Nocturia is killing me

[DanaG]

I think I may actually kill someone else if I don't get some sleep. How does anyone else who suffers from this deal with this? I have not slept through the night in over 15 years. I get up a minimum of 5 times a night regardless of what I eat/drink or how late in the day I do it. I am so tired and irritable at work, I can't focus and obviously I can't have coffee to even help a little bit. I am always amazed by people who sleep normally who say they can't function without their coffee. It makes me want to scream! And it's even worse if I have something on my mind because then I get up to go to the bathroom and now can't fall back asleep. I wake up feeling like I have been hit by a truck. And the recovery from that one night takes a lot more than just going to sleep early the next night. Being single, I have to force myself sometimes to go out after work no matter how tired I am because I would not have a social life otherwise. I just don't know what to do anymore. I am never refreshed and I can't enjoy my life half the time because I am too tired to enjoy it. It doesn't help that others just don't get it either.

Any words of wisdom would be much appreciated!

Thanks.

Dana

[Eccles]

(((Dana)))

I have this too, but am unable to work so don't have your problem trying to function; that must be awful.

I take a sleeping tablet just once a week to at least get some sleep. I use an ice block very well wrapped in towels (don't want frostbite) to try to numb my urethra.

Do you take Elavil/ami?

[dg2901]

Dana--I can relate as I was getting up numerous times at night when all of my symptoms first started back in '03. Like the other poster asked, are you taking Elavil or anything similar? It seems that those of us taking this medication (or similar) have seen our frequency decrease significantly and are able to sleep better at night.

Just a thought.
Hope you get some relief soon!
Diana

[Quinn24]

Hi Dana,
I was getting up every hour on the hour before my Hydro/cysto and that took the Nocturia away. Plus Elavil works really well. I also take sleeping pills because when you get up to pee, at least you still feel groggy enough to fall back asleep, even if it is only for an hour before the next trip to the loo!!! Hasn't your doctor ever prescribed any medication for you to take? Sounds strange if you have had IC for 15 years.......or have you been diagnosed yet?

[DanaG]

Yes, I have tried everything and nothing has worked. Sleeping pills don't stop me from getting up and although they do help me fall back asleep faster, I feel more sleey the next day than if I didn't take anything.

I tried Elavil at 12.5mgs and it didn't work. Anything higher than that had me sleeping until like 3 in the afternoon and still didn't prevent me from waking up. Noe, does anyone know if Elavil doesn't work right away and takes some time to kick in? If so, how long approximately? Also, if it is making me need that much more sleep, does that eventually go away? Obviously I can't sleep until 3 in the afternoon and have to go to work. I won't be able to function. I am, however, willing to try it again (it has been a while since I tried it at higher than 12.5 mgs) if I need to give it some time to work and the initial sleepiness disappears.

Thanks.

Dana

[Quinn24]

Hi Dana,
No the sleeping pills will not stop you from getting up during the night. I have never seen Elavil in a 12.5mg form before, usually 5mg, 10mg, 25mg, 50mg or 75mg. Sure you had Elavil?? You could try Nortriptyline which is the 'sister' drug to Evavil (which is Amitriptyline). Some people I hear Elavil may take a couple weeks to kick in and the tiredness does wear off. Take it as EARLY as you can.......say 7pm so you can wake up okay the next day. If you take it before you go to bed you will have a tougher time getting up in the morning and staying awake during the day. I take 25mg around 7pm and have a great sleep (but I do get up a couple times, but beats getting up 6 times like I used to). How long did you try Elavil for before you stopped taking it?

[DanaG]

I would take a 25mg tablet and cut it in half. Amitryptiline didn't help me either. I honestly don't remember how long I tried it for at 25mgs, but I don't think very long because day 1 I slept until 3pm and knew I couldn't live like that so I would say only a couple of days. At 12.5mgs I probably did it for a while with no result.

Thanks.

Dana

[Quinn24]

Maybe you should ease into Elavil.......take 5mg every night for a week or two, then move onto 10mg then to 15mg....etc. etc. That may help build up your tolerance to take a higher dosage which will help with your frequency.

[DanaG]

Thanks. Good idea. I've given up on seeing docs lately since none of them seem to have any answers, so I'll try and find one to prescribe it to me.

Thanks so much!

Dana

[Quinn24]

Just remember to always take Elavil EARLY.....if you take it late in the evening or close to bedtime you may run into the same problem of being tired and drowsey all day long. I take mine at 7 or 8 pm and everything is fine the next day. I hope it helps you too!!

[DanaG]

Thanks. Curious what time you go to bed to know how much time beforehand to take it.

[Quinn24]

I usually go to bed around 10:30pm. I take mine about 7:30pm and by the time I hit the sack at 10:30, I'm out like a light. I start feeling groggy around 10pm though. Try it 3 hours before you go to bed, if that is too far ahead then try 2 hours. It's kind of an adjustment period at first. I just know that Elavil (for most people) needs to be taken far before hitting the rack for the eve!!

[glassd18]

Ativan helped me a great deal in the beginning, but I don't need it too often now. Urised also helps me a lot too, and I can't say what Elavil does because I haven't tried it yet!! I do the diet, take an antihistamine (allegra), pepcid, Natural Factors Glucosamin/Chondoitin, Fish oil, Evening Primrose Oil, and try not to drink too much after 7:00pm. Deep breathing and relaxation helps too. I was getting up about 20 x's a night, and now I get up around once or twice, and sometimes none at all until my alarm if I'm lucky. I flare the worst first thing in the morning. I hope you feel better soon because I know exactly how your feeling, and there is nothing worse. (well maybe there is something worse, but I sure don't want to find out what that is).

[GriffsMommy]

My uro started me on 25 mg of the Elavil. What I heard from some other people that's kind of a high dose because a lot start off at 10 mg. The first night I took it as directed and took it right before bed. I thought that I was going to have to find toothpicks to keep my eyelids open the next day!! I don't think I have ever felt that sleepy at work! I took it around 8pm with my other meds the next day, which is at least 2 hours before I go to bed and I was still a little sleepy but much better. By the third dose of taking it I really didn't have the sleepy side effect anymore. It took a little bit longer for the pain to stop for me, I didn't have the same problem with night time frequency. I usually get up once or twice a night, no biggie.

[lauriecircle]

Goodness I could have written your post. I am so tired and so tired of being tired. And nothing seems to work. I am up every two hours no matter what and during a flare every 1/2 hour to hour! :mad: I have tried Ativan and it helps me at least fall back to sleep faster after getting up. Valium same thing... I am scared of Elavil cause I am overweight and can't afford more pounds... I am going back to URO next month, cause I am just exhausted. I wish they had a magic sleep pill with no side effects for us ICers!

[born2swim]

You know, I can't sleep without my Atarax. I take it every night, but I was out of town last night and couldn't take it. I woke up 5 times in 7 hours to urinate. That was the first time since starting that med. It helps me block it out at night or something. I take a liquid form, so 3 times a day. The day doses don't help block the signal, but at night it is enough to let me sleep.

I hope you find something to help. I was sleep deprived for several months before being put on this med. I seriously would get up every 30 minutes and after 3-4 hours, I'd say forget it and stay up. I was in hell. I still feel like crap, but at least I sleep for 7 hours or so without waking up to urinate.

Feel better soon!

[sami4]

I too was getting up at night 5-7 times to pee regardless of overactive bladder medication and not drinking after 6:00 PM. Finally I decided something wasnt adding up here, and maybe somethiing else was going on that everyone was missing because we were all so busy blaming my bladder.
I went to a sleep clinic, and lo and behold; I had two sleep disorders. I had sleep apnea and restless leg syndrome. I had no idea I had either one as they only showed up on a sleep study. The sleep doctor also told me it is almost a human reflex that if you wake up --you pee. So, I was NOT waking up because I had to pee that much; I was waking up due to sleep disorders.
I now still wake up to pee, but its once or twice a night.
True nocturia can also be due to a lack of a hormone secreted at night to slow down urine formation. This is controlled by the brain.
So before you make yourself crazy over Nocturia, you might want to eliminate other possible reasons for all the peeing.
Sammi

[DanaG]

Sammi -

I was curious how they do a sleep study with saomeone who has to get up constantly during the night to go to the bathroom. Aren't you connected to a bunch of stuff? It's definitely worth looking into as far as I'm concerned. I won't lose anything (except maybe a few dollars!).

Thanks.

Dana

[sami4]

Dana, the cords are all connected to one main plug and they just pull it out and let it dangle around your shoulders while you pee in your private bathroom. They are great about this and they can hear you so you just wake up and ask to go and they come in immediately.
The night I had mine I also had an attack of vulvadynia which made it even worse, the longest time I slept in a row was 3 hours. I had severe sleep apnea and apparently restless legs syndrome which I didnt know I had. Both of these things were part of waking me up at night.
I now take half of 0.5 Klonopin, and a 10 mg Ambien at night and I can sleep in 5 hour blocks and get up to pee usually once, twice on a rare night.
Sleep studies are not cheap, in the thousands of dollars, so check with your insurance before you go. Also the unit for sleep apnea is pretty expensive, but my insurance paid for it all. I dont even nap without my cp device on or I wake up every half hour.
The sleep doctors told me it is almost a reflex that if you wake up, you will think you have to pee.
Sammi

[DanaG]

Thanks Sami. I am curious. What's a cp device? Is that something else you have to help you sleep through the night? So every time you get up you have to have someone come in and help you get 'untied' to the machinery? I get up every 1 1/2 hours or so, so that seems like a lot to go through for one night, but I guess worth it if they find out something. I have tried Elavil, but it made me too sleepy. Now my doc has me on 10 mgs of Elavil which I am fine on and adding Pamelor. I just want something to work so I can get some darn sleep! :)

Thanks.

Dana

[sami4]

I was getting up every 1.5 and even sometimes every 30 minutes also. That is what a sleep clinic is for, to try to figure out why you are waking up?
Everyone in there has the same problem or they wouldnt be there. Your problems are not unique to them at all. Some people even have seizures in their sleep and dont realize it. After the clinic you will know just what your body and brain are doing during the night, it was well worth it for me. I wish I had done it earlier, but I was too busy blaming IC for everything.
One of the reasons I was waking up about every 1.5 hours was because it takes about that long to be deeply relaxed, then the apnea would close off my breathing from the relaxation, I would also start to snore at about 1 hour in the attempt to keep the airway open. All this goes on and you dont know it.
The CP device is a pressure device that blows a gentle stream of moisturized air into the nose and keeps the throat from closing. I havent had a sinus infection since I have had this little marvel. I find it very soothing and I can relax deeply and know I wont jerk awake in 30 minutes. They come in many styles, mine is like an oxygen canula that just fits into the outer nostrils.

[sami4]

Dana its not getting untied, its a simple plug, like an electric cord only bigger.

[Claredale]

I also have major sleep issues. I am almost afraid to go to bed since I know that my bladder will start it's usual need to pee every 30 minutes. I have been on several different sleep meds over the last several years. It still takes me a while to fall asleep and I am like you Dana, if anything is on my mind, I definitely can't slow my mind down to go to sleep. I am now taking Rozerem now. I just started on it this week. I was taking Restoril (2 pills) and was only getting about 4 hours on and off. I also take Soma and Valium. I quit taking amitriptyline several months ago since it definitely caused weight gain. So far the new sleep meds seems to work. I have a nightly ritual of spraying my pillow with lavender spray (supposed to help you relax) and reading for a while to help with the wandering mind thing. If this med quits working, which they always do. I started with Ambien several years ago. After a few months, it was like I wasn't taking anything. My next step will be a sleep clinic. I don't require a whole lot of sleep, but it's nice to sleep for at least a few hours! Last night I did sleep from about 11:00 to about 4:00 and woke up in pain since I need my pain meds. I can't take the long-term ones due to side effects. Only Lortab works for me. But after the pain meds kicked in, I was back to sleep for another couple of hours.

Good luck!

T83

[DanaG]

Perhaps I will give a sleep clinic a try. I am not hopeful only because when I do wake up to go to the bathroom, I REALLY need to go...bad. So I don't feel like I have a sleeping problem and then when I wake up, realize I have to go to the bathroom. I truly feel the urge to urinate is what's waking me. But, if my insurance covers it, I am happy to try it.

All of the those sleep meds listed like Ambien and Restoril do not help me at all. I need something to stop the urge to urinate, not to help me sleep. Sleeping isn't my problem, having the urge to urinate and waking up because of it is.

I wish there was just a magic pill! Sigh...

Thanks.

Dana

[Claredale]

That was what my problem was and still is at times, but most of the time, the sleeping meds help me stay asleep instead of getting up every 30 minutes or so. I still start the night like that with still having the freq/urg, but each new sleeping med I would try would work for a while and my urg/freq would decrease for a while. Like I said, I just started Rozerem this week and so far, I have been able to fall asleep pretty fast. I did wake up last night after about an hour, but it had been a tough day since it was the first anniversary of my brother's death, so it really hit me in the middle of the night. I did fairly well during the day and kept my mind busy, but I happen to wake up to pee and then my mind started going. I took an extra valium after about 30 minutes and not being able to fall back to sleep even on my sleep meds. I was finally able to listen to some soft music and fall back to sleep. I just wish I could take something that didn't cause the bad side effects and would allow me to sleep through the night without waking up in the middle of the night in extreme pain. Usually around 4:00 am. My implant has definitely helped with the urg/freq issue for the most part at night, but I still get up about 4 to 5 times and when the meds are working, I go right back to sleep. Before the implant, my bladder was so irritated, so that either couldn't empty at all or it was just a trickle especially at night. I figured it was because I was asleep and my bladder does get irritated when I don't empty it right away. During the day, my urg/freq does very well as long as I stick to my diet and empty my bladder asap. I have not been able to find any freq/urg meds that work on me at all. The main side effect is my vision is effected as well as alot of times, the meds cause me to retain.

[IrritatedByIC]

I use an ice block very well wrapped in towels (don't want frostbite) to try to numb my urethra.



WOW! Does that work?? I'm curious, because I get sharp spurts of pain, sometimes that's how I know I have to use the bathroom and sometimes I get the pain when I don't need to go.

[sami4]

Your words,"sometimes I get the sharp pains when I dont have to go to the bathroom" made me wonder if you have ever been evaluated for a pelvic floor disorder? Pelvic floor problems can cause sharp, shooting pains in the urethra, and bladder. I thought I had a bad case of urethritis and it turned out to be coming from the pelvic floor and was helped a great deal by physical therapy. I didnt ever think physical therapy could help, but it did and the pain was not coming from where I thought it was but was being referred from the pelvic floor.

[IrritatedByIC]

Your words,"sometimes I get the sharp pains when I dont have to go to the bathroom" made me wonder if you have ever been evaluated for a pelvic floor disorder? Pelvic floor problems can cause sharp, shooting pains in the urethra, and bladder. I thought I had a bad case of urethritis and it turned out to be coming from the pelvic floor and was helped a great deal by physical therapy. I didnt ever think physical therapy could help, but it did and the pain was not coming from where I thought it was but was being referred from the pelvic floor.

No, I haven't. Wow, that sure sounds like it. Oh! Thank you for letting me know. I appreciate it. I'll look into it.

[Vicki]

I don't know if this will help you but I also have nocturia BAD! This is how I have coped for the last ten years. I take elavil. I set the alarm on my phone for 5:30 in the afternoon to remind me to take it early! That is the key. It takes two weeks of being on Elavil before the initial severe fatigue and fog lifts. Granted it is not perfect but I am functioning on a decent level. I also use a rectal suppository every night to calm the pelvic muscles it is a combination of baclofen, ketoprofen and lidocaine that I have compounded. If I am terrible I drink 1/4 teaspoon of baking soda in water. Sometimes dye-free benedryl works but I feel hung over the next day. Ativan is usually my last ditch effort to get me to sleep and it always calms the bladder and works within 45 minutes.
Hydroxyzine is also great to use in combo. with Elavil. However, I find this drug induces depression and anxiety in me so I stopped taking it. I highly suggest it if you can tolerate it. Another possibility for you would be Singulare. It helps me but it is so expensive and my kids are on it that I stopped taking because I am more worried about them with their asthma and allergies. The other thing that really helped nocturia for me was Elmiron. I took it for nine months and was sleeping through the night for the first time in nine years. However, I was having a lot of hairloss and acne from it so I stopped taking it.
I hope something will help you. Feel free to PM me if you have any questions. I really feel for you as I have suffered so badly from nocturia. It was really awful when my twins were toddlers and they would be up at o-dark thirty every morning when I had been up all night peeing my brains out!

[sami4]

Is anyone taking Rozerem? I was wondering about it? I take Ambien 10 mg and Klonopin 1/2 of a 0.5 mg tablet and can get about 5 hours straight sleep before I start dreaming that I cant find a vacant toilet, that wakes me up. But still, thats only one get up a night, usually around 4:00 AM and then a wake up around 7. Even with my c-Pac for apnea, I still need meds for restless legs which will wake me up.