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My diabetes insipidus journey

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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.

7 likes, 219 replies

219 Replies

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  • judy79185
    judy79185 Guest

    Posted

    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

      Posted

      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

      Posted

      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.

    • david27179
      david27179 judy79185

      Posted

      Great advice about the spray Judy, I have them everywhere (car, work bag, golf bag, etc)
    • canadianhey
      canadianhey david27179

      Posted

      Oh my! I wish I could afford to do this! The teeny tiny bottles of spray are about the size of my thumbnail and cost me $90 for 25 sprays!!!!
  • nickys1903
    nickys1903 Guest

    Posted

    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

      Posted

      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 nickys1903

      Posted

      Hi Nicky

      I should have stated originally that I am under an endocrinologist

      Thanks

      Judy V.

  • judy79185
    judy79185 Guest

    Posted

    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

      Posted

      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
    • judy79185
      judy79185 nickys1903

      Posted

      Please can you give me any Info. regarding diet?

      Thanks Nicky

      Judy V.

    • melloannie
      melloannie judy79185

      Posted

      Make sure when you get iv fluids you only get the sodium Hypertonic iv fluids, and not the regular one.. i have that on my medical alert bracelet. ..
    • lynn57074
      lynn57074 nickys1903

      Posted

      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

      Posted

      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

      Posted

      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

      Posted

      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

      Posted

      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.

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