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My diabetes insipidus journey

I'm a 34 years old and was diagnosed with central diabetes insipidus in Sept 07. This diagnosis followed a prolonged headache (about 2 weeks) and fever (10 days) after which I became extremely thirsty and could hardly sleep for getting up in the night to go to the bathroom!

Unfortunately the doctors have been unable to pinpoint the reason behind why I suddenly developed this rare illness, which I understand is likely to be permanent. I now take desmopressin nasal spray about twice a day. I continue to feel very tired and sleep 10 hours a night.

I'd be very interested to hear from anyone else out there who has had a similar experience so we can compare notes and exchange coping tips! I'm fine when I have my spray with me, but am dreading the day when I forget it and am forced to return to the drink - pee - drink cycle.

195 Replies

  • nickys1903 nickys1903

    Hi I am 39 years old and was diagnosed with diabetes insipidus in June 07 again there has never been a reason indiacted as to why this became apparant. I did not have the headache but was exhausted like you say from having no sleep as I needed to keep getting up. I was admitted to hospital where I becamevery unwell and it did take me a good 6 months to get back on my feet. I hope that you are now feeling better as I note it has been some time since your post. Do you still take desmopressin spray my endocronoligist changed me to the tablet Last year and I have found these a great deal better than the spray as they do not need to be stored at a certain temperature and you can leave bottles every where so they are always accesable where ever you need them. I would love to hear back from you as to how you are now and how you are coping as, as you say it is a very rare condition.

  • Guest Guest

    Hi Nicky - good to hear from you! I am feeling a lot better now thanks - still on the nasal spray but was interested to hear that you find the tablets better - how many do you take per day? It took me about a year to recover fully I think - it's amazing how much it zapped my energy. Like you I have bottles of meds everywhere - in the car, at work, in my handbag etc - to ensure I'm never caught short! I hope you are doing well - would love to hear back from you.

  • david27179 david27179 Guest

    Really interested to hear you story, particularly relating to the headaches. I was diagnosed in 2000 aged 40, I had a headache for 6 weeks. Was diagnosed after having the water deprivation test and was put on the nasal sprays (two puffs at night and two in the morning) and have not looked back. Cant say I ever had the exhaustion problems until after the headaches when I started to drink and pee for England, put that down to the lack of sleep as was up and down all night. Did you have the thirst/peeing issues at the same time as the headaches or after they had stopped? My headaches stopped before the other problems started. Had the usual scans to ensure no problems and have been happy on the spray ever since. Occasionally its good to miss a dose of the spray to flush yourself through (I do often forget to take it would you believe at night - arghh). Over the last 3 or 4 years have started having issues with kidney stones, probably not related but will be making enquiries just in case.

    • melloannie melloannie david27179

      Hi david the kidney stones have nothing to do with the disease. .. i am glad i are feeling better.. its so nice to find this site, i live in the usa and there is only 3 of us in new England with the disease. i have never met anyone with it and as you know, no one knows what where going through and feeling... annie

    • david27179 david27179 melloannie

      Thanks Annie, I wondered about this because I know I dont drink enough sometimes. I, like you, have never met anyone else with DI and I agree its good to talk with others who understand. I do go for an annual check up at the Endocrine Clinic but honestly feel that is more for their benefit than mine. I dont come on this site too often but check it out now and again. With that in mind I just noticed that you commented on an earlier post of mine about medical exemption cards. Sorry, yes that is the UK. Its one 'blessing' of this condition for me, its a qualifying condition for one of our exemption cards which means I dont have to pay for prescriptions so my medication is free. 

    • melloannie melloannie david27179

      I would live to talk to someone that has DI like me ... never got to and would love too.. do you have a email address or facebook? People say they understand but nobody really does except for us... i would love to communicate with you. I am on Facebook annie furtado hope to hear from you..

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

  • david27179 david27179 Guest

    Should have said that although I have regularly raised the issue of the 6 weeks of headache in relation to a possible cause it has always been dismissed as not relevant. Must be something in it though.

    • linda28225 linda28225 david27179

      Did your doctors find out the cause of your diabetes insipidus? I had a benign tumor on my pituitary stalk and I had several diverse symptoms before my doctors found out what was wrong. To remove the tumor completely, they had to sever the pituitary gland stalk and I have had diabetes insipidus for over 24 years. If you have a tumor like that you wouldn't have as many symptoms as I did, I'm assuming you are a man. I stopped having periods and my right eye vision was fuzzy. I didn't have a constant headache but I did have more before the surgery.


    • naomi 64331 naomi 64331 linda28225

      Hi Linda. I had surgery to remove a pituitary adenoma 8 weeks ago and since then I have been in hospital three more times.

      I developed acute DI after the first operation and was given an infection of vasopressin. I was sent home and within days was back in hospital with acute siadh (hyponatraemia). I then also haemorrhaged from my operation site. Having been given strong saline and a blood transfusion I then had a csf leak which my neurosurgeon refused to acknowledge even though I had a sample that was positive for CSF. Eventually he performed a second operation to correct this. Post op I fell back into Di and again he ignored it. It was the nurses who ordered the correct tests. I was then given another injection of vasopressin and sent home. At home I drinking and loosing over 4.5 litres per day. The endocrinologist put me on vasopressin but the dose was so wrong for me that within 2 days I was re admitted for the fourth time with fluid overload. With very careful care and choice of dose I now home and stable but my endocrinologist thinks that the situation is permanent now. Can you share your experience of this situation in the long term with me? I am a separated mum of 4 kids and I need all the information I can get to manage this. I would also be very interested if you know of any diagnostic tests such as MRI scans that can help me to clarify the status of the connection between the posterior pituitary and the hypothalamus as my endocrinologist thinks it has been severed.

      Many thanks for reading my message


    • linda28225 linda28225 naomi 64331

            In my case, my surgeon knew he had severed my pituitary stalk because my tumor was behind the pituitary gland and I had to have a craniotomy. He could see when it happened. The roots of the tumor had grown into the stalk so he had to cut a portion out to make sure he removed the whole tumor.

           I was diagnosed originally, in the hospital after I had gone back into intensive care after my surgery. The second admission to the hospital was one day after being released. The day I was released I was having psychotic thoughts but I didn't tell any one and of course they seemed reasonable at the time. During the night I had a seizure and I was unconsious for a day or so. The doctors were never sure if it was from dehydration because of the diabetes insipitus or from the hematoma that formed from the surgery. They just measured my drinks and urine. Unfortunately, they didn't consider all the watermelon I was eating. Probably about a whole watermelon a day as my mom was bringing me big bowls of it two or three times a day. That caused confusion but eventually got it worked out.  

           I have taken desmopressin (DDAVP) in nasal spray.form for over 24 years and never had any problems with it. My first endocrinologist told me to wait to take a dose until my urine was clear. I ended up waking up often in the middle of the night. My current doctors are not aware of any problems with overdosing and they tell me to take it every night just so I won't wake up. I still always try not to take it during the day unless I need it. I don't think I have ever had an injection. 

  • david27179 david27179 Guest

    Hi Linda, no they could not find a cause. I was concerned about the posibility of a tumor but have had two or three scans now spaced over a few years and nothing has been found. Yes I am a man and have always considered myself to be very lucky as I have not had any of the complications that you and other DI sufferers appear to have had, well so far anyway. I know I seem to keep going on about the headache but I had it for six weeks before any other symptoms (thist/peeing) started, cannot believe that there was not some link.

  • david27179 david27179 Guest

    Just a thought, does everyone have a medical exemption card for free prescriptions? DI is a qualifying condition for this.

  • canadianhey canadianhey Guest

    Hi there everyone:

    Just thought I'd share my experiences too because as we know this is a rare condition and where I live there is nobody to talk to about it... I'm very thankful for this group smile

    My own DI developed about a year after I was diagnosed with Langerhans Cell Histiocytosis (LCH). The LCH is even more rare than DI but the two will often present together. My LCH symptoms (lesions) were all in the lower body, but when I developed DI, I was told that LCH will often affect the pituitary and cause DI. There is precious little known about LCH, so it's not really understood how that disease works, and how it causes DI -- but it does. 

    So after the DI diagnosis I had an MRI (brain scan) to look for symptoms of LCH on the pituiary (lesions or tumour) but they found nothing visible. That was about six months ago. Now I'm scheduled for another MRI in two weeks. The oncologist who treats me for LCH said that sometimes a condition like DI can precede the actual visible evidence in the brain.... This next MRI will be interesting to say the least.

    So back to the DI. For me it seemed to start all at once. Almost like a switch was flicked in my brain overnight. All of a sudden I noticed that I was terribly thirsty. Drinking 20-25 litres of ICE water per day. Always needed a bottle of ice water at my side in the car, while shopping etc. Up to pee all night and like others this caused a lot of sleep deprivation and also curtailed a lot of regular activities during the day. An avid walker for excercise, I found that I couldn't go for walks unless there were publich washrooms or discreet bushes along the way. 

    My regular doctor suggested I "suck on pastilles" to alleviate the thirst. OGM, how naive some doctors can be. The word "thirst" is so misleading. It's more than regular thirst, isn't it? For me the dry mouth feeling was so strong I was afraid I'd choke. Then when I finally saw an endochrinologist, he suggested a water deprivation test, done at home for 18 hours. I began to cry in his offce. I NEVER cry, but I just felt that to go 18 hours without a drink would kill me. I felt that I'd need clinical supervistion. My tears where not taken seriously, in fact this had a negative effect. I was terribly stressed about this test but then I happened to do some other blood tests for this same doc and he said my sodium levels were so high that he didn't need me to do the full water deprivation test. We did a modified version of the test which lasted about 8 (difficult) hours and gave him the info to confirm DI.

    Now I use Desmopressin nasal spray 2-3 times per 24 hour period. I started out doing it just twice a day but found it starts to wear out after about 8-9 hours. I try to use just two doses per 24 hours unless I'm out of the house atttending a function where I don't want to spend too much time running to the toilet, in which case I'll dose twice during the day and once at night. 

    I live in Canada where this drug costs me about $100 per month, so if I can get away with two doses per day instead of three that makes me happy.

    Sorry for rambling on but I feel it's important to share, especially as there is a connection with LCH and DI which has not been mentioned here yet and might affect others DI patients.



    • david27179 david27179 canadianhey

      Interesting to read your story and like many others here I can certainly relate to a lot of what you are saying. I guess you will have had your follow up MRI by now, I hope it all went well for you. I too find that the spray does not always last the required time so do on occasions 'top it up'. My DI seemed to start pretty quickly too, I just suddenley realised that I was having to take a drink to bed and that I was up and down to the toilet during the night. Fifteen years later and so far there does not seem to be any other problem.

    • Stefanie90589 Stefanie90589 canadianhey

      I know exaclty how you feel!!! You are the only person I know that had Histiocytosis (LCH) like I did 21 years ago when I was 2 years old. My pituitary was damaged because of this disease and now my body does not produce the hormone vasopressin. So now I take the synthetic hormone like everyone else on this forum called Desmopressin! It's so nice that this forum exists because I don't know anyone who has this and knows what I'm actually going through in my day to day life!

      I live in America in Minnesota actually and I was lucky I lived close to the famous hospital Mayo Clinlic. When I was 2 years old my mom noticed my symptoms of DI but she didn't know what that was just yet. I was constanly thirsty all the time and she noticed my diapers were always so soaked! My mom even told me I bit her one time because she didn't give me my milk! (sorry mom!!!). Since she had a baby before me she noticed that my thirst and excessive urinating was not normal. So she took me to the hospital and the nurses told my mom there was nothing wrong with me and that I'm a normal baby like the others. So she took me home and my symptoms were still the same so she took me back again and the nurses still said there was nothing wrong with me! By then my mom was p*ssed!! She new that there was something wrong and she demanded them to do some testing. So finally they did some tests and discovered that I had Histiocytosis. To actually confirm this they had to take a sample from my skull. I had developed lesions in my legs, arms, and skull from the LCH. Although this disease is not related at all to cancer they treated it like cancer. I had to go through chemotherapy when I was two years old to get rid of the LCH and this helped! Unfortunalty LCH had already damaged my pituitary gland to the point that vasopressin is no longer produced and I developed the DI.

      Now I'm 23 years old and I'm happy just to be alive! My life could have been ten times worse if it wasn't for my mom being so persistant when I was a baby! (Moms know best!) I mean if she discovered it later than that I probably wouldn't have gone through puberty or even survived.

      I only have DI from that experience but it really is a sucky thing to have. I always make sure I have a bottle of desmopressin everywhere! In the fridge, in my purse, at my bf's house, and at work because I dread the day I forget my medicine and I have to go several hours without it. Especially when your in class or at work and people are wondering why you are disapearing once every hour and to use the bathroom! When in doubt always keep an extra bottle somewhere smile

      I also want to mention that if you do happen to miss your desmopressin dose make sure you still drink plenty of water because if you don't you can become severely dehydrated and then it becomes much for dangerous. When I was younger my parents told me I couldn't drink anything until the desmopressin kicks in but they didn't really understand DI very well. Vasopressin helps to regulate your fluid in your body to keep everything working and stable. When you miss a dose of your desmopressin everything can become unbalanced in your body so it's important to take the medication on time and don't skip/forget to take it!

      Thanks for sharing I'm so happy I found someone else who went through what I did!

    • leannlittleton leannlittleton Stefanie90589


      So I had LCH when I was 10 back in 2005. Now at 21, they found symptoms of DI. I started getting symptoms in July. And then started medicine in August. The only reason I was diagnosed so quickly was because of my previous LCH diagnosis. However, since I’ve been on desmopression I have not seen a doctor due to insurance complications. I live in California. I got a MRI on 8/01 and it was clear. However it’s been 3 months since symptoms began, the doctor who diagnosed was more fascinated with me than anything because of how rare everything is. He said a tumor show grow now. (Potentially I have it rn) Since you first had LCH— then DI, did you get a tumor on your pituitary gland that needed to be removed?? My doctor also said he expects my LCH to return. Waaah. 

    • canadianhey canadianhey leannlittleton

      Hi leannlittleton--

      My LCH was diagnosed first and nobody mentioned that DI can follow/accompany this, so when I got symptoms of DI it took a while for everyone to get on the same page and for me to start using desmopressin... At that time however they also started watching for tumors with regular MRIs... At first, no tumor visible but doctors said, even if not visible now, that's probably what is causing the DI, so let's keep watching. Sure enough, I think it was after the second MRI the tumor because visible... maybe 1.5 years ago(?) Since then I've had another MRI  April 2017 to monitor growth of tumor but thankfully, there was not change. This left me feeling relieved. However, last week I had two "episodes" which could relate to change in tumor. One was tremors in my right hand, and then a few days later flashing lights and weirdness in my right eye. So I'm being fast-tracked for the next MRI, and we shall see.... So this tells you my experience to date with the tumor, but so far, no need for removal. Fingers firmly crossed here ... Best of luck to you, glad you are on the desmo, it's a life-changer.


  • lilyfb lilyfb Guest

    Please can someone help me. I've got my self in such a pickle and don't know what to do. I've been having extreme thirst and weeing @every hour (up 4 times a night) since about July last year. Went to the drs in Sept. They've been doing tests since then. I had a blood osmolality which came back ok. I did the 24 hour collection which came back ok (despite bring 6 litres in 24 hours). Last week I had the urine osmolality test and it was abnormal. So had it re done this week and came back very low. 130, when normal is 300 to 900.

    My gp has referred me to endocrinology who rang today, and despite gp saying it was urgent, 1st available apt is 10 April, nearly 7 weeks away.

    I've been on Google 24/7 and my worry is, I had breast cancer 4.5 years ago, and DI can be caused my breast cancer mets on the pituitary gland. Does any one know anything about this? And what are the other reasons for it happening? I've got myself all worked up thinking my breast cancer has spread, and don't know how I can make it to April without knowing xxxx

    • canadianhey canadianhey lilyfb

      While I'm not qualified to advise on your specific health issues, I can tell you what has worked for me in the past for getting into appointments that are booked too far into the future. Believe me, I really do feel for you on this issue. Just recently I was referred to a specialist and the first appointment they could give me was about six months away... even though it was not my first time seeing this doctor. Like you, I felt that the wait would be devasting to my condition. I've used the following technique in the past and it seems to work if you are able to overcome any "shyness" at the prospect. What I do is that I walk into the office and very nicely explain my situation, I tell them I am in extreme discomfort etc, and with full respect ask to be put on a waiting list for when they have cancellations. Luckily in my situation I live close enough to the medical building so I can get there on fairly short notice. Also, since I work from home I can be a little more flexible than some people. Reason I go in there in person to ask this is that I like to make eye contact with the secretary etc. I feel this has more impact than just phoning. It lets them know how serious I am about trying to get medical attention sooner, rather than later. In most cases where I've done this it has really worked to my advantage -- sometimes saving me months of waiting. 

      I know it can be time consuming to personally travel to and walk into a doctor's office just to have a one minute conversation with the secretary, but if it saves you weeks of waiting and agony, this is so worth it. Hope this helps smile

    • melloannie melloannie canadianhey

      I can tell u exactly what u can do ... walk in the emergency room complaining of of head pain and other symptoms they will check u right there probably admit you and they CALL THE SPECIALIST IN ASAP.. i myself had to do something similar 2x already and it worked. .. will keep you in my prayers. .. annie

    • nickys1903 nickys1903 lilyfb

      Hi I hope you are sorted if you are struggling as previous post said go to a and e or out of hours due to lack of knowledge of DI I am sure they would get an endocrine specialist to review you but be persistent. Let us know how you get on. Also pituatory tumors do tend to be benign but you stil need IT all sitting bless you. Nicky

  • judy79185 judy79185 Guest

    Hi Nicky

    I am 77 & was diagnosed with D.I. a year ago. I am lucky & only have to take 2 tablets a day of desmopressin  & I am usually ok on this. I have regular checks at my local surgery. As long as I keep hydrated I am reasonably fit & have been advised not to drink more than 1.5 litres of liquid a day. No definite advice on food has been forthcoming.

    Prior to diagnosis, I was getting up hourly during the night to pee & at least hourly during the day. My thirst was constant & insatiable. I especially longed for ice cold drinks. Lack of sleep made me constantly tired until I felt really ill.

    Eventually, a blood & urine test at the same time provided the correct diagnosis. I'm afraid there doesn't appear to be much information generally & I have virtually found my own way through this.

    Always keep a spare spray with you, whether you have a handbag with you or not!

    Hope some of this helps.

    Good luck

    Judy V.

    • david27179 david27179 judy79185

      Are you in the uk Judy? I have had DI for 15 years now and have never had anything explained about things like sodium balance, etc. In fact I usually have to explain the condition to the medical staff. On a couple of occasions when I have had to stay in hospital for other issues I have had to stop them doing my blood sugars!

    • judy79185 judy79185 david27179

      Hi David

      Yes, I am in the UK.

      I was recently admitted to hospital with chronic dehydration &, like you, found myself explaining, repeatedly, that I was NOT diabetic! My blood sugar was regularly being taken too. One has to wonder why on earth our condition has the word 'diabetes' in it at all? It is most confusing for everyone.

      I have insisted on seeing my doctor in order to explain to me what I should be eating as,apart from informing me that bananas are an excellent form of potassium, I know very little.However. I do know that our levels of sodium have to be watched.

      Hope I have been of dome help.

      Judy V.

  • nickys1903 nickys1903 Guest

    Hi both you should both be under an endocrinologist and whilst they may not have time to answers all your concerns most trusts do have an endocrine specialist nurse and she will be able to educate you regarding all this. Yes they hear diabetes and will automatically try to check your glucose levels. If I can help with any particular questions please ask Nicky

    • david27179 david27179 nickys1903

      Thanks Nicky, in fairness I go for a check up at the Endocrine clinic once a year (unless they cancel and it stretches out to 18-24 months which has happened the last two times). I have been going for 15 years and nobody has once mentioned sodium levels. I am quite sure that the blood test that they do checks this but it would have been good for someone to discuss it and make sure I am aware of the issues.

  • judy79185 judy79185 Guest

    Hi Nicky

    I am ok now thanks, mainly due to my GP who summoned an ambulance when I was seriously dehydrated a few days ago. I was admitted to hospital & put on a drip & that sorted me out. I had caught the vomiting bug which made me lose a lot of fluids.

    How comforting it is that, at last, there are people out there with whom one can discuss the dreaded DI!

    Judy V.

    • nickys1903 nickys1903 judy79185

      Yes your sodium will be checked when they check your u and e blood test. It is called diabetes because this is a Latin word for fluid in and out the body so in some ways is more apt to diabetes insipidus as opposed to diabetes mellitus. I am fortunate to work with some endocrine consultants so am usually able to get answers and my care on the whole has been excellent except yes appointments are often cancelled. So as I said if I can help let me know x

    • lynn57074 lynn57074 nickys1903

      Hi just seen your details re diabetes insipidous. My son was born with Nephrogenic Diabetes Insipidous and as the hormone that replaces the natural hormone didn't work for him as his adrenal glands don't respond to it he has to endure the thirst and output all the time. Apparently this type is genetic but the pituitary type like yours can just occur out of the blue. I knew a lady that developed it in her 60s and she described it as wanting to drink an ocean dry, my son says that's a good description.

    • meagan58879 meagan58879 lynn57074

      lynn your son was born with it!? OMG ive been searching for 4 years for another family that deals with genetic nephrogenic diabetes insipidus. Every single person I have met has central DI, which as you know is the same but totally different. my son was born with it to. I'm a carrier and i had no idea until he was born. 

      my son is 4 and we almost lost him a few times. It has been a battle. 

    • meagan58879 meagan58879

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    • meagan58879 meagan58879

      we did the math yesterday because I was at the childrens hospital with my son for treatment... my son drinks 25-30 CASES of water in ONE MONTH to himself at just 4 years old.

    • lynn57074 lynn57074 meagan58879

      My son is now 37 and doing very well in life. It was traumatic when he was young and if you want to ask me anything I will gladly answer your questions. I remember how isolated you felt because of the rarity of the condition no one else around to confide in. Training him was a nightmare but managed it.

    • lynn57074 lynn57074 meagan58879

      Yes Andrew used to drink an awful lot and we didn't have disposable nappies as cheap back then so it was a nightmare keeping him dry. I thought he would die because he wouldn't eat only drink. At a very young age he would point to the tap, he quickly got to know what water was. It has improved as he has got older, he is married with a son who hasn't got the condition. I hope you have a good supportive family.

  • sophia 53161 sophia 53161 Guest

    Hi I am 12 and I was diagnosed with DI at birth. Growing up my parents hid my pills in Marshmallows so that I would not see them. I hate havin DI though. I take 9 pills a day! And if I forget to take some pills I will have to constantly pee and drink water. Kids at school also make fun of me for having DI or just ignore me because they think that I am weird. The worst part is that I will have to live with it for the rest of my life.

    • canadianhey canadianhey sophia 53161

      Hi Sophia;

      Yes, having DI really sucks. I was really sorry to hear that people at school treat you badly because of it. I wish I could go to your school and then there would be two of us there, and we could hang out together. But I'm too old for school now sad  

      I hate having DI too, and I've not even had it as long as you have. I agree, to have it for the rest of our lives is really sad. But when I get sad, I think about this next thing I'm going to tell you and maybe it will help you too: I think about how lucky I am that I live today, at a time where there is medication. I think about how life could be worse... if I had to carry around an oxygen tank everywhere just to keep breathing. I also think about how much I love water! I know it's crazy but I think that those of us with DI probably really appreciate the vital importance of water more than other people do. I LOVE water, don't you? I enjoy drinking water as much as I enjoy eating ice cream! Water is essential for all life, and we people with DI really understand this. We have a stupid disease but it kind of makes us a bit smarter, in a way...

      I'm also wondering if now that you are older you might be able to try a different kind of medication instead of those pills. A lot of people with DI use the nasal spray and even though you really do still have to remember to take it all the time, it's taken less often. For me it works really well. For younger kids it's probably not suitable but as you are now old enough to write a post on a forum like this, you're probably mature enough to ask your doctor about the posibility of alternative forms of medication. I'm not saying don't take the medication -- just that you and your doctor might be ready to talk about other ways for your body to take it in. 

      I don't know where you live Sophia, but I'm in Canada. I'll be thinking of you when I drink my next glass of water. You're not alone here. Bye for now smile


    • sophia 53161 sophia 53161 canadianhey

      Hi!You are very nice. My dad was born with DI but only was diagnosed with it at age 15!I am glad to know someone else with DI. My older sister and both got it from my dad but she didn't seem to care much about having it. She went to gifted schools and now is getting perfect grades in all honors classes, so most people don't even notice her DI or just overlook it. I have talked to my doctor about getting nasal spray (my dad has nasal spray) but I am not quite old enough. So by you having nasal spray I a, guessing that you have cranial DI. So do I. I appreciate you replying to me and giving me advice. It feels good to talk to someone with DI besides my dad and my perfect sister. Thanks ❤❤❤❤

    • canadianhey canadianhey sophia 53161

      Thanks for replying Sophia. Wow -- I really learned something from you just now. I had no idea that DI could be 'inherited'! At least you have someone around you who understands what it's like to have DI. I guess you have a lot of drinking glasses at your house... with three people having DI... probably you make a lot of ice too smile I know for me, when the meds run out and I get thirsty, it has to be COLD water. Good luck to you, best wishes smile

    • sophia 53161 sophia 53161 canadianhey

      Hi again! The doctors didn't know that DI could be inherited until my big sister was born lol. If this isn't too personal I was curious what type of medicine you take for DI. We take ddavp , a type of desmopression. I usually take some in the morning around 6:30am, at lunch, and at around 7pm at night. It isn't too much but sometimes in night you wake up and when you walk to the bathroom door, your sister is waiting in the hall for your dad to hurry up and get out lol. Our drinking problem is solved with a sort of water fountain thing in the center of our three bed rooms. We also Have our own water bottles that purify water (like tap water) and keep it cool and fresh. We have carabeaners on our water bottles that attach to backpacks, jackets, purses, ect. After all of the years of my dad, sister, and then me wth DI, we are quite prepares.

      Anyway, I wish you the best wishes and a long life! lol

    • canadianhey canadianhey sophia 53161

      Hi again Sophia, -- wow, you three are so wonderfully prepared! I don't think I could have lasted without my automatic filtered-water dispenser on the fridge door... right beside the ice dispenser. Oh how I love both those gadgets. Yes about the water bottles and carabiners too! And like you, I take the DDAVP... I am SO grateful for that drug, but it costs a LOT of money here, about $100 per month. Things could be worse though... there are worse diseases than this, as we know. Best wishes to you too smile

    • sophia 53161 sophia 53161 canadianhey

      Hi again! Wow. $100 ! Here in America we get ddavp for free with our medical insurance.  The only reason I found this was to research DI. I barely knew what it was lol. All I knew was that it made me drink, pee, repeat. But once I came on I was so surprised that so many people were like me. There was another family in my city with two cases of DI, but they left. How London have you had DI? Wanna here something gross: When my dad had first been diagnosed in 1970 something, they didn't have the drug ddavp so they had to make his nasal spray out of the liquid from a dead person . EWW. I am very greatful that ours was made in a lab, not a morgue lol. It was nice talking to you. Bye!!! biggrin

    • ip.freely ip.freely sophia 53161

      We are indeed incredibly lucky in the UK to get these things paid for, the benefits of living in a welfare state.

      I'm here to join as well DI for a month post pituitary surgey peeing like a racehorse and drinking up to 5 litres of water a day. On the desmopressin tablets twice a day and 10 mcg and that seems to really have it under control.

      Does anybody else partake in a "pee day" essentially a day off the desmo to clear your sodium levels or is this just me?

      look forward to hearing.


    • meagan58879 meagan58879 sophia 53161

      this was posted a long time ago so I hope you get this. I am currently working on a website with private forums for kids with DI to have a support system with other kids going through the same thing. My son is nephrogenic DI and he was born with it. He is only 4, and he takes alot of medication a day too. He may be getting a feeding tube. He drinks a gallon and a half of water a day. The medication they treated him with is causing kidney failure.  I have been trying for the last 4 years to find other kids and families that have children BORN with this problem because in these 4 years I have found no one. Everyone is an adult that came into this problem due to another underlying issue. This disease gets virtually no attention and gets over shadowd by sugar diabetes and our children suffer because of it

  • bill52719 bill52719 Guest

    I am a 56 YO male, live in the Boston area and was diagnosed 12+ years ago by a phenominal Dr. at Brigham & Womans Hospital in Boston after months of sleepless nights, incredible thirst etc. I travel a lot on business and use one spray of Desmopressin a day when home and 2-3 pills/day when traveling. The spray lasts 15-24 hrs and I wil take a  pill to stay on my spray schedule so I can sleep through the night. My Dr is fine with this. Like many I have a bottle of pills stashed everywhere, car, desk, suitcase, computerbag, nightstand, etc.

          About 6 years ago I lost over 100 lbs. in 5 months (by choice and with diet & exercise) and found no change in my dosage. I have noticed when I work out very hard (90+ mins) with heavy sweat that will shorten the duration of a dose. Makes sense.  

           Other than that the spray/pill combo works & makes sense. My insurance covers most of my cost so while an inconvenience, it's not been drastic or debilitating. Theres much worse situations to be in or health issues to be forced to deal with

  • Wang23 Wang23 Guest

    Hi i am 21 year old and diagnosed with diabetes insipidus in july this year, after a few MRI a small lesion about 5mm was found on the stalk of pituitary gland. Did a few blood test and found out i was not only low in AVP, but also low in testorsterone.

    Right now all the blood test and spine lumbar puncture that i had done did not give any results regarding what kind of lesion it is (tumour etc). Currently having desmopressin tablets around 3-4 pills a day depending on what time i go to bed.

    Doctor suggested to have a surgery to take specimen of the lesion but chances of damaging the whole pituitary gland is high. May result in permanent DI and also loss of other hormones. Hence my parents did not want the surgery to be done.

    i would love to hear back from people that is in the same situation as me.

    • sophia 53161 sophia 53161 Wang23

      Hi! I am 12 and have DI and I recommend having the surgery. DI honestly isn't that bad. I have had it for 12 years and will have it for the rest of my life and trust me, you'll get use to it. I take 9 pills of ddavp a day and it isn't that bad as long as you remember to take them. You can also have the nose squirt one and only take it twice a day, but I am not old enough for that. I know that just starting out is tough though, I got DI along with Femural anteversiom at birty, so I am use to it. But in the end ask the doctors what is best for you. Best wished, xoxo -Sophia

    • Wang23 Wang23 sophia 53161

      Hi sophia, the surgery does not remove the lesion. Its purpose is only to take a specimen of the lesion so the doctors can know what exactly it is. but its risky as the whole gland might be damaged leading to more other hormone loss.

    • vaibhav.b vaibhav.b Wang23

      Did u went for the surgery? I am very scared now as I also have low testosterone level, although in prescribed range but touching the lower border. I am planning to go for MRI. My doctor advised me for MRI after around 2.5 months which is the schedule checkup day but now I think i should get the MRI ASAP.

      I really really dont want my head to be open by doctors.

  • smoe smoe Guest

    I just saw this post and do hope you check back often and see this. I am 25 and also have LCH with DI. I was diagnosed at age 12 and experience many complications. The most recent complication are kidney stone and chronic back pain to along with the chronic headaches I have had for over 12 years. I would ike to be able to discuss this with you. I will check back in hopes you have found this.



    • canadianhey canadianhey smoe

      Hi Smoe; It's ALWAYS good to connect with others who share our disease. There is so little known, and I feel we can all learn from each other but there is no chance of that happening unless we connect... I was sorry to read that you have been diagnosed with LCH since age 12. I am a 56 year old woman in Canada and was diagnosed about 3 years ago. The DI came on about a year later. But like you I have extreme back pain lately that seems to be unrelated to any movement or activity. It just comes on when I'm standing still! And the pain is so extreme that the first time it happened I almost fainted. I asked for an ultrasound exam because I was convinced that I had kidney stones. (I've given birth twice, and this pain is worse than childbirth...) They found no kidney stones, and no explanation for the back pain. ...

      The reson I'm responding is because maybe someone out there will have some kind of shared experience or insights we can benefit from. I also had the flue recently, which lasted for exactly one month. For the first few days I had the back pain plus flue symptoms on top. I was completely debilitated for about 5 days -- unable to walk, stand, lie, or sit without pain. In hindsight I started questioning if the back pain was a symptom of inflammation as the white blood cells were trying to fight off the flue virus. The back pain abated once the flue took hold. I don't know much about cells, but I'm pretty sure that we LCH patients have an abundance of those white blood cells that try to fight off virus attacks. So wouldn't it make sense that when we have an immune/inflamation response, it could be much more sever than in other people who don't have LCH. This is just a theory that came to mind while I was suffering and it could be nothing, or maybe it makes sense. I would love to know what others thing, or if anyone else has had any similar experiences with immune response etc. Best to you, Helene

    • smoe smoe canadianhey

      Hi Helene,

      Did your back pain ever go away. I have had back pain for about 3 years now. I do get small kidney stones but doctors do not agree that the pain is from the kidneys stones. My theory is the kidney stones and DI are related, since when you take DDAVP your urine is more concentrated which is a good environment for stones to grow. I have also been wondering back pain is related to the LCH. I also have.lesions on the brain from the disease so wasnt sure if it was a neurological issue causing this pain. SORRY IT TOOK ME SO LONG TO SEE YOUR REPLY. KEEP IN TOUCH. I do not know anyone with this rare disease, it is really hard sometimes.

  • marcos12 marcos12 Guest

    Hi Guest, and everyone with DI. I am a 52 year old male, was diagnosed with DI at 19 yrs, and since then being on DDAVP spray.

    For the passed few weeks I was getting headaches, dizziness (feeling like I was going to faint), double vision, and my face became very bloated.

    Since then, I am monitoring how often I used the spray, which I noticed that I was over dosing myself, I begun by decreasing the dose, doing this all my problems got fix.


    Has anyone ever try getting off the spray/pills? Since I started monitoring how often I take it, I have noticed that I can go for long time without taking the spray.

    For example, I take the spray at 9:00pm, I start getting the "feeling" (drinking water and peein) at 4:00pm, then I noticed that if I eat something, fruit or crakers, the feeling decreases by about 20% -When I have supper at 6:00pm, the "feeing" decreases by another 20%, by then I am not as thirsty and I don't pee as much either...but I do feel a bit dry though. I take the spray againg at 9:00pm, just before I go to bed, that is a whole 24 hrs with just one spray.

    I am thinking about just quitting taking the DDAVP spray, do you know of enyone who has done it before? I want to do it, but I am scare.

    Also, how much water DI people should drink, I know I was drinking to much water, that is why I had all the symptoms that I mentioned. I am hardly drinking water right now, maybe that is why I can go 24 hrs without the spray.

    Also, has anyone try both the pills and the spray, are the pills any better? I know the spray can damage your nasal passages.

    If I decide to quit DDAVP, I will let everyone know.


    • linda28225 linda28225 marcos12


      You can get dehydrated if you don't drink water. I have DI due to a tumor that was removed. When I was first released from the hispital the doctor didn't think I had DI and didn't give me the prescription. I started having psychotic thoughts, harmless but strange, and you don't even realize that they aren't true. That evening while sleeping, I had a seizure and had to go back to the hospital for 3 more days. I just need to warn you to be careful.

  • vaibhav.b vaibhav.b Guest

    Is there any special care or precaution to be taken in this disease? Doctor gave me tablets of MInirin 0.1mg. One in night was insufficient so I now take 1/2 pill extra in morning. I think I have to increase the dosage to 2 tablets.

    I still cant figure out the cause of this problem. When this all started 10months ago i was in some stress thats it and suddenly I am a patient!

    It took me and doctors (I consulted with atleast 4 personally and 2-3 on telephonic conversation) 10 months to identify Diabetes Incipidus.

    Funny thing is no one takes you seriously. Doctors, parents, few friends adviced me to go to some psychiatrist as they thought its all in my head but only a diabetic Incipidus patient can really understand my problem.

    • sophia 53161 sophia 53161 vaibhav.b

      Hi! I'm 13, but I have been living with this for 13 years, so I'm kind of an expert smile Anyways, your case doesn't seem too severe, so I can't think of too many problems that you might face. I can tell you a few of the small problems that you might have to endure.

      Medication before bed can be a hassle, so I reccomend having it on your nightstand and taking it right before you fall asleep and right when you wake up in the morning. Waking up in the middle of the night is not only frustrating, but messes up your dosage schedule.

      If your pills get to be too much, there is also a nasal stray that you can take. However, if you ever switch to spray, you need to know a few things. 1) It will NOT work if you have a cold, so always have some pills in hand.

      2) It has to be refridgorated, so no carrying it in your pocket or anything like that.

      Another tip (the most important) is that most people don't know this, but DI can grow stronger and weaker at different times in your time. Sometimes you can even go into remission where it becomes very acute, but then be pulled out where it gets serious.

      I've had months of remission where I've only had to take two pills a day, but I fell out during finals rolleyes and now I'm taking 11 pills a day. Sometimes this can be a hassle, so I reccomend taking a few days off of work or school every 4 months or so and seeing and carefully monitoring how long each dosage lasts.

      As for precautions, I have one big one. The medication might work too well at times and make you dehydrated. Just please watch out for that and make sure to monitor your water. A good way of doing that is monitoring your weight.

      I'm sorry that you're dealing with this. It really sucks. Best wishes.

    • vaibhav.b vaibhav.b sophia 53161

      Thank you Sofia, thank you very much. I think i should get the MRI of my Brain too, I am little frightened if something is not ok with my Brain, just to be sure on the safer side.

      With pills i dont have any problem, without pills I drink about 7-9 litres of water as i documented it for 3 days on my Doctor's advice.

      I really feel delightfull chatting to you as it needs some strength to face this problem since childhood. i  have read all the messages in this thread and its good to chat with people facing similar problem.

    • amydupadms5 amydupadms5 sophia 53161

      Hey , my daughter was in a car accident in Feb. this year she suffers from a severe TBI and developed DI . She remains in a catatonic state and cannot communicate , she is 17. did the DDAVP cause you to have peach fuzz all over your face?

  • marianna73771 marianna73771 Guest

    Hello everybody....I'm newly diagnosed with diabetes. I had a tumor on my pituitory gland and it was removed 20 Years ago, the sideeffect of that procedure cost me water inbalance and I was using nasal spray for several month, at that time my sugar level was fine and water problem stoped. For the past year my sugar was up and two weeks ago I was diagnosed with diabetes 2 and now I'm on metformin pills. I din't even know there are many forms of the desease until today, I've purchased a book about it and on the first page it say anout DI and the symptoms, and that's exactly what I have.....most of the time I'm very thirsty and I drink a lot during the day, and even that I try not to drink anything at least few hours before I go to bed...I still have to get up sometimes every hours or so. My GP never even mention anything about DI and its clearly the case.

  • Ukandy Ukandy Guest

    New to site. I have diabetes insipid us from a road accident 40 years ago. Use DDAVP Demopression Basel for nighttime as get5 to 6 hours sleep. Tablets during day.

    i live in uk but have had issues last 6 months getting nasal spray as pharmacy say they have trouble getting it. Is anyone else having this issue and if so any suggestions how to get it?

    • david27179 david27179 Ukandy

      I have been on the spray for over 16 years and have, twice in the last few months, had the pharmacist tell me they could not get the sprays (Boots) managed to get them from somewhere else the first time and Boots sorted it after a few days the second time. Worrying! 

    • canadianhey canadianhey Ukandy

      I am in Canada and had no trouble getting the spray... yet. (This would be my worst nightmare!) I use one dose of spray twice per day. One spray late at night lasts me through till mid day. The mid day dose lasts me to late night but usually I start getting thirsty and drinking a couple of hours before I take that last dose. Those tiny bottles are very expensive here ... (about $50 for 25 days)


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