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My diabetes insipidus journey

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Guest
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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  • smoe
    smoe Guest

    Posted

    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.

    Thanks,

    SMOE

    • canadianhey
      canadianhey smoe

      Posted

      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

      Posted

      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 if.my 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

    Posted

    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.

    PLEASE READ THE LINK BELOW, VERY IMPORTANT IF YOU HAVE D.I

    http://www.drugs.com/sfx/desmopressin-side-effects.html

    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.

    Marcos

    • linda28225
      linda28225 marcos12

      Posted

      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

    Posted

    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

      Posted

      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

      Posted

      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.

    • vaibhav.b
      vaibhav.b

      Posted

      Sorry I spelled your name wrong, its Sophia..not Sofia
    • amydupadms5
      amydupadms5 sophia_53161

      Posted

      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

    Posted

    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.
    • vaibhav.b
      vaibhav.b marianna73771

      Posted

      Hello Marianna, are you diagnosed with Diabetes Mellitus?

      Sometime symptoms of Diabetes Incipidus and Mellitus are similar in terms of thirst and frequent urination. You should ask your Doctor about this? He will advice you for urine osmolarity test I think. Check with your Doctor soon.

    • marianna73771
      marianna73771 vaibhav.b

      Posted

      The doctor just said that I have diabetes type 2...but I will ask her to send me to the test yiu've suggested..thank you 
  • Ukandy
    Ukandy Guest

    Posted

    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

      Posted

      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

      Posted

      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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