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Nocturia is killing me

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  • Nocturia is killing me

    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

  • #2
    (((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?

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    • #3
      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
      (\__/)
      (o.O )
      (> < ) This is Bunny. He's on his way to world domination.

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      • #4
        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?

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        • #5
          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

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          • #6
            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?

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            • #7
              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

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              • #8
                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.

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                • #9
                  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

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                  • #10
                    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!!

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                    • #11
                      Thanks. Curious what time you go to bed to know how much time beforehand to take it.

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                      • #12
                        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!!

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                        • #13
                          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).

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                          • #14
                            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.
                            Christine



                            I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                            1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                            2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                            I have tried every oral medication as well as rescue instills and DMSO.

                            I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                            Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                            Also proud mom to the best Bullmastiff on earth, Claus

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                            • #15
                              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! 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!
                              45 year old
                              IC symptoms, all my life
                              Severe endometriosis since age 13, hysterectomy Oct 06
                              IC diagnosed 1/11/05, Interstim implant May 09

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