nocturia

[kuntrygurl78]

Ok. My biggest problem my entire life has been nocturia...getting up to go pee more than once while sleeping. During the day, my frequency is fine. I go about the same as everyone else unless Im flaring. But no matter what I do, I go to the bathroom about every hour to hour and a half. Ive been this way for as long as I can remember..even before IC.

My doc has me on elavil. He just moved me from 5mg, to 10mg, an I just got a script for 20 mg. It was too much so Im doing 15 for a few weeks before I move up to the 20. This does help me sleep, but then I get that "ive held it too long" feeling when I wake up. I dont know what to do. It feels like Im going to wake up all night long, or feel like I havent gone enough. Its very frustrating. Especially now that Im working 6 days a week. Sunday, I ended up taking a 2 hour nap. Dont know if it was the exhaustion from the new job, the nocturia or both. I just dont know what to do. Thanks for any advice. Im going to be now.

[SharonA]

The only advice I have is to talk with your doctor about something to add with the Elavil to help you sleep better. But, I did notice your last statement. I know it was a typo, but I really like what it says...

"Thanks for any advice. Im going to be now"... :)

[lisabar36]

Hi, I know that feeling, I have held it to long. Thats what happens to me, the meds help me sleep and by the time I wake up to go, my bladder hurts after cause it feels like I held it to long. If I don't wake up at night to go, I am up pretty early having to go really bad. I would talk with your doctor about something to help you sleep to, so maybe you won't be so tired during the day.

[elamar]

sound like maybe you need to add an anti-spasmodic medication at bedtime? Ditropan xl finally worked for me, in addition to atarax. I could finally relax enough to sleep. I went through months of that terrible feeling, once you start to relax and drift off, the alarm bells go off in the bladder! Then the never ending cycle of getting up to pee. As soon as I would fall asleep, bang the urge would strike up every time. Another med to maybe try is urelle or prosed. They may help calm your bladder down long enough for you to get some rest. Just so you know, I tried sleep medications - prescription stuff and nothing worked - so see about anti-spasmodics!

[kuntrygurl78]

I tried an OAB med last year and it caused me to have retention issues.

I just hate that I dont have trouble with frequency during the day; only at night. It just doesnt make sense to me.

[snowgirl]

Kim

For 22 years I have had IC. For years it was urgency and frequency/ Pain I could live with. I have always had my worst time besides periods that's another issue but at night. I used to take ambien and that helped me for years. I don't take ambien anymore even if I wanted to my insurance co will only allow and pay for 10 sleeping pills in 30 days. I urinate every 60-90 minutes. See my bladder capacity over the years has diminished to 175cc under general anesthesis

How can we help you at night. I think you said you take elavil and atarax. Have you tried having your md increasing your atarax or elavil up to 25mg. Increasing the elavil sure would make you sleep. atarax would also make you groggy. Have you thought about asking your md to up one of those doses?

then there is the sleeping pill route not sure how you feel about that. Have you ever tried any samples of lunesta? Vicky

[snowgirl]

Kim

I just re -read you post. I agree with the slow increase of your elavil it will help you sleep. Have you tried atarax ? Vicky

[kuntrygurl78]

Ive never tried atarax. Im going to go with my transition to the 20mg of the elavil and see if it works. I see my doc every 6 months or so (or when needed). My IC doc is 3 hours from me. My next 6 month apt is in September.

[actinga]

Have you seen any improvement with your nocturia? I suffer from the same thing so am curious for any suggestions or answers.

I'm not currently taking anything although I have tried several OAB and Trazodone with no help; now I'm just trying to be careful of what I eat/drink in the evening but it's so hard to identify every trouble food. Plus mine is much more 'active' from ovulation through the end of my cycle.

I think I can only get a good night's sleep if I have pancakes for dinner every night :headbang:

[kuntrygurl78]

No improvement. I go more at night than I do during the day:cussing:

I see my IC doc two weeks from today. Ill let yall know what he suggests.

[pyrodruidess]

I get up 2x's a night still, it used to be 3x's right when going to bed and then 3 x's during the night. I had problems with vesicare and detrol la with retention, but like myself and many others, ditropan was great, it didnt cause the side effects and my voids were fuller and my sonogram showed no retention. Uhm, if you havent tried it, its worth a shot, just a week trial, you'll know quickly if its not working. Best of luck making babies.

[e@zogg]

i always feel like i have to go more when i lay down
even if its during the day just trying to take a nap
i totally understand how it can drive you crazy
just rest when ever you can even if you dont
fall asleep it does help
i can personally take several drugs that are supposed
to help a person sleep and still have to get up 3 or
4 times a night

[Claredale]

Hey Kuntrygirl. I am glad you are going to see your doctor in a couple of weeks. I went through what you are going through for years. My doctor explained it very well, unless I was having a flare, I normally didn't have to pee that much during the day. Enough to irritate me, but I could manage it. But as soon as I layed down, the freq/urg started because my body was relaxing, therefore I was noticing the urgency so I was constantly getting up to just get that little bit out so I could relax. I didn't have anything to distract me like I did during the day. I was on Elavil and Valium which at first helped me sleep, but my body is strange with some meds and I get used to them really quickly. I went from 5 mgs Elavil to 10 mgs in a week. I would be tired the first morning, then take the pill earlier as everyone would suggest and be up before midnight and normally for the night, so then I took it later at night and still was up within a couple of hours. I was lucky to get 2 hours of sleep. I was fortunate I already lived with chronic insomnia, but I still needed more sleep than that.

It took me a while, but I finally realized that the more meds I took to allow me to sleep the more my bladder was getting irritated because my bladder wasn't being emptied so I would wake up with horrible spasms that would keep me awake until my pain meds kicked in. It became a cycle. It was a choice of sleeping longer then waking up in pain or not sleeping at all. I started keeping a pain pill right by my bed to take as soon as I woke up. My doctor also gave me B&O supp which helped calm down the pelvic region faster.

Last summer I started having a new symptom that I hadn't had in 20 years of IC. I was having the feeling that my bladder was on fire and as if it could just fall out. Peeing was like trying to pee glass. My doctor put me on several different nerve meds like Neurontin, Lyrica and Topomax, but I couldn't handle the side effects. My doctor said that he felt that my bladder was just so irritated from holding the urine. I was again begging for my bladder to be removed. I hadn't even felt that way since prior to my interstim in 2002.

I read about another member having the same symptoms I was having. She even used the statement I had said about peeing shards of glass. She posted about taking Prosed DS which is an antispasmodic and has analgesic meds. It took about 2 weeks, but I finally noticed a difference. First during the day, I noticed I could hold my urine for longer than 15 minutes without having spasms, then I noticed I wasn't feeling the need to go as much, plus I was peeing ounces instead of just a little. I never had 2nd voids again. Even with my interstim, I had 2nd voids sometimes especially if I had held my urine too long. Now a year later, I am for the most part sleeping through the night. I have been able to stop taking the Elavil and decreasing my valium. I still take sleep meds which I may have to take always...who knows. At night, I am totally a different person. I only get up once to pee when I first lay down. I am sure that is just a just in case habit. I still wake up a couple times at night to pee, but I go right back to sleep. I rarely have nights that I actually get up for a while due to my insomnia. I have even been able to cut back on my pain meds and only take at night for the most part. I know Prosed DS doesn't help everyone. It even causes retention with some people. Like other meds, it's trial and error, but it has been my miracle med.

It's much like Pyridium Plus, but it is a med that can be used long term. I did alot of research on it when I read the posting about it. My doctor hadnt used it for IC patients before because it is normally used for chronic bladder infections, but it has now been found to help some IC patients. It also turns your urine blue instead of orange which is something you have to get used to because it does stain everything!

Maybe you have already tried that avenue and it didn't work, but I hope you find something that will help you soon! Working 6 days a week isn't helping either I am sure!

Hugs, T

[kuntrygurl78]

I talked to my mom this weekend, and got a little bit more detail about what happend when I was a kid. See, I was a bedwetter up until about puberty. I always remember being told Id had surgery, but didnt know why. My mom said that they stretched my urethra..on two different occasions. Once when I was like 3 and once when I was older. (I dont remember either occasion)

She told me that when my body was retaining urine during the day. Then at night when I would relax, it would totally empty. Sometimes, I would be sleeping so well, that I wouldnt wake up.

It does make sense. I have noticed that even when Im having a lazy day around the house, I go more.

My mom suggested that I get my medical records from the doctor that did my surgery. Im going to try to do that this week before my doc apt next Tuesday. Maybe understanding what the docs did to me as a kid, will help me now.

I forgot to add, that at one point, I was on Sanctura. It caused me severe retention. I was on it for about a week, and gave up. It was just too painful.