point. This illness is terrible. Endless cups of water, endless hours of sleeping your life away, endless dreams of a better life. I am 21, I was diagnosed when I was 10. As a girl at age 10 they don't tell you that you won't be able to have children if you don't develop properly. They don't tell you that the depression is common. They don't tell you that it is so difficult to lose weight, it's ridiculous. Depending on the type of medication you are taking the side effects differ, you need to look into this. Honestly, I can't count the number of times I have thought about ending my life. Some days, are.. so much worse than others.<br />
I'm sorry, I told myself I would keep the negative side out of it. Anyways, thanks to incredible doctors and faithful support systems, I am doing a little better. I am still irritable and exhausted and thirsty. Everyday is like a trip to the Mojave desert, awful.<br />
Anyways, I wish you the best in your endeavors, James. You are never alone.<br />
Sincerely, <br />
<3

I'm newly diagnosed and luckily my condition is not as bad as some. I output 3-5 liters a day and intake about the same. My nephrologist says that I'm keeping up with my water but at the same time my potassium can get low if I don't keep a diet high in potassium constantly. Also dehydration is always right around the corner if I'm not careful.

My DI is attributed to taking Lithium for years (which I've now stopped). I haven't had any indepth tests but the doctor has me on water restriction and a low salt diet to see if it helps restore any function. Next step is HCTZ to control the flow.

I've been suffering with this for 4 weeks now and I can't tell you how many times I've wanted to take my own life. It's depressing to suffer from a condition that no one believes is real. I can't tell you how many doctors told me it was all in my head and that my bipolar condition was to blame. It seemed as though no one was listening.

I hope for better days but realize for now it's more of the same. Drink-&gt;expel-&gt;drink-expel.

It's hard for me to keep my head out of the negative space. I try to focus on things that are good in my life (work, family, etc). One of these days this condition will get resolved (i hope).

James, my name is Pat and I have been living with DI since I was 4 or 5..and I am 27yrs old now. The best way I have found to deal with this is taking my Desmopressin acetate pills 3x a day. It really is a pain if you dont have your meds and you are in a car...cause you are peeing every 15 minutes. Sometimes I get frustrated and I think about how it really sucks. I get really anxious sometimes if I think I lost my medicine and (I will start noticably sweating bad) Thanks god my girlfriend understands and she calms me down every time. Anyway, if you wanna chat or have any questions I would be more than happy to talk to you. Hang in there dude.<br />
Pat

Hi James.<br />
I have had CDI for 35 years. I take DDAVP every day and will not survive if I dont. I don't have the symptoms or difficulties you describe although if I dont take my medication when it's needed I get the violent water works and become irrational. There is a facebook page "Got diabetes insipidus?" which has many members. Maybe some one there can be of assistance.<br />
Good luck. Chat anytime :)<br />
Di.

James, <br />
Although I have had DI since little, about 3 months ago began developing all these new symptoms that have baffled the doctors as well. I get very dizzy, head feels like bowling ball, tingling in my head around my face, but not numb were I cant feel anything, and then very exhausted as well. My face is constantly flushed after eating and drinking and I have had numourous tests and more to come. Docs are all still trying to figure out what my issue is as well, after 3 ER vistits and tons of appts. I am hopeful that its all related to DI, but am not on DDAVP yet. Have you noticed a difference once begining the medicine? does it calm your thirst and do you feel like you need a tablet more and more? I am concerned about this as I have not had to be dependant on this. I hear you about the depression as it is a battle to deal with. Stay positive as all this is develping, otherwise all they will try to give you is anxiety meds or depreession meds, but not really working on the real issu. I wish you luck with this journey on your health.