My diabetes insipidus journey

Hi finicky. Yes I have had very similar challenges,with the pills. I have have had DI for 48 years. I used the rhinal for quite a few years,then the the vapour mist for many years. The mist lasted me twice as long as the soulution. Tried the pills ten years ago and they did work either,until I figured out on my own two years ago,to desolve them under my tongue,laying down at bedtime without talking,and they last 18-36 hr. But if I try desolving them under my tongue while I'm up they only last a very short time. 3-4 hours if they work at all. When the pills run out during the day I just use a little shot or vapour mist to get me through to bed time. Curious how do you know when your over dosing. I get a very sore abdomen. I use the 0.2 mg,you can get it in 0.1 ,but it doesn't last very long for me. But if it lasts more than 24 hours for more than few days let it run out ,and use a bit of vapour mist to get you through till bed time,or it will start stack up. I find the two work fairly well together. Try that and let us know how it works. Rod

Hi Rod. I never Heard of the vapor mist. What I just ordered was the nasal spray because the rhinal tube is no longer available. The problem is that the spray delivers double the dose I normally take. I think the only thing I can do is spray it in my nostril and try to to let some of it run out and hope not to get too much. It's been a very long time since I've Had an overdose and I remember getting a bad headache. That's why I like the rhinal tube, because I can measure the small amount that I really need. I only need to take a small amount once to twice a day like .05 mL . How do you get the Dr to write scripts for the pill and the mist? Thanks for your reply

Hi there, I also have DI and suffer from headaches since it was diagnosed... just wondering as you mentioned with an overdose of medication you got a very bad headache... perhaps i have having too large of a dose hence why i am suffering headaches?

i use the nasal spray &  have never tried any other medication....

Thanks 

I can say that I was just diagnosed after years of gradually experiencing bouts of fatigue that would keep me in bed for sometimes 12-13 hours at a time, with my fatigue so bad that I got anxiety over making plans with people, and often had to cancel plans and even work just to "recover" all day since waking and not feeling decent enough to start my day until LATE afternoon or early-late evening....not a way to live. It was about one ear ago when my extreme thirst symptom turned on like a light switch, despite having a bigger drive for water than most people for year prior....but this thirst was like none other.

Now, I am a very health conscious person. My health is stellar aside from this issue and having genital herpes since about 2001 (which is basically dormant the majority of the year). I am set back with my energy/I do get bad fatigue sometimes when this virus surfaces, but typically I know what it feels like when it starts to become active so I dowse it immediately with acyclovir for maybe two days and it's back to being dormant without having to experience any if much repercussion on my skin.

Otherwise I exercise regularly (weights 5xweek), yoga, hiking....and eat a whole food diet, do not smoke, have alcohol very occasionally, manage my stress levels as well as I can, etc.

So naturally, I would rather not take any medication that is not necessary. Therefore....to circle back to your inquiry (with a little added background of my personal health scenario), I started out with a half of a 0.1mg desmopressin tablet for the first week. I still woke up with terrible thirst and feeling like I hadn't got a wink of sleep (really bad exhaustion...not a typical "sleepiness", mind you...it feels like a straight-up nervous system depth kind of wiped out feeling...whose remedy is to try to fall back asleep and sleep it off and drink huge gulps of water of course).

SO....I am not trying one 0.1mg tablet broken up into two times a day. I am breaking it up because the first time I took a whole 0.1 mg tablet when I picked it up from the pharmacy for the first time a week ago, it gave me quite the buzz...like I drank 3 cups of coffee or something. Don't get me wrong, it felt great! But it also didn't feel "right", and especially at 6pm at night with sleep just around the corner.

Also i will note, I took a half a 0.1mg tablet before a weight training session the other evening (5pm took it, began training at about 6), and my sprint warm up had to be cut short as I felt overexerted...like all of the sudden I wasn't conditioned for the sprints that I normally do; it felt much harder, my heart felt like it couldn't keep up. And then....during my deadlifts that followed, I got to maybe my 6th rep out of 12 and was incredibly winded! I had to stop and seriously catch my breath something fierce! It did not feel right, like my system was having to work too hard to do something that otherwise my body can withstand with effort however with grace.

Also notable is that night when I laid down to sleep, my heart felt like it was working too hard. The rest of my body was relaxed and ready for slumber...totally in my parasympathetic state, but my chest...my heart felt like it was still wide awake and working far too hard for someone who is lying down and preparing to drift off to sleep.

One more thing... I've been experiencing lingering headaches for the past like, 4 days now. And I never get headaches... The first few days no headaches. But now it's just ever-present, like my brain is slightly inflamed.

I hope this is helpful to you in some way. Also, if you have any insight for me, I am much appreciative!

PS: Not sure how my Central Diabetes Insipidus was triggered, but I did have a major blow to the front of my head from a skateboard accident (face slammed into the concrete below me). This was maybe in 2001/2002, and I can't pinpoint an exact day or month that my fatigue began or my drive for water increased, but my fatigue was a gradual increasing issue until today when now it is a really tough endeavor to get many if not most of my days started....but my extreme water need as mentioned above, did flash on one day from a simple "I drink more water than most people" to "I need water right now or I won't know what to do with myself".

Hi Kimberly,

If I were you I would keep trying to decrease the dose of Desmopressin to the lowest dose possible (I know that's not exactly rocket science). Your headaches may well be due to hyponatremia, in which case more rather than urine output may be just what you need. Have patience, though: your body will eventually figure out what it needs and your intelligence will go along with it. My saving grace is my bathroom scale, which I check at bedtime and on arising to ascertain if I am accumulating water thus potentally triggering hyponatremia, which calls for less Desmopressin, or whether I am maintaining my regular morning weight, thus taking the correct dose for me. It really becomes routine after awhile as long as you have your trusty scale,

One other observation to share with you; I too, lead a very healthy and lifestyle, even at 78, and I too have no idea where my DI came from or why, except I have several autoimmune issues (low thyroid, sensory hearing loss, etc), so my endocrinologist assumed the DI might also have an autoimmune basis (FYI: hypophysitis = inflammation of the pituitary gland.) In any event I was prescribed high dose steroids for about 5 months and then after a total of about 12 months of DI symptoms I began needing less and less of my already small dose of Desmopressin--to the point where I don't really need it at all! So there's hope for the small percentage of DI patients who may have an autoimmune cause for their disease. As a physician, I believe it would be worth checking out for others with DI in the absence of the usual obvious causes.

Thank you so much for your thoughtful, thorough, and quick response!

You have my wheels turning... What I forgot to mention and I find particularly interesting after reading your comment on hyponatremia concerning my dosage, is that last night I woke up in a wet t-shirt; I had apparently sweat quite a bit in the night, which basically never happens to me unless for example I have the flue or something of that nature. I am thinking now that perhaps it's possible that the full tablet despite being split in two separate doses over the day, was maybe more than I needed and my body decided to sweat profusely in order to remove the extra sodium from my body. (I still don't quite understand the relationship between serum sodium and body sodium and how they differ or affect/don't affect each other so perhaps this scenario is not related to potential hyponatremia, but it's worth mentioning). Any thoughts about this? 

Using a scale to track my water fluctuation is a great idea, thank you! I was actually wondering about this since having "partial" DI my production of Vassopressin fluctuates. I will start doing this.

Also very interesting to learn the potential connection between hypophysitis and DI. I will be scheduling an MRI for my brain within the next week. I assume the MRI will be able to judge not only if I have a tumor growing or not, but also if there is any indication of inflammation (?)....

My mother has hashimotos and low thyroid, however she leads a healthy, normal life with the help of her thyroid medication, Synthroid. It was ruled out by a doctor that I also have an autoimmune disease, but not all tests are fool proof. It's possible. I look forward to getting more information soon from my MRI.

I love to hear that there is a glimpse of hope anyway that perhaps I won't need to take any Desmopressin...or at least perhaps very little of it. I like to error on the side favoring "less" over "more". That goes without saying!

Thanks again for your help and insight!

Kimberly

Hi Edward,

Just reading through your post and see you mention that you have an autoimmune cause for your DI.  I'm just wondering at what point did the Dr diagnose it as autoimmune?

I was diagnosed with DI in April 2015.  After about a year, I lost my oestrogen hormone and now been told that my growth hormone is on the decline too. 

The growth hormone has effected me as it's on the PBS and costs several thousand p/year so Dr said for me to hold off on taking it. But I definitely feel weaker and more tired than I used too...

Dr hasn't said it's autoimmune to date but I'm just guessing that's where it's headed.... 

My quality of sleep on Desmopressin even on lowest doses such as 1/4 or the smallest tablet was generally poor--restless with loads of dreams--hence I have no suggestions.

Hi there, my thirst is definitey gone when I take my nasal spray Minirin.  Without medication I drink around 15L p/day and it's totally debilitating.... Have you tried the nasal spray over tablets?

This is great information, thank you. I have just started experimenting with desmopresson and I can say that it's been frustrating trying to figure it all out on my own. I realized one evening while at the gym that there was a connection between sweating and a headache that came on. Right away I thought of the diluted salt in my blood due to desmopressin....so I ate a small bag of peanuts to get a little salt in me, and my headache vanished. Now I will carry some sort of salted product with me at all times just in case I need to readjust my blood serum sodium levels due to varying factors such as the above. A good rule of thumb is that when I get a headache, then the desmopressin is working a little too well and I need to eat a little salt. And I would gather on the other end of the spectrum, that if I'm super thirsty, then my serum sodium levels are too high (because I'm peeing out all my water), and it needs to be diluted by taking a bit of desmopressin. But I read somewhere that you should first hydrate before taking it....and then after taking it you should watch your water intake and not drink too much water while it's in your system...because then you risk diluting your serum sodium level too much and go into an imbalance in the other direction, ie not enough salt in your blood/too much water in your blood). It's a fine balance that I'm trying to figure out how to monitor....the most frustrating part really.