My diabetes insipidus journey
Posted , 61 users are following.
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
diana123456 Guest
Posted
canadianhey diana123456
Posted
Nope, Diana, have never consumed an artificial sweetener in my entire life! My DI was caused by Langerhans Cell Histiocytosis (LCH)... but like you, I am always searching for the mystery cause of it all. I can think of plenty of toxic instances in my life that may have contributed... living near a pulp mill in my youth... going to a school with asbestos in the ceiling above our heads, many years of putting perm solution on my scalp.... sigh... I wish I knew more but there's not much I can do now except try to live clean and healthy and make the most of each moment as best as possible. This group helps a lot to make us feel less alone, and to put our DI into perspective. Thanks again to all who share here
david27179 diana123456
Posted
smoe canadianhey
Posted
Hi,
I also have LCH and DI. I have had it since age 12, I am now 25. I am experiencing bad back pain and pass alot of kidney stones. I have had a couple of bigger ones and had surgery but now with meds they are smaller gravel like stones. It seems to be related to my DI. Have you had similar problems? I know we both have LCH and DI, I haven't met anyone else with both. Although my kidney doctor said he had another patient with DI and kidney stones.
canadianhey smoe
Posted
Hi Smoe
I can't tell you how excited I am to hear your info about kidney stones! I know it sounds crazy to hear that, but here's why... in the past year I experienced excruciating back pain which almost caused me to faint. I told my doctor it was worse than the pain of childbirth, (I've two kids, so feel qualified to speak on that.) I asked about kidney stones and they did give me an ultrasound test (this was several weeks after the pain) which showed nothing. At that time I had to wonder if maybe I'd passed the kidney stones and therefore they saw nothing... but I'm not a doctor so just had to go with what they told me. If, as you say, kidney stones can be related to DI, then this makes me feel I wasn't so crazy in my thinking. I'm now going to check google to see if there is any report of concurrency between the two. Best wishes to you.
david27179 smoe
Posted
linda28225 david27179
Posted
rod93781 canadianhey
Posted
My DI start many years ago in grade 5 at 1:30 in school 48 years ago,when I fell backwards hitting my head on a cement step. Well actually started 2 weeks after that because the average person stores a 2 week supply of hormones. So we had to think back to figure it out when it was finally diagnosed. So just want to mention to those that it suddenly stared,try and think back a few weeks before to try and remember if you maybe had ablow to the back of your head. Possibly that's how it may have stared.
meagan58879 david27179
Posted
The ADH hormone tells the kidneys how much water it needs to flush the blood to expell the electrolytes from the body in urin. Without treatment these electrolytes build up in the blood and kidneys,( which is why people with Diabetes insipidus tend to suffer from kidney stones.) and struggles to be released from the body causing the dehydration. Your not just dehydrated because you pee alot, your actually dehydrated because the water isnt helping the electrolytes leave your body (mostly salt) and it sits in your body longer than they're suppose to building up before they get out. The example I was given is this. Take a paper cup and put an inch of salt in it. poke a little hole in the bottom. Now put a little water in it. Not much salt leaves. With DI you need MORE water, so that when you fill the cup, the salt can mix with it and go through the hole. Without the water it will build and build until the cup is full of salt. According to the doctors, the kidney stones are caused by not enough water in the body.
rod93781 Guest
Posted
What a blessing to find a site how can we get it out to others about DI may have never seen this.
My DI started when I was 11 years old and now I am 59, year 1968,so it's been a roller coaster ride. I fell backwards on the cement step at school and hit the back of my head,no symptoms showed up for two weeks found out later that we store a two week supply of hormones.It started one afternoon I suddenly got thirsty and had to go to the bathroom and every 15 minutes from there on,backand forth to the bathroom and the water fountain. It took about a month to diagnose in the hospital but it seems like they were almost more efficient Then some of your stories now. Went through the no water test a few times so I have a said we have a pretty good idea what it would feel like to die of thirst. Sound bad but chewed on face cloths they had given me for fever,thought of taking back in what little liquid I had gotten rid of. But till your in that situation people that haven't been there won't understand. With no medication I will drink up to 30 li of water (7us gal) in a 24 hour period.
The first medication I used for nine years was Pitressin,and it wasn't synthetic,so you know where it came from. It was a 1 1/2 in needle in the behind every 18-24 hours,and God Bless my dear mother,she gave a better needle than anyone ever did even in the hospital,and between needles and blood tests I've had many. Spent numerous times in the University Hospital research Ward for the first 10 years or so. Then a nasal spray came along for a few months,it didn't work well,until the DDAVP
Came along.So have used that for almost the last forty years,from a solution to the now vapour mist. And being a farmer I have left it in hot tractor for months,had it freeze,and can't say I ever really noticed A difference in its effectiveness.
I tried the pills when they came out but they only partially helped for about four hours so quit that. Back to the spray. But a couple years ago after seeing a specialist was advised I try the pills again because the pumps on the spray bottles didn't seem to be working well anymore losing prime,I think they changed suppliers and not knowing how much I was getting,and over dosing which causes severe abdominal pain for me,which I have some of since I started the spray almost 40 years ago.But it took many,many years of going to doctors with the abdominal pain to find out from a young pharmacist from fearing pharmaceuticals that it was a side effect of the medication. Was told by doctors it was Colitis,spastic colon,or all in my head. I always have a very tender sore abdomen. I can't wear a seat belt with out a clip on it,or anything tight around my waist,or lay on my stomach,or I'm in a lot of pain within minutes. Wondering if others have that.
Back to The pills though I tried them again and the same thing only lasting four hours and not working very well at all. After talking to my pharmacist he told me there was a melt that u put under your tongue,so we ordered some went to pick it up and it was 800 and some dollars a month and not covered by Blue Cross my medication plan,so scrapped that idea. But I got thinking the pills don't have much taste so I tried putting it under my tongue with not much better success during the day.But tried it at Night when I go to bed laying on my back putting it under my tongue and it takes up to an hour to dissolve. It lasts that way from 18 to 36 hours and works very well. But if you talk or have any food particles in your mouth it won't last Nearly as long. So when it's not working during day,till bed time I use a small amount of DDAVP. But one precaution I had to figure out like most of you have said,along with many other things along the way. That if it doesn't wears off before bed time,for awhile you better skip a night or it will start to stack up,which again causes me severe abdominal pain. I just wait till it wears off and usually have to get up at night and go to the bathroom and then I will use a bit of spay to get me back on routine till the next night. And sometimes that can take 24 hrs or so till its out of your system. As one lady said how wonderful water is and look forward to it when were thirsty,with DI you understand that.So all that said,and much more I could tell you,but that's some of my findings.
If you have any comments or questions,would love to hear from you. It could be worse as may have said you just have to learn to live with it. It's nice to hear more than we hear from the medical profession a lot of times. My family Doctor Who is great tells me I can tell him a lot more about DI then he will ever tell me.
God Bless
david27179 rod93781
Posted
I cant say I have really managed to link any change in my general well being with the condition, although I have felt a bit off over the last week or so (nothing I can really put my finger on) and do wonder if it may be linked.
rod93781 Guest
Posted
What a blessing to find a site how can we get it out to others about DI may have never seen this.
My DI started when I was 11 years old and now I am 59, year 1968,so it's been a roller coaster ride. I fell backwards on the cement step at school and hit the back of my head,no symptoms showed up for two weeks found out later that we store a two week supply of hormones.It started one afternoon I suddenly got thirsty and had to go to the bathroom and every 15 minutes from there on,backand forth to the bathroom and the water fountain. It took about a month to diagnose in the hospital but it seems like they were almost more efficient Then some of your stories now. Went through the no water test a few times so I have a said we have a pretty good idea what it would feel like to die of thirst. Sound bad but chewed on face cloths they had given me for fever,thought of taking back in what little liquid I had gotten rid of. But till your in that situation people that haven't been there won't understand. With no medication I will drink up to 30 li of water (7us gal) in a 24 hour period.
The first medication I used for nine years was Pitressin,and it wasn't synthetic,so you know where it came from. It was a 1 1/2 in needle in the behind every 18-24 hours,and God Bless my dear mother,she gave a better needle than anyone ever did even in the hospital,and between needles and blood tests I've had many. Spent numerous times in the University Hospital research Ward for the first 10 years or so. Then a nasal spray came along for a few months,it didn't work well,until the DDAVP
Came along.So have used that for almost the last forty years,from a solution to the now vapour mist. And being a farmer I have left it in hot tractor for months,had it freeze,and can't say I ever really noticed A difference in its effectiveness.
I tried the pills when they came out but they only partially helped for about four hours so quit that. Back to the spray. But a couple years ago after seeing a specialist was advised I try the pills again because the pumps on the spray bottles didn't seem to be working well anymore losing prime,I think they changed suppliers and not knowing how much I was getting,and over dosing which causes severe abdominal pain for me,which I have some of since I started the spray almost 40 years ago.But it took many,many years of going to doctors with the abdominal pain to find out from a young pharmacist from fearing pharmaceuticals that it was a side effect of the medication. Was told by doctors it was Colitis,spastic colon,or all in my head. I always have a very tender sore abdomen. I can't wear a seat belt with out a clip on it,or anything tight around my waist,or lay on my stomach,or I'm in a lot of pain within minutes. Wondering if others have that.
Back to The pills though I tried them again and the same thing only lasting four hours and not working very well at all. After talking to my pharmacist he told me there was a melt that u put under your tongue,so we ordered some went to pick it up and it was 800 and some dollars a month and not covered by Blue Cross my medication plan,so scrapped that idea. But I got thinking the pills don't have much taste so I tried putting it under my tongue with not much better success during the day.But tried it at Night when I go to bed laying on my back putting it under my tongue and it takes up to an hour to dissolve. It lasts that way from 18 to 36 hours and works very well. But if you talk or have any food particles in your mouth it won't last Nearly as long. So when it's not working during day,till bed time I use a small amount of DDAVP. But one precaution I had to figure out like most of you have said,along with many other things along the way. That if it doesn't wears off before bed time,for awhile you better skip a night or it will start to stack up,which again causes me severe abdominal pain. I just wait till it wears off and usually have to get up at night and go to the bathroom and then I will use a bit of spay to get me back on routine till the next night. And sometimes that can take 24 hrs or so till its out of your system. As one lady said how wonderful water is and look forward to it when were thirsty,with DI you understand that.So all that said,and much more I could tell you,but that's some of my findings.
If you have any comments or questions,would love to hear from you. It could be worse as may have said you just have to learn to live with it. It's nice to hear more than we hear from the medical profession a lot of times. My family Doctor Who is great tells me I can tell him a lot more about DI then he will ever tell me.
God Bless
lungs70111 Guest
Posted
vaibhav.b Guest
Posted
I used to take 1.5 pills for 24 hours then I switched to nasal spray which usually lasted for 24 hours with single spray.
But now I have to take 2 sprays in 24 hours...I just replaced empty spray bottle to new one, everything else same as usual.
Or my new bottles were stored at higher temperature so lost their efficacy? Or its all in my head??
rod93781 vaibhav.b
Posted
I can't say that I have had to change thee amount I use on average. I find from time to time it may not last as long,and have sometimes in the passed been concerned, but for many years I would have averaged twice in 24 hours. Originally before the vapour missed came out it was his solution and the same dosage only lasted about six hours so this works much better. I have used the spray for 37 years. And the pills not quite 2 years but they act about the same. But I find it can certainly vary,and I have wondered many times to,why but don't have a specific answer . But I don't think it's the storage temperature, because I have bottles sit in hot tractors for months,and it freeze in vehicles,and can't say I have seen a difference in its effectiveness. But again I'm sure someone else may be a little different.
ConnieAnne rod93781
Posted
meagan58879 vaibhav.b
Posted
Guest meagan58879
Posted
Can you point me to some literature or resources that explain the electrolyte buildup in the blood being related to kidney stones in diabetes insipidus patients? I recently was diagnosed and would like to read up on this topic in particular. Thank you!