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
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!
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
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.
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.
Hi Jane. Are you still active on this forum?
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!
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
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 :-(
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.
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.
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!
Many thanks as I start the journey.
Regards
Gerry
Hi Gerry,
I have now published a case report paper that is open access so you can download it and take it to your doctor or acupuncturist. Go on to Google Scholar and search Walter and Curtis Self administered electro acupuncture provides symptomatic relief in a patient with sphincter of Oddi dysfunction. It is published in Acupuncture in Medicine.
Let me know how you get on. xx
Is this the paper that costs £27 to download?
May I ask what this is and what kind of pain it causes? I have some pretty bad pain after my gallbladder was removed on an emergency basis for stones obstructing the bile duct, but I do not have a regular doctor and don't think I saw a gastroenterologist, or if I did, I didn't know it since I had surgery after being in the emergency room. This was fifteen years back.
Since then, I have progressively bad pain in my gallbladder area after eating that reminds me of labor pains. Is this like the pain of sphincter of oddi problems? I've never heard of this before, Googled it, and see it has pain with it. Does SOD cause a pain like a knife in your gallbladder region after eating? Thank you. I have limited funds and am trying to figure this out before seeing a doctor because they are costly (I live in the U.S. and have poor health insurance).
No! My paper was made open access and is free to download 
Dear Clarissa, your pain sounds as though it could be caused by SOD. The sphincter of Oddi is at the bottom of the common bile duct where it comes together with the pancreatic duct and these two ducts empty into the gut. If the sphincter malfunctions it can cause pain. This is not very well understood by medical researchers. A well informed patient recently got relief from having the remnants of his cystic duct surgically removed. You could perhaps also find some useful information from reading papers available free via Google Scholar. Search for sphincter of Oddi dysfunction and for post cholecystectomy pain. You might need to have Wikipedia open to look up all the medical words you are not familiar with, I totally did! Good luck and if you can manage it, go and see a gastroenterologist (thank goodness for the National Health Service )
Thank you Hazel but the only article taht I can find is:
The abstract/extract view of this article is free (link available in right hand box).
Access to the full text of this article requires a subscription or payment.
Full text
Training in self-needling and performing it as part of a clinical trial: the practitioner and patient experienceAcupunct Med acupmed-2014-010708Published Online First: 6 March 2015
Gerry, mail me and I will send you the article as a pdf. Anyone else who wants it can mail me too
Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service. If you have a direct link to the full text article this can be posted here. I couldn't find one from a quick search.
http://patient.uservoice.com/knowledgebase/articles/398331-private-messages