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  • I drank coffee out of desperation

    I am so frustrated and there are no words even to express my feelings. I'm so darn sick of having migraines, IC and allergies. Really...which is worse? I've had migraines for days. Yesterday to get to work (teaching) I had to take the train because my car's in the shop. Well...I had a SEVERE panic attack for fear of getting on the train and having to pee. So of COURSE I had to pee at the train station right away when in panic mode. I took Ativan but it didn't work as quickly as I wanted. Luckily, by God's grace, I made it to my destination ok.

    That morning I drank a coffee because I was so tired of the 4 day migraine and along with Naproxen and Frova, I needed that extra jolt. (of course caffeine doesn't help with anxiety) Caffeine helps me abort a migraine if I use it occasionally. UMMM....not a good thing for an IC sufferer. My symptoms got a tad worse over the day but not so much. My average is every hour and according to my pee diary (as I call it), my frequency increased a little. But I was terribly uncomfortable.

    I DESPERATELY wish I could have caffeine daily. Honestly, I've been pretty much off caffeine for a year. BUT I feel MUCH BETTER in my head when I drink coffee. My mind is clearer, I have more energy. However, my bladder suffers. I exercise, eat veggies and have done a HOST of other things to get energy, and I swear, nothing replaces my ONE cup of coffee, despite research that says caffeine is not good for you.

    Do I sound crazy? I wish there was another energy replacement. The fullness in my head from the headache actually disappears from the coffee.

    SOOOOOOOOOOO bummed.

    Had to vent....
    Last edited by Toto; 09-20-2011, 02:34 PM.
    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
    Have you tried low acid coffee? I can have one cup of that in the morning with no problem.


    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    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: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    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.
    [3MG]

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

    Comment


    • #3
      I get migraines too and I know what you mean about caffeine helping to abort it. Occassionally I take half a caffeine pill (you can buy OTC) and take it. It's the same amount of caffeine that excedrin has. So far I have not had any flairs from the caffeine pill. I would also try low acid coffee too. It is frustrating when you can't do anything about headaches and migraines, I feel your pain!
      -Pammylynn Rose
      Wishing everyone a pain free bladder day!


      Painful symptoms start in May 2011
      Diagnosed with IC in Aug 2011

      MEDICATIONS
      Elmiron
      Axert (only for rare migraines)
      Strict IC diet
      Gluten/dairy/egg free diet


      Comment


      • #4
        I had a migraine last week and Tylenol was worthless.

        You are so right about caffeine helping a migraine. I had a half cup with Prelief and had no problems with my IC. I would have loved to drink the other half cup but I was too afraid of a flare.

        If someone were to ask me what I miss the most I would say my COFFEE!!!

        I've been known to linger in the coffee aisle in the grocery store if someone is grinding coffee beans. It smells so good.

        Comment


        • #5
          I still have my morning coffee thanks to Euro mild, I order it from the IC shop and it's a great coffee.
          IC diagnosis 3 weeks ago.
          Vesicare 10 mg once daily
          IBS and Gerd-Zegerid
          IC diet
          Elmiron 100 mg three daily
          Hydroxyzine 25 mg at night
          Amitriptyline 10mg at night
          Diovan 60/12.5 daily
          Topral 50 mg daily
          Zoloft 100 mg at night
          Klonopin .5 twice daily

          Comment


          • #6
            Greeneyes, thanks for the tip. I think I'll order some.

            Comment


            • #7
              Ok...so let me see if I understand. The LOW acid, and the other coffee mentioned, still contain caffeine? Seems like a dream and I want to try them! And I've never heard of an over the counter caffeine pill. Pammylynne...can you let me know the name if you get the chance.

              For some reason I thought caffeine itself hurt the bladder. I'd LOVE to be wrong.

              Irfran...I LOVE that coffee smell too. I love it more now that I don't drink coffee. There's just nothing like it!
              Last edited by Toto; 09-20-2011, 02:33 PM.
              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)

              Comment


              • #8
                The name if the caffeine pill is Stay Alert (by RiteAid). We got a generic form.
                Remember it doesn't bother me but it may bother you. Make sure you take only half the first time.
                -Pammylynn Rose
                Wishing everyone a pain free bladder day!


                Painful symptoms start in May 2011
                Diagnosed with IC in Aug 2011

                MEDICATIONS
                Elmiron
                Axert (only for rare migraines)
                Strict IC diet
                Gluten/dairy/egg free diet


                Comment


                • #9
                  Thank you. It wouldn't hurt to have them for desperate times!
                  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)

                  Comment


                  • #10
                    good luck, let me know if it works!!
                    -Pammylynn Rose
                    Wishing everyone a pain free bladder day!


                    Painful symptoms start in May 2011
                    Diagnosed with IC in Aug 2011

                    MEDICATIONS
                    Elmiron
                    Axert (only for rare migraines)
                    Strict IC diet
                    Gluten/dairy/egg free diet


                    Comment


                    • #11
                      I will, thanks.

                      Donna, does your coffee contain caffeine like a normal cup of coffee?
                      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)

                      Comment


                      • #12
                        Originally posted by Toto View Post
                        I wish there was another energy replacement.(
                        Hi Toto, I don't want to recommend anything that might make you flare, but a friend of mine told me about some yerba mate tea called Guayaki. You can get it at Walgreen's and many other groceries, as well as online. I've read a bunch of testimonials from other IC-ers who say they can tolerate it and feel it's a great substitute for coffee as well as a source of nutrients. I've only just had a tiny taste so far (the mint flavor was really good!) because I've been flaring a lot lately and don't feel I'm ready to start testing many new foods yet. Just thought I'd mention it though since that immediately came to mind when reading your post.
                        Last edited by ICNDonna; 09-21-2011, 02:54 AM. Reason: Removed advertising.
                        Diagnosed with IC in April 2011. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.

                        Current medications/treatments:
                        Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths

                        Previous medications/treatments:
                        Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek

                        Comment


                        • #13
                          My coffee does have caffeine --- but very little acid and acid seems to be my problem.

                          There's also a low acid coffee that's available in many (if not most) grocery stores. Kava is located with the other instant coffee. I have some on hand but prefer my brewed coffee.

                          Donna
                          Stay safe


                          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                          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: http://www.ic-network.com/patientlinks.html

                          Sub-types https://www.ic-network.com/five-pote...markably-well/

                          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                          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.
                          [3MG]

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

                          Comment


                          • #14
                            I like my coffee too, so I looked into it a bit, espresso has lower acid then reg.

                            Through trail and error I figured out my bladder dosen't like arabic coffee, I find Columbian easier on my bladder.

                            So when I need a coffee fix I will have a latte 16 oz size, with a single shot of coffee, these usally come with a double shot, so it is basicly coffee flavored milk.

                            On another point if you all get migraines why don't you ask your Dr's for a rx for migraines, I take zomig, I get the pills you swallow, not the dissolve under the tounge they have aspertaine in them.

                            This is not a pain medication, it does the same thing as caffine does, constricts or dialtes the blood vessles in your brain. It dose not bother my IC, no loopy feeling etc. I take 1-2 tabs at the first sign of a migraine, it ussally helps a great deal with the headache. The med is expensive but I usally only need to take one pill at a time, often only the one time in the day.

                            There are other migraine meds but this is the only one I have tried.

                            MG
                            My are with you all. May you all find a way to peace and joy in your lives.

                            Comment


                            • #15
                              Phoenixgirl...thanks for mentioning the tea. I'm definitely interested in trying it.

                              Thanks Donna! I will check out the Kava and give it a try. In fact, I think I've seen it in my travels but never thought of what it was until now.

                              Mothergoose, thanks for the support and suggestions! I've actually tried most migraine meds on the market over the last 20+ years. I take Frova currently (tried most of the triptans and I go back and forth with them). Just a triptan doesn't do the trick and usually I have to take Naproxen also, plus the caffeine. The problem is I get migraines very frequently and sometimes my period will set them off for a week or more. And there's a limit on the triptans, as I'm sure you know. I also take a preventative called Verapamil and am in my third month of Botox shots. The botox is pretty good for the first couple months but wears off as it is doing now. In two weeks I will get the shot again and hope to find relief. SUCH a pain! And what's a nuisance is that my IC is often triggered when a migraine hits. I need a NEW body!

                              Thanks for listening.
                              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)

                              Comment

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