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Sphincter of Oddi Dysfunction

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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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  • Prettyhate
    Prettyhate hazel5

    Posted

    Hi,

    After having my gallbladder removed 4 years ago I have been experiencing increasingly severe episodes of "gallbladder type" pain and vomiting. After much trawling through the Internet I firmly believe it to be SOD.

    My doctor prescribed me tramadol for the pain which really helped, but switched me to dihydrocodeine which made it a lot worse! This has left me confused. Both are opioids, so why would one help an attack and another worsen it? It seems a bit strange to me.

    I am being sent for a regular gastroscopy in 2 days' time, mainly for the vomiting I get alongside the upper right quadrant pain. WIll this show anything regarding the SOD or will I need a more specialised test?

    Sorry for all the questions. I'm just scared, in a lot of pain, and sick and tired of being sick and tired. Speaking of which, is extreme tiredness another symptom? The past 6 months I have been utterly exhausted and struggle immensely to just get out of bed. I'd love to hear from anyone in the same miserable boat as me

    • anca_03849
      anca_03849 Prettyhate

      Posted

      Hi

      I have been in the same boat and had my GB removed in 2009 only started getting pain last year December. But it is getting worse. Had all sorts of test but they can't find anything. I find codine gives more pain not sure why. Also I have to be very careful on what I eat and what not. After reading about Sod I believe that is what I suffer from. It is getting the Dr to agree for the test.

  • anca_03849
    anca_03849 hazel5

    Posted

    Hi

    I have had my GB removed in 2009 and it has been good since December last year then out of the blue I had exactly the same pain in upper abdomen just like before the gb was removed. I have had the camera down, blood test, and scan they can't find anything. I am restricted on food and so scared to eat as don't want to get the pain. The doctors is reluctant to do anything or even help. She said it is all in my head. Well I know when I have pain and when not. It is affecting my work and I have to have time of as can't function when I do have the pain. Wish now I never had it removed.

    • hazel5
      hazel5 anca_03849

      Posted

      Hi Anca,

      i feel for you, it is very frustrating when your life is getting turned upside down and nobody you turn to has the answers.

      Regarding your doctor who said "it is all in your head": pain itself is experienced in your brain, so that much is true. If you mean that the doctor was suggesting that the cause of your pain was psychological, that is another matter.  It seems to be true that psychological problems can cause or worsen various pains. We poor patients can try not to be insulted by that. However, if the cause of your pain is a physical malfunction in your biliary system, which sounds plausible to me, then you could try addressing it as I have done. See a nice, sympathetic gastroenterologist and feel free to show them my paper, referenced above: Self-administered electroacupuncture provides symptomatic relief in a patient with sphincter of Oddi dysfunction. You can download the paper free of charge. I am still taking 30mg amitriptyline each night and only do my acupuncture about once every three or four weeks now. The SOD, or whatever it may be, does not bother me anymore. Very best wishes.

    • maureen33532
      maureen33532 hazel5

      Posted

      hazel..I have found a reference to your experience...but not that actual research paper ...do you have a direct link? ThNks for any help. 
    • hazel5
      hazel5 maureen33532

      Posted

      Hi Maureen, the link is posted in this thread further up somewhere. I think the comments might run to 2 pages now so you might have to look carefully on the page. Let me know if you still can't find it.

      I am still totally free of problems from my SOD, doing preventative electroacupuncture about every 2 or 3 weeks. This year I have even been able to reduce my daily dose of Amitriptyline to 20mg. I am hopeful that I might be able to reduce that further.

      Best wishes, Hazel

    • hayley08
      hayley08 anca_03849

      Posted

      Hello and thank you for the add......

      I had gallbladder/stones attacks from 2012 on a 4/5mth basis quite regular. Severe pain, diarrhoea and sickness.

      Got told IBS, virus & tummy bugs etc! 😠

      Eventually after a scan, my gallbladder was removed September 2015...... I thought great no more of that severe pain "that was worse than labour/giving birth"

      But... since then I've had the same painful attacks, diarrhoea and sickness/vomiting horrible nausea daily and it always starts with sulphur burps, that's when I know I'm in for the kill for 10/15hrs. Then in bed for days sick & incapacitated....

      Recently the sick/bile burnt the roof of my mouth.

      Gastroenterologist has ruled out so many illnesses Inc IBD (cuz my calprotectin was high) after camera up & mri. I explained to him that if I know I've got this pain for the rest of my life, I'd rather not be here, had to try & explain that's how serious I am about the high level of pain 😠....

      Anyway he's now convinced that I have this medical problem called SOD, showed me diagrams etc & as arranged a camera down 😨 & mri....

      He did say it could be quite severe......

      So I'm trying to learn more about it from joining these groups.... The more I read about it, the more I actually think he's right and why didn't he test this first, rather than ruling all the rest out.

      I am actually scared now of putting food in my mouth, I'll eat porridge with almond milk & drink water, weight is dropping off and body aches with rheumatoid/arthritis getting worse.

      I am going to be reading about everyone else on here.

      I know I'm not on my own here when I say the pain is indescribable and it affects your quality of life.

      Sending love to you all xx

    • hazel5
      hazel5 hayley08

      Posted

      Hi Hayley, sorry to hear of your suffering. Do read the entire thread on here. From my own experience the two things that have helped me are Amitriptyline and acupuncture. The reason your doctor may not have tested for SOD is that the test carries a risk of causing instrument induced pancreatitis, which can be severe and even fatal. Do check the paper I wrote with my doctor. Link is in a post above it is free to download.

      Good luck

      Hazel

    • ann55375
      ann55375 hazel5

      Posted

      Hi Hazel, i too am another person without gallbladder suffering more now than two,years ago,when it was removed.  It is nausea/diarrhea (yellow sometimes) and a little pain in RUQ.  I am attending an acupuncturist for anxiety but did not mention the gallbladder. Do you think he woukd be able to add it into my regime?  What points domyou use now?

      I am also in Scotland and wonder if you could recommend any other acupuncturists who are conversant with this technique.

    • ann55375
      ann55375 hayley08

      Posted

      Hi, i am just at the beginning of the SOD  problem, two years simce GB out.  Have you found anything that has helped you?  Dr seems to think its not possible to treat it. There are a few suggestions on these sites, i particularly like the acupuncture route.  May need to try it.
    • hazel5
      hazel5 ann55375

      Posted

      Dear Ann,

      I would recommend that you download a free copy of my journal article, the link is further up this thread, and read it and then take it to your acupuncturist and ask him to read it. The acupuncture point that seems to have the best effect is GB34. I am not a qualified acupuncturist or a doctor but as I understand it, you can add new points to your acupuncture regime.

      As you will read in my article, I take medicine daily to successfully manage my daily pain. After 4 years of doing regular acupuncture to myself i reduced the dose of my daily medication and have not suffered any return of the daily pain.

      Good luck!

      Hazel

  • redredwine
    redredwine hazel5

    Posted

    Wow, that is interesting, I am a little confused if you can explain did you have the minor surgery to remove the offeding body part or did you just use meds and accupuncture?  And when were you  able to go off meds,  right away with new treatment?  I have back pain and neck pain and two doctors specialists said ,   not to do any surgery it is not bad enough, wait till I can no longer walk because of risks with neck and back. Surgery could leave me with worse more chronic pain. It is only bareable because I take meds and it flucuates wildly.   I had one surgery already.  I am constantly dealing with pain, and get very down sometimes from it.  I can not afford regular visits to accupuncture but if I could go and learn to use it that would be fantastic. What is electro accupuncture?  Thanks for posting..
    • hazel5
      hazel5 redredwine

      Posted

      Dear Red, the procedure that I did not have is a sphincterotomy, which kind of snips the sphincter to keep it always open.

      As soon as I found that acupuncture could relieve the pain of the severe attacks I no longer needed the opioid painkillers.

      Electroacupuncture sends little electrical pulses down the needles. I cannot say whether I would have got just as good results using manual acupuncture only for prevention of the pain attacks. Having found something that works I am a bit reluctant to mess with it.

      If you have back and neck problems then you might not be able to self needle simply because you may not be able to safely reach the points you need to use. But perhaps you could persuade someone to be trained to put the needles in for you. This has been done. Contact the British Medical Acupuncture Society for advice.

      best wishes

    • redredwine
      redredwine hazel5

      Posted

      Dear Hazel, thanks for the info, really appreciate it and I am with you, if I can avoid surgery of any kind I am all for it .  Best wishes to you.
    • redredwine
      redredwine hazel5

      Posted

      Dear Hazel, thanks for the info, really appreciate it and I am with you, if I can avoid surgery of any kind I am all for it .  Best wishes to you.
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