nunntrio Posted June 17, 2011 Report Share Posted June 17, 2011 I am always very scared to try a new medication. I tend to react badly to all of them. How helpful has this drug to others? I am just really nervous. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 17, 2011 Report Share Posted June 17, 2011 Firewatcher takes it. Hopefully she'll chime in.I was prescribed it, but only took a half pill once and was scared to take it again. I didn't have any adverse reaction from it, I was just not positive I needed it. I don't think the doctor tested me correctly.Can you tell us how the doctor tested you, and what your results were? I had an ADH of 0.8, twice. Quote Link to comment Share on other sites More sharing options...
nunntrio Posted June 17, 2011 Author Report Share Posted June 17, 2011 OK now I am a little scared. I am not even sure what ADH is. From what I read, this is a drug for Diabetes Insipidus. I have never been tested for this and do not have any of the symptoms. I do not have excessive thirst. I thought I was being perscribed this to help with vasoconstriction and help with my low blood pressure. I am so fearful of new medications and am going on vacation in 1 week. I do not want to have a bad reaction with I am out of town. I might call the Dr. and get some more clarification on why he is recommending this. Is this a short acting drug? If I have a bad reaction will it short lived? Thanks for the input. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 17, 2011 Report Share Posted June 17, 2011 Well, it must be a pretty "mild" drug, as they prescribe it to children for bed-wetting. So, it must not be a harsh drug at all.Wow, if it helps with vasoconstriction, I need to try it again!! I have such a bad time with vasodilation.My ADH(antidiuretic hormone) was low twice, taken six weeks apart. But, Firewatcher said you need to do an in-hospital water deprivation test, and I had not had that done. But, I am always thirsty, drink alot, and urinate alot. My last few 24-hour urine tests have shown a collection of 3500 ml. I know some with DI go alot more, but I think a normal average output is 2000 ml. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted June 17, 2011 Report Share Posted June 17, 2011 DDAVP is not a "mild" drug, actually it is a biological sledge hammer. It is a vasopressin analog, or a synthetic version of a naturally occurring pituitary hormone. It acts by causing the kidney to retain water, but not sodium. The most dangerous side effect to watch for is hyponatremia (low serum sodium.) This is not a problem unless you drink too much water or you don't allow a "dump" to shed the excess water. It works for POTS by causing volume expansion and raising low BP. I do know of several kids that take it for bedwetting, but they don't drink anything after they take it at bedtime and during the day, they urinate normally. I only had issues with it when I first started it and continued to drink like a POTSy. You can't just drink when you want, you need to limit yourself to drinking only when thirsty. Other than that it has been a "wonder-drug" for me. While I am on it, my HR and BP are absolutely normal regardless of my position.Take it once and see how you feel, it is generally out of my system by 7 hours, just don't guzzle anything other than gatorade. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 17, 2011 Report Share Posted June 17, 2011 Well, in light of the recent posts about the awful side-effects of the SSRIs, that is what I was comparing it to. Mild in how it makes you feel, not in its effects. In comparing to SSRIs and other "harsh" drugs, the side effects of desmopressin must be "mild" is how I meant. Yes, I do understand that while on it one has to limit their fluid intake due to sodium balance, but once again, I was talking about the noticeable effects one would feel taking it.I am like Nunntrio, and hate to take anything because I am afraid of how I will feel. The one day I took the Desmopressin, it felt like a placebo. Quote Link to comment Share on other sites More sharing options...
nunntrio Posted June 17, 2011 Author Report Share Posted June 17, 2011 Firewatcher - Thanks so much for the reply!! I appreciate the tip about not drinking to much afterwards. What dose do you take? Quote Link to comment Share on other sites More sharing options...
Birdlady Posted June 17, 2011 Report Share Posted June 17, 2011 Everything Firewatcher said is spot on. I took it for a while, but honestly cannot say it did anything for me. I just got sick of having to micromanage my fluid intake, so I stopped it. I only had issues with it when I first started it and continued to drink like a POTSy. You can't just drink when you want, you need to limit yourself to drinking only when thirsty.This is extremely important to remember and your doctor should be testing your sodium levels while on this medication at regular intervals. Quote Link to comment Share on other sites More sharing options...
nunntrio Posted June 17, 2011 Author Report Share Posted June 17, 2011 This is extremely important to remember and your doctor should be testing your sodium levels while on this medication at regular intervals.I am having my sodium levels tested in two weeks after starting. I guess I will give it a shot and see how it goes. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted June 17, 2011 Report Share Posted June 17, 2011 I take .1mg 2x day. My "dump" is between 3 and 10pm and can be a pain, depending on how much I've drunk. I'm severely plasma deficient, so it was a huge help for me. I had my sodium levels checked several times in the first two weeks, but only had problems when I was on a constant dose, with no "dump." As long as you allow a time to shed the excess water, it is no big deal.One strange issue to be aware of is exercise induced hyponatremia. I found out much later that I was inducing this by exercising while on dDAVP in the middle of its action. I was exercising at my maximum fluid retention time and technically hyponatremic due to the dDAVP, so I was having bad post exercise effects. I had to double my sodium intake to even this out. Quote Link to comment Share on other sites More sharing options...
nunntrio Posted June 17, 2011 Author Report Share Posted June 17, 2011 I take .1mg 2x day. My "dump" is between 3 and 10pm and can be a pain, depending on how much I've drunk. I'm severely plasma deficient, so it was a huge help for me. I had my sodium levels checked several times in the first two weeks, but only had problems when I was on a constant dose, with no "dump." As long as you allow a time to shed the excess water, it is no big deal.One strange issue to be aware of is exercise induced hyponatremia. I found out much later that I was inducing this by exercising while on dDAVP in the middle of its action. I was exercising at my maximum fluid retention time and technically hyponatremic due to the dDAVP, so I was having bad post exercise effects. I had to double my sodium intake to even this out.I was prescribed .2mg to take at night only. I am guessing since I am only taking it at night I should be able to drink and exercise normally during the day. Do you know when the max. fluid retention time with this drug? Thank you for all your info. I am so greatful for this forum. I feel more at ease about taking it now. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted June 17, 2011 Report Share Posted June 17, 2011 (edited) "I was prescribed .2mg to take at night only. I am guessing since I am only taking it at night I should be able to drink and exercise normally during the day. Do you know when the max. fluid retention time with this drug?"Since you probably won't be drinking at night, it should be OK. Every person is different with drug metabolism, so it may clear faster or slower in your system. It takes me 7 hours to clear .1mg. You will know (very clearly!) when it has worn off because you'll get thirsty and then pee buckets if you've drunk a lot. If you've limited your intake, it won't be too bad, but sometimes it can be urgent and copious! I can usually tell it is coming because I'll get thirsty before my bladder fills enough to need to find a bathroom. Be aware, though, you can make a LOT of urine in a short amount of time! And if you take it too early at night you can wet the bed in your sleep when it wears off if you are sleeping deeply. Edited June 17, 2011 by firewatcher Quote Link to comment Share on other sites More sharing options...
nunntrio Posted June 17, 2011 Author Report Share Posted June 17, 2011 "I was prescribed .2mg to take at night only. I am guessing since I am only taking it at night I should be able to drink and exercise normally during the day. Do you know when the max. fluid retention time with this drug?"Since you probably won't be drinking at night, it should be OK. Every person is different with drug metabolism, so it may clear faster or slower in your system. It takes me 7 hours to clear .1mg. You will know (very clearly!) when it has worn off because you'll get thirsty and then pee buckets if you've drunk a lot. If you've limited your intake, it won't be too bad, but sometimes it can be urgent and copious! I can usually tell it is coming because I'll get thirsty before my bladder fills enough to need to find a bathroom. Be aware, though, you can make a LOT of urine in a short amount of time!Interesting...I can't wait. I guess I will stay pretty close to home the first few days. Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted June 17, 2011 Report Share Posted June 17, 2011 Been using DDAVP for 10 yrs. Life changing. keeps me from being dehydated. Use as needed.never had water deprivation test to check ADH levels..Dr said too dangerous.So we went by clinical symptoms & I no longer lose 5lbs a day from EXCESS urination. Been fine for me. Good luck. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted June 17, 2011 Report Share Posted June 17, 2011 "I guess I will stay pretty close to home the first few days."Nah, I was on a field trip with my youngest when my first dose wore off. You just need ready access to a bathroom...fast! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted June 18, 2011 Report Share Posted June 18, 2011 I keep wondering why this medicine doesn't fix POTS. Seems like it should address our issues. I saw a neurologist a few years ago who "specialized" in CFS and I told him about my nighttime frequent urination problem. And he very matter of factly said, "oh that's an easy one - you want to stop peeing at night, take this" and he prescribed DDAVP. And he reassured me that it was a benign drug and said small children take it. But I never trust Dr's claims that a drug is "benign." I think I cut it in half and tried it a few times, but felt weird the next day so didn't continue. I don't think I gave it a fair chance - I still have some, maybe I'll try again. Hope it helps you - let us know what happens. Quote Link to comment Share on other sites More sharing options...
Serbo Posted June 25, 2011 Report Share Posted June 25, 2011 Just bumping this as could deal with getting some advice from others going through similar...I am undiagnosed but suspected POTS following an ablation. have been seeing an endo recently and was referred for dehydration test folowing result of 24 hour urine.The dehydration test had to be terminated within 3 hours as had lost 5% of body weight. Don't think I concentrated even after ddavp as they were still picking up high sodium in collection. My BP and hr increased rather than decreased as I became more and more dehydrated. BP was up to 150 over 90 and HR almost up to 130 when they terminated. Ddavp gave me a headache, but suspect this was due to drinking to much water after they stopped the test but before the injection. Feeling very confused as my experience seems to be contrary to others on here who did eventually manage to concentrate or had low BP as they became more dehydrated.Seeing the endo for full results in a few weeks, but judging by his initial comments he will go down the DI route, next step may be MRI and Ddavp prescription. I'm worried though as he's not a believer in POTS so I'm reluctant to start this drug without pots considerations taken in to account. I have plenty of pre syncope, Brady, fluctuating high/lo BP but mostly low, and I don't know how this drug will affect this.Would appreciate any thoughts on if my test experience sounded typical of a POTs patient or possibly something else. Not really sure how to address all this with my endo. He takes lying/standing BP when I see him and there's no immediate drop, I tell him this is because I'm loaded on salt, but with no immediate drop he's dismissing pots. I feel the dehydration test has depleted all my salts, much more pre syncope over the last few days and generally feeling rubbish.Thanks for reading, appreciate the support. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted June 25, 2011 Report Share Posted June 25, 2011 "...dehydration test folowing result of 24 hour urine."Was it the amount or the osmolality of the urine, or both that prompted the test?"Don't think I concentrated even after ddavp as they were still picking up high sodium in collection."Some POTS patients are notoriously bad at sodium retention. There is also a condition with polyuria called Cerebral Salt Wasting Syndrome: Wikipedia article "My BP and hr increased rather than decreased as I became more and more dehydrated. BP was up to 150 over 90 and HR almost up to 130 when they terminated."My HR and BP go up initially when dehydrated, but when I get really dehydrated they plummet. I walked into my dehydration test with a serum OSM of 304, which is well beyond where the test should have stopped, and I had already lost more than 5% of my body weight in the days before preparation for my test...so my results are questionable.DDAVP can give some people headaches, but if you truly have DI, you need to take it! As for the BP drop with POTS, that isn't part of the criteria. I go hypertensive when upright, as do many patients here. I'd definitely get the MRI, I'm surprised they didn't do that before the dehydration test.Good luck and keep us posted! Quote Link to comment Share on other sites More sharing options...
Serbo Posted June 25, 2011 Report Share Posted June 25, 2011 Thanks for your reply and the the info fire watcher, much appreciated.It was amount and Osmoality which prompted dehydration test. During the 24 hour test I passed just under 8 litres, urine osmolality 118 (normal range 80-1200). plasma osmolality was also low at 292 (normal range 285-4295). I presume plasma Osmoality is taken from blood rather than urine. sodium was also high, 146 (normal range 135-145). Not sure wether this was taken from urine or blood. The endo feels is these 3 results which point to true DI.Presuming serum Osmoality is the same as plasma Osmoality? Interesting that they went ahead with our tests with such low levels!I believe I read your thread about your dehydration test. Couldn't find it recently when I searched but wanted to print to show to my endo. I shall do some more searching and update after my next endo appointment.Thanks! Quote Link to comment Share on other sites More sharing options...
firewatcher Posted June 25, 2011 Report Share Posted June 25, 2011 Serbo,For a definitive dx of DI, you have to have elevated serum (blood) osmolality, elevated serum sodium and polyuria with low osmolality. If your serum/plasma/blood osmolality and sodium levels are low or normal, it ISN'T diabetes insipidus. Your urine Osm was low and your serum sodium was high, but the serum Osm was low. I would suggest a visit to a pituitary endocrinology specialist. That is what I had to do. I was told that mine was probably partial DI. There is a new test that should have already come out (copeptin) to measure DI, partial DI and polydipsia, but they are still tweaking reference intervals. Quote Link to comment Share on other sites More sharing options...
Serbo Posted June 25, 2011 Report Share Posted June 25, 2011 Thanks for the clarification, we shall see what the endo apointment has in store as it seems as you point out it's not DI. Quote Link to comment Share on other sites More sharing options...
kellymarie31 Posted July 29, 2011 Report Share Posted July 29, 2011 I was diagnosed with POTS and DI during the same hospital stay. They did a water deprivation test in the ICU and the DDAVP worked like a charm to bring the urinating under control. DDAVP can be wonderful if you make sure you don't over drink. I take .1 twice daily (no dump)--it took several months to get used to drinking less since I was used to consuming so much water. A note about sodium--I was in the hospital over two weeks before they considered a DI dx because they were thrown off by the fact that my sodium was too LOW. I found out from my endo months later that it's not uncommon for those with undiagnosed partial DI to overcompensate on water drinking and flush out their electrolytes. Quote Link to comment Share on other sites More sharing options...
nunntrio Posted July 29, 2011 Author Report Share Posted July 29, 2011 Just thought I would update everyone. I tried the DDAVP for a good three weeks and felt no difference. I did not have a bad reaction but it did not help. Back to the drawing board for me. Quote Link to comment Share on other sites More sharing options...
Serbo Posted July 29, 2011 Report Share Posted July 29, 2011 Serbo,For a definitive dx of DI, you have to have elevated serum (blood) osmolality, elevated serum sodium and polyuria with low osmolality. If your serum/plasma/blood osmolality and sodium levels are low or normal, it ISN'T diabetes insipidus. Your urine Osm was low and your serum sodium was high, but the serum Osm was low. I would suggest a visit to a pituitary endocrinology specialist. That is what I had to do. I was told that mine was probably partial DI. There is a new test that should have already come out (copeptin) to measure DI, partial DI and polydipsia, but they are still tweaking reference intervals.Just wanted to post a brief update on my diagnosis....Endo believes I have central DI. Pituitary was normal at MRI. Asked for a referral to an Autonomic specialist so should be seeing the main Dr here in the UK soon.It's me pushing the autonomic dysfunction diagnosis as none of the other specialists I have seen have been able to come up with anything else! I am fainting, suffer from reflux, have generally low BP which drops even more so when standing still and HR rises to compensate. Plus I have a whole host of neurological symptoms which sound POTSy. I am male and 26 though so perhaps non typical for POTs, but this did all kick off after a cardiac ablation which makes sense.Re - DDAVP, I am on a nasal spray device, 2 sprays BD 12 hours apart. It really helped initially with BP but now not so much. Every now and again I get all day headaches too. Have had blood and urine samples on the days where i have head aches but the Endo has been satisfied with the results. I'm aware head aches can be a side effect but would love to know why, e.g to much or to little water, sodium etc...Fire watcher - when you mention exercise induced hyponatremia what did this feel like or how did you know this was the case? I have my 2nd spray of DDAVP at 22.45 and then normally exercise straight after, usually walk for an hour and a half and maybe do some push up's. I'm wondering if this could be causing me any problems. I feel fine, good if anything during and after exercise although I'm wondering if it's this late night exercise and DDAVP just before which is causing my postural drop and BP to be worse the next day.Incidentally does anyone else prefer exercising later at night? I can do much more at night than during the day. Quote Link to comment Share on other sites More sharing options...
corina Posted July 30, 2011 Report Share Posted July 30, 2011 IF i made it to 9pm (which usually wasn't the case) i've always felt better, so i fully understand why you exercise at this time of day! never used the DDAVP, so can't tell you anything about that! are you seeing dr mathias in london? hope you'll find the answers you're looking for!take care,corina Quote Link to comment Share on other sites More sharing options...
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