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Uro "doesn't believe" in Pain Meds for IC

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  • earthlady
    replied
    The dr. though also warned me about taking it at exactly the same time as they both can cause drowsiness. You may want to check with your dr. to see if it is ok for you.

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  • polygon
    replied
    Originally posted by earthlady View Post
    Codeine releases histamine and is why some people start itching after taking it.
    For those of us who have a proliferation of mast cells already in our bladder I could see where it could make everything worse by releasing histamine. My dr. advised me when I had been taking Vicodin a long time ago that I may have to take the Atarax or Benadryl along with the Vicodin.(but not together) My bladder pain actually got worse if I took vicodin alone without adding the antihistamine. Of course I realize that not everyone's bladder problems are related to an increase of mast cells but in my case it seems it was, or at least was effected by it.
    Thanks for that, earthlady!
    I'll try taking it together with an antihistamine and see what happens.

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  • earthlady
    replied
    Codeine releases histamine and is why some people start itching after taking it.
    For those of us who have a proliferation of mast cells already in our bladder I could see where it could make everything worse by releasing histamine. My dr. advised me when I had been taking Vicodin a long time ago that I may have to take the Atarax or Benadryl along with the Vicodin.(but not together) My bladder pain actually got worse if I took vicodin alone without adding the antihistamine. Of course I realize that not everyone's bladder problems are related to an increase of mast cells but in my case it seems it was, or at least was effected by it.

    Leave a comment:


  • Bodicea
    replied
    New uro

    You deserve better. I know where you are coming from- get a new Urologist. Or go to a pain clinic- although they aren't always a sure thing. You can get through this.

    Leave a comment:


  • polygon
    replied
    Originally posted by Briza
    That was my main pain med and I got excellent relief from bladder pain with it.
    Briza, did you have any problems with the histamine releasing properties of codeine? I.e. did were you on anti-histamines while taking the Tylenols, and if you were, did it cover up the effect efficiently?

    Also, I'm not knocking the worth and gratitude for tylenol 3s, it's much better than being left with nothing, but since I'm taking Paxil, I don't think I'm absorbing it properly (enzyme inhibition in my liver) and getting less pain relief than I should be.

    Leave a comment:


  • DaniMSC
    replied
    Argh it makes me so upset to hear that!! You poor thing, no wonder you are traumatized! I just can't believe doctors could tell someone they are making up their pain, not with the huge number of chronic pain conditions that exist in this world!

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  • polygon
    replied
    Has anyone had issues with Tylenol 3's?
    Got a script two days ago, the only thing my doctor can write comfortably for pain that isn't OTC (and it's for an infection of my wisdom teeth :P) but I think it's irritating my bladder.
    There's caffeine in them unfortunately, apparently to help absorption and prevent abuse, but even a little bit of caffeine is a no-no. I read there are ways to isolate the codeine called a cold water extraction method, but I'd feel like a sketchbag doing that.

    What would you guys do in this situation? (not asking for medical advice, just personal experience/opinion)

    Leave a comment:


  • VCNJ84
    replied
    Originally posted by DaniMSC View Post
    OH my gosh VCN my heart really goes out to you! Have you asked about Tramadol? Have you pushed them on this, bringing in IC lit to show them or asked for a specific quantity (1 bottle, no refills!) so they can't accuse you of trying to become an addict? I don't know about you, but if it were me, I'd be in that office with tears streaming down my face, saying, "Look, people lose their jobs from this disease, and they lose their marriages, and they become shut-ins. Do you think that might be because it causes extreme pain and loss of normal functioning?" Has your uro at least prescribed you a TCA like Elavil, or the type of drugs like Lyrica? Those can help with pain. Doesn't he understand about the pain cycle??? That if you're frequently in sharp pain, you're going to have a reaction (clenching muscles, etc) that will actually cause a continuation and exacerbation of the problem? Like I said, I am so sorry that you are in this situation and I really hope you can get the help you need.
    Thanks.

    Someone did try me on Tramadol once but it did nothing. I think OTC pain killers do the same for me.

    I am not as pushy as I used to be, b/c back before diagnosis I was treated like a drug addict (without even asking for drugs) by a gyno and an ER. Saying I "had nothing wrong with me and was making up the pain for drugs and attention".

    I am just traumatized by that and scared to driver doctors away.

    Most of my doctors are in Philly and it is their policy not to give pain pills b/c they claim there are a lot of drug seeks that come in and they can't lose their license by weeding them out so everyone needs to go to pain management.

    My fiance just helped me find a pain management place in NJ...I am gonna call Monday and see how to go about getting an appt. there.

    Leave a comment:


  • DaniMSC
    replied
    OH my gosh VCN my heart really goes out to you! Have you asked about Tramadol? Have you pushed them on this, bringing in IC lit to show them or asked for a specific quantity (1 bottle, no refills!) so they can't accuse you of trying to become an addict? I don't know about you, but if it were me, I'd be in that office with tears streaming down my face, saying, "Look, people lose their jobs from this disease, and they lose their marriages, and they become shut-ins. Do you think that might be because it causes extreme pain and loss of normal functioning?" Has your uro at least prescribed you a TCA like Elavil, or the type of drugs like Lyrica? Those can help with pain. Doesn't he understand about the pain cycle??? That if you're frequently in sharp pain, you're going to have a reaction (clenching muscles, etc) that will actually cause a continuation and exacerbation of the problem? Like I said, I am so sorry that you are in this situation and I really hope you can get the help you need.

    Leave a comment:


  • VCNJ84
    replied
    No one will give me pain meds either I see so many people in so many of my different support groups getting pain meds and I feel cursed. I think it is a combo of I live in a state with strict prescription laws and I am only 27 and "look too good" for pain meds as they have tried to tell me.

    I literally was contemplating moving to Florida to get the help I need since they have more lax pain laws, but we can't b/c my husband's job and our families keep us here.

    Sometimes I want to cry, b/c I am NOT a drug addict. I am a woman who needs maybe one Vicodin every few days when a crippling pain shoots through me. I know this helps b/c when I was undiagnosed my primary gave me some, but once I got diagnosed he told me I could never come to his office for bladder stuff again and I was the specialist's problem now Granted to say I just got a new primary. It makes me sad to know a cheap medication exists that would help me and no one wants to give it to me.

    It is really frustrating and getting to me as I get shooting nerve pains in my bladder and vagina.

    My new uro does not prescribe, but he will send me to pain clinic. But the clinic he normally sends people to is not in the best neighborhood and the woman on the phone seemed nasty when I called.

    He said he can send my records someplace else, but I have to find it on my own and I am having a hell of a time finding a place.

    If anyone knows of a place anywhere in the Philly region that treats with pain meds, please PM me the name of the place. Thanks!!

    Leave a comment:


  • DaniMSC
    replied
    Yeah I've learned a few more helpful things just tonight here, yay! For the hydoxyzine I took half of the pill...so I think 10mgs? I think I'm just really sensitive to most meds. I took Elavil for at least four months, could never get past 12.5 mgs a night, and felt like I was coming out from under a rain cloud when I stopped it to try other things. I recently started Elmiron and I am happy to say I don't have any side-effects. So far it seems like the best med I've taken (except that it isn't helping yet, haha) but compared to everything else that has given me dry mouth, constipation, fatigue etc. its great. If you can afford it I would just start it now. I sure wish I could've started sooner, but I only recently got some financial aid. All the best to you, good night!

    Leave a comment:


  • eilostnyc
    replied
    Dani,
    Thanks for replying so quickly. These meds are tough on our bodies. I am going to try the hydrox and take it very early at night. How many milligrams did you take initially? Have you thought of trying Elmiron, I am not sure if I am yet. I know you said the elavil made you feel like a zombie but that will lessen with time. I wish that was my only side effect because it really helped the spasms but the heart pounding was too much and it was only 25 mg. I tried to cut that in half but it didn't help the symptoms. Everyday we learn something. I thank God for this forum and all the nice people here that want to help one another. Have a good night.

    Leave a comment:


  • DaniMSC
    replied
    I think I'm similar to you- I have the worst pain as my bladder fills. It seems like every time I drink something, it goes immediately to my bladder and I immediately need to pee it out! I pee between 20-40xs per day. And the longer I hold it the worse the pain gets. But now its gotten to the point where my bladder itself just hurts, so sometimes it hurts to move that area and even walk.

    Elavil worked pretty well for me too, and when I was taking it regularly I was able to pee every 45m-1hr which was awesome. But it had very strong effects on me, so strong that I woke up at 1pm every day feeling like I had a hangover. And that was only with 12.5 mg taken at 7pm the night before! Imiprimine caused me to have trouble urinating, so that was not a good replacement. Hydroxyzine definitely helps me sleep, but also makes me feel exhausted all the time. Tramadol really really helps my pain. It's basically the only thing I have that I can actually use to control my symptoms instantly. I say its "bad" because it is an "opiod analgesic" so its pretty heavy-duty. It can be habit-forming, causes constipation, and can have reactions with other meds (like elavil, SSRI anti-depressants, welbutrin, all of which I take). I'm afraid to take it too much because I don't want to become dependent on it or have adverse reactions.

    It is totally crazy how IC just comes down upon you! I had a bladder infection last year around this time, got over it, and everything was fine. Two months later I had another one and I just basically never got better from that one! I've been suffering with this since December of 2010, but I didn't realized IC was my problem until February 2011. I really hope you can get over yours more quickly!!! Its frustrating how all the meds for IC seem to require a trade-off, isn't it?

    Leave a comment:


  • eilostnyc
    replied
    Dani,
    What symptoms are the worst Pain? I have pain as my bladder fills each and every time and so I go like 20x a day. The elavil helped calm my bladder but gave me heart pounding. I am trying the Imiprimine but that seems to give me an irregular heart beat too. Its so discouraging. I am going to try the hydrox just to see. Its maddening how we develop these things and its funny 2 months ago I never heard of this. I woke up one morning and really thought I had a UTI. I have had OAB for a few years but it wasn't out of whack like this. The smalles amount of urine aggravates my bladder. I am strict on the IC diet but still have that sensitivity. Why is tramadol bad for you? I tried one today and it helped a wee bit so I may try it again tomorrow. I don't get any ill effects from that one at least. I am scared of the Elmiron because of its a blood thinner and I am prone to nose bleeds especially in the dry cold season, so debating on that one. talk to you soon. thanks for sending me info on the diet.

    Leave a comment:


  • DaniMSC
    replied
    Anti-candida diet is basically a diet that is supposed to help fight an infection of "candidiasis," basically a whole body yeast infection. Don't ask your MD about it because they don't believe it exists. I don't know if it does either! My acupuncturist told me to do it because she believed I has candidiasis, since prior to my IC I had taken tons of antibiotics for different infections.

    In an anti-candida diet, you cut-out all things that "feed" the yeast, so all sugar of any kind (no pears! no carrot juice!), no carbohydrates (although I didn't do this, i still ate oats/quinoa/rice) You basically just eat meat and vegetables. I tried it but it didn't do anything except make me depressed. :-/

    It works for some people with IC symptoms, because apparently yeast infections can cause IC symptoms, or people are allergic to sugars or something. Some people have to stay on it forever. :-(

    Leave a comment:

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