New To DI...caused by Pituitary Tumor. Any Helpful Tips???

Diagnosed with Diabetes Insipidus for 6 1/2 months now...I take Demopressin Acetate every 12 hours. Trying to get used to this new life now, people don't realize how much this can change your life...having never ending thrist and urination. Does anyone have any helpful tips???
JtGreene87 JtGreene87
22-25, F
4 Responses Jan 9, 2013

I can empathize. I am 45 & have been living with DI since I was 29. Ice cold drinks seem to help me. I also take Desmospressin Acetate .2mg 2 tabs 3x a day & for the rest of my life.
At 29 I was diagnosed with a cancerous brain tumor that destroyed my Pituitary, Thyroid & Adrenal Glands. But I am alive.

I take a quarter of my pill at night so that i can get good sleep. I found that taking a whole pill makes me feel very uncomfy in the chest. I think the amount depends on your body.... Alter your dosage if a quarter is too much or too little. During the day, I drink warm water... Helps your body absorb water... Better than cold water. Stay away from sodas and any sort of sugar drinks....have a fruit instead if you crave a soda. Oranges are good. Take care :)

I have been living with DI since I was 2012 and was diagnosed with a brain tumor that destroyed my Pituitary, Thyroid & Adrenal Glands. If I take half tablet in day I start feeling sick but if I take quarter I feel all right but drink lots of water. I'm still not sure how to manage my thirst. In the night I take half tablet and sleep well and feel all right. If I drink 4 to 5 liters in a day is all right for me... I'm very confused about one thing that if you drink so much of water your kidneys have to work really hard or is it normal to drink 5 liters in a day.

Hello,
I have had DI for 3 years now. When I was 23 I had a pituitaty tumor removed and since then I have needed to be on many different medications including Demopressin. It is hard to adjust to and unfortuantly the constant urination and thirst doesnt get easier but you do learn to get use to it. My friends can't believe the amount I can drink and go to the toilet, If only they could feel the thirst that I feel just for one day then they would understand!
I am 26 now and recentley married. We plan on starting a family in the next year or so, are there other females out there that have had any trouble getting pregnant because of having DI? I am glad I went searching for this group. I think a support group is exactly what I need, no one I talk to even knows what DI is!

Hello I'm Tulip!!! I have been living with DI since I was 2012 and was diagnosed with a brain tumor that destroyed my Pituitary, Thyroid & Adrenal Glands. If I take half tablet in day I start feeling sick but if I take quarter I feel all right but drink lots of water. I'm still not sure how to manage my thirst. In the night I take half tablet and sleep well and feel all right. If I drink 4 to 5 liters in a day is all right for me... I'm very confused about one thing that if you drink so much of water your kidneys have to work really hard or is it normal to drink 5 liters in a day..... Now the good news is I'm pregnant & having twins. Don't worry because of DI there is no trouble in falling pregnant. Try for few months but will suggest you if can't fall pregnant consult someone at fertility clinic for a second opinion.
Can you suggest me how you control your thirst and what dose you take of Minirin.

I just joined this group, but I was diagnosed with cranial DI at age 2.5....I've been pretty lucky in that I've led a very normal life with no major complications from the condition. My biggest piece of advice is "remember to take your meds"!!. I can't tell you how many times growing up I would go somewhere for the night and forget my desmopressin nasal spray, what an awful, awful night it would be, guzzling water, insatiable thirst, and up every 30 minutes peeing bucket-loads! Having this condition is all I've ever known and to be honest, I consider myself lucky because it could have been so much worse. However, I imagine adult onset and diagnosis must come as a real shock, and be much harder to deal with when you're not used to it. :(
My main reason for seeking out this group was to ask about people's experiences with pregnancy and childbirth, but if you have any questions or just want a chat, feel free to get in touch! Best of luck with everything! - Roxy

Adult onset and diagnosis is a big shock. It was to me today when the doctor told me I had DI. I mean for the last 4 weeks I've been suffering symptoms of DI but to finally be told it's real kind of sucks. I only hope the road gets easier to travel.

My son was born 3 months premature and is now 3 weeks adjusted. He was just released from the NICU last week. He had been battling central diabetes insipidus. Sodium kept going up high when he didn't finish his bottles so they had to give him a gastronomy button as backup. Did you ever try tablet form of DDAVP? If so at what age and did it work for you? Do you remember life as a child with this? Could or did you travel? How long does the nasal spray last until you have a breakthrough void? I have to give him 2 injections everyday. Please tell me more about your life growing up

My daughter was just diagnosised with DI at age 4 and she is now 4.5 so as a parent we are trying to adjust as well. My daughter is on the tablet form of DDAVP. We tried the nasal spray for her and it didn't work at all. She had difficulty inhaling it. We crunch up the pills and mix it with a little bit of juice and give it to her on a spoon. We were told not to travel out of the country for the first year until we get her regulated on her med. This has been very difficult. Sometimes the pills last 15hrs. for her and other times it only lasts 8 so it is difficult to get her on a schedule. Our concern now is that before this she was potty trained during the day and at night and now she is not potty trained at night and every once in a while has accidents during the day once the meds are out of her system. She is not able to completely verbally communicate with us how she feels sometimes so I joined the group to get info from adults who have it who can help me understand my child better. I hope this helps. Feel free to get in touch if you need some support from a parent whose child has it even though I know our children are at different ages.

I remember having a nocturesis alarm (for bed wetting) as a child because I found it really hard before my medication was stabilized and I'd often have a full bladder halfway through the night! The alarm helped a lot, and I grew out of bedwetting by about 6 or 7, although I did occasionally have to get up through the night. The biggest issue when I was growing up was that the desmopressin tablets didn't exist, and the nasal spray was unstable at room temperature, and always had to be refrigerated. That caused lots of issues when traveling, we always had an esky (like an insulated cold box, if you're not from Australia they're probably not called Esky's) and mum always had to ring wherever I was going in advance to make sure there was a fridge to keep my meds in! I also remember her having to come along as a "parent helper" on one of my school camps because none of the teachers were comfortable taking responsibility for my meds and making sure I stayed on schedule... I probably wasn't very impressed with that (no one else's parents came on school camp!) but looking back it must have been really hard for my mum to get time off work etc., just so I could go to camp like a normal kid. Luckily, by the time I was about 12 the desmopressin formulation was changed a bit and stabilized so now it doesn't require refrigeration, hooray!!
I don't consider that this disease has had a hugely negative impact on my life at all, but maybe that's because I can't remember not having DI, so it's just a normal part of life for me. There's never been anything I haven't been able to do because of DI, and I count myself lucky that I didn't end up with the numerous diseases out there which are much, much harder to live with. I hope that your child will be the same, and that once he's stabilised and has a good routine, he'll have a healthy, normal life like any other kid. There's no reason (that I can tell from your post), that his life should be any different from her peers, except that she needs to take medication regularly and understand his fluid intake. When you grow up with DI, it really becomes second nature, and it's not a big deal at all (for me, anyway.)
The next step in my life will be having children, and I hope that like other mums with DI, I won't have any issues relating to this disease. Fingers crossed!!!
Best of luck to you and your family, wishing you all the best. :)

Is your daughter in school yet? Do you wait till she has a breakthrough before you give her another dose? Does she tell you she feels bad when her medicine wears off? How long does it take for the pill to kick in? My son gets the injection and it works instantly.

Glad to know you can live a normal life. Do you carry your nasal spray with you all the time? How old were you when you were diagnosed? How much fluids are you allowed to drink each day? Do you urinate throughout the day or just when your medicine wears off?

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