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How do you all sleep????

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  • How do you all sleep????

    I have been suffering like this for 3 weeks now and the lack of sleep is killing me! I've been to the gyno but I am still not sure if I have IC, all I know is my bladder or my urethra bother me constantly and it keep me awake and stressed. My BP is up and so is my heartrate from the lack of sleep, and I think the lack of food, I am so afraid to eat anything but veggies and chicken and brown rice cakes! I got a perscription for something like Elival, Nortriptyline HCL 25mg. I am alittle worried it may be to high to start with. I don't always react well to drugs. Melatonin makes me feel like I am on caffine and OTC antahistamine sleep aids keep me awake too! What do you all take to sleep and how much, I am starting to loose it. My ears have even started to ring. Ugh....

  • #2
    Hi Christine,

    I was on nortriptiline for about 3 weeks until I developed an allergic reaction. Just my opinion but 25mg seems a little high to start on, 10mg would be better for a couple of weeks and then you could go up to 25 if you need it. I only mention this because it sounds like you respond to meds the same way I do. The nori at 10mg wired me a little and kept me awake but after a few days it seeemed to improve and I could sleep. Most meds wire me too. If that one doesn't work for you, there are many others but often side effects subside after a number of days. The nori is a 2nd generation tri-cyclic so it has fewer side effects as the elavil.

    You don't have to be so cautious with the foods, anything on the safe list is generally considered safe and ok for all ICers. Expand a little or you'll be so unhappy living on the same thing day in and out! If you haven't already, print out the diet list, I have a link below.

    Gelnique for frequency/urgency - works great
    Macrobid after sex
    Prilosec, continuous birth control pills
    synthroid .088mg, mucinex-d, restasis

    Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

    Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

    IC Diet Link:
    AUA 2011 Guidelines to diagnosing and treating IC overview-
    AUA 2011 Guidelines to diagnosing and treating IC PDF:
    Great treatment flowchart on page 19 of the pdf


    • #3
      neurontin helps me to sleep. drs usually prescribe 100mg-2400mg for IC
      Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

      I have moderate-severe IC

      Currently stopped taking all medications due to pregnancy


      • #4
        I have not slept more than 3 hours in over three years (yes I take ambien, I think it just doesn't work anymore) recently my PM doctor prescribed zanafles (muscle relaxer) and I am averaging about 5 hours of uninterupted sleep a night (heaven) unfortunately I cannot up the dosage (which would get me more sleep) because at a higher level it has too many side effects for me. I think the muscle relaxer works well because it calms your bladder a bit.


        • #5
          I was given 1mg Ativan (Lorazepam) tabs that I can take 2 x's a day if needed, but I only take them at night. This saved me!! It helps relax the muscles and I am able to sleep, but I can have break through pain if I'm flaring badly enough, but I usually sleep through the night. I do have a painful bladder in the morning when I wake up though, but at least I have slept. I can put up with the pain, but pain with a lack of sleep is horrible...


          • #6
            No Sleep

            Well, let me just say I used to not get ANY AND I DO MEAN ANY sleep at all. I told my OBGYN that I was depressed and he put me on Elavil (Amitriptyline) 25 mg. Told me to take it at night. I did slept like a baby could not actually find my way back to the bed when I got up to go to the bathroom. But when I did it was straight back to sleep not counting sheep, no thinking of your dream job etc... But I slept the next day too. I cut my 25mgs in half and take approx 12.5 and it does great it also helps w/ my Migraines. You might want to try it and my URO was pleased with me taking it. So all is good now. Good Luck.

            "Through God All Things Are Possible"

            Topamax for Migraines 50
            Elavil 12.5 mg
            Lidocaine 2% 10 cc
            Sodium Bicarb 8.4% 5 cc
            Heprain 20,000 Units
            Hydroxyzine 25 mgs
            Valium Sup. 10 mgs.
            Phenegran 25 mgs.
            Amerge 2.5 mgs.
            Lidocaine Gel 2%


            • #7
              I think that is the absolutely worst part of all this. Not being able to sleep. It's pure hell (oops- am I allowed to say that?) I went to my GP and pretty much told her I was ready to have a nervous breakdown and she gave me some Ativan. At the time it was really helpful for calming down my bladder and calming down my nerves. My first uro gave me Vicodin, which wasn't for sleeping but helped me not care so much if I wasn't and took the edge of some of the bladder pain. Some people on here say that Atarax is really helpful and some swear by Elavil. It all depends on how your body reacts to a lot of these meds. Some nights I would get up and lay on the couch with a heating pad- this did help. I've learned that you can't wait for your dr. to offer a sleep or pain med - you have to tell them you need it. I keep thinking that - well they must know how much pain I'm in, or they must realize I can't sleep. Why aren't they offering me anything? I'm real aggressive about it now. I guess that's what lack of sleep will do to you. lol


              • #8
                Low-dose Ativan (1mg) taken as needed works wonders. I have no problem falling asleep and I'm not drowsy in the morning. I take it as needed for anxiety.

                Wishing you well.
                (o.O )
                (> < ) This is Bunny. He's on his way to world domination.


                • #9
                  Elavil and Vistaril

                  I take elavil and vistaril both at bed time and it really helps me to sleep. I also try not to drink muuch past 8 pm. I am on 50 mg of elavil and vistaril. I am going to try to cut my elavil down to 25mg and see how that works.


                  • #10
                    Valium, 10mg, from my PCP, not Uro. Works great! Also, if I'm in super pain, I can take a pain med and that will knock me out.
                    Your Friend,

                    Diagnosed: 10/16/09

                    Elmiron, 100mg 2x per day
                    Imipramine, 10 mg per day
                    Diazepam 10 mg for sleep
                    Zovia, birth control (ongoing-no periods)
                    Hydrocodone, 2 pills a day (at any time of day)


                    • #11
                      I take 0.5 mg Klonopin and if I wake up in pain in the middle of the night, I'll take another 0.5 mg
                      Dg. with IC 2/15/10

                      Other conditions: depression, ADHD, lactose intolerance, celiac disease, chronic fatigue syndrome, IBS-C.

                      Medications I'm on: Vyvanse 70mg, Xanax 1 mg as needed, Wellbutrin XL 150 mg, Vicodin 5/500 as needed for pain, Microgestin 1/20 continuously.

                      Supplements I'm taking: Chondroitin Sulfate, N-acetyl-glucosamine, MSM 3gr/day, Pancreatin, B-5, Ester-C, and marshmallow root tea


                      • #12

                        Sometimes I take a small dose of Restoril
                        Surf Gal


                        • #13
                          A year ago this month when I found out it was IC that was causing my excruiting pain, I ate 1 can of chicken noodle soup per day, got maybe 2 hours of sleep from pure exhaustion, got so weak for three months suffering lost 50 pounds. I had nothing but tramadol which did not phase me it was like taking a baby aspirin. The uro would not give me any loratab or percocet, I was so bad off I could not even talk on the phone. One night I got my gun out and was going to kill myself thank the lord I did'nt. I went to another uro who took care of me and I am 95% better. I will never ever forget that pain as long as I live I pray to god for a cure to this horrible desease. Sorry for the writing and telling you my experience but, I don't want you to give up. If your uro cant get your pain under control find another uro please! We all here know what you are going through I wish more doctors understood and were more compasionate about this desease.
                          <a href=";current=Picture005.jpg" target="_blank"><img src="" border="0" alt="Photobucket" ></a>


                          • #14
                            how do you sleep

                            Sleep? Do people still do that?!
                            Just kidding. I use a heating pad against my pelvis at night. I still get up several times but the heat relaxes me enough so that I fall right back to sleep. I also take Klonopin at night for restless leg and I think that helps a little with sleep.


                            • #15
                              how do you sleep 2

                              Sorry, I meant to ask Linda May what your 2nd Uro did that helped so much.