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  • Need support

    Hello...

    I was recently diagnosed with IC. For the last 20 or so years I've had bladder issues. I can even remember as a child having a sensitive bladder. In fact, people used to make fun of me because I always had to use the bathroom.

    I feel so discouraged right now because it just seems there is no cure in sight. I'm confused about what to do. Because I suffer from migraine headaches and severe allergies, I'm already trying to eat a very strict diet. To follow the IC diet is even worse. I only cook for myself and it's tricky. I don't know what to eat half the time. Luckily the migraine/histamine and IC diet are similar. This is one of the biggest hardships besides the pain and travel. It's horrible to be on a flight and suddenly have to go and then listen to a stewardess say no! People just cannot imagine the severe pain that can occur in the bladder.

    I would love it if anyone here can give me advice on how to manage my symptoms so I can get some relief. Any relief would be better than none. I've tried the antidepressants and cannot tolerate them. I'm allergic to Elmiron. So that leaves me with Hydroxizine. I take 10mg at night but I can't sleep through the night, even while on that med. Klonopin helped a lot to sleep but I didn't want to take it anymore because of worry about the long term effects. It is not easy to come off Klonopin. If I wake once or twice a night I feel very lucky.

    So can anyone offer me some hope about this condition. Can it get better? Should I take more Hydroxizine? I got great tips by reading this site and went out to buy Prelief last night. I don't notice any effects yet. I'm having a "flare" right now because I'm PMS'g. I thought these flares were infections in the past and I can't tell you how many times I thought I had a UTI or a yeast infection. My stomach and genitals hurt so much during a flare. It feels like I pee fire. But no UTI! Crazy huh?

    I want to drink a lot of water but I also have another problem. My bladder is half the size of normal people. Or maybe it has half the capacity. That's what the urologist said. So I go every hour on good days. My life revolves around bathrooms. It's a horrible existence as you probably know. Anyway, because I don't drink enough, I get kidney stones (have had 4 in 15 years).

    Can anyone offer me some hope? Is there a light at the end of this tunnel. I order something here call Cysta..something. I got a one month free trial. I hope that offers even a tiny hint of relief. I'm willing to anything for relief. I often don't know if migraines are worse or if this is worse!

    Thank in advance for the help and support. It means a lot to me.

    I will soon go back to the Urologist for a follow up. The doctor is not the best because he rushes people. He gave me the diagnosis, wrote this website name and then shoved me out of his office with a prescription. It was so horrible.

    I want to add that I had the necessary testing and there is nothing visibly wrong in my bladder.

    Lastly...whew! Can someone tell me if it's ok to take AZO for a few days when this pain is severe. I'm wondering what can be done when there is a sudden and unexpected flare. In the past Klonopin helped to calm the bladder. But how about the pain and burning? I worried about AZO because the package said not too take too much and it seems that it's for UTI's. I really need a bladder pain med. Naproxen doesn't cut it for me.
    Last edited by Toto; 02-03-2011, 10:57 AM.
    Frances

    Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

    Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

    Other conditions: Migraines, allergies, mild IBS.


    "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

  • #2
    Hi Toto,

    So sorry that you suffer from IC but glad that you are here where you can find support from others that are also suffering, as well as many that have their IC under control. I suffer from migraines as well so I know how that feels. Strangely though, since I have had IC (3 years) my migraines have almost stopped. This happened to my mother at my age too, so I worry that they will come back in a few years like they did for her.

    Why did they only give you 10 mg of hydroxyzine? I take 100mg every night and I sleep pretty well. You can also take trazodone which is an older antidepressant that many with IC take, mostly for the sleep side effect. We take a lower dose so maybe that would work for you. Those two might be something you want to discuss with your Dr.

    About your Dr rushing you out, do you have another Dr in your area that you can try? If your's isn't taking time with you then I would say it would be best to find someone else. IC treatment takes time to find the right combination of meds and lifestyle and you need someone that is going to take time with you.

    I am guessing that you have tried all the antidepressants like amitryptiline and drugs like depakote for your migraines? One of the things I first notices when I was diagnosed with IC was that many of the drugs used for IC were ones I had tried when my migraines were at their worst and I was having them non stop for days.

    Has your Dr mentioned instills? Those are where they instill different medications directly into your bladder via catheter. Sometimes they use sodium bi card and lidocaine with heparin, or some use just marcaine and they are other combinations of meds that can be used. They sometimes used elmiron too, so it the problem you had was with stomach trouble you might be able to use it this way. I use marcaine and it helps me sometimes go hours without having to use the restroom.

    There are many many treatment options for IC these days. I would suggest if you haven't already check the homepage of this site and look under the 'patient" tab, there you will find a lot of helpful information.

    Good luck and I wish you the best, glad to have you here, but so sorry you have IC.

    Sandra
    Link to the patient information, everything from What is IC? to Disability
    http://www.ic-network.com/patientlinks.html

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
    http://www.auanet.org/content/guidel...ent_ic-bps.pdf

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    • #3
      I have been on clonazepam for years and it helps me sleep at night I also take seroquel. If these things help you take them I would'nt worry about addition you need relief and that is what its for. I also take peridium almost daily and that helps with my bladder. I don't enjoy taking alot of medications but it beats the alternative. If you feel rushed by your uro you might want to try to find another one more understanding. I wish you the best of luck keep us posted I am sure there will be more responses to your questions were all here for you God Bless.
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      • #4
        Thank you!

        I was so pleasantly surprised to see responses to my thread so quickly. Thank you both so much for your quick responses! Already I feel so hopeful! I will definitely ask about upping the dose of Hydroxizine. Does that med only help with night issues?

        I had no idea about the other options mentioned here! Absolutely none. I was shoved out of the doctor's office with few to little options!

        I will make an appt. to see the Uro again.

        Again...I can't thank you enough for your support!

        I will check out the patient tab! It might take some time to navigate this site...which seems like a very valuable resource.

        Oh...I want to mention that I take Verapamil for migraines. It's working ok but honestly, the diet works the most, even though it's not convenient and I had to give up the food I loved the most. An easy sacrifice in my opinion, compared to the horrible migraine pains. (I follow a book called "Heal Your Headache.")
        Last edited by Toto; 02-04-2011, 07:37 AM.
        Frances

        Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

        Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

        Other conditions: Migraines, allergies, mild IBS.


        "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

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