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  • Help??

    Would any of you be willing to share some of what your medications pain or other meds do to you that irritate your family members......

    I want my Hubby to trust me with my own self and my pain management.

    Here is what happens "SOMETIMES" not everytime when I take my meds and it has variables to it like if I am sick and on other meds with the regular meds, if I'm overtired, hungry,......

    1. I sometimes fall asleep while on the computer
    2 I sometimes get sleepy while eating a big dinner especially if there is wine
    3. Sometimes I say things out of context or mumble things that may not make
    sense to anyone around me but to me, they do
    4. Sometimes I fall asleep sitting up in bed while watching tv

    I never take these meds together when I have to drive, I wait until I get to my destination and I'm done driving for the day or few days. I never operate heavy machinery while on these meds and I would never be with a child or children while on these meds unless I was with another adult. So I take my meds seriously and responsibly.

    I see my therapist tomorrow who know nothing about pain meds and what they can do to a person and wanted to bring other people's experiences along with me so I didn't feel so alone. Is there anyone willing to share what happens to you when you take your meds?

    Thanks for your love and support....


    Kara
    Last edited by Kara29; 01-06-2011, 08:53 AM. Reason: To preserve my self
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  • #2
    Alot of people talk to themselves I call it thinking out loud. The meds that make me dizzy I take at night. I am on clonazapam, muscle relaxers,and seroquel.
    <center>
    <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
    </center>

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    • #3
      Pain medications definitely make me sleepy, but I can't take them without phenergan and I think it's the phenergan that causes the drowsiness. I've never gone to sleep at my computer, but definitely have in front of the TV --- even without medications.

      You might want to invite your husband to go with you to your pain management physician so he can better understand your medications.

      I'm so sorry you're going through this.

      Sending gentle hugs,
      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


      • #4
        Hey girl,

        Here's the reality of pain medication... your body can develop tolerances, medications can interact and it can change your behavior.. in some cases to the point that you might not realize just how much it has changed your daily life. Why don't you make an appointment with your pain doc, bring your husband so that he can share his concerns, and just take a relook at the pain care plan. Sounds like some readjustments might be necessary or welcome.

        Also... honestly... wine should be off your plate entirely when you're using meds. I think that's really risky.

        Big hugs!!!! - Jill
        Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

        Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

        Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






        Comment


        • #5
          Thanks for your wisdom. My therapist and I have worked this out today and it's off the table as discussion in our sessions as she is not the expert. I am glad about this. It was not the point of going to see her for marriage counseling anyway. Thank you for the support. We'll see what happens when my appointment with my pain doc comes up next week.


          Love and Hugs to all of you and HAPPY NEW YEAR!!!

          Kara
          Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

          "One hour at a time, this was NOT my American Dream but it has to work out somehow."

          I also have some journals of my journeys, past and some present at:
          http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

          Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

          Comment


          • #6
            A lot of the same things happen to me, but luckily my husband understands.
            I do agree with Jill about the wine though-shouldn't be drinking it with pain meds (don't know if you are). I am also surprised that you can drink it at all-it is one of the things that I had to give up right away; I can't tolerate it at all any more...Boo!

            Comment


            • #7
              Sorry this was so long!


              Hello, Kara! I am so glad to see you on here. I haven't seen you here in a long time. I am sorry it is under these circumstances and also sorry to hear about your marital problems. Chronic health problems are very hard on most relationships, especially marriages. I know that my own health issues have certainly taken a toll on mine!

              To answer your questions, in regards to your falling asleep watching tv and while online, I do those two pretty often too. In fact, I fall asleep every night with the tv on, (and even did this prior to taking ANY kind of meds!) I didnt have a computer prior to taking meds, but probobly would have fallen asleep while online back then too. I think this is mostly because, (like most ICers), my combination of my bedtime meds are considerably stronger than my daytime meds. I take the ones that are only taken once per day at bedtime due to the side effects of causing drowsiness. For example, I take Seroquel off-label as a sleep med, and I take this at bedtime. It seems to hit me all at once and the tv is always on and more often than not, I am online when this happens. So no, I don't find it unusual at all that you also fall asleep at those times.

              As for your falling asleep while eating sometimes, I am willing to bet that is either b/c you are overtired like you described or it is because you are eating dinner late and have already taken your bedtime meds. (You are probobly eating that late b/c your husband brought dinner home after he got off work and then he got home late. (Just making an educated guess about this one.) If that IS the case, it would probobly be better if you went ahead and ate earlier in the evening. (Then, if he brings home dinner, you can always have it for lunch the next day.

              As for the "mumbling" to yourself when overtired, I think ANYONE (whether medicated or not) would act in a bizzare manner if they were severely sleep deprived (as you state you were during the incidents in question.) Occasionally, I get in a bad pain cycle (or have a bad infection, flare or something), then I can't sleep. Sometimes, (like you), I cant sleep even for 2-3 days. Also, frequently during these episodes, I lose my appetite too. And yes, my family has also told me I was acting "weird" on those days, doing things that weren't typical for me (such as sleepwalking after I finally DID get some sleep, and talking in my sleep, muttering incoherantly, etc My theory is that the meds werent as diluted as normal b/c I barely eat (if at all) when I get that sick. Also, numerous studies on sleep deprivation have been by the military that show that soldiers who didnt sleep for 2-3 days ALSO acted just like I described and just as your husband described you.

              So, I truly believe you are dealing with two different things, the effects of taking your bedtime meds and then staying awake (often forcing your body to stay up b/c you want to do something online or finish watching a tv show. Then I think the muttering and acting strange is from the sleep deprivation.

              Here's a few ideas that might help: For the falling asleep online or watching tv, if this is a problem with your husband, dont get online after you take your meds or watch tv. You might consider taking the tv out of your bedroom and putting it in the guest room and reading a book or something instead or just laying there talking and cuddling in the dark.

              As for the sleep deprivation thing, wish I knew how to fix this one (if yours is for the same reasons as mine!) However if you just need a something different to help you sleep, I would definately talk to your Dr. about it and see if you have tried everything already or if there is anything new you could try. (If you've already tried everything, you might consider trying something off-label like I have been doing with the Seroquel.) I don't take it every night, but I have been using it for at least a year, but it is still just as effective.Whereas the actual sleep meds I tried seemed to quit working after a while for me, (even though I wasn't taking them daily, but only like 1-3 times weekly.

              Regarding the wine, while I understand that since you have had your bladder removed, you dont neccessarily have the same negative response to it that most ICers do, I still agree with the others that is definately not a good idea to drink anything with alcohol in it while on any kind of medication, but especially pain meds due to the possiblity of not only nasty side effects, but also the possibilty of a lethal interaction! I don't want to come on here one day and read one of those "Sad News" threads about you and read that you died!

              As for your therapist, while I do think it is a good idea to see one to work on your marriage, I am glad that she realizes that she is not knowledgable enough about pain management to comment on that aspect of things and that she is deferential to your pain Dr.

              Lastly, in regards to your next visit to your Pain Doctor, I must respectfully disagree with the others.....I don't think it is a good idea to bring your husband to the visit while he is so oppositional and judgemental regarding your pain meds. I think that is asking for trouble. I say that b/c he wouldnt mention the specific circumstances behind your actions, (such as being exceptionally overtired by not sleeping for 2 or 3 days due to being sick or the falling asleep after taking your bedtime meds yet forcing yourself to stay awake b/c you wanted to finish watching a tv program, etc.) Instead, he would just say you fall asleep watching tv and online all the time and then periodically walk around in a stupor and are incoherrant muttering to yourself, saying things out of context. If he (or your therapist) mentioned those things to your Dr. without hearing the context in which you did those things, well, as you know, it would sound pretty bad. And minimally, they are probobly going to think you are overmedicated.

              Personally, I would try the aforementioned suggestions first, and see if it helps. If they dont help, then I would mention things to the Dr. at the next visit, (while you are still alone, so that you you alone are explaining things. THAT WAY, your Dr. hears from you in exactly what context those events occured.)

              I just fear if your husband (who you think is considering divorce) talks to your PAin Dr. with both guns blazing, that it could be a bad thing for you.

              But, as you know, the above info is only my opinion from one IC patient to another. I am no medical expert. Only you and your Dr(s), should make decisions for your healthcare.

              Sorry this was so long! I hope that you and your husband can work things out. I also hope that you end up making the best decision for you for your overall health and wellbeing.

              Sending hugs and well wishes,
              Amaranthe

              P.S. I realize I am out there by myself with my opionion about not involving your DH w/ your PM Dr. at this time. I realize I may be wrong about my opinion on this. But, I really do think that his involvement right now could jeopardize your care and even possibly result in your being dropped by your PM Dr. or minimally cause him to drastically decrease your pain meds. JMHO!
              Last edited by amaranthe; 01-06-2011, 06:02 PM. Reason: added something
              I am not a medical professional. I do not give medical advice. In all cases, I urge you to talk to your Dr. about your treatment options.

              D/Xed 2003 with IC. Also have the co-existing condtions of VV, Vulvadynia, Lupus, Fibro, GERD, CPP, Endo, & Adhesions, and Depression

              Meds: Estrogel (due to total Hyster)
              The meds r/xed by my Pain Dr. from the Pain Clinic are as follows: Morphine ER and IR, Baclofen, and Lyrica and Seroquel (used off-label as a sleeping pill, but it also helps with depression)


              (I listed my meds in case someone reading this has been told like so many ICers that Drs dont r/x pain meds for IC.) I want you to know that there ARE tons of us who are also dealing w/this disease and the pain and many of us ARE on pain meds.)


              John 3:16 For God so loved the world that he gave his only begotten son, that whoever believes in him shall not perish but have everlasting life.

              Comment


              • #8
                It can be very important for your husband to hear what your pain management doctor has to say. Yes, you may need to make some medication changes, but that could be a good thing. My husband and I go together to all of our medical appointments so we both hear the reports and both know what's going on.

                Warm hugs,
                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

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