Desmopressin for nocturia

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Hello, All!!

FYI: I'm a 72-year-old male.

Last week I had a Medtronic neurostimulator implanted. So far it has been helpful with my urgency issue.

What has not changed is my need to get up 3 to 5 times a night to pee, aka nocturia. I researched a medicine specifically intended for nocturia called Desmopressin. Has anyone here used this, or does any here have a med that has lowered the number of times they pee at night?

Thanks for your feedback.

Frank
 
I have used Desmopressin for almost three years with great results, just remember to have your sodium level checked every six month's
 
wetrooster, Thank you. I plan to seeing my PCP to get a baseline sodium level check before I ask my urologist about Desmopressin.
 
@fleemoore Desmopressin mimics your body’s own chemical, Vasopressin. Taking it will completely reverse the way your renal system functions, rather than the renal system working mostly in the day, it will begin to work mostly in the night. It is only prescribed for those who have diabetes insipidus. Be wary if your doctor prescribes it to you off the cuff without making you do all the required tests which necessitate a 24 hour stay in a hospital. It’s a big deal to alter the way your entire renal system works. The medication requires that you drastically restrict your fluid intake.

Diabetes Insipidus (DI) is *very* rare and not at all related to the diabetes that we all hear about all the time.

Some urologists will just be willing to prescribe desmopressin without checking to make sure you actually have diabetes insipidus. The only people who should be taking vasopressin are the people who have DI. @wetrooster Do you officially have DI?

Desmopressin is a serious medication with serious side effects. Ever had a seizure? I’ve had a bunch. THEY SUCK and THEY CAN KILL YOU OR OTHERS IF YOU’RE DRIVING. Seizures brought on by sports concussions killed my first fiancé when we were 27 :( Nobody since then has loved me like he did, not even my husband who came later in my life.

I had a urologist recommend I try Desmopressin off the cuff, without checking to make sure that I actually needed it. Once I found out that seizures were a side effect, I said no thanks, I’ll wear diapers and tolerate waking up in the night. Seizures rot your brain every time you have one. THEY ***HURT***.

Proceed with caution and let us know how it goes. I highly recommend seeing an endocrinologist (a blood/chemistry analysis specialist) for the treatment, not a urologist. Desmopressin alters your body’s entire water and electrolytes, not just your renal function. It’s bigger than urology. It’s bigger than what a PCP understands. It’s the stuff endocrinologists deeply understand.




 
@snow, You are amazing on this platform!!!! You have so much knowledge and are so helpful. I knew the drug was questionable, but you have added more info for me to check out. I'll probably look into other options.

I am sorry for the personal issues you have had to deal with. It begs the question, "Why do bad things happen to good people?"

Kind regards,

fleemoore
 
@fleemoore Thank you very much for your kind words! I’m happy to help.

I’ve learned the hard way to cross-check all my medications because my doctors just don’t it themselves. Recently, my spine/pain doctor told me to start taking ginger and turmeric. Well, I looked up their side effects online and both of those things cause damage to the liver. You’re not supposed to take them if you do other things that damage your liver, like drink alcohol – which I don’t - or take NSAIDs, which I definitely do. She is aware of how much Tylenol and Aleve I take (wayyyy too much, for 13 years now), so she shouldn’t have told me to take those things. We have to be our own best advocates, unfortunately. I think with how much we pay doctors, they really would know what they’re doing!

I think Desmopressin is definitely worth inquiring further about. I always mean to, but forget when I go to my appointments. An endocrinologist once saved my life. I have some hormonal problems going on, so I will soon be seeing an endocrinologist again, and when I do, I’m going to talk to him/her about Desmopressin also. I will let you know if I learn anything, and please let me know if you learn anything further as well. Maybe I’ve read too much into what I’ve read online; maybe it’s not that big of a deal to take it.

I would love to not have to wake up so much during the night to pee! It really is so disruptive! Wearing a diaper doesn’t change the fact that nocturia wakes me up!
 
I'll get back to you, snow, as I learn more about stopping nocturia.

Today I stopped ingesting liquids earlier than usual to see what difference it makes tonight. Time will tell.
 
I had a frequency problem and night, going every hour. The answer was I need to sit with my legs raised. While I was tested for many things my doctor prescribed flomax. My problem was not this, I was getting up and going ten ounces each time. I was exhausted and depressed and afraid to drive any distance. Then I had prosectomy and had a catheter and could sleep through the night, I was very happy. I was producing 2200 to 3000 mm at night. I was only producing 1000mm during the day. I cut back on my fluids to 64 ounces and limited drinks before bed. It helped a little, 6 times a night. Then my doctor sad to keep my legs raised as much as possible and it went to two times a night.
I am going more during the day because of this causing more incontinence during the day but the sleep is worth it
The doctor said in my case when I lay down water which gets trapped in my lower extremities and comes out. By raising my legs ( mostly when I am sitting) the fluid comes out
 
@Anxiety I’m like you, 2/3-3/4 of my pee output happens when I’m laying down to sleep. That happens because of permanent nerve damage to my spine, not because of water and electrolyte imbalances. I cut my fluid intake to 32 to 50 ounces. I definitely have swelling in my lower legs because my knees are such a mess. I don’t think I can stand to cut any less back, but I bet if I did, maybe my knees wouldn’t swell like that! Living in one of the stormiest regions of the United States doesn’t help.

Do you have an adjustable bed? My parents said I could get one for my Christmas present, but I haven’t yet because they’re so ugly. I finally found one a couple of days ago that can work with my slat bed and has all the features I want so I think I’m going to go with that one. I’ve been thinking that if I sleep at night with my legs elevated, I will get tremendous knee relief, but I have been wondering if that’s going to make me pee even more at night, which I simply cannot tolerate.

When I’m working at a desk I certainly can’t keep my legs elevated during the day. Are you retired; is that how you keep your legs up during the day? I wish I could; my entire body hurts less when I’m sitting with my leg straight out in front of me. When I get the adjustable bed, I will try to keep my legs elevated as often as possible, which will primarily be in the evenings, and when I sleep. I will keep them up for the entire duration of the lengthy healing process after I get my knee replacements, whenever I can finally afford that.

I’m not sure if I’d rather have worse incontinence in the day or night. At least at night I’m home, there’s a bathroom 10 feet away, and nobody else has to notice how often I’m going to the bathroom. Maybe it would be OK now that I get Botox. Before I had Botox, I was reticent to even drive on the freeway because you can’t get off the freeway to pee. I didn’t like going out in public because of my leaks. Now I’ve learned to take the leaks a little easier but there’s still no fun. One of the reasons I was scared to move back to Hollywood is that there aren’t very many public restrooms there, whereas in Utah, public restrooms are mandated at places of public business by the state, so they are everywhere - though they were terrifyingly closed during COVID. Restrooms at public parks still haven’t been reopened, which infuriates me. If you get caught peeing in the woods on the side of the park, you’re a “sex“ offender for life. Well, then, they should re-open those public restrooms, or get the kind they have in the streets of Europe, like in Amsterdam in particular.

I don’t think my skin can handle wearing diapers 24/7. My diaper rash is already bad enough when I just wear diapers at night. That would be yet another huge hurdle for me to have to take, emotionally, to always wear diapers during the day. I have yet to deliberately sit there and pee in a diaper while conscious. If it happens while I’m sleeping, so be it, I’m not aware of it and I don’t care. I’ve had seven years to get used to that. I have worn daytime protection here and there, like if I go to a movie or a concert or a long freeway drive, but I’m always too grossed to use it deliberately; I only use it if it’s a true accident. I can’t stand using a diaper voluntarily; that feels like baby fetishy stuff to me. For leaks, that doesn’t gross me out. I would have to buy a whole entire new pants wardrobe to accommodate a diaper fit. No thanks; everything costs way too much money now. Also, no man would ever want to date a woman with baggy pants that are hiding a diaper. . . not that anyone’s asking, anyway!

so it will definitely be interesting to see what happens with the adjustable bed, and when I start keeping my legs elevated. I’ve had four knee surgeries so far, two on each side, and during recovery, I had to prop my legs up against the wall to get the fluid to drain. It’s a very uncomfortable position to be in, to keep your knees above your heart. I didn’t notice that it made me pee more afterward, but next time I do it, I’ll try to remember to notice.
 
I’m curious: how many of us are on Desmopressin? Maybe if people are, then they leave the forum because they have a solution. I actually made a post about it along time ago and didn’t get very many answers. Unfortunately, the search function on this website hides anything older than a year, which is such a shame. I should be able to see every topic I’ve ever started myself. I think there have only been 3-4.
 
@Snow, i read your post and i am amazed as to the volumes of knowledge you have a share. Thank you for all you do here for so many.
 
@snow I am retired so i have the advantage of sitting with my legs raised. I only elevate them on a recliner in the sitting position which works for me, not above my head. I think laying down versus having them elevated above my heart would be the same. I have pelvic nerve pain and had a prostatectomy in September of last year. I do walk about three miles everyday which helps me feel better.
 
@Anxiety It’s good to hear that even sitting in a recliner, which I don’t own (yet) because I don’t have space for it unless I throw away my nice couch, helps your legs and your nocturia. While I don’t think I get the nocturia benefits from putting my legs up, I do know that when I’m able to sit on my bed with my legs out straight in front of me, I do think the swelling goes down. Certainly, the pain goes down. That’s why I think having an adjustable bed where my knees can go even higher will help with knee pain even more, though thanks to your post, I’m now realizing thst “zero-g” position may also have the side effect of making me pee more during the day, which could be both a good, or a bad thing! I guess if the primary time I can sit in bed with my legs in front of me would be during bedtime, it may even increase my nocturia to be worse than it currently already is. I really couldn’t take that. But, I think I’ve got to give something different a try.
 
@snow I was told I should start Desmopressin, but I disagreed whole heartily. After reading about this medication. My thoughts are I wonde t@fleemoore have they started you on CIC yet, I do feel it would help you much more then another medication like this. boom
 
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