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My diabetes insipidus journey

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Guest

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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  • diana123456
    diana123456 Guest

    Posted

    Hi my fellow DI friends. I'm newly diagnosed with CDI. I think it's been about 5 months now. I'm done grieving. I'm most grateful that ddavp works for me. I've been taking 0.1mg twice a day. Sometimes 4x a day if I eat lots of salty foods.

    Since my diagnosis, I've gained 20lbs. I've been exercising a lot but it's been very hard to shed the weight. Question, does anyone else have this problem?

    Also, I've been getting tired a lot. Is that normal with this disease?

    • Guest
      Guest diana123456

      Posted

      Hi!

      As much as I know, it's more usual to lose weight DI. I haven't either gained or lost anything. 

      Getting tired a lot and feeling tired is normal with DI, yes... or at least I have the same problem. Maybe anyone else can comment on this, maybe it's not okay?

  • rod93781
    rod93781 Guest

    Posted

    Hi Diana 

    I've had DI for many years and can't say I ever noticed the weight gain or loss. I have lost about 20 pounds over the last year and a half but due to cutting a lot of sugar out of my diet,so I weigh less than for forty years. 

      

    But yes I'm tired when I get up in the morning,and through the day,but I'm not a good sleeper tho. I think that's seems normal for us.

    So so it seems like your managing your medication well,and it will vary like that,mine dose,I go through spells where it just dosent last as long,or work as well,spray or pills. But everyone is a little different it seems. 

    But I look at the the positive side,I would choose DI over type 1 diabetes any day.  

    Take care,hope you have found this forum to be encouraging,I sure have. 

    Rod

    • diana123456
      diana123456 rod93781

      Posted

      Thank you Rod and Alexandra for your response. smile

      Hope everyone has a nice Thanksgiving!

  • biPolar_Bear
    biPolar_Bear Guest

    Posted

    Hello. I'm male, 41, with bipolar disorder and low testosterone. I was treated with 1400mg/day of lithium for a few years back-I knew I should've followed my instincts and said no to lithium.

    About 3 years into the lithium, I developed an unquenchable, salty thirst, and started peeing-much-every 30 mins or so. This went on for a couple years because my doc at the VA kept dismissing it, saying it was healthy to drink a gallon or more of water every day (all of a sudden too, I used to hate drinking water).

    Now my psych tells me I may have lithium-induced nephrogenic DI. The other, less useful doc ordered a 24 urine test, which she called negative even though I was only able to give them a liter of urine (the one urinal they gave me) when my output was probably closer to four.

    I am tempted to go to a regular clinic and start from scratch. I'm on TRT, which is helping me to loose inches off my waist, and gain back muscle mass, but I have zero stamina. Even walking up a flight of stairs makes me light headed. Not to mention my wife's and my frustration in the bedroom. And I don't have ED. I like to hike, bike and lift weights, and I can't do any of those things. It was frustrating me, then it depressed me, but now it's just p*ssing me off.

    I am relieved to see that this is a real condition, and everything's not "fine" as my lazy ass Doctor suggests...

  • amy98033
    amy98033 Guest

    Posted

    Hi - I was diagnosed with DI this year and have only been on the nasal spray for about 3 weeks.  Has anyone had night sweats with taking this?  My doctor said he has never heard of anyone having this issue.  I generally don't feel that great on this spray (feeling tired and just generally not feeling well), but it is great to be able to sleep all night (1st time in 30 years).  Just wondering if anyone else has had this issue.

  • kirsten215
    kirsten215 Guest

    Posted

    I've been struggling lately feeling more dehydrated all the time

  • biPolar_Bear
    biPolar_Bear Guest

    Posted

    I see a lot of us on here suffer from the dryness upon waking.

    I use a cpap machine for other reasons, but they all have a humidifier built in-which I keep cranked and filled with DI water.

    It keeps my mouth nose and throat moist over night. Just thought I'd throw that out there.

  • diana123456
    diana123456 Guest

    Posted

    Hi guys. I've been taking desmopressin for about 3 months now, 2-4x a day depending on my salt intake. Just recently, I've been getting chest pains. Anyone else has this problem too? sad

    • charles68406
      charles68406 diana123456

      Posted

      Don't take desmopressin that much, is too much. I take it maybe twice a day.

  • koukla83
    koukla83 Guest

    Posted

    Hello, I'm 33  years old and have had DI for almost 2 years. 

    My may have come on from my last pregnancy / stress. 

    Would be grateful to hear from others who always have this and may suffer from frequest headaches.

    Also from women who have lost other hormones... I have since lost my estrogen. 

    I live in South Australia - does anyone else?

    Thanks

    Kylie

    • bella_blue
      bella_blue koukla83

      Posted

      I don't understand why you would loose your estrogen because your ovaries produce estrogen. I have had this my whole life born with it but was undiagnosed until age 19. I don't produce melatonin or serotonin or vassopressin.

  • Wrightacus
    Wrightacus Guest

    Posted

    Hello, I've been experiencing constant urination and thirst for 3 months now. I'm 22 at this making feel pretty down currently. And kind words or advice would be appreciated

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