1. Community
  2. Liver and gallbladder
  3. Gallbladder Problems

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

Prev Next
  • gerryc
    gerryc hazel5

    Posted

    Amitripline (prescibed drug)  taken at night can help the Spincter of Oddi to relax...........it will take several weeks before you will get any relief. It does work but possibily not for everyone.

    Good luck and report back.

    Regards,

  • hazel5
    hazel5

    Posted

    I take 30mg Amitriptyline each night but it is just for pain relief of the daytime pain I used to get, it is highly effective for me but did not stop the night time severe pain attacks. It is taken at night because it makes you drowsy. Am not aware of any muscle relaxing properties of Amitriptyline though.
    • hazel5
      hazel5 OrangePoppy

      Posted

      Yes! Doing it about once every 3 weeks to prevent the night time pain attacks. Works for me

    • OrangePoppy
      OrangePoppy hazel5

      Posted

      Super cool! Before you went on the Amitriptyline, what were your symptoms? I have constant burning, pain, pressure, spasms, I can feel it in my back some. I have bile reflux and gastritis. I was just told I have SOD 3. Everything burns. I had my gallbladder out 7 years ago and 3 days later it all started. I hope you continue to do well!
    • hazel5
      hazel5 OrangePoppy

      Posted

      Sounds like what I had. I could barely bring myself to eat because of the pain that I knew would follow. There was some small improvement when I started on 10mg of Amitriptyline and then less pain after I increased to 20mg and then about 6 weeks after I increased to 30mg the all day every day pain faded away to be only very occasional. Now if I do get some daytime pain I do manual self acupuncture at GB34 and it stops 😊. I took about 4 months to get to 30mg. If you are tolerating the side effects of the Amitriptyline (which wear off anyway) then you could talk to your doctor about getting there in less time.

      Very best wishes

  • rachel11011
    rachel11011 hazel5

    Posted

    I suffer with SOD following gall bladder removal after I had my son 9 years ago. I had a low fat diet and small size so not sure how the problems started but since I have had it removed my digestive problems have been horrendous. I suffer daily with both bile and acid reflux (two different things although the doctor will usually just treat you for acid reflux which wont do anything for the bile reflux). Sometimes I can't even hold a sip of water down. I also have gastritis, IBS and SOD. One thing that might help is I discovered that opioids cause my SOD. So if I was suffering a migraine, had surgery or anything that required a strong opioid painkiller I would then get a worse pain attack of SOD. The opioids (oxycodone, codeine, tramadol, morphine) actually cause the spasms and pain. Has anybody else had this?
    • hazel5
      hazel5 rachel11011

      Posted

      yes, some people have found this, but not me. Still, although the oxycodone took the pain away, I hated the attacks and the side effects. Have you tried the acupuncture?
  • katierh
    katierh hazel5

    Posted

    Hello, I am writing on behalf of my husband who has been unwell for the past five months. Please could anyone here who has been diagnosed with SOD say whether his symptoms & how they began sound familiar/likely/unlikely to be SOD?

    Initially he was referred to a liver specialist after he became severely dehydrated whilst running. He had had upper, central abdominal pain for about two weeks before this point, which started when he felt a sharp pain 'like something snapped" but dulled almost immediately. The pain has remained constantly there, varying in severity and sometimes spreads across his upper abdomen and to his back. He also describes feeling exhausted and really 'out of it' or 'like he is sitting back in his head'.

    When he feels at his worst he has episodes of extreme pain and disorientation plus a feeling of pressure in his neck on the left hand side and all he can do is lie in bed and concentrate on not being overwhelmed by it.

    The episodes seem to be brought on by digestion, exertion and/or stress

    He has had dozens of blood tests which have shown nothing other than a slightly raised bilirubin level. MRI & CT scans & an endoscopic ultrasound also came back clear.

    There is a family history of colitis IBS and sarcoidosis and I think he suffers from undiagnosed IBS.

    He has now been referred to a Gastroenterologist. SOD was mentioned a few times by different consultants, but one (a surgeon) even dismissed it as being made up!!? I guess this indicates how varying treatment of this condition can be.

    Any thoughts or advice would be really appreciated as we are completely in limbo and appointments are months apart.

    Thanks

    • hazel5
      hazel5 katierh

      Posted

      Dear Katierh, I'm sorry that I can't comment much on your question about symptoms. Those you describe sound different to mine. I hope your husband has made some progress. Best wishes
    • wall1409
      wall1409 katierh

      Posted

      Hi Katierh

      just came on the this forum and noticed your question. Yes, i suffer same as your hubby , been hospitalised numerous times and given different opinions. Had mri ultrasound hida scan ercp all clear my liver enzymes are chronically elevated after each attack but are still abnormal now and have been for 7 months. I had gallbladder removed 2014 and my problems got worse. I went to hospital yesterday to see gi expecting to be sent for a liver biopsy but she wants me to have an ercp manometry as she believes i have sphincter of oddi and if she is correct she wants me to have an operation to cut the muscle as i have been on amytriptolene for nerve damage so obviously it didn't stop sod. I do use a gtn spray issued by hospital to spray under my tongue which relaxes the muscle and nips an attack in the bud. Hope your hubby gets sorted. Its taken me 3 years up to now and i really hope my gi is right as only other possibility after this is liver disease

    • prifry
      prifry wall1409

      Posted

      Could you please let me know how you feel after the operation?
  • beverley9669
    beverley9669 hazel5

    Posted

    I have actually found an up to date forum about SOD. I don't know where to begin as I had my gall bladder removed when I was 18. I am now 56 and I've battled with this almost all my life. It's only in the last few years that a doctor has even told me about SOD and unfortunately doesn't seem to offer much help, so I'm left trying anything that could help. I've kept food diaries,various pain killers, buscopan,amytriptoline(which I take for my back),you name it ,I've taken it.its as much a mystery now as it was then. The only thing I can say for sure , is that anything with codeine in ,brings on an attack. I've recently been given liquid morphine to try but recently during a bad attack I tried it and I think it aggravated the pain as it was much worse. I would like to ask if anyone who normally avoids codeine, if, you're already suffering an attack ,if taken then,does it help the pain or ,as morphine, aggravates it.
    • hazel5
      hazel5 beverley9669

      Posted

      I have heard of some people suffering aggravated symposium after taking opiate analgesics, though not everyone does.

      I keep up with my preventative acupuncture so I don't get the bad pain attacks anymore. When I had just started the acupuncture and still got some attacks, I just put the acupuncture needles in my legs at point GB34 and the pain stopped. It felt like some kind of miracle, I would urge you to give it a try in case it will work for you too. See link to my published paper further up in this discussion.

      xx

    • hazel5
      hazel5

      Posted

      *symptoms not symposium!
    • hazel5
      hazel5 beverley9669

      Posted

      Beverly, one other unfortunate point is that SOD Type 3 is essentially, technically, equivalent to undiagnosed epigastric pain. This was pointed out to me by a nevertheless sympathetic consultant in the USA who was responding to my paper. He is right. There could be a range of things going on among all the people whose condition is classed as SOD Type 3. One guy who did a heap of research was convinced that his pain came from the remaining part of his cystic duct after laparascopic cholecystectomy. He convinced a surgeon to remove the inflamed remnant and felt better. Perhaps that is what's going on with some of us.

      For me, finding a solution was more important than knowing for certain what was going on. So the try it and see approach is good for low risk options (and endoscopic sphinterotomy does not count as low risk, in my view).

    • suffering95088
      suffering95088 beverley9669

      Posted

      Hi, Beverley

      I ama 55 year old woman and I had my gallbladder out when I was 19.  I have always had problems with my stomach since then.  I would get attacks that I would call gallbladder attacks even I didnt have one.  When I took codeine after my gallbladder was removed I would get what was like a gallbladder attack.  I never took codeine again. I would say I was allergic to it.  My mother who had her gallbladder out with me had the same thing.  Never took codeine again.  I actually met a dr. that told me most woman who have their gallbladder out are very sensitive to codeine.  That what they call it.  I just say I am allergic.  I have started to suffer since 2014 with upper right quadrant pain after I eat.  I just couldnt eat hardly anything the only thing i would eat was boiled chicken meatballs with white rice in them and a piece of baked chicken.  I lost 30 pounds and it lasted a year.  After the year it started to get better and over time I was eating everything again.  It started on an off some really bad bouts of pain for a day or 2 and 2 weeks ago it started again full force.  I had endoscopy, ct, mrcp, cat scan and everything was ok.  I just went for a bunch of blood test to see how all the levels are and to check to see if there is enough enzymes in my poop that should come from the pancreas. I myself am searching for an answert to my constant pain.  This is not living.  I wish you luck but stay away from codeine.

    • hazel5
      hazel5 suffering95088

      Posted

      Hi poor lady still suffering, for me the everyday pain that makes you barely eat was successfully addressed with 30mg Amitriptyline each night. The severe pain attacks are eliminated now by acupuncture. I am living a proper life! But I was anorexic and moping at home before I got sorted. Very best wishes xx
Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.