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
claire02628 hazel5
Posted
hazel5 claire02628
Posted
Sorry there are no known drugs to prevent the severe pain attacks. If you get the daily pain that is worse after food try Amitriptyline. You have to take it every night and it takes weeks to fully work, so stick with it.
Good luck and best wishes
Hazel
janel38413 hazel5
Posted
Would love to hear more. Been killing me for 20 years.
diane58576 hazel5
Posted
When I read your post, I almost cried! I thought I was going crazy or I was a hypochondriac due to this insane pain in my abdomen.
I was diagnosed with chronic pancreatitis though my lipase has been normal for about six months. I've complained to my gp that the chronic pain I feel is pretty manageable with heat packs and relaxation, just reclining in my chair and trying to be comfy. But when those spasms start, it's like I've been hit by a truck. I can feel my back tightening and the pressure pushes forward into my front mid abdomen, between my rib cage, and then the spasms start. They come in clusters and I'm completely debilitated. All I can do is is hold my tummy and pray it ends......this can go on for six hours and when it ends it takes at least a week to feel comfortable again.
My gp prescribes me hydromorph but won't prescribe Buscopan which is frustrating because I know that the Buscopan works 90% of the time without the pain meds.
I'm going to look into acupuncture treatment after reading this. Thank you!
wall1409 hazel5
Posted
Hi
my new gi wants me to have ercp with manometry for SOD. My liver enzymes are chronically elevated during an attack but haven't been normal for 7 months now. I was expecting a liver biopsy but she wants to try this even though i had a HIDA scan 2 years ago to rule it out. I can't do acupuncture due to severe arthritis in my spine shoulders. I have a gtn spray with does help to nip an attack in the bud. It does feel like a gallbladder attack but worse and pancreatitis was ruled out as amylase was normal.
hazel5 wall1409
Posted
With regard to your arthritis, do you mean that you are physically unable to handle the needles and apply them to your legs? If so, is there someone who could be shown how to do it for you?
wall1409 hazel5
Posted
Hi
gi did mention botox and cutting musle so obviously im assuming whoever is doing procedure will decide. Im just hoping they have this right this time ive been told in hospital my pain is anything from hiatus hernia playing up to gastritis. I do seem to tick the boxes with this one especially with liver enzymes being abnormal too. I definitely couldn't insert needles i get numb hands due to my cervical arthritis and i have it in my fingersaand wrists and i don't have anyone to do it for me unfortunately
hazel5 wall1409
Posted
You could perhaps try acupuncture administered by a professional on a weekly basis and see whether there is any improvement after 2 or 3 months. Good luck.
wall1409 hazel5
Posted
I lost my job in February due to my health so seriously could not afford private treatments like many others can't. I want this to stop. My only option is medicatio for temporary relief or surgery , i might try botoc first see if that works. Ive never had pancreatitis so hopefully procedure shouldn't cause that
zara_55064 hazel5
Posted
Hi I'm new to group and have been suffering from sod for ten years It all started after my first child I had my first attack in 2006 then would have one every so often till 2010 when I was pregnant with my second at the time I was very limited as to what test I could have and at the time was told was gallstones once I had my daughter I was able to have all the testator this point I was Avin one attack ever two weeks tried changing my diet to a bland on had test n said no stone said my gallbladder didn't contract so removed it in 2011 for a full year no attacks so thought I was cured but from 2012 started having them every so often ofcourse Dr weren't sure what it was and as have reflux and high liver enzymes o was pass from pillar to post then September 2015 the attacks came back really bad would last days but I'd be that worn out would take a week to recover in an attack the pain is unbearable it's the worst ever even on daily bases it's bad pain relief at the minute when have an attack is two tremadol 40ml of morphine and up to 3 amatriptaleen and then another 2 at the night time now when I'm not in an attack I just rely on two amatriptaleen but the aftermath of an attack is so bad this is my third week of being in pain I suffer pain all in my upper right back and stomach feel like I'm Avin hot sweats on n off which the dr says is the pain causing it I feel worn out all the time I have had botox in my sphincter muscle twice and am waiting for the operation to cut the muscle should be in October my question is does any of you just feel really depressed because ur in pain and no one really understands I went Dr n they said it's not that pain full but he not the on living with it job has he seen an attack I just feel really crappy xx
wall1409 zara_55064
Posted
Hi Zara
I feel your pain. My pain worsened with gallbladder removal. Getting Euston 27/07 and hopefully sphincter cut not Botox . It's horrendous pain I too have chronically elevated liver enzymes and I am really hoping this is not liver disease but GI thinks it's definitely SOD
zara_55064 wall1409
Posted
The gi Dr said I need to av botox you see if this has any effect on my pancreas and I need to av it twice it does leave me pain free but both times I have had it I have been in an attack but my attacks are changing the pain and how long it last I seen liver specialist who said my liver ok but I'm worried about the effects of it in long run I can't wait to have sphincter cut in October do you know when urs is how long have you been having these for xx
wall1409 zara_55064
Posted
In 2012 I was told it was osophageal spasms but started about a year prior. Pain is now right upper side and comes in contractions that build up until you can't tolerate them and GP puts me in hospital. Get them bad every 8 weeks or less
zara_55064 wall1409
Posted
Aww really It just an awful condition to live with because nobody understand unless they go through it I say like contractions n I don't make it Dr I av to call ambulance or go down to a n e it's a bloody nightmare I'm just hoping cutting it is the cure n I don't have to take all the pain medicine again xx
wall1409 zara_55064
Posted
I know. Let's hope this works for both of us. I still have to take meds for other conditions and omopraziole as I have a hiatus hernia but it would be nice not to have these attacks as they can come on anytime, only know when pain starts