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  • Not sleeping anymore!!!

    I just need to vent. I have not been feeling well for several weeks and can not wait to see my specialist tomorrow! He upped my Vicadin and Nortriptyline, but I am still having almost constant pain, basically 24/7. I started therapy for PFD, and am hurting alot from my session yesterday. And my pain is getting much worse at night! On top of that I got up 7 times last night to go to the bathroom, and 6 times the night before, and this is on 50mgs of Nortriptyline! I was doing very well on Nortriptyline, when I first started on 30 mgs back in February I was only getting up once or twice a night and having little pain. Now it's like I'm not even taking it, that's how bad my symptoms have gotten!! I have no idea what I can try next.... I get way to tired and zombie like the day after taking Elavil, so that is out now too! My Doctor did suggest that we would try Neurontin or Kloznipan (sp?) at night and Valium during the day for pain, so hopeufully that's what he will decide to give me. In the mean time I am just praying I will be able to get some sleep tonight. I have to drive an hour and a half tomorrow to see my specialist and I won't be able to do it if I am exhausted!
    I am just so down this week. It feels like this disease is kicking my butt. I have been trying to get relief for almost a year now and that makes me so sad if I think about it too long.
    Thanks to all of you for listening! At least here I have a safe place where no one is judging me or wondering if it is all in my head! If I have to hear one more well- meaning friend of mine tell me I don't look sick.... I even had one friend tell me I need to repent my sins b/c God uses illness to punish people (Don't even get me started on that one!!!)
    Thanks for reading this!
    Rachel
    DX's:
    IC; PFD; possible Fibromyalgia; IBS;

    Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

    I've Tried:
    three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
    Currently using:
    Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
    Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
    I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!


  • #2
    Pain meds make it difficult for me to sleep, along with the frequency issue of course. I like hydroxine, which is an antihistamine that has sedative and anti-anxiety qualities to it. It helps me sleep, lessens the frequency, but it grogs you out in the morning when you first start taking it.

    I take percocet for pain, because Vicodin did not even put a dent in it. Sounds like you might also need some earplugs to tune the world out. I heard all of the same things. I told one of my closest friends that I didn't know if I could go on feeling like this for a year, I would rather die. Her words of support were for me to suck it up.

    Nobody gets it. I never complain about being sick or hurting, but when I did, others just don't know how to listen.

    For certain, keep insisting to your doc that the pain meds are not cutting it so that you can get something better! I pray you find relief!!!!

    Colleen
    Diagnosed October 2006
    Medications
    Percocet
    Hydroxine
    Elmiron
    Monthly installations

    Comment


    • #3


      I am so, so sorry you're feeling so crappy! I hope your specialist can help. Sounds like the nortriptyline may not be the med for you. I'm glad your doc has other meds in mind for the future... that way you don't feel like you're up against a wall.

      I find Valium and Klonopin work well with my spasms and PFD symptoms. I've tried both... they both work for me.
      ****
      Jen

      *Diagnosed with severe IC in 2004
      *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
      *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
      *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

      **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      Comment


      • #4
        Thanks Colleen! I am so sorry you have had people be so nasty to you! My husband who is doing much better now, still sometimes hurts my feelings. He thinks I can just make the frustration go away by just willing it so! It may seem comical to people when they see how often I go to the restroom every day, but I wish they knew how painful and frustrating it is! Even my family members were cracking jokes every time I got up from the table at Easter. I tried to just laugh it off, but going every 20 minuts or so can be so aggrevating! I have had to re-arrange my life to try to get through the days, especially when it comes to driving more than a half hour. I have to know exactly where and when I can stop all along the way! When you can't handle one trip to the grocery store without having to take pain meds and lie down the rest of the day, you realize just how real this is. But those around me don't always see that, or since they see me resting so much they assume I'm lazy! That makes me nuts! Thanks for your advice. I am writing down all the changes I have had (very few good and mostly bad) reguarding the new meds and dosages he put me on since I saw him last so I don't forget something. Since the drive is so long, I have to make the best of each visit. His office is right next to the pain clinic, so I know where I will be referred to if it comes down to that.
        Thanks again! Please know that there are so many people here like myself who do know what having constant pain is like! And "Suck it up" definately isn't in my vocabulary!
        Hope you get some relief too!
        Rachel
        DX's:
        IC; PFD; possible Fibromyalgia; IBS;

        Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

        I've Tried:
        three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
        Currently using:
        Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
        Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
        I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

        Comment


        • #5
          I'm so sorry. I can relate to how you're feeling. I have stretches where I don't sleep at night and am so exhausted the next day I want to sleep the who day away.

          Have you thought about asking for a long acting pain med like oxycontin or mscontin along with the valium or klonopin? This combo might give you some relief and allow you to sleep longer stretches.

          Anonther thought is to start at the absolute lowest dose possible of the Elavil and gradually increase your dose so that you aren't so knocked out the next day.

          I hope you get some rest soon!!

          Sandy
          *IC-- Summer 2004; PFD--October 2005
          *Fibro--Fall 2000; CFS-- Fall 2000
          *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

          Total Abdominal Hysterectomy--adenomyosis--9\08

          04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

          Comment


          • #6
            Thanks Jen! It seems like most of my problems are due to PFD and out of whack nerves! I still stick to the IC diet right now since I have pain every single day. But I haven't responded well to common "bladder" treatments: meds like Pyridium and Elmiron, bladder installments, and Hydrodistention. I am so thankful to have found a Doctor that realized that and who is giving me options. Waiting is just so frustrating! I thought once I got a diagnosis and started on the Elmiron I would feel better very quickly, and like I said, it has been almost a year since my symptoms sent me looking for help!
            But I do have to count my blessings, I have only tried a few meds and treatments, there are lots of things left for me to explore before looking into more drastic meds and procedures!
            Thanks again!
            Rachel
            DX's:
            IC; PFD; possible Fibromyalgia; IBS;

            Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

            I've Tried:
            three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
            Currently using:
            Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
            Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
            I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

            Comment


            • #7
              Elavil issues...

              Originally posted by SandyRN View Post
              .
              Anonther thought is to start at the absolute lowest dose possible of the Elavil and gradually increase your dose so that you aren't so knocked out the next day.

              Sandy
              Hi Sandy! I haven't talked to you in awhile! Nice to "see" you again!
              As for the Elavil, I started at 10mgs and noticed some difference, but not much, while 20 had me sleeping like a baby. Unfortunately on 20 mgs I would sleep through alarm clocks (which meant my daughter missed the bus!), fall asleep on the couch and have a hard time waking up to take care of my little one, and that persisted even when I took the medicine as early as 7:00 pm. Also, because I work part time in the evenings I have to be able to drive home at about 8 or 9 pm and taking Elavil that early meant I couldn't drive.
              So while it definately helped, it didn't fit my life as a Mom with two kids who is desperately trying to get back to working full time!
              As for the other recomendations, it just depends on the Doctor since I haven't started Valium or anti seizure meds yet, but he gave me lots of possible options for the future and I can only assume that could involve a combo of things.
              Thanks again! Hope you are doing well!
              Rachel
              DX's:
              IC; PFD; possible Fibromyalgia; IBS;

              Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

              I've Tried:
              three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
              Currently using:
              Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
              Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
              I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

              Comment


              • #8
                :[

                i hope you feel better real soon!

                i recently had an awful flare that sounds like yours. prior to this past march i was just on atarax and it was controlling my symptoms...well, sorta, if you consider peeing 25 times a day "good."

                then BOOM, allergy season hit mid-march and knocked me off my feet. i was sitting in a hot bath literally 5-6 times a day. i was sleeping only 2-3 hours a night and felt miserable.

                i don't like the fact that i'm now on so many drugs but i feel SO much better!

                i honestly think i feel better during the daytime than i did before the flare. (but nights are still tough).

                you can see in my signature everything that i'm taking.

                once i got my neurontin dose up to 300mg i noticed i took about half the amount of vicodin.

                now i'm up to 400mg of neurontin and have only been needing 0-1 vicodin a day. this makes me very happy b/c i didn't want to end up as the suburban wife & professional on dr. phil discussing my addiction to pain pills!!

                also, my doc added two more antihistamines (singulair & zantac) in addition to the atarax. each one targets a different aspect of the inflammation process.

                plus i now use prescription lidocaine patches. i was skeptical about these and thought they'd be wimpy but they honestly help quite a bit!

                anyway, hope this helps. i honestly wish i'd been more willing to treat my IC with drugs in the past. i could have saved myself a lot of pain and a lot of trips to the potty.
                Lee Ann
                Current Rx Meds:
                Atarax, Ditropan, Elmiron
                Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
                Hooray for babies!
                Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
                Didn't work for me:
                Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
                IC (Mod-Severe) since 1996

                UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


                My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

                Comment


                • #9
                  maxine

                  i saw a funny email the other day
                  i think it was a Maxine

                  She said...old age is no place for sissys.

                  i guess shes right..because we have to be pretty tough..to handle this..in addition to life.

                  thats all i have
                  my hair is still falling out from the elmiron.
                  its been 36 days..since i quit it.

                  anyone have a clue when it will stop?

                  all i am taking now
                  is aloe vera pill
                  and elavil.

                  could it be the elavil?
                  dermatologist said no
                  uro said no
                  but the www says maybe
                  Quit ELMIRON due to hair loss
                  Cystoprotek ROCKS!

                  find me on FACEBOOK -
                  search my email [email protected]

                  Current Meds:
                  AM Cystoprotek & ATARAX 50mg
                  Dinner CYSTOPROTEK
                  PM Elavil 25mg

                  Comment


                  • #10
                    ?

                    Originally posted by LeeAnn View Post
                    :

                    also, my doc added two more antihistamines (singulair & zantac) in addition to the atarax. each one targets a different aspect of the inflammation process.

                    :
                    LeeAnn, how have you been feeling since you have been on the two antihistamines and singulair? I am asking because instead of putting me on Neurontin today my doctor wanted to try Zantac and Singular along with my Allegra. If this doesn't help I will see him in 4 weeks and he said we will try Neurontin then. He just thought we should try the more conventional and perhaps safer drugs first. He also prescribed Valium and more Vicadin as well.
                    I thought I would ask you first instead of posting a new thread just yet since I remembered when he brought this option up today that you said you were on similar medicines in your message.
                    Thanks!
                    Rachel
                    DX's:
                    IC; PFD; possible Fibromyalgia; IBS;

                    Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

                    I've Tried:
                    three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
                    Currently using:
                    Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
                    Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
                    I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

                    Comment


                    • #11
                      sending you really big hugs and hope that you feel better soon.
                      'The will of God will never take you where the Grace of God will not protect you.'

                      Comment


                      • #12
                        Medication rebound

                        I have taken Klonopin and know that it, and some other meds give rebound symptoms. It is a better idea to rotate some of these drugs so they dont stop working for you. For instance the Valium, Klonopin and probably the some of the others. Ask your doctor about putting you on a rotating schedule such as one week on one group. one week on another.
                        I take Ambien, but go off of it on weekends and take higher dose Atarax or 5 mg of Melationin to keep from building up an effect.
                        Sammi

                        Sammi

                        Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                        Diagnosis: IC, PFD (both in remission)

                        Comment


                        • #13
                          Thanks Cindy! I really appreciate your kind words! You always seem to have time to help me out even when you are going through so much yourself!
                          Rachel
                          DX's:
                          IC; PFD; possible Fibromyalgia; IBS;

                          Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

                          I've Tried:
                          three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
                          Currently using:
                          Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
                          Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
                          I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

                          Comment


                          • #14
                            Thanks Sammi, This wasn't something I was aware of. I will talk to the Doctor when I call to get my blood test results.
                            Rachel
                            DX's:
                            IC; PFD; possible Fibromyalgia; IBS;

                            Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

                            I've Tried:
                            three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
                            Currently using:
                            Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
                            Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
                            I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

                            Comment


                            • #15
                              I hope you will get some help very soon.

                              Donna
                              Stay safe


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