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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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  • olga26727
    olga26727 hazel5

    Posted

    Hi hazel5,

    I have read the link you provided. It is very intresting! I am going to try acupuncture too. How are you managing now? I have sone more questions. What is your diet? Do you also follow any lowfat/low fodmap/ or any other diet?

    Also i read about Amitriptyline. It says it is an antidepressant....so i am a bit confused how it can stop the pain...? And does it have any side effects in long turn use?

    Thank you! Hope you are still around this forum

    • hazel5
      hazel5 olga26727

      Posted

      Hi Olga

      I am doing really well thanks, this condition is just no longer an issue for me. I do electro acupuncture about once every 3 or 4 weeks, only at acupuncture point GB34 ( on both legs). I have now reduced Amitriptyline to 20mg per day. It was designed as an antidepressant but for that the starting dose is about 150mg. It is considered old fashioned and inferior to SSRI drugs as an antidepressant but is used a lot to help with chronic pain.

      I eat whatever I like. I never found any connection between diet and my severe pain attacks.

      Best wishes

      Hazel xx

    • hazel5
      hazel5 olga26727

      Posted

      Long term side effects of taking amitriptyline, I was not told of any and am not aware of any, but you can look it up.

      xx

  • olga26727
    olga26727 hazel5

    Posted

    Oh wow!!! You cant imagine how much hope your post gives!!!! It might not work for everyone but at least there is a hope! Really! Thank you a lot for sharing your success experience! ! I shared your story and the link among 2 SOD groups on facebook. Hope lots of sufferers wilk read and try that too. Thank you so much!
    • hazel5
      hazel5 olga26727

      Posted

      Thanks for sharing Olga! You are right that it might not work for everyone but it is so worth trying.

      Best wishes

      Hazel

  • mariam80872
    mariam80872 hazel5

    Posted

    can you update us how are you now ?

    • hazel5
      hazel5 mariam80872

      Posted

      hi Mariam, sure, I am fine now, no pain, no drugs and I stopped doing acupuncture. I am very happy to have all that behind me.

      best wishes

      Hazel

  • Marcwithak
    Marcwithak hazel5

    Edited

    Hazel,

    Thanks so much for your post. My wife is practically suicidal from the pain and local Doctors aren't helpful. Can you give me the name of your Doctor (assuming that he or she is actively helping you)? And, if anyone else reading this has suggestions or the name of a specialist, I would greatly appreciate it.

    Thanks for giving people some hope.

    Mark B.

    P.S. We live in the SF Bay Area.

    • hazel5
      hazel5 Marcwithak

      Posted

      Dear Marc,

      I live in Scotland, in the UK, but am familiar with the Bay area. The doctor who taught me to do acupuncture to myself for this condition is based in England.

      After some time doing self administered electro acupuncture, I reduced the acupuncture points to just GB34 ( gallbladder 34). You can try any acupuncurist in your area and ask if they would be willing to show your wife how to locate GB34 reliably on her own legs, how to safely insert and dispose of needles, and how to use an electroacupuncture machine. I should note that there is no evidence to support electroacupuncture being more effective than manually stimulating the needles for this condition, but general knowledge of western medical acupuncture supports it.

      I found immediate relief during pain attacks from using needles in GB34 and I found that the pain attacks stopped after a few months. I do still sometimes wake up in the early hours with what feels like a Sphincter of Oddi spasm, but I just press my finger tip into GB34 and it stops. I no longer do preventative acupuncture, this condition does not afflict me anymore.

      very best wishes to your wife and you.

      Hazel

    • jess60758
      jess60758 hazel5

      Posted

      hi hazel,

      in going to an acupurturist and i am having trouble viewing the document and it saysni need to pay for it is there anyway i can gain acess to it so i can bring it to my sessions please?

    • hazel5
      hazel5 jess60758

      Posted

      sorry, I missed your note. The paper used to be freely available but the journal changed ownership and now I am not sure. You could email the journal and say that you are a patient seeking information relevant to your condition and treatment.

      best,

      Hazel

  • paula60131
    paula60131 hazel5

    Posted

    hi hazel my name is Paula and recently I've been diagnosed with SOD.

    I've been given a four week's cooling off period as weather to have the operation.

    I weighed nearly 9 1/2 stone last year and due to the SOD I am now weighing 7st 10lb

    was just wondering with you saying you didn't eat due to this condition did you also lose a good chunk of weight and have you had to change mush towards your diet.

    • hazel5
      hazel5 paula60131

      Posted

      hi Paula, yes, I did lose weight when I was first unwell. i got some high calorie meal replacement drinks. After taking Amitriptyline for several weeks, the pain reduced substantially and I was able to resume eating normally.

      I no longer get pain attacks. Before having a sphincterotomy operation, you might want to look at the EPISOD trial, which showed no greater benefits on average for patients who had the surgery compared to patients who did not.

      Amitrityline and acupuncture managed it for me. I no longer take Amitriptyline, not needed.

      best wishes,

      Hazel

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