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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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  • Mrs.Nicks
    Mrs.Nicks hazel5

    Posted

    Hi hazel5,

    I see this post is very old now and I'm unsure if you're still even active on this website, but thought it was always worth checking.

    I was pleased to read your discussion and the relief you have tried and found successful. I will be mentioning acupuncture to my GP. I'm 27 and SOD has slowly but surely broken me down to the point I had to quit my job and spend a lot of my time in bed unable to move and eat. This has been since removal of my Gallbladder 2 years ago. I'm awaiting ERCP but my doctor has had me on opioid based pain relief (Zomorph), I've read that this can actually make the spasms worse. Did you or any other members reading this find that? Interested to know if you have tried this as I see you mentioned amtriptyline and OxyCodone treatment. I also self administer Buscopan IM three times a day.

    If you do read this, thanks in advance. As I'm sure all sufferers know, this really is such a terrible and painful illness and I'm very fed up with multiple hospital admissions. Would love to be able to control the pain myself instead of being stuck with tons of needles with goodness knows what going into me while in hospital!

    Hannah

    • gerryc
      gerryc Mrs.Nicks

      Posted

      I can confirm that Amtriptyline taken EVERY NIGHT can contribute to a better quality of life. Diet and lifestyle is also essential. It may not work for everyone but please do try for at least 10 weeks. Initially you will be very tired but keep the dose low but regular.  Good luck.

       

    • hazel5
      hazel5 Mrs.Nicks

      Posted

      Hi Hannah,

      sorry to hear how bad you've been. There is some evidence that in some patients, pain can be worse after opioid analgesics. If they are not working for you I would seriously think about quitting them. See what your GP or gastroenterologist say about amitriptyline. A bit of dry mouth and drowsiness are not much of a price to pay for pain relief. This drug does not work quickly, you have to stick with it. I started with 10mg every night at the suggestion of my GP while still waiting to see my GI consultant, who then encouraged me to increase to 20mg. After a few weeks I was able to go back to work then increased to 30mg. About 6 weeks after that my daily pain just went away. What a relief. I was still getting the very severe pain attacks every so often in the early hours. That is what I started acupuncture for and I'm happy to say it worked for me. If you have not yet down loaded my journal paper please do, and show it to your doctors. There is a link to the paper above somewhere and it is free to download.

      very best wishes

      Hazel

    • gerryc
      gerryc

      Posted

      Also, the SOD expert in the UK is Dr. Waverely in the Hammersmith Hospital
    • joan31523
      joan31523 Mrs.Nicks

      Posted

      I had my gall bladder removed 52 yrs ago. In 2010 I had breast cancer, treated with Anasrozole, an oestrogen suppressant. The following year I developed SOD. After a brutal failed attempt  at ERCP by my local hospital I have suffered increasing symptoms, because I was so traumatised by my experience. Last year I had a total knee replacement,  and was given several opiates , codeine, morphia etc to control  the pain. This medication made me  vomit profusely. Luckily I was discharged after 2 nights, so I was able to cut down on this medication. It has taken me six months to recover.   Severe pain and weight loss have forcedme to seek help from another consultant at another hospital. I have now been diagnosed  with SOD 3, and I await  an ERCP  under a general anaesthetic..   As a result of my experience  I think may be that hormone levels and opiate drugs do affect SOD. 
    • hazel5
      hazel5 gerryc

      Posted

      Did you mean Dr David Westaby at Hammersmith?
    • joan31523
      joan31523

      Posted

      No, my new consultant is at Leeds St James.   The first [ bungled] attempt   at ERCP at another hospital  left me traumatised. and afraid to seek help again for 4 years.   I had been told by my oncologist not to allow procedures to be carried out on my left arm, because I had had a  Left mastectomy  the year before. I asked the clinician please  don't put the B/P cuff on that arm, . He  shouted at me    Rubbish woman !! Nonsense ! There is no connection WHATSOEVER!!  This tirade continued  until I was sedated.  During the procedure  I was aware of  him shouting at the nurses, and at me, KEEP STILL WOMAN !!  DONT HOLD HER HAND. YOU ARE MAKING HER WORSE!  while he raised and lowered a flask of water. I  wrote with my finger on the matress, STOP. STOP, which seemed to amuse him. Eventually he  withdrew the tubes and threw everything on the floor, and slammed out of the room, abandoning the attempt entirely.  I suffered pain for months afterwards .  Later I followed the complaints procedure   and the  panel apologised on his behalf..
    • Libtec
      Libtec hazel5

      Posted

      Hi hazel, you may not read this but the link to your paper fir sod is missing. Please re upload this

      Thank you

  • holly99
    holly99 hazel5

    Posted

    Hi hazel...could you send me the pdf of your acupuncture info? Thanks.
    • hazel5
      hazel5 holly99

      Posted

      Hi Holly, the link to download it free of charge is above in my reply to Mrs Nicks, let me know if you can't get it. If you send me a private reply with your email address I can mail to you.
  • Guest
    Guest hazel5

    Posted

    Hi All,

    Reading all this makes me feel like I'm not crazy!  I'm having similar issues after GB removal when I was 12 (I'm 30 now). It happened when I woke up from surgery that night and have had these attacks once or twice every month. They are the worst pain I have ever felt!  I also have dull ones every throughout the mouth though. 

    I've only recently made some progress with a GI specialist that really isn't sure what it is but thinks it could be SOD. I made a thread about this earlier this week detailing my experience (https://patient.info/forums/discuss/ast-and-alt-hit-300s-when-i-have-pain-513368?page=0#2113993) as I didnt see this one. Does this sound like SOD?  I've never been able to fully-identify a trigger but I believe sugar sometimes causes it.

    The GI wants to do a second ERCP after trying MRCP, CT, ultrasound, colono and endoscopies, etc. The first ERCP they couldn't get into my pancreatitis and this one he wants to try and get in and also do a sphincterectomy, which I feel is super risky considering pancreatitis and complications from cutting, not too mention he doesn't know if that's the issue. It is very reassuring that you feel the same, Hazel5.

    Does SOD cause AST and ALT enzymes to spike when you have the attack and return to normal a few days later? My blood results have been normal except when I have these attacks. I found my enzymes go to 300 (even an hour after the attack) and then drop back down.

    Thanks everyone for sharing your stories! It's so helpful!

    Regards,

    Jay

    • hazel5
      hazel5 Guest

      Posted

      Jay, sphincterotomy is risky and the recent Episod study by Peter Cotton in the USA, has shown it to be not a highly successful procedure. Download my journal article free of charge from the link above and take it to your GI and to a medical acupuncturist. Try the British Medical Acupunture Society if you can't find one. Or even an acupuncturist who practices traditional Chinese medicine. Ask them to show you how to needle yourself especially at point GB34. Next night time pain attack, put the needles in (you can order your own from the Internet) and see if the pain stops after 15 or 20 minutes. Then do the acupuncture once a week as a preventative measure. If it works for you then you reduce frequency of preventative acupuncture. Good luck!
    • joan31523
      joan31523 Guest

      Posted

        Hello  buddy, Your signs and symptoms sound like SOD though I am no expert.  I think the blood test results are typcal.   The day afer an   episode, [ which always happens in the evening or during the night ] I  feel as if I have been kicked.  I  have no appetite, and I am very cold.  I feel I have no alternative to ERCP, so I must put my trust in  the consultant  and hope for the best.  He seems to be knowledgeable and caring .   Try not to  stress, if that's possible, it seems to make things worse.  My best wishes to you,     Joan
    • Guest
      Guest joan31523

      Posted

      Thanks Joan! My anxiety and years of experiencing this are not helping me hah. Last time I had an ERCP , they couldn't get in my pancreas. I actually woke up half way through this and it was definitely scary to be awake through it. I wasn't able to signal them that I was awake. :S  Joan, what options have you tried prior to resorting to an ERCP? Have you identified any trigger or way to reduce the pain? I really hope it resolves it for you.

      Thanks Hazel! I read it and will bring it up with my doctor. smile I'm going to schedule a follow up appointment to discuss alternatives and review. I'll also try these accupuncture points. If it works, I will be so happy smile.

      I've been very nervous about this since it's been so long. I pulled up some recent diagnostic work that i had copies of and found some notes that I would like to share with the doctor that maybe will help with considering alternatives/diagnoses:

      - small sliding hiat hernia

      - duodenal cap apperas have slightly prominent mucosa within and caps does not fill out well 

      - he refers to my pain as recurrent acute pancreatitis

      - CBD - subtle single filling defect

      - tail of pancrease is truncated

      - suspects liver has undergone diffuse fatty change

    • joan31523
      joan31523 Guest

      Posted

      Hi  ace2,   SNAP   . it seems we are  much alike. I was conscious most of the time during the ERCP. I  tried to write with my finger on the mattress,, Stop, Stop.  That seemed to amuse  the consultant. The pain was agonising.   He shouted  ''Keep still woman '' several times, and he shouted at the nurses to stop holding my hand. . In the end he abandoned the attempt [ thank God]  and wiithdrew the tube and threw it on the floor, before storming out.  It was a  very traumatic  experience  for me , , and I have been too afraid to  repeat the attempt till now, ie] 4 years later. I also have a fatty liver and an atrophied pancreas, and a small hiatus hernia.  too.  I guess it was not an easy job for him, but it was absolute hell for me.     I have never been offered any alternative to ERCP, but it may be  because I have been so afraid of a referral back to this man, so I have just tried to manage it all myself.    I eat early, low fa det, but even so I get bad diarrhoea and bloating and chills, and I take a bucket to bed.   I   have a constant dull pain  under my ribs at the back, which I think is  due to  pancreatitis,   but the biliary colic  is much more severe,and wave-like  during an attack ..  The last episode of pain  lasted 8 hours.  so  I decided to seek help again    I am a retired nurse, so I have some understanding of our mutual problems.   Best wishes.  Joan
    • Guest
      Guest joan31523

      Posted

      Oh jeez, that's terrifying and extremely concerning given his lack of professionalism.  

      Thanks, Joan!! Does the pain SOD pain have to last a long time? Can it be just 30 minutes or so of hte worst pain in your life and not as often? Also, I found that it hurts to touch below the sternum and in the back when the pain occurs.

      I hope you are doing well.

      Thanks,

      Jason

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