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Sphincter of Oddi Dysfunction

Posted , 61 users are following.

hazel5
hazel5

I was struggling with Sphincter of Oddi Dysfunction but feeling it was not worth the risk of pancreatitis to go ahead with the endoscopic sphincterotomy and would like to share my success using self-administered acupuncture.

My SOD had two pain styles. My daily pain is very successfully managed (99% pain free days) using 30mg amitriptyline each night and 10mg Buscopan 3xdaily. Before drugs my daily pain was so bad that I was hardly eating - not a long term strategy.

I also get (used to get) episodic severe night time pain attacks. The upper gastric / chest area pain is extreme (as you'll know if you have SOD) and I used to take 20mg oxycodone. Each morning after an attack I woke with migraine, vomiting and general weakness, needed a day in bed. These night time attacks became worse and more frequent until I started acupuncture.

A GP friend taught me to do acupuncture to myself, the most useful points are GB34 and LR3. I do electro-acupunture weekly as a preventative measure, since March 2012. My night time attacks are now infrequent, very mild indeed, and I can stop them by using manual needling in GB34 only. I don't even have to get out of bed, go straight back to sleep and can get up and go to work as usual in the morning.

This has transformed my experience of this horrible condition.

Happy to discuss further with fellow sufferers or medics. Planning to present a paper at an acupuncture conference soon

11 likes, 149 replies

149 Replies

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  • heidi34
    heidi34

    Edited

    I would really love to hear more about this. I am really suffering daily with SOD and I am willing to try anything. Thank you so much!
  • hazel5
    hazel5

    Posted

    Hi Heidi

    as mentioned in a private note, for my daily pain I take Amitriptyline 30mg. This medicine is very good for managing chronic pain. I'm afraid the acupuncture has not helped with the daily pain. When I reduced my dose of Amitriptilyine very slightly, the daily pain returned after a week of lower dose so I returned to 30mg daily.

    good luck,

    Hazel

  • jane40765
    jane40765

    Posted

    Hi everyone

    I am new to this forum. After nearly three years of battling with Doctors and consultants, I have been diagnosed with SOD type 3, but all to no avail as I have been told there is nothing that can be done and no specific medication for it.I do have other digestive problems one being oesphagitis which I take acid suppressants for. I am sure that these make SOD worse as before I started on them it wasn't as bad. I have pain everyday varying in severety.

    Does anyone else take acid suppressants.

    • marissa12
      marissa12 jane40765

      Posted

      Hi can I ask how you got this diagnosis? I've been struggling with upper abdominal pain for 3 1/2 years with no definate diagnosis at a scan last week gallstones were found for the second time but they are unsure if the gallstones are causing the pain. It is so distressing. SOD was something I said to my GP and they said it was possible but that's as far as it went . I have chronic pain but get flare ups regularly I've no life because of it and have also had to give up work. Any help would be much appreciated x
  • jean09792
    jean09792

    Posted

    Hi there

    Following a severe attack of pancreatitis 18 months ago, I was diagnosed with "likely" SOD. Had no real

    problems until a couple of months ago. Now experiencing severe upper right quadrant pain, particularly

    at night, nausea etc, usually followed by stomach cramps and a dose of the runs.

    Seems to be particularly bad after eating cheese or chocolate, so have now cut these out of my diet -

    seems coffee, cheese, chocolate and alcohol can cause these problems..........as a vegetarian, cutting

    cheese is causing me real problems. I also have irritable bowel, and acid reflux, for which I take 30mg

    Lanzaprozole and 300mg Ranitidine daily. Does Amitriptyline work? Worth trying? Is it compatible with my other medications? I am really struggling with this condition and my GP doesn't have a good

    knowledge of it....would be grateful for any suggestions, other experiences, recommendations etc.

  • cata89
    cata89 hazel5

    Posted

    thanks for this information. I have just seen my gastroentorologist, in the process of confirming diagnosis for this horrible condition.  Nice to know there is hope!
  • marissa12
    marissa12 hazel5

    Posted

    Hi I have left a message further down but what I am trying to find out is how people are being diagnosed with SOD? My GP told me it was a possible cause for my pain but that's gas far as it went. I'm desperate for some answers :-(
    • brenda08068
      brenda08068 marissa12

      Posted

      It is diagnosed by a gastroenterologist performing a ERCP test or MRCP test. I think this is what I have. Going to see a gastroenterologist next week. Hoping for a diagnoses eventually.
  • Guest
    Guest hazel5

    Posted

    I had my gallbladder removed in 1999 and started with SOD a few weeks after the operation.I was hospitalized three times following really bad attacks but it took about two years to get a diagnosis following an ERCP. My consultant is Richard Hall at Derby Royal , he is reluctant to touch the actual sphincter as I had a bad reaction to the investigations he did and the risk of pancreatitis was too great . I have just had to have two days off work due to a tummy bug but now I am thinking I may be having a longer SOD episode than usual. I started with a fever and have had pain for two days and an acute attack in the night, no vomiting and only mild diarrhoea.My GP didn't know what it was and prescribed codeine which dulled the pain but didn't take it away completely. If this continues I will go back to see the consultant as until this last week my attacks had been months apart.
  • gerryc
    gerryc hazel5

    Posted

    Good day hazel15, I am new to this site...........battling with SOD for 3 months.  Your posting is the only positive that I have read in that time.

    Are you still sucessfully managing your SOD condition with acupuncture?

    Many thanks for sharing your experience.

    • hazel5
      hazel5 gerryc

      Posted

      Hi Gerry,  yes, still doing the acupuncture on a preventative basis and it still works for me, thank goodness.  When I was very stressed last year, i started to experience some night time pain and my GP advised that i could increase the frequency of acupuncture to once every two days, so I did that, and it worked.  I am back to doing it once every two or three weeks now (I am not extremely careful about the time gap from one session to the next).  Good luck!

       

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