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
nickys1903
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david27179 Guest
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melloannie david27179
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david27179 melloannie
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melloannie david27179
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david27179 Guest
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nickys1903 david27179
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nickys1903 david27179
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david27179 nickys1903
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linda28225 david27179
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naomi_64331 linda28225
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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 david27179
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william35453
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linda28225 naomi_64331
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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 david27179
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paul49239 nickys1903
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