Pianist

Hi, I'm experiencing my first flu on desmopressin (starting taking about 3 months ago - they thought I had Insipidus because desmo fixed everything for a while, now it's not). I've gotten burned quite a bit with water intoxication so I usually take it very easy with fluids while on the desmo (under .5liter). I'm having signs that I'm EXTREMELY dehydrated (i.e. lips plastered to my gums, quick weight loss, etc). Also, normally I don't urinate while on desmo and last few days I have been quite a bit. Any body have experience with colds/flu + desmopressin? Thanks.

I've read that adrenal glands constrict the blood vessels. This causes many of the symptoms we are experiencing (dizziness, blood pooling, brain fog, fatigue) So, does the adrenal glands constricting the blood vessels cause low blood volume? (improper secretion of adrenaline) or Does low blood volume cause the body to react, using the adrenal glands to constrict the blood vessels to normalize blood pressure? Or both? I'm trying to figure out the culprit. Here's an add on: Have you guys heard of someone born with narrow blood vessels, and would this cause low blood volume? Is this testable?

For those of you who use salt: 1) Wont your body just adapt and get rid of more salt? 2) How much salt can you safely have in a day? or if your body is getting rid of too much does it not matter? I've been putting 1/4 - 1/2 teaspoon of salt in a bottle of water or gatoraid several times a day, and I can't help but think this is doing something horrible to my kidneys.

How exactly do you manage electrolytes with suppliments? I'm currently attempting to retain more fluid by using more salt. I'm putting about a teaspoon extra salt in each 20oz bottle of gatoraid, and drinking about 1L of pedialyte a day. I've been aiming for about 3L of fluid in a day. If you salt eating more salt will you're body reatin more fluid? Is this temporary (will the bodies metabolism start to adapt and get rid of more salt?) Thanks!

Hmmm... when I'm on desmopressin it stops me completely (9 hours for the nasal spray, 5 hours for the pill). Have you ever heard of anyone with DI where the desmopressin completely stops them from urinating? When the nephrologist diagnosed me with "partial Central DI" he said it is wierd that my electrolytes were balanced, my kidney must be very sensitive and adjusting. My family doctor also said it was wierd, that my electrolyte balance should have been out of whack. The next visit the nephrologist he kind of backpedaled and said my sodium readings were unexpected so I should see this super-specialist 3 hours away about "possible central DI and polyuria". I have yet to hear back from this doctor, looks like it might be months and months before a visit. In the mean time the severe dehydration symptoms are coming back. I can't believe 2 months ago when I started taking desmopressin I felt like an 18 year old. I wake up feeling like the mummy, no matter how much I drink. I'm starting to get overheated easily. Last time I saw my opthomologist she said my eye pressure is getting worse (eventually will cause blindness) and the underlying condition needs to solved ASAP. I saw a neuro-opthomologist and he said I have the severe dry eyes of a 75 year old (I'm 35) and that my youth *should* protect me from resulting permanent eye damage for now. My job is becoming almost impossible (computer scientist), mainly from eye pain. My wife and I were starting to think about kids before this all started 1.5 years ago and now I can't believe it may never happen, that I might not be around for much longer.

I'm curious about this too. I haven't been able to figure out how much to drink. Lately, I've been drinking about 3-4 liters in a day (water, gatoraide, and pedialyte). My doctor says 2.5L, 3 if I do cardio. Whatever I do I can't seem to get hydrated. They think I might have Central Diabetes Insipidus, but they agree that it doesn't make sense that my electrolyte levels were balanced. Desmopressin made me feel terrific for about 2 weeks then slowly I'm getting more and more dehydrated. When I'm on the med, if I drink I get hyponatremic, while I'm off if I drink I pee it out 30 min to an hour later.

I'm having trouble with fluids, that's for sure. In retrospect I can see I've been dehydrated my whole life. Starting about 1.5 year ago the dehydration started causing severe problems with my eyes and brain. Two months ago a doctor put me on Desmopressin, thinking it was Insipidus and it made me feel like superman, many lifelong problems disappeared along with the recent severe problems, but symptoms have come back over the past 3 months - like my body has adapted to make me dehydrated again. Before putting me on the medication, the doctors thought it was wierd because my electrolytes were balanced, which they shouldn't be with Insipidus. I'm starting to suspect I'm hypovolemic, total balanced fluid is low. Has anybody seen anything like this? Is anyone out there hypovolemic? How can you test for it? Have you found ways to fight it? Thanks. (P.S.: do you guys use "tricks" to hydrate, such as adding salt or using salt pills?)

- My Nephrologist backpedaled from his DI diagnoses and said my sodium reading was wierd last time and said I need to see a "Super specialist" 3 hours away.. (still haven't heard from her, it could be months) - Neuro-Opthomologist said I have the dry eyes of a 75 year old and my underlying condition is causing it.

So while you are on the desmo you don't urinate? How long does that last? How long are you off the med (breakthrough). How long do you allow that to happen before you take the medication again? Have any of you guys experienced water intoxication (too much free water vs sodium) where you feel spacy, get a building pressure in the head? Thanks, Pianist

I'm having lots of trouble with my regime of desmopressin & liquid and I was wondering what kind of regime you guys use. When I initially started desmopressin I felt like Superman for about 1-2 weeks. I was taking 1 spray in the morning. Symptoms (dehydration) began to return and I desperately tried different routines. 2 sprays in the morning, 1 in the morning, 1 at night. 1 in the morning, 1 pill in the afternoon, 1 spray at night. ad nauseum. I was get more and more dehydrated and also experiencing terrible bouts of water intoxication (which at the time, I couldn't figure out how that was possible). I realized recently that I was not drinking very much when I was off the desmo because I thought "why bother - I just pee it out". I was trying to hydrate mainly during the time I was on desmo and was getting hyponatremic alot. Over the past week I've been using a new strategy: hardly drinking anything while on desmopressin and drinking alot while off. This seems to be helping somewhat. I'm also trying to avoid drinking too much because of an incident before desmopressin. I started drinking a huge amount, felt good at first, but then terrible after about 2 weeks. My doctor says I probably "washed out" my system (electrolytes). Currently, I'm trying to drink about 2-4L in a day and output about the same amount. It seems no matter what I do I wake up with a extremely dry, gummy, sticky throat and mouth. My goal is to eliminate that along with the day long headache, and non-restful sleep. I was wondering what your day is like. Demopressin: how, much and when? Water: how much and when? Are you using salt, sports drinks, pedialyte? Salting your drinks? Any help would be greatly appreciated!

Tonight my body is not letting me sleep. I'm not sure whether to go to the emergency room or not. I felt kinda bad before I went to bed (shivers, weak). My body woke me up an hour later and I was wide awake. That was about 3.5 hours ago. I've tried several times to go to sleep. Feels like adrenaline might be in my system. There's a weird burny feeling in my chest. My blood pressure is a little high. When I woke up at first my breathing felt labored, I have very dry mouth. I saw the kidney doctor ealier today and he said I looked very deydrated. Right after that I took desmopressin (2:30p) and have been drinking fluids all day. Took desmopressin again at 11p. Only urinated a few times. I've been continuing to sip liquids.. I can't tell if I'm water intoxicated or dehydrated and unable to Yesterday almost the same thing happened, but after taking desmo and drinking some fluids I felt better and got about 6.5 hours sleep. My dry throat/mouth/sticky spit slowly went away. (Age 35, Incomplete Central Insipidus)

I'm curious about everybody's experiences with water intoxication and what it feels like.. thank you!

Was wondering if anyone has had experiences like this: Went to eye doc yesterday. High eye pressure (24 and 21). I was feeling really bad (super dry mouth, etc) and scared afterward and after taking desmo and water I got somewhat better. Blood pressure was also high. Saw Nephrologist today, blood pressure still high. He confirmed Incomplete Central Insipidus. No problems with MRI or kidney ultrasound. No one is saying anything about what might be causing the eye pressure. I've been to the eye doctor many times this year and they never said anything about dangerous eye pressure (cam cause Glaucoma and/or blindness). Has anyone heard of Insipidus or dehydration causing eye pressure (and other problems)? I assumed that when the eye probs went away after Desmopressin that dehydration was causing them, Then they came back. I'm really worried about losing my eyes at age 35. Just for some background: all symptoms started about same time Sept last year and got progressively worse until Desmopressin - eye floaters, severe dry eye, strain, headaches, thinking impaired, memory impared, waking up feeling terrible every morning. I felt like a superhero first week or so of Desmopressin. Now some of the symptoms are back. Started desmo about 5 weeks ago. Any help would be greatly appreciated.

> P.s. What makes you think you had the "water intoxication" problem since many things can mimic those symptoms can't they? Pressure/headache/spacy-head feeling that builds in intensity a while after ceasing drinking (also fatigue, and malaise). After "Breakthrough" (urinating a lot) feelings subside. Sometimes headache sticks around, I guess the brain doesn't like being squeezed against the skull! This seems to start somewhere between 1 12oz bottle of water/gatoraid and 3 12 oz bottles of water/gatoraid. My nephrologist said to be very careful about this because hyponatremia can be extremely dangerous. It is true that when I was severely dehydrated before going on desmopressin I did have spacey head/pressure/headache feelings as well... this is seems so hopeless. Have you guys experienced "Pressure/headache/spacy-head feeling" after taking desmo and drinking?

Sorry, I misnamed the other one. I'm scared and a bit scatter brained tonight. I was thinkingly lately that I'm experiencing water intoxication and dehydration at the same time. Before I thought that dehydration and water intoxication are at the opposite ends of the spectrum (water intox being over-hydration). The doctor explained that water intox is an imbalance of fluid makeup inside and outside of cells. This causes pressure on the cell walls as material moves from cells to outside. So is it possible during dehydration you have an over low volume of fluid and with water intox (hyponatremia) you only have an imbalance of the fluids.. that's why severely dehyd individuals have to go to the hospital for special balanced IVs? So, I'm increasing my "free water" too quickly, but am still dehydrated because I have low fluid volume? (on desmopressin 10mcg spray for possible Insipidus) Thank you for any help!

Desmopressin (10mcg spray) is supposed to last about 9 hours. I've experienced things that lead me to believe that it can effect the body long after that (20 hours?). Anyone experience this? Also, one night I took a spray, and the next day I appeared to get water intoxication even though I didn't take any in the morning. Does this make sense? Any help is greatly appreciated!!