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desmopressin


Radha
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Hi,

I took this medication for 6 months and was never tested while on it. One day I started to "drown" with it because I had too much water in my lungs and had to take an diuretic immediately. The doctor told me never to take it again. Each one is different.

Ernie

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I have never been tested specifically due to this medicine. It was used for years in nasal form as a treatment in kids for bedwetting.

This med has IMPROVED the quality of my life. I take it as needed but usually at least once a day....on bad days, two times. I get so worn out on days where I pee every 20-30 minutes and often forget I need to take this med.

I listen to my body and can sometimes get a long with out it. I REALLY count on this med and what I take for sleep. BUT if I had to run out of one for a few days...it would be the sleep med. Eventually, I may fall asleep even if I am awak 24 hours straight (which used to happen ALL THE TIME) but you can't make the ADH in your body start working and dehydrating myself is no fun.

I did a lot of homework on this med YEARS ago before asking my endocrinologist for it. Clinically it has helped immensely. I could lost 5 lbs of water weight a day before...and I don't need to lose any weight.

Just my perspective.

Though after all these years of this illness I RARELY check my BP, it's extrapolated that this med can help with BP and just RETAINING fluids helps me too. I use less chapstick when I take a dose of this med as I stay on the verge of dehydration w/o it and have for years. No matter how much I drink.

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Radha,

I take DDAVP 2x a day and cannot imagine being without it.

I do know that some POTS docs see it as possibly helping to keep BP up by helping you to retain fluids, as Sophia said, especially at night, so that you do not wake up so dehydrated in the morning.

When the DDAVP wears off before my next dose, I pee non-stop and cannot get any rest.

I don't know how much you are peeing out volume-wise, how much you are drinking, or how often you have to pee. These are all things to consider.

Also, there are some people here who either have partial or full Diabetes Insipidus. I tested for partial DI...but am not sure the test was done properly.

As for blood work, it is important to check your electrolytes regularly especially as you are adjusting the dose and tinkering with it. You need to monitor sodium and chloride. I have had trouble keepin my sodium up sometimes, so you need to watch it with the DDAVP.

That is a pretty brief summary, but hope it helps, I'll try to keep my eye out on this post to see if you have more questions.

My heart really goes out to you b/c I know you have had such a hard time with POTS...and I do hope you will find something to help you have more relief from your discomfort, even in terms of little things like finding a way to bathe that helps you not have so much flaky skin, etc.

Emily

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FOr me DDAVP was initially a life saver, but as time went on I noticed complications that at the time I was not aware were from the DDAVP....

I had Monthly blood work ups to check my electrolite levels on it.

I was developing Hyponatremia from retaining too much free water, and my sodium was very low......

I was feeling pretty bad and ended up stopping it in March...since March I feel MUCH better...... My sodium is back up and I lost all that extra fluid that was in my tissue making me sick, also my POTS symptoms improved dramatically as well.

Upon more research with the drug I learned that it can have an inital good effect but over time the body can become desensitized to it,,,,

This is only my experience... I know many people take it a do great on it like Emily and Sophia.....And I was one of them that for a time was helped by it.

Talk to your Dr. I am sure he/she could give you some more insight on whether it would help you. Good Luck and I hope that this might be a key to getting you feeling better :)

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jenn,

i remembered your story about ddavp and was hoping that you would be able to chip in, since you have a story 'from the other side of the coin'.

i was wondering...i have meant to ask you this before...how did you manage having to pee all of the time when you stopped the DDAVP?

after surgery, my potassium and such were WAY off and i had a big to-do b/c i endced up going unconscious, throwing up all over myself, etc. and having to go back to the hospital in an ambulance. they guessed it was from the electorlyte imbalance which is supposedly common after surgery (and they hadn't checked BEFORE i left the l'hopital)

anyway, the following morning i saw my PCP and he gave me a bunch of potassium and told me to not take my DDAVP for that day. i thought i was going to go out of my mind. it kept me moving post surgery, but i had to pee constantly, especially with getting ivs. i think that i peed about 4500 or so ccs that day, which is way beyond 'normal' output.

i was just wondering how you dealt with having to pee all of the time when you went off of it? this is what keeps me on it at this point, but i would be willing to try other things...

emily

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emily

I wanted to clarify my use of DDAVP. I use it as needed and am not prescribed to take it 2xtimes daily even tho sometimes I do.

I can also sometimes skip it all together on days I notice i am not emtyping my bladder too much.

I am 48 and find my hormones fluctuate and add to the problem. So maybe because I have not taken it 24/7, I have not become 'desensitised' to it. Also my doc told me to check for swelling in the face and eyes which can be a sign I have taken too much DDAVP. On the other hand, fluctuation of female hormones can do the same thing!?

So I just play it by ear but on average, probably take one pill a day but also may skip days. Oh, and on the days I need it I can tell cause when it wears off, I pee a lot until the next dose kicks in . Other times, I may pee a little bit much but NOTHING like I did before having access to DDAVP. having your body turn into a 'natural diuretic' is just as dangerous as taking too much DDAVP. So that is where enlightenment and beingn our own advocate for this drug can help.

For the record, my endo never had me tested for Diabetes Insipidus because the water deprivation can be dangerous for me and the test is very convoluted, controversial and open to broad interpretation. He is an endocrinologist and has learned that over the years that often trial doses of DDAVP and just cut to the chase and help the pt...provided kidney problems have been ruled out and he checks my creatinine leves when I ask....probably once a year at this point but more often in the early years.

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Hi emily - When I was inititially put on the DDAVP I was drinking up to 2 gallons of water a day and had extreme thirst.... This was about 2 years ago. I was hospitalized and put through all the tests which came out ok except for my Vassopressin being low and my Electrolites , especially sodium being very low.

The conclusion was that I was in a catch 22 where the thirst was causing me to drink too much plain water, which in turn was making me pee buckets and flush out my system.

At that point they sent me home on DDAVP.. I immediately stopped having the need to urinate and the thirst got much better. I also along the way learned to watch my fluid intake and take salt tablets which helped tremmdously along with drinking only water with elecrtolite solution in it.

I really felt great on it for about 6 months... Last summer I started having the severe thirst , and urinating again...it would come in spurts for me....

Through the fall up until March I was feeling more sick than I had been in that past year as far as POTS stuff, hypovolemic stuff, and Low sodium, Plus I was retaining all this water....

I went through the water deprivation test at that point and it concluded that I was making my own vassopressin and that my kidneys were functioning normally.

Thats when I went off it... And for some reason going off it actually put my body back to "normal" ........

Since March ( and knock on wood of course!!) I have not had the excessive urinating epidodes...only a few times, and the thirst is not bad...and the good thing is now if I do feel thirsty I can drink and not worry about the hyponatremia part...

I cannot explain why it got better... I usually get up about 1 time maybe 2 in the middle of the night... I used to be up 6 times!

During the day I urinate pretty normal...except for some episodes when I have a POTS flare.

When I saw Dr Grubb he believed that my Lyme disease treatment is what is reversing some of this stuff,,,, I guess I will wait and see.....

I also had a 24 hour urine sodium test which showed that I dump a lot of sodium.......

I would say that if you are feeling good on it, and your DR thinks its ok, and it helps your quality of life than there would not be a reason to go off of it.

Have you had your sodium levels checked?

Like Sophia just posted.... There are tell tale signs to hyponatremia...water retention, puffyness, iritability etc etc.... Your Dr would definelty know what to look for.

Sorry for the lengthy post! I just wanted to share the enitre thing so that you could get the whole picture.. Now you know the ins and out of my daily peeing schedual! LOL :) Take Care.

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I forgot to add that anything such as a cold/flu can throw me off again, and I will end up dumping a tom of urine in that time... I usually do IV fluids if it gets like that and it helps me get through it.

I can imagine sugery would definetly throw all that stuff off for you...

Are you able to get IV fluids at home?

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Jenn

Wow, that is interesting you went off the DDAVP and the Lyme disease could be evening things out for you.

Interesting to read about the so called diabetes insipidus many have been told and "untold" they have....not your case but many others I used to hear about..... since many of us seem to have a 'false' version of it . Whatever my version is, not only does it varie on it's own but somedays I only need one dose of DDAVP and other times need the second dose...OR I don't need any at all.

And all the sodium in the world does not help BUT Gatorade does. I rarely drink straight water anymore unless on a dose of the DDAVP but I keep it within reason of course.

You just never know with our bodies, do we? Or what helps one, hinders another. We are all like snowflakes in our uniqueness!!

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jenn and sophia,

thank you both so much for your further explanations. i really appreciate it.

i did not realize that the water deprivation test was controversial.

at this point i have taken DDAVP for several years without any major problems, except when i took it every 8 hours for a while, i couldn't keep my sodium up. otherwise it seems to be fine. even with it, i pee quite a bit...when it wears off in the mornings i can pee 8 or more times in a couple of hours. and even with it i cannot sleep trhough the night.

i do not have any symptoms of having too much water at this point like the ones you both described...but will always keep an eye out for them. although, post-surgery i felt like i was going to drown some days when i got iv fluids in addition to being on DDAVP.

also, jenn, funny how our lives weave in and out of each others in such neat ways...like we connect on a topic one time, maybe not again for a while, and then our paths cross again at the perfect time...

well, my dr. just asked me if i had ever been really tested for lyme disease. and now this post that you were on DDAVP and improvement of your lyme symptoms made you need it less...and all that...hmmmm....anyway, did you have trouble getting your lyme dianoses? i maybe should post this in a separate post...but don't want to overburden you more!

thanks for answering my questions...i did like hearing the 'whole' story! :lol:

at some point later i may post about pots and lyme and see what you and others have to share...? are you up for that????

as you can see, i'm my usual insomniac self tongith. aaaaaaaarrrrrrrrrrggggggggghhhhhhhhhhhh.

later alligators!

hey, jenn, i'm glad you like your hose! and sophia...it's good to see you here on potsplace...are you sophia from ndrf? surely that's you? it sure sounds like YOU! :)

emily

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Hi emily - It is funny how we all seem to connect there on different topics... I think thats what is so great about this forum!

I have gotten so much information that has changed my life :)

I would be happy to share information and my personal experience with Lyme.....

I became ill in 1993.... Too many symptoms too mention but mainly severe fatigue, muscle weakness, problems with coordination, heart palps, dizzyness, trembling, Cognitive problems, fevers, headaches, numbness ..... Etc....

I went to tons of Dr's at the time and nothing showed on any tests... I was diagnosed with CFS, and told I was just depressed and it would get better. I had Lyme tests at the time that would come back either negative or as they put it "boarderline positive" Like there is such a thing!

It didnt get better, for the next 4 years I got worse and worse... I was so ill and weak I could not lift my head off the pillow. I was nonfunctional and bedridden.... I sought out more Dr's with no answers, and many alternative health practitioners who could not help.

It wasnt until 1997, that they ran another Lyme test...It came back VERY positive.

From then until now I have been on Lyme treatment. I have hit some road blocks along the way with Bad Lyme Dr's and not the right treatment which hindered my progress. ABout 3 years ago I found a great Lyme Dr and got on the right combination of abx which slowly but surely worked... I have gotten better and better.... I can say I am about 80% functional now. And many of my symptoms are completely gone or mild.

In the wake of all this I was diagnosed with dysautonomia... Which was caused by the Lyme Disease. I was also just diagnosed with hypermobility By Dr Grubb as well. All these things contribuited to this dysautonomic like conditon.

Dr Grubb is pretty positive that with continued treatment that I will start to reverse the dysautonomia.... He has about 30 patients with Lyme that triggered this condition and he said those have the best chane of recovery b/c it is still a treatable condition,

Treating the source of the dysautonomia is the best thing you can do. Although there are times when this is not possible such as if it was triggered by a virus, or is genetic....

The biggest problem I have is tolerating the higher doses of abx, b/c of med sensitivities..... As You know its hard for anyone with dysautonomia to take an antibiotic, and for people with Lyme as the cause it is the thing they have to take.

Bottom line is that abx have saved my life, and I am so thankful for the progress I have made.

Lyme is a debilitaing disease that left untreated can wreck havoc...

ABout testing: Its very hard to go by any of the testing available to tell you whether you actually have Lyme Disease... The tests are not accurate...

when you have the Lyme bacteria in you for a long time your own body stops making antibodies to it b.c it views the Lyme as part of the body... This makes any blood test irrelevant. There are specialized tests that if sent to the right Labs have a better chance of showing up such as a PCR or FISH test.

I was lucky I got some positive tests,,,as well as Positive tests for babesiosis, erlichiosis, and bartonella, which are coinfections that more people than not have along with the Lyme. Those also need to be treated to make a full recovery.

Most of the good Lyme Dr's are here in the Northeast. What makes it difficult is that most mainstream Dr;s do not understand the complexities of the Disease and go by testing alone, and not symptoms..... ANd even if they do decide to treat the person for Lyme they di not out them on the right disage, combo of abx as well as not wanting to keep them on it for long term.

www.lymenet.org is a good website to go to that can help give you info on Lyem disease, and also info on Dr's.....

Let me know if I can help in any way,

Maybe I should have made a separate post for this since it is so lengthy.....!

Anyway, I hope this could help you a little ...... :)

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  • 1 year later...

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!

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I take DDAVP (desmopressin) always at night.... and in the morning. 1/4 tab of .2 mg pill

I drink my morning coffee and I drink gatorade (but not as much in winter as in summer as the house is cold due to high utility bills) I drink water in between the gatorade but if I drink STRAIGHT WATER all the time, I wash out sodium and other things. But I do drink lots more period in the summer as house is hot and I use icey drinks to stay cool. we must conserve with AC as well.

I do not measure things after all these years so sorry, can't even give you a ballpark.

With the ddavp I use less chapstick and somedays know right away when it wears off as I start peeing every 10 minutes or so and I wake up the same way if I don't take enough at night. tough to get exact dose on 1/4 pill but stuff is expensive and what I have I got from drug company a year ago.

I hope you figure out a routine as it DOES make a difference for me and I love not running to the bathroom so much. I HATED having to use the public restroom when just running out of house for a BRIEF errand. For me DDAVP and chapstick is a must.

:)

Also I hope your doctor continues to monitor your blood work so you can tell what the ddavp is doing if you have bad side effects.

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I take .1 mg of DDAVP every 12 hours--and make sure one dose is close to bedtime so I can get some sleep.

I'm like Sophia! I don't keep track of stuff anymore...I just kind of judge what I need. But my ANS doc still recommends 2L at least of fluids a day and I am sure I drink at least this much. Probably b/w 2-3L a day. The endo said to stay at about 2L, but he wasn't too on the ball.

My ANS doc also still lets me get IV fluids even with the DDAVP in a crisis situation. 2L over 2 hours...

Hope this helps a wee bit (no pun intended!)

Emily

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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

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I still pee...just MUCH less frequently. As the DDAVP wears off though I have to pee a lot! It's annoying.

Anyways, as for the full head, etc. only sometimes when I get fluids, but it wears off.

As for having my blood monitored...I always have monthly-6 week appts. with my PCP and always have bloodwork done--to monitor sodium as well as many other things I have going on. The only time I couldn't keep my sodium levels up was when I was taking DDAVP every 8 hours instead of every 12.

I am not sure this is answering your question?

Emily

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Of course one should still urinate on DDAVP or you have taken too much.

Should go much less frequently. But as Em said, when it wears off, some days worse than others, I start to urinate too much until I take a second dose...as often as every 10-15 minutes even if drinking nothing. I can go some days without it and it's worsen by female hormonal fluctuations.

If you are on this medication, you really need to be addressing your individual situation with your doctor as one should not compare one's situation with another patient.

Even if we do share many things in common.

:(

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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.

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