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  • RAS6
    replied
    Still not getting relief....

    Sorry I didn't update yesterday! I found out that 50 Nortiptyline is too many! I didn't wake up untill 11:00am yesterday! Thankfully my husband is working the 2nd shift all week and was home to hold down the fort. Last night I took 4 and found that I felt a little less zonked out this morning.
    To asnwer Briza's ?: I haven't picked up my new dosage yet b/c I still have ebough left here at the house and I was not comfortable driving the way I felt yesterday and today. I am going to get it tomorrow and I will let you know the exact dosage. I'll read it right from the label on the bottle when I type it. Unfortunately the double dose of Viacadin didn't do much besides make me REALLY loopy. I woke up last night an hour after taking 2 of the 5/500 tablets to find I had strong pain, but was very dizzy and felt almost like I did right after having anethesia, or a very rough night out partying (which I do not do anymore for that reason!) I stumbled to the toilet, but didn't dare try to get down stairs for my relaxation CD. My Husband got home soon and rubbed my back so I could fall asleep. Is it possible to feel wierd, like maybe this was too much medicine, but still not get pain relief? Today the pain has subsided alot and my frequency has decreased, so I am hoping the flare is almost over. I stopped the Depo shot and after 6 weeks with a constant period that seems to be gone now too for now. I still have pain this evening, but one vicadin every four hours has made it possible for me to do light housework and get out of bed. It just wasn't enough when the pain got really bad. For some reason it happens at night the most. Like I have said before, I am just hanging in there until my appointment on the 25th. Then I can at the very least get a refferal to the pain Doctor.
    QUESTION:
    Do any of you have pain that feels tingly almost the way your foot feels when it falls asleep but painful and in your vagina, and urethra and even in the tissue and skin aroundthat area? This has been happening lately and is new to me. Nothing makes it go away and it is driving me nuts! I am worried that maybe something else is wrong with me now. My Ob/Gyn and the IC specialist checked me for Vulvadyna and neither one thinks I have it. I have been learning more about PFD since my diagnosis, but I hadn't heard anyone complain about pain or sensations like this ( I might have missed a post though). I may post this question in a different thread just to get the attention of more PFD patients.
    Thanks everyone for your help!
    Last edited by RAS6; 04-11-2007, 10:32 AM. Reason: spelling, as usual

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  • Briza
    replied
    Hi Rachel
    Let me know how it goes with the 10mg Vicoden. I hope you're feeling better with the increased dose. I have my 2nd appt April 20 with pain dr and would like to have something stronger than the 7.5 mg...maybe I wouldn't have to take as many pills if I had something stronger. I'm taking 2 every 8 hrs, but the pain comes back after about 4 hrs. With your new prescription, how often and how many tabs does it say you can take? Thanks!

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  • RAS6
    replied
    Originally posted by Babs RN View Post
    I'm glad that the NP was willing to call stuff in for you. Darvocet and Tylenol 4 are actually not as strong as Vicodin so maybe now would be a good time to see a pain management doctor to get out of the vicious pain cycle.

    Hugs,
    Barb
    Thanks BabsRN. My Doctor wants to try Valium everyday with Vicadin as needed. He has mentioned starting me on anti seizure drugs as well to help with the spasms that NEVER seem to stop! He said that if we needed to go on to Percocet or other stronger pain pills or even pain shots he would have me see the pain Doctor the next door down at least once and he would work along with him. It is a teaching hostpital and there are hundreds or Doctor's offices there. My Uro works with this Doctor all the time and says heis very nice. So if I need to go there I will. In the mean time I have to hang in there for my next appointmen on the 25th. That's only a few weeks away. In fact, that has becaome my mantra of sorts during lots of pain. "Only two more weeks!" I am very glad I called though. It was nice to be helped and treated with respect and compassion for once! they have been great to me so far...

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  • RAS6
    replied
    Originally posted by Briza
    I've heard that, too. I'm wondering, Rachel, did you say 25 or 2.5mg? When I was Rxed the Lortab 7.5, they offered to call it in for me, but I asked for a written Rx, because my pharmacy fills drop off prescriptions faster than call-ins..
    Sorry Briza, I just didn't understand the dosages! I appreciate you all educating me!
    I was told to take 2 of the 500mgs/5mgs at a time until I can pick up my 500mgs/10mgs pills tomorrow at the pharmacy. That's what I meant. I thought it sounded like an awful lot and I did ask if it would cause breathing difficulties (the warning label on my bottle says not to take more than recomended b/c of possible breathing problems) She said she has 80 year old ladies taking this much and they have been fine! So we'll see. I haven't done it yet, I just want to be sure I will be ok and my husband isn't home yet. I haven't even been able to let him know that they upped my dosage and I don't want to take the higher dosae until he is home and knows, justin case I do have an issue. It sounds silly, but I am home alone out in the middle of no where with my 2 little girls. I like to be careful when getting used to new doaseges. I did just take the 50 mgs of Nortriptyline though. Hopefully that will take the edge off until he gets home! The pain tends to be at it's worse when I lie down to go to sleep anyways!

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  • dancemomof2
    replied
    When I worked in the Dr office the rule of thumb if it can be verbally called in to a pharmacy and no written scipt needed it was a mild pain reliever. Just a note from my little brain.

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  • Babs RN
    replied
    I'm glad that the NP was willing to call stuff in for you. Darvocet and Tylenol 4 are actually not as strong as Vicodin so maybe now would be a good time to see a pain management doctor to get out of the vicious pain cycle.

    Hugs,
    Barb

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  • RAS6
    replied
    Got some help...

    Well, the NP called me back and was much more helpful than I expected. She wants me to up my Nortriptyline to 50 at night and she called me in more vicadin, she wants me to take 2 5mgs every four hours if needed. (I didn't understand the dosage, I thought they were 500mgs each from reading the bottle! LOL!) I am worried the Vicadin won't do much, even at higher doses, but it is a start. She said if I need anything else before my appointment to call back. She didn't give me a hard time at all, or treat me like a suspect which I very much appreciate. This office is so different than the other ones, I am having a hard time getting used to everyone knowing so much about IC. She didn't insist I get The only probelm was by the time she called me, my pharmacy was closing in half an hour. I have enough meds to get through tonight though, so it isn't a huge deal. Thanks everyone for your support. I feel like no one else understands sometimes. This disease has been so disabling for me and I don't leave the house much anymore. Our trip was fun, but I know I over did it. It just felt so good to be able to do semi-normal things again!
    I'll keep you updated. Thanks!

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  • ABliske
    replied
    I know what you mean about the vicatin being useless. Don't try taking any more than you are prescribed though. Sadly, if the right dose isn't working, upping the dosage probably won't help either. At least, for me it didn't. I tried that once because I was in horrible pain and it still didn't help. Now, I'm taking MS Contin, which makes me very tired, but is worth it.

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  • IC SARAH-CPP
    replied
    I know it is hard to trust a doc after you have been through the wringer with so many other ones, but he sounds like he will help you. I know it is hard but I would stay on the messages, like keep calling if they dont call after lunch and especially if they dont call before the end of the day.
    Sadly, the same thing happened with me and the vicodin. I took it on and off for almost 2 years and by that time, it just didn't work at all for me. They even upped it so I was taking the 10 mg pills and those still didn't work. I feel kinda embarrassed now when someone says "Oh I am taking vicodin and they just knock me out, etc. and I am thinking, gosh it doesnt do anything for me!" But tolerance happens to most people.
    Hang in there! We are here to listen anytime you need to vent.
    Love Sarah

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  • RAS6
    replied
    Waiting and in pain....

    I was able to leave a message for my Urologist's NP but it has been 3 hours now and I haven't heard anything. I know it can take time, I am just so sick of the pain. It was so bad last night even after 3 Nortrityline's and a Vicadin that I just lay awake crying for an hour. The Vicadin is basically useless now. It doesn't do anything! I might as well be taking a baby asprin! I am doing all the home remedies I can think of that work for me: heating pads, hot baths, relaxation and imagery CD, lying on my side (sitting and standing are making it worse) but the awful sharp pain and burning behind my pubic bone is getting worse, especially at night. I have had pain in that area before, but never like this. The pain in my Urethra and vagina is awful now too. Even my lidocain/prilocain cream that usually completly numbs the area isn't helping much. Plus I have both my girls here today all day b/c of spring break at my oldest's school (they are 2 and 7)and my husband is working adouble shift (10am untill 11 pm) so I am all alone and completely beat. In the mean time I am so worried I won't get help and will have to be like this until my appointment in 3 weeks. To be honest, I won't be able to drive the hour and a half to see the Doctor if I am like this! I need to trust this Doctor, I just have only seen him once and am worried he'll be like all the others and be nasty and suspicious as soon as I ask for more help with the pain. That visit was amazing though, he talked to me for a long time and gave me lots of treament options to try in the future if needed. He also asked if I needed more Vicadin and told me to call if I had any pain issues. So, I need to stop reliving past experiences with other Doctors and hang in there until someone gets back to me. I am just so tired and frustrated with having to live like this!
    Thanks for listening!

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  • RAS6
    replied
    Didn't get anywhere...

    Well, I tried to get ahold of my Doctor today, but they were closed for Good Friday. I am feeling about the same tonight, not out of my mind with pain or anything, but very VERY uncomfortable even though I have taken Vicadin around the clock today. I am just trying to do my relaxation stuff and be good to myself tonight! That means no lifting, taking a hot bath tonight, using my seat cushion, and probably getting a ride with my Dad to my grandmother's tomorrow instead of trying to drive my little girls there myself. For some reason I can handle riding in a car for over an hour, but driving there myself is excrutiating! Does that trigger anyone else? Plus we have tons of snow here and I get worse when I am stressed! For me stress, extra physical activity, and driving tend to be the worst pain triggers, even more so than cheating on the IC diet! (Which I won't do anyways!)
    So hopefully I can hang in there until Monday when I can call my Doctor. I am just praying he won't make me wait until the 25th! I am getting so worn out from the pain. It gets to me after awhile! It is hard to keep up with all the chores around here plus take care of my 2 year old. My 7 year old is home from school all next week and will get VERY wound up if we are stuck at home the whole time! Plus I am taking extra hours at my PT job b/c we need the money and I don't want to have to call in. Even if he can just call me in a few pills until I see him again or go to the pain Doctor I will be happy. I just get nervous b/c of the way I have been treated before. Thankfully this Doctor does understand IC better than any of the other Doctors I saw and he was the one who brought up pain med options at my last visit! Thanks for all the encouragement and kind words!

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  • RAS6
    replied
    buspar

    Originally posted by Briza
    Oh, I am also taking Buspar 15mg morning and night for anxiety for about a month. I haven't noticed much difference, have you?
    I have been taking it for over a year now. I actually can only handle it at night time because it works too good! I get really dizzy on it, so I wait until about 5 minutes before I go to bed to take the full 15 mgs. It hleps my mind "quiet down" and stop worrying so I can go to sleep and I very rarely wake up with panic attacks any more. My older sister was on it for a few weeks and saw no difference at all, she had a panic attack while on Buspar that was so bad she ended up in the hospital! She is now taking Zanax at night time and no lnonger has panic attacks that I am aware of. If you are taking the max of Buspar and not feeling any better, I would definately recommend talking to your doctor about trying something else. Buspar worked almost immediately for me. Thanks for the tips on Valium! I was a little nervous about it at first, but I have heard that it is not as scary as it sounds. I read about it in the "IC Survival Guide" and found out it would only be low doses (like you were on) and that at low doses getting "high" is not an issue, and chances are very slim for addiction. I was a Psych major and I had heard alot about patients becoming addicted to Valium. I just didn't understnad the dosage for pain pateints. Because Ihave IC and PFD, I hope it will work for me too.

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  • sweetpea_ae
    replied
    I have the same issue with the pain meds. Although the diagnosis is fairly new, my symptoms and pain have been ongoing for 12 or 13 yrs. I am currently on lortab 7.5 and it doesn't even touch the pain. I am also on Elmiron, macrobid, and pyridium. I will be calling the doc tomorrow to try and get something for pain. I felt guilty as well at first about the pain meds but I have come to realize that I am very interested in living life and without out my quality of life is much much worse. The thing is I feel drs experience people who are "seeking" that they become a little jaded and are apprehensive and sometimes unable to treat an individual without being judgemental. It all boils down to poor education and understanding of this condition. It is however very disheartning that you feel like drs look down on you. Having this condition is already very demeaning mentally and they can make it worse.

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  • leelee88
    replied
    I hope you do to.. I was in alot of pain last night. but I think it was due to stress, because I feel better today... I just hope you find something that works..

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  • RAS6
    replied
    Thanks Ronda! I did try Elavil, but was practically comotose the next day on only 20mgs and that was when I took them at 7:00 pm the night before. Plus I ate non-stop after taking it. I have been on Nortriptyline since February and it does help with my pain, but not like Elavil. It helps me sleep, but I still get up 3 to 4 times at night (still better than the 6 to 8 without it!) I took all 30 mgs tonight with a pain killer (that was three hours ago) and am feeling WORSE now than I did then! I am going to go do my relaxation cd and take a hot bath and hope I can get some relief and sleep tonight.

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