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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

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  • nickys1903
    nickys1903

    Posted

    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

    Posted

    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

    Posted

    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

      Posted

      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

      Posted

      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

      Posted

      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.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • david27179
    david27179 Guest

    Posted

    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.
    • nickys1903
      nickys1903 david27179

      Posted

      Hi David I would say the headaches are to do with your hydration levels have you had any blood tests done recently? 
    • nickys1903
      nickys1903 david27179

      Posted

      Think I may have mis understood your headache was when you were diagnosed this again is usually due to prolonged hydration problems prior to diagnosis. 
    • david27179
      david27179 nickys1903

      Posted

      You are most probably right nickys but the thing that has always bothered me is I had the headaches for six weeks and the peeing and drinking only started after the headaches had gone.
    • linda28225
      linda28225 david27179

      Posted

      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

      Posted

      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

      Naomi

    • william35453
      william35453 david27179

      Posted

      it could be that you had an undiagnosed case of meningitis which often presents with headache. somewhere around 30% of meningitis patients develop DI due to injury to the pituitary in the brain.
    • william35453
      william35453

      Posted

      well pardon that post. this is my first visit to this thread and i was trying to reply to another post, not this one which is obvious. sorry
    • linda28225
      linda28225 naomi_64331

      Posted

            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. 

    • melloannie
      melloannie david27179

      Posted

      So nice to know there are others that know what where going through
    • paul49239
      paul49239 nickys1903

      Posted

      This exactly how mine started... Severe headaches and then followed by super high urine output.
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