Sphincter of Oddi Dysfunction
Posted , 61 users are following.
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
Keefe hazel5
Posted
Hi everyone, just thought I would update my situation.
I saw my GP this morning (found out that she had been speaking to my surgeon about me on and off this morning). Anyways, they both thought it would be best to admit me to the hospital because I'm pretty dehydrated and having so much pain with eating.
So after a few nurses and multiple sticks, I'm finally hooked up to some liquids and I'm kinda just hanging out...
My gp did discuss sphincter of oddi dysfunction with me this morning briefly and a GI here at the hospital also mentioned it so I guess it's something that they are thinking about. The GI also mentioned a functional biliary disorder, not sure if that's the same thing as or in the same class as sodd.
So...that's where I'm at. Let me know how you all are doing.
I did already make an appointment with a local acupuncturist who has a great reputation for next week.
Well wishes to all!!!
hayley08 Keefe
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
chrisuuu hazel5
Posted
Thank you for shariyour stoney with us hazel5! I'm glad to hear you're doing better~
I would like to ask you about the pain which you got how often was it? And did anything trigger it? Was it always severe ? And would it start in the back between the right shoulder blades then move to where the gallbladder was then move to the mid upper abdomen and subside slowly after a while?
hazel5 chrisuuu
Posted
I had two distinct types of pain. One was kind of a burning upper gastric pain that was much worse after eating. This pain is successfully managed with amitriptyline. The other was severe night time pain attacks and before my use of acupuncture I took oxycodone, which is essentially morphine, when I had those attacks. That pain was upper gastric, usually fairly central and was unspeakably severe. I had about 20 attacks over 3 years and though I kept a diary of them I was unable to identify any consistent pattern or triggers.
Do read the paper I wrote, I just reposted the link here, it is free to download.
Good luck and best wishes.
hazel5
Posted
http://aim.bmj.com/content/31/4/430
Here is the link again to my journal article, it is free to download. I wrote it with fellow patients in mind as well as fellow scientists and for doctors and acupuncturist.
hollipsalms91 hazel5
Posted
hazel5 hollipsalms91
Posted
Sorry to hear how bad things are. You need to find an acupuncturist near you and tell them you want to self needle at acupuncture point gallbladder 34, the short name is GB34. Get them to show you how to locate the point on both of your legs, how to put the needles in, just do it manually don't bother with electro acupuncture just now. You need to dispose of the needles safely. Ask if they will help you again the next day and once you are confident doing the needling yourself you can do it every other day for a while.
If you get an attack at night stay calm, sit up in bed with a pillow behind you and a pillow under your knees. Bend your legs and insert the needles in GB34 on both legs. Tap the needles for up to 10 or 15 minutes.
If you can it would be a good to show my journal article to your acupuncturist.
Best wishes
Hazel
hollipsalms91 hazel5
Posted
hazel5 hollipsalms91
Posted
Really hope it works for you. Acupuncture is way better than morphine for me. Haven't used morphine since I started acupuncture 6 years ago now.
hollipsalms91 hazel5
Posted
hazel5 hollipsalms91
Posted
They can for some people. Don't worry about hair g needles. Acupuncture needles are a different thing altogether. But I know what you mean about desperation, that's what prompted me to take up the kind offer from a doctor I knew who also practiced acupuncture to teach me to do it myself. You can't call 999 or 911 in the middle of the night and ask for an emergency acupuncturist!!
cil93293 hazel5
Posted
Hello,
I'm from holland, so sorry for my bad english.
My gallbladder is also removed 1 year ago. After i feel a pain, that i also have before removal.
The pain i describe is a bruning cramp. It feels i always strained a muscle in my ubber right belle under my ribs.
Sometimes the pain is hard en sometimes mild en sometimes is away.
I already have ct scan, mrcp. Blood is good. ALT AST is sometimes just under the normal.
I have more pain when i sit, lie is better and walking.
They think a have intercostaal nerve but i think maybe SOD.
Doe you have/had more pain with sitting? Is it a burning pain? When the pain is mild, the pain makes me nerveus......i must always think about it....
hazel5 cil93293
Posted
Your situation sounds like it could be SOD type III. If it is, none of the tests will show abnormal results. Get some references from Google scholar, discuss with your doctor.
You can just go ahead and try the acupuncture as described in my journal article, see the link above. It won t do any harm and it might solve your problems. Take a copy of the paper to an acupuncturist.
Good luck
Hazel
cil93293 hazel5
Posted
O and sometimes i have pain in the night more than in a normal day....betwen 02:00 en 04:00 o clock. It makes me al litte bit sweat and sometimes it gives me itch in my neck.
I can't find a relation with food or something.
When the pain is gone, i feel myself compleet normaal.......but the pain can come and go....
caroline5470 hazel5
Posted