My diabetes insipidus journey

Hello Guest

I've been battling with this disease for a couple of years. I started out with the same systems and thought it was my prostate causing my frequent urination and not sleeping, tiredness. After seeing urologists to no avail, my wife found the systems on the internet to which my family doctor sent me in for testing. I take the tablets, but I found out taking to much lowered my sault after a stint in the hospital. So now I take one a day maybe 2 but spread apart like 8 to 12hrs apart. Also a good idea is to get the doctor to prescribe potassium chloride powder, I mix it in a bottle of water or Gatorade to help with the dehydration. I've just joined and glad to meet others like me. I know the struggle, and yes to talk and compare notes is great to help one another.

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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".

I do not have such disease but one of my relatives has almost the same case as you.