SOD Medication Talk

Hello All, please feel free to use this blog to discuss medications that have or have not worked for you.

Thanks,
Administrator
www.thesphincterofoddi.com

PS - Leave a comment to respond to this blog!

 
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  • 3/15/2011 3:42 PM Administrator wrote:
    Amitriptyline (5.20.2010 - Currently prescribed at 25mg's every other day or as needed)
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  • 3/16/2011 12:11 PM felicia wrote:
    Amitriptyline - 25mg at night, did not work
    Toprol XL 25mg - once a day did not work
    Nitro Stat .04 - worked a few days then stopped
    Nitro Patch- worse experience ever
    Levisin- didnt work
    Bentyl- 4 times a day did not work

    Someone please help me is there any other medications I do not want any more procedures or surgeries.
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    1. 3/17/2011 7:56 AM Administrator wrote:
      Did you review this blog. It has ALOT of information in it: http://blog.thesphincterofoddi.com/2009/06/15/welcome.aspx#Comment

      Also, this medication was said to provide some relief: reflaxmine
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      1. 3/17/2011 8:44 AM felicia wrote:
        Thank you. Yes your blog has helped me greatly. I hope your wife is doing well.
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  • 3/16/2011 12:25 PM felicia wrote:
    I forgot to add Noritryptline 25 mg at bed time, which also didnt work.
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  • 3/18/2011 11:10 AM Kris wrote:
    Amitriptyline - 25mg once/night at bedtime - made me too doped up.
    Nortriptyline - 10mg once/night at bedtime - worked for a few weeks, but seemed to 'wear off', now trying 20mg once/night.
    Bentyl - up to 4x/day, when symptomatic, does seem to help a little
    Various PPIs, didn't seem to help at all
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  • 3/30/2011 4:49 PM Maryanne wrote:
    My list of tried meds is way too long, I seem to be very sensitive to drugs and my reactions have been fierce. At the moment I am trying Amitriptalyne (40 mg) per day but I dontbthink it will work. I have tried some many things and nothing works. My narcotic levels are higher than I even thought possible and I live in me chair or bed everyday despite all I want to do is play with my 3 and 4 year olds (currently we live withnmy parents so my husband can work). I have had the procedures and I have tried the drugs. I have messed with my diet and still I don't know what to do anymore. Does anyone have any ideas.
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  • 6/21/2011 9:43 PM Maryanne wrote:
    I am writing to see if ANYONE has tried Nifedipine ER (calcium blocker)? I am starting it today because my SOD has increased to my esophagus and my Doc said this is what they treat it with. I know this type of drug is widely used to treat SOD and after 18 months of non stop, daily pain and nausea, I was kind of hoping this might help. Of course, the same research also said they were no too effective but I am desperate!

    Also, anyone have any experience with the Fyntanal Patches for pain. I have been on since September but am working hard to get off them. I feel I should warn my fellow SOD suffers since the patch can cause SOD symptoms and should probably be avoided! Hard to get off of it too, I am in withdrawal he'll this past 2 months!
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  • 7/5/2011 4:20 PM BOB wrote:
    THERE IS NO MEDICINE FOR SOD, DAVACET WORKED NOW IT'S GONE. I HAVE TRIED EVERYTHING NOTHING WORKS THEY CAN'T FIX IT. THERE ARE OVER ONE MILLION PEOPLE OUT THERE WITH PROBLEM THIS HAS BEEN GOING ON FOR TWENTY YEARS. THEY NEED TO MAKE US A DRUG THAT REALAXES THE SPHINCTER AND DOSE NOT UPSET THE STOMACH. IN MOST CASES THEY WILL NOT EVEN ADMIT THAT THERE IS A PROBLEM.
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  • 7/15/2011 12:11 PM BOB wrote:
    MY DOCTOR PERSCRIBED CALCIUM CHANNEL BLOCKERS. THEY SEEMED TO HELP FOR ABOUT A WEEK AND THEN THEY QUIT. NOW MY SOD IS WORSE THEN WHAT IT WAS I AM GETTING TO MUCH BILE IN MY STOMACH AND I AM HAVING SEVERE STOMACH PAIN. I HAVE BEEN BATTLELING SOD FOR ALLMOST TWENTY YEARS AND I WON,T GIVE IN TO THIS HIDEOUS SPHINCTER DYSFUNCTION THAT NO ONE SEEMS TO WANT TO HELP US WITH.
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  • 8/10/2011 8:26 PM Maryanne wrote:
    I just wanted to remind everyone suffering from SOD to have their thyroid levels checked. As I have become sicker and sicker with SOD and no treatment has helped, my doctor and I have been unable to stop a major drop in thyroxine. There is probably a good connection between SOD and hyperthyroid disorder, especially since there is a link between common bile duct disorders and hyperthyroid disorder. The few people I have met with this condition all seem to have it. Even if the SOD isn't because of thyroid problems, it exacerbate your symptoms!
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  • 3/4/2012 7:13 AM Steve B Aus wrote:
    I don't use drugs, nothing works.

    In my case I have used the two methods:

    1. Lift the head of the bed up 6" your gall bladder will drain naturally...(Works for me)

    2. I have found my trigger is SUGAR seeing as the gall bladder has something to do with sugar, I'm surprised this took me 2 years to figure out. i avoid anything more than 1/4 teaspoon of sugar. The pain will hit me in about 30 - 45 mins in URQ.

    MY CURE --Gaviscon with Aniseed TWO BIG MOUTHFULS and within 10 mins the pain dies down to about a "2" which is as good as it gets....dont why it works, I have tried all the other stomach stuff but the Gavison, that puts a layer in your stomach, settles my pain in the URQ.

    Try it for your self!!
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  • 3/13/2012 3:05 PM LOUIS wrote:
    IF ANY ONE WOULD LIKE TO KNOW HOW I AM CONTROLLING MY SPHINCTER OF ODDI DYSFUNCTION, GO TO THE (PANCREAS TOMORRO) WEB SITE AND SCROLL DOWN TO COMMENT 33 AND I DETAIL MY SYSTEM ON HOW I CONTROLL MY SPHINCTER OF ODDI DYSFUNCTION. FOLLOW IT TO A~ T~ IT WORKS FOR ME, I BLOG UNDER MY NIC NAME BOB.
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  • 3/17/2012 7:03 AM LOUIS wrote:
    CONSTIPATION, I BECAME CONSTIPATED WHEN I STARTED TAKING PAIN MEDICATION TO HELP CONTROL MY SPHINCTER OF ODDI DYSFUNCTION. IT'S VERY IMPORTANT THAT WE MOVE OUR BOWLS EVERYDAY. SOMETIMES I WOULD NOT GO FOR TWO OR THREE DAYS. I WOULD STRAIN SO HARD WHEN TRYING TO HAVE A BOWL MOVEMENT THAT I STARTED TO BLEED AND MY STOMACK WOULD GET ROCK HARD AND HURT. I TRIED EVERY REMEDY I COULD FIND THE OVER THE COUNTER CONSTIPATION MEDS MADE MY STOMACH HURT WORSE.I WAS CONSTIPATED FOR SIX MONTHS. AND THEN ONE DAY I STUMBLED ON AN HERB CALLED (CASCARA SAGRADA) GUESS WHAT IT WORKED FOR ME. I TAKE ONE CAPSULE TWICE A WEEK LIKE EVERY THREE DAYS I TAKE ONE CAPSULE AT NIGHT BEFORE BED AND IN THE MORNING I DRINK A CUP OF HOT WATER,THIS HAS BEEN WORKING FOR ME NOW FOR TWO MONTHS. I ALLSO TRY AND EAT FIBER AND SOME TYPE OF FRUIT THAT WON'T HURT MAKE MY SPHINCTER MUSCLE HURT LIKE OVER RIPENED BANANAS.I BOUGHT MY BOTTLE OF (CASCARA SAGRADA AT WALMART FOR FIVE DOLLARS IN THE VITAMIN ISLE,MADE BY SPRING VALLEY.
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  • 3/19/2012 6:24 PM LOUIS wrote:
    IF ANYONE IS INTERESTED IN READING HOW I AM CONTROLLING MY SPHINCTER OF ODDI PAIN NOW FOR EIGHT MONTHS. JUST SEARCH, HOW I CONTROL MY SPHINCTER OF ODDI DYSFUNTION. FOLLOW IT TO A~T~IT WORKS FOR ME. GOOD LUCK
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    1. 4/29/2012 8:16 PM Debbie Baker wrote:
      I can not find this on the website. My mom is 76 yo had gallbladder removed and still has no relief from pain. she is slowly dying and no one will help her.
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      1. 5/1/2012 9:27 AM LOUIS wrote:
        TYPE, HOW I CONTROL MY SOD PAIN INTO YOUR SEARCH BOX AND LEAVE SPACES IN BETWEEN THE WORDS AS I HAVE AND THAT WILL GET YOU TO THE SITE.
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      2. 3/12/2013 3:01 AM Adrienne wrote:
        I'm so sorry to hear about your mom, this was me 7 years ago before my diagnoses. I had my gull bladed remover which you will find out later can increase the pain and make your SOD worse but Dr's assuming it's a simpler problem than it is assume its the GB because when they do a test to check the functioning levels there low, but there low because of the blockages above them in the bile and pancreatic ducts and have nothing to do with the GB which is sad because it then just makes things worse. This was me (your situation with your grandma) 7 years ago, I was down to 80 lbs, I couldn't eat, drink and was just in horrible pain and nonstop vomiting up bile. I had Dr's say it was all in my head, that they fixed the problem, it was just stress, you name it they said it. Thank God I finally got a referral to a specialist in Seattle, WA at Virgina Mason, he's now at Swiss medical and performs my ERCP's and saved my life and continues to to this dare. If I hadn't seen him, gotten the correct diagnoses I would have died no question. It's still a struggle and constant battle for my life but at least I know what's wrong with me now and I will continue to do everything I can to stay here and be with my husband and our three small children.
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  • 4/19/2012 8:44 AM highcountry wrote:
    Thank you in advance for any suggestions you might have. I am looking for medication that can help with the overwhelming nausea that I get. What have you taken that helps with this?

    Secondly, what do most of you take for the pain?

    My pain includes a burning stomach along with the gall bladder area pain. It often feels like a tight belt is squeezing all the way around my rib cage.
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    1. 3/13/2013 2:13 AM Adrienne wrote:
      The best thing I've found for nausea and believe me I've tried everything is dissolvable Zofran. Its great because I don't have to swallow it and can take 8mg at a time, this works great bevause most of the problem when is I can't keep a nausea meds down then I vomit them up which
      perpetuates the horrible SOD pain. I can't take several other nausea medicines which I've heard are better because I've had extreme allergic reactions to them such as phenergan, 
      Inapsine, Ativan, Compazime so if your not maybe one will work better for you.
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  • 5/1/2012 11:11 AM Denise wrote:
    Hi Louis. A while back you had mentioned that you had a way of taking vicodin or any other morphine based pain killer without it causing spasm to the sphincter of oddi. My doctor prescribed Norco as the latest thing to try and help. I just took it and had a pretty bad spasm. It seems so hard to try and find something to take that doesn't make things worse. I was just wondering what your trick was. I will try anything. Thanks!
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    1. 5/2/2012 7:03 AM LOUIS wrote:
      HELLOW DENISE, I TO HAD A PROBLEM WITH VICODINE AND THE OTHER PAIN MEDS. WHEN I TOOK IT IN THE MOURNING IT ALLSO MADE MY SPHINCTER MUSCLE SPASM AND UPSET MY STOMACK. I EVEN STOPPED USING THEM FOR A WHILE. THATS WHY I START MY DAY OFF WITH TYLENOL AND NO FOOD JUST CRACKERS. READ MY SYSTEM I HAVE BEEN CONTROLING MY PAIN NOW FOR NINE MONTHS I HAVE DETAILED WHAT I HAVE TO DO. DON'T LEAVE ANYTHING OUT. I AM TAKING LORTAB NOW AND A LITTLE NORCO.I EAT LOTS OF CRACKERS WITH MY MEDS. TYPE HOW I CONTROL MY SOD PAIN INTO YOU SEARCT BOX LEAVE SPACES BETWEEN THE WORDS THIS WILL GET YOU TO THE SITE. THE PROTON PUMP INHIBITOR IS A MUST. GOOD LUCK
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  • 7/14/2012 2:38 AM Laura wrote:
    Creon (pancreatic enzymes x 24,000 units) helps a LOT with the nausea of SOD, especially after eating.
    Cymbalta has also helped me with chronic pain management, especially since it's a non-narcotic. It definitely doesn't take away the daily pain, but it helps a good deal.
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    1. 3/13/2013 2:23 AM Adrienne wrote:
      Laura, I agree virtually the only relief I get is from the Creon I take three times a day. It helps with the nausea and therefor the pain when I eat. Also Zofran for nausea I take round the clock. I have heard great things about Cymbalta and SOD patients I haven't been prescribed it but after getting my diagnoses 7 years ago I'm finely getting an appointment at a pain management clinic- thank God! I'm just so hopeful to get on some pain preventatives and not just have doctors throw pain meds at me I don't want to take, nor do they help. Wish me luck!
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  • 3/5/2013 9:46 AM LOUIS wrote:
    I JUST ADDED CLONAZEPAM 0.5MG TABS A COUPLE TIMES A WEEK TO MY FIGHT AGAINST SPHINCTER OF ODDI DYSFUNCTION PAIN. THIS MEDICATION WORKS QUITE WELL FOR ME . IT HELPS TO RELAX THE SPHINCTER MUSCLE AND DOESN'T UPSET MY STOMACH AS LONG AS I ONLY TAKE IT A FEW TIMES A WEEK.
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  • 3/12/2013 2:47 AM Adrienne wrote:
    I have tried several different medications temporally over the last 7 years while my SOD has been it's worst in and out of ERCP's (8 at this point), which included a bowel perforation, balloon dilation, scare tissue removal, stent placement, metal tube placement in both the bile and pancreatic duct. I'm currently recovering from my most recent procedure with metal stent tube placement in both ducts for the second time, they have me on a low dose 25 mg patch Fentanyl, every 3 days, then hydromorphone up to 8mg every 6 hrs, and creon that I take with any meal and/or beverage considering I have days I can't eat a thing, I also take pepcid. Again the issue here is the only thing I've found that makes a noticeable difference is the creon that gives my pancreas a break when I eat something, and Valium which was completely surprising to me. I told my specialist this and his said there is no evidence to support that valuim should help, but it could by possibly the relaxing of muscles but that he has had several patients that have gained relief when taking valium during their SOD attacks. I have a hard 
    time forcing myself to take or be consistent with pain killers that don't help anyways, I eat 
    consistently nonfat to very low fat (maybe 2gm on a good day), I don't drink or smoke and I don't touch anything that could be risky such as pop, nuts, popcorn, grains, gum, berries, oranges, anything acidic or hard to digest. My best friends when I have my bad attacks are my anti nausea medicine, heating pad and a bowl (to puke in). I wish I could help more and am open to ANY suggestions on anything you'all have found that helps.
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  • 4/2/2013 12:01 PM Sally wrote:
    Hyoscyamine under the tongue, at first sign of an attack, works sometimes.
    Creon and Methscopolamine BR did not work at all and both made me very ill.
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