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  • "cocktail"

    i had a cocktail done at the doctors yesterday and i am getting really horrible headaches. i went in for one two weeks ago and had a horrible headache, i thought it was maybe bc of my period but im no ton myperiod now. does anyone get bad headaches from them?

  • #2
    I am not sure if you have the same ingredients as my coctail but I have never had problems with headaches..but remember IC can be very different for people.
    TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
    My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

    Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
    Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
    I post to encourage and offer total support for rescue instillations.
    Find me on facebook: L. Clark Thomas
    Louann

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    • #3
      headaches from instillations

      This is my first entry into the ICN Support Forum. I felt compelled to reply to this concern. I also experienced headaches during the 1st few times I had the instillations. I thought it was just me, because my major problem with the medications I have tried are allergic reactions. Since I have been through a long variety of meds in the last 4 years, I changed my urologist and she started me on the instillations. The first one was horrible. It was given to me in the office which was on the 4th floor of the hosipital. I ended up staying an extra few hours crying and rocking on the toilet in lobby bathroom. I had my friend go to the cafeteria and bring back a cup of ice to put on my urethra. (Ice cubes...ooch!) You can imagine how cold that was. After three stops on the way home, which was an hour drive, I could not take it any more. Finally, I arrived home and ran into my bathroom and I spent the next few hours dealing with spasms and drinking as much water as I could to wash the medicine out. After I was able to get a proper ice pack and lie down, my mouth became very dry and my body felt very strange. On the second day I developed a severe headache and of course smelled like garlic..ha ha..

      That was then. I started with a series of 6 instillations. Once a week. By the time I had the last instillation, I was still having headaches, but they were not as bad as before, nor was the urethra burning and spasming. I have been through another series of 4 since then and now go when I need them. I have a new urologist who was recommended by our IC support group leader and I just love him! I told him about my problems with the instillations from the past and I don't know exactly what he did, but I feel soooooo much better after he has done them. He did them himself, and now his assistant will probably be doing them. However, I have asked for a video on how to do this myself at home. It is an hour drive to get to his office and I would like to try doing these several times a day and see what will happen. He seems to think that would be a great idea and he has seen alot of success with other patients. My only fear are the headaches and my allergies to most medications. Like Hydrocodene, I can take a few per day, but if I take too many - like 3....I feel like I have a hangover. Unfortunately, I don't know what else I can take that will let me have a somewhat normal life.

      Now, as far as the headaches, I can't advise you to keep pluggin' along....that's a joke.... or to stop. Mine became less intense. I am only sharing my knowledge of my own experience. I wish you the best and hope you find what will work for you. If you have any questions about the procedures I have been through, just let me know, I would be more than happy to discuss my experiences with you. Right now, I am having a low flare. I am able to keep the intense pain at bay, but I also feel like it's getting ready to blow, as I have picked up my activity level. Gotta try!
      The last few days have been glorious!!! I had a hydro last month, maybe it is working now....I just never know. Keep trying! Like my kids say....:You can dooooo ittttt! Have a great day and know I care.

      God Bless

      Rhonda Garrison
      Last edited by Rhonda Garrison; 03-15-2007, 08:30 PM. Reason: let anyone know I will be including all my meds and info at a later date

      Comment


      • #4
        Do you know what was in the cocktail? There are many different combinations used for instillations.

        Rhonda, it sounds very much like you are on DMSO --- the taste and odor are usually from it. DMSO helped me for a long time, but I'm not on it any more.

        Donna
        Stay safe


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        • #5
          The DMSO treatments I did gave me very bad headaches.
          Minds are like parachutes-they ony function when they are open.
          -Thomas DeWar-



          ICN Newbie Volunteer


          *ICN Angel 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.

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          • #6
            no unf i dont know. im going to ask next time what it is and tell them about the headaches. yeah i have the initial pain in the urethra but i knew that was going to happen. last night and this mornign i was also have sharp pains in the lower part of my right back. i feel like im falling apart! i was pry just sleeping wrong but now im all panicky bc of the headaches. more and likely i have a sinus headace or something!!

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            • #7
              instillations

              Donna,

              Thank you for your response. I will look over my medical records and figure it out. I don't get the headaches like I did a year ago, but it very well could be the lack of DMSO in my cocktail. Personally, I think I am just fine with that!
              At this point I would consider just the lidocain (cant spell, I'm pretty tired and can't sleep. It's almost 4:00 in the morning.

              I will get back with the info. Hummmmm?!? Very interesting.

              Rhonda

              Comment


              • #8
                I agree with Donna. There may be a difference in the recipes and the one you are using now doesn’t have the same ingredients. It would be a good idea to check about the ingredients. That could be the problem. There are kinds of recipes for instillations.

                It’s great that the instillations are working for you :woohoo: . They have worked for me since the beginning. I have never needed anything else for pain or relief of symptoms.

                There are boards for pain management,managing flares and miscellaneous treatments if you would like more information. Like this thread, you will find a lot of experiences and ideas for relief from pain.
                Last edited by L. Thomas; 03-17-2007, 11:42 PM.
                TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                I post to encourage and offer total support for rescue instillations.
                Find me on facebook: L. Clark Thomas
                Louann

                Comment

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