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I need someone to talk to!

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  • I need someone to talk to!

    I am in the worst flare that has been constant since September. I have had hydrodistensions done so many times that they no longer work. I have most recently tried Botox which did not help at all and made my Pelvic Floor Dysfunction act up and was then sent to a pain clinic to see the dumbest doctor I've ever met in my life. He prescribed me Lyrcia which I took for one day and then realized I could never take again. I was so drowsy, couldn't get my thoughts together and couldn't see well. SO I made him switch me to Neurontin and tonight is the first time I have taken it because the laundry list of awful side effects scares the **** out of me. I also took an Ambien tonight and perhaps the two don't mix well because I had a crying attack for about an hour about how I just don't feel right and that I am sad and hopeless and wish someone could help me find some light at the end of the tunnel. And now I can't sleep. I just want to know if anyone of you has ever been here. I'm cooking from the IC cookbook, I'm following the diet, taking Elmiron. I just don't know what to do next. And I just don't want to live like this. Can anyone relate?

  • #2
    I do understand , Sometimes things gets so bad with IC it pulls all of us down, but you cant just give up we all have to keep fighting..Its the only way we are going to get heard and get the message out there so they can find a cure, its going to take all of us..
    But yes I truly to do undertsand...And there has been so many times I just sit here and cry by myself because I just feel like no one understands, But it will get better hun.. You hang in there and try to think positive..Sending you lots of (((((((((((hugs))))))))))) and warm wishes..


    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

    Link to Patient Handbook:

    Diet Reference Sheet:

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


    • #3
      You are not alone with this. I have been where you are and still get to that point frequently. I just started the Neurontin about two months ago. It takes a bit for the body to adjust and if you are doing like I did I had to gradually increase the dose. I am finally up to the maximum that the doc wants me taking now but I realize that he may increase it. I am also on Wellbutrin. The two together have been a rough adjustment. Give your body time to catch up. That is hard I know especially when you are in pain. I often cry for what seems like no reason but underneath it is just frustration and a feeling that things are not going to get better. When you reach this point let it out don't hold it in. Often my tears turn into anger when I don't let it out and that is a very unhealthy stage to be at.

      Please PM me if you want to talk or if you just want to talk about the Neurontin.

      Something else you may want to consider is talking to someone. It took a long time for me to do this and I still have trouble but it has helped me sort out all of my feelings with regard to this disease. Pain can do weird things to your brain!! If you are not at this point yet then that is fine too. We are all here to give you support and encouragement.



      • #4
        Myca I was so scared and in pain when I first came down with IC, I felt life was not worth the trouble. I took advice from a friend who strangly enough has IC but never told me. She said until I can get stable to stay ahead of the pain and take my pain pills. TY-3 mostly. I am on Elmiron and watch my diet. It has been nearly a year now and I am doing very well. Please know we care and we hope you will get to a point where the IC is not totally controlling your life. I need to believe there is always hope. You are in my Prayers. Ziggy


        • #5
          Some medications take a while to get used to. I would go back to the pain doctor and let him/her know how you are reacting.

          Warm healing thoughts,
          Stay safe

          Elmiron Eye Disease Information Center -
          Elmiron Eye Disease Fact Sheet (Downloadable) -

          Have you checked the ICN Shop?
          Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

          Patient Help:


          Diet list:

          AUA Guidelines:

          I am not a medical authority nor do I offer medical advice. In all cases, 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.

          Anyone who says something is foolproof hasn't met a determined fool


          • #6
            Hi Myca
            My name is Angela and I have been suffering with IC for the last 3 or 4 years(maybe longer)
            I know exactly how you feel......I was also afraid to take Neurontin andLyrica the side effects will blow your mind.
            I feel the same as you....but we gotta have faith that it will get has to.
            I get the bladder instills 3x a week......its just awful!
            I am here whenever you want to talk!


            • #7

              yes IC sucks
              but it could be worse
              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


              • #8

                Hi Myca
                I have tried several times to e-mail you and they have all come back delivery failure ...did you give me the right address?


                • #9
                  I am so sorry you are feeling so alone. This IS the place to come if you are feeling alone. I have my own issues, but let's focus on yours for now. I have not taken the meds you are talking about but I myself am in the early stages of my dx and treatment. Basically just wanted to let you know you can PM me anytime you want. There is an amzaning amount of love and support here. Good Luck and I hope you get your treaments straightened out soon.
                  Mia Sowell
                  Fort Worth, TX
                  2 Kids
                  Ethan (3)
                  April (17)
                  Husband Eric (Very Supportive)
                  Clinically Dxed 04-16-07
                  Symptoms Since 2004

                  Elmoron 400mg 2x Day
                  Atarax 50mg 1x Day
                  Xanex .50mg 8 hrs As needed
                  Vicodin 5/500mg 4-6 hrs As needed
                  Xanaflex 4mg 1x Day
                  Urelief Plus 6 hrs as needed for Bladder spasms
                  Prelief as directed


                  • #10
                    know how u feel

                    I feel exactly the same as you all. I have had sever pain for 3 horrible years. i told my doctor what i had. know one around me understands at all. no one to talk to either. do alot of private crying myself. i thought it was just me until i found this sight and started posting. hang in there, i know easier said than done.


                    • #11
                      Hi Yes I can understand wow Im in a bad flare up have been for a week steady I am also on Elmiron and apo-impraminea nd paino killers also sapoium sor spasums and do the hosp thing every 3 months dmso so Iv been there have had this for at least 10 years when its this bad I do cry doenst help but what does help is top talk to others that have the same thing which alot of people do never knew that until I tryed this on line so good luck hope you satrt feeling better I go on the 26 for my hosp treatment take care


                      • #12
                        Thank you all for your kind words and support

                        Sometimes it just gets so bad it's hard to take. And as supportive as my husband is, it's hard for him to understand why I am depressed and sad and wish I was asleep all the time because that is the only time I am pain free. I wish you all well who are in a bad flare. I pray every night but it doesn't seem to work.


                        • #13
                          Hi Tammy wow so many in pain didnt realize so many people had IC Im in a bad flare now have been a week hurts man I cry keep thinking why Im crying am I a suck but when I hear other people cry to quess its not just me going to hops tues for dmso treatment do that every 3 months so glad you can talk to others and understand my family dont, they worry about the drugs Im on ,I tell I would screaming with out them ,hope you start feeling better thanks for another ear take care of yourself