i have been on DDAVP generic for about 3 months.
Oral tablets. 3 times a day .1 mg. Was on chlorpropamide for 40 years or so and that worked really really well. But Mylan stopped production of it. The ddavp does work but the effects are relatively short lived. About 6-8 hours.
I did use a spray 40 or more years ago. It was called Diapid (arginine vasopressin) and not available in US now. Similar to ddavp spray but not
exactly the same. I remember it working sporadically. It was not consistently effective. It could have been related to inconsistent delivery amounts from the spray bottle. Delivery system was pretty basic. I’m not sure how sophisticated the ddavp spay bottle is now because I haven’t tried it .
When i was much younger the only thing available
was vasopressin in oil that was an im injection. That also was somewhat inconsistent. It always worked but the duration could vary from one to as much as 3 days.
So in summary my experience has been that there is variability in how effective these meds are on a day to day basis. Even when I was on chlorpropamide I would experience an occasional day when the medication was not just totally effective. Often wondered if it was related to any special foods. Crazy but I always suspected pork
products but couuld never really prove this.
Hope this provides some useful insight from a long time diabetes insipidus(cranial) patient
TOM C
Very interested to hear your experiences with various medications. Sadly your comment about inconsistent and poor spray delivery resonates with me as I have always commented on the poor quality of the spray delivery system. I often have to waste two or three sprays to ‘prime’ it before every use. I have had my DI for 20 years now and am finding that the spray does not last the full 12 hours (as it used to). I have also experienced odd days when it did not seem to do the job (usually put that down to a low dose from the spray), but am interested in your ‘food’ theory.
my urine osmolality results vary from 150 to 650. with or without desmopressin. i feel i dont have primary insipids, but something is suppresing the hormone.
Hi,
Your post has been so valuable to me… Thank you! I will try and be brief with my condition. I simply woke up one morning with an incredible thirst and needing to urinate about every 20 minutes due to consuming so much liquid. I was having to drink about 25 litres of ice-cold water a day. I didn’t sleep for more than half an hour at a time due to waking up thirsty and needing a wee. I went to the doctors twice, the second time in tears and they told me I was addicted to water and try not to drink so much!! I ended up seeing a private specialist and they sent me straight away for a water deprivation test which confirmed DI. They gave me desmopressin and I went for MRI which also confirmed DI.
At first the Desmopressin was a miracle and worked wonders, for about 6 months I had no issues at all although other than I had no thirst at all which was annoying but that was the only issue. Then I got hyponatremia twice in two months, one of the times resulted in a 5-night stay in hospital. Since then (about 2 months ago now) I have felt generally unwell with good and bad days.
Two days ago I woke up and realised I had only been up once in the night for a wee (normally it would be a few times). Then I realised I also didn’t need to go for a wee which was also very strange as it would normally be the first thing I would do when I woke up. I decided not to take my morning tablets and wait for the DI to kick in as I needed to limit the number of tablets I was taking to control my sodium deficiency. Nothing happened, I appeared to be normal and I couldn’t quite believe it. That was two days ago, and my DI seems to of disappeared as quickly as it came.
I have sent my specialist an email asking what I should do now, but she has not replied. Do you think I should check for other illness or just be happy its gone and get on with my life?
Thank you so much for sharing 
Hi Louisaede, you might look into balancing your electrolites and minerals. Also, adrenal exhaustion can mess up potassium, leading to water imbalances, hypothyroidism and other issues.
I’ve been through the wringer looking after my mother while in hospital and nursing homes. My experience has been that when they treat based on bloodwork rather than clinical exam, things get messed up fast. The more they do, the worse it gets and the blood based treatment protocols seem extremely flawed, causing tons of other problems, medicating my mother within an inch of her life.
I’m responding to the overall theme of your question, which is that you are really feeling like you’re not getting lasting results. If it were me, I’d try a good quality vitamin and mineral supplement, consult a practitioner of TCM, and try a more holistic approach that included dietary and other changes.
If you’re determined to work within your existing medical system, you could try shopping around for a good endocrinologist, as the endocrine system often needs treatment as a whole.
Hi to All. I was the one that asked yesterday if anything new was known. Then saw many of your frustrations which are all to true. From teaching our Doctors, to Medication variations and problems with the DDAVP pumps. They used to work well but they must’ve change suppliers and their junk now. And also Novo-Desmopressin 0.2mg pills not working. I drink from 18 to 26 li. in 24 hrs. With out medication.
I’ve shared some of this before but seeing some of the comments I think it my be worth sharing some again. Ive had DI for 51 years and and im 62 now. Got it from falling backward at school and hitting my head on a cement step.
I started with an intermuscular shot for the first 9 years in the behind,then started with the nasal spray what a blessing.Worked well other than some side effects such as a very sore abdomen which took many many years to figure out on my own.Cant wear a seat belt without a clip holding it from pulling tight.Or any tight clothing including underwear.
But what i want to share mostly is that when The pills came out I tried them but they would only partly kick in for about four hours. talking to my pharmacist he said there was a melt that goes under your tongue but they weren’t covered by our insurance and very expensive. I had tried the regular pills enough to know that there wasnt much of a taste so tried dissolving them under my tongue. But I have to do it lay down at night when I go to bed and not saying a word to my wife or it doesn’t work nearly as well. It takes up to an hr to dissolve. And it will last from 12-30 hrs. When i try during the day upright they dont work.And if it wears off before i go to bed i use a shot of nasal spray. Depending how long till bed I will vary the amount. And if im at home and it wares off a couple hrs. before bed I often just pee and drink. I have to be careful if its not wearing off by bed time not to continue taking the pill because if the meds start stacking I will get a Very Very sore abdomen. So if anybody else has this abdomen problem please let me know. So try this with the pills I found it was a real blessing. And again had to figure this all out on my own. Finally years later the nasal spray lists a side effect of sore abdomen. I chased doctors for 10 years or more with this Very Very sore abdomen only to find out it was a side effect.
So Im not a Doctor but hopefully somebody can benefit from this. 51 years of experience and still learning. Check with your Doc.I know we’re all different and everybody reacts differently, so give it a try theres nothing to lose and a lot to gain. I live in Alberta Canada.
So look forward to some feed back. God Bless Rod
Hi Tom,
I’m coming back to this post after nearly a year and half and coincidentally I have been looking into Chlorpropamide and other medications as alternatives to Desmopressin as it just doesn’t do much for me.
How are you getting on, are you still taking the Desmopressin?
I’ve done a lot of reading over the past couple of years on the subject of DI and there are so many different sub types and possible causes that are never spoken about.
For now I am attempting to find somebody who will allow me to try a different medication. As well as Chlorpropamide, there is Indapamide, Clofibrate, Carbamazepine and Oxcarbazepine which have all been used in the past and shown to improve DI .
Any ideas how I can go about getting one of these medications as my Endocrinologist is just too out of her depth to consider letting me try something different.
Hello
I recently diagnosed with DI
since 2 years I was suffering from severe allergic food reactions
and this Dec I diagnosed with DI
I got DI after 2 days of allergic reaction
don’t know what happen next
this is something new in DI
one of the patient from jammu successfully cured it with the help of doctor
so yes, underlying cause’s treatment can cure this disease but sadly not all doctors are interested in cure… they just give them hormonal treatment…
for cure, history, lifestyle, and immune system plays an important role
Thank you for creating this thread! I was diagnosed with DI about 18 months ago and have had a rocky road since then. I was on tablets to begin with, which lowered my sodium and made me feel rubbish - I ended up in hospital two or three times. Over time my body built up a tolerance to them and they started to work better without causing sodium issues. However, I was still not able to do 2 things that I love without having a horrible dehydrated sleep that night - 1. rigorous exercise (I am a heavy sweater) and 2. having some alcoholic drinks. It seemed that most of the joy had been taken out of my life - the dehydrated sleeps are not really sleep at all - you wake up feeling absolutely dreadful, your body tingling and aching, light-headed and exhausted beyond belief. It actually feels like you have not slept at all. It take me anywhere from 2-5 days to fully get over one of those. 2 months ago i switched to the nasal spray which i found to be far more effective. However, i share the same frustrations as everyone else with the spray not working properly every time, making it very difficult to know if you’ve had enough (or too much). For the last 2 months, I felt great like I was finally back to normal. I can exercise and sweat and I can enjoy a few alcoholic drinks so long as I drink plenty of water and electrolytes as I go. A few nights ago however i had a few glasses of red wine (my favourite drink, but also the one that i find dehydrates me the most!), and had one of the dreaded “dehydrated sleeps” i speak about above. It’s 3 days later and I still feel pretty damn average (no, it’s not a hangover. I know the difference between the 2 and I would far rather have a standard hangover let me tell you!). I’m a bit downtrodden as I’m starting to realise even with the nasal spray being more effective, I will always have to keep my DI front of mind and limit the amount of rigorous exercise and drinking that I do. Grateful if anyone else has any stories or techniques to be able to enjoy these two activities without issues whilst managing their DI. Many thanks
PS I should also say I am intrigued by the prospect of alternative treatments / possible cures. This is particularly relevant for me as they still have not found a cause for my DI - I have had no head injuries and my MRI results are normal. Anyone else in this boat?
This is really something informational, thanks for sharing.
yes i have same issue and im looking into a condition called mast cell disorder. interestingly my wofe also devwloped samw condition as me.,
This is an experience I want to share, my mom is a diabetic and she got to know this 2 years back. I think diabetes starts with these few symptoms like excessive urine, sudden hunger etc which is a kind of disorder but later realize that she is a diabetic.She is more active than me but might be the food we eat, stress and the topographical conditions where we live also play a major role. Later we realized that it can only be controlled by adopting a healthy lifestyle and for that it is very important to know your glucose levels. Her doctor recommended her to try a glucose meter that will measure the sugar levels from time to time. I searched for it and came to know about a CGM device from ginihealth. This device is so smart that it keeps on tracking data all around day and night. It helps her to know what food is making her glucose level spike so that she can alter her food intake, timing is also very important along with the food. It is good that mom has stable glucose levels now because of the careful and smartly managing her diabetic regime after the doc recommended such a device at an early stage of her diabetes.
This thread is old, but I hope you can still see this! I really need help understanding this I may be diagnosed with this and I can’t believe that I fit the profile to have it. I’m wondering if it can be transient. I was treated with strong antibiotics for sibo and my histamine/MCAS just went out of control. Unbelievable insomnia, heart palpitations I haven’t slept more than two hours in a row for the past nine months. Now I’m urinating so much in quantity, have low osamolity and my sodium is creeping higher. I feel like my gut issues and dysbiosis have created this problem. Any help would be so greatly appreciated!
Hi @Recoverandheal Have you had any further research done and found the root cause? I am desperate to find out the root cause.
hi, did you find out the root cause for this? im desperate to find out the cause. for some reason, i seem to have passed on this symptoms to my wife and son. i think its bacterial or viral , but unable to find out what. please help
hi, i too was on antibiotics before this started. Strangely, i have passed this on to my wife. so definitely it some bacteria or virus causing this.
Hallo zusammen,
Im Januar 2022 entwickelte ich einen Diabetes insipidus direkt nach einer Operation zur Biopsie eines gutartigen Tumors, der aus meinem Hypothalamus wuchs. Die Operation wurde durch die Nase durchgeführt, mittels transsphenoidaler Chirurgie, und ich verlor auch die Funktion der Hypophyse.
Zum größten Teil funktionieren meine Hormonersatzpillen leise und effizient, außer Desmopressin, das immer noch herausfordernd sein kann.
Durch das Lesen dieser Beiträge und das Hören aller Geschichten fühle ich mich weniger allein, da ich weiß, dass andere ähnliche Wege gehen.
Ich kann mich voll und ganz mit „dehydrierten Nächten“ identifizieren. Ich trinke keinen Alkohol mehr, aber ich erlebe immer noch Dehydrierung nach einem späten Abendessen. Obwohl meine Frau sich sehr bemüht, das Essen weniger salzig zu machen, enthalten einige Lebensmittel natürlich Salz.
Sogar mit Desmopressin kann ich extrem durstig werden und so viel trinken, dass meine Beine mit Wasser anschwellen. Ich habe früher in Maßen Saft genossen, aber nach der Operation übertreibe ich manchmal. Meine Frau war unglaublich unterstützend und kauft keinen Saft oder zuckerhaltige Getränke, um mir zu helfen, der Versuchung zu widerstehen.
Für alle, die mit Energie-Therapie vertraut sind, habe ich mit zwei Therapeuten gearbeitet, die erwähnten, dass mein DI insipidus behandelt werden könnte, aber es ist ein vorsichtiger, schrittweiser Prozess. Beide sagten, dass mein Körper dazu neigt, sich zunächst auf dringendere Probleme zu konzentrieren, in meinem Fall die verlorene Fähigkeit zu schwitzen, die nach neun Monaten Chemotherapie zur Verkleinerung des Tumors auftrat. Ich arbeite seit fast einem Jahr daran, das Schwitzen wiederzuerlangen, und ich bin froh zu sagen, dass es in den letzten zwei Monaten Fortschritte gegeben hat.
Einer der Therapeuten ist mein Schwager, und er arbeitet kostenlos mit mir. Ich möchte betonen, dass die Energie-Therapie selbst kein Betrug ist, aber es ist wichtig, vorsichtig zu sein und jemanden Vertrauenswürdiges zu wählen, wenn Sie sich dafür entscheiden, es auszuprobieren.