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Anyone heard of Sphinctor of oddi dysfunction? and non-epiletic seizures?

(13 Posts)
galazyace30 Thu 25-Jun-15 13:09:10

Hi everyone, I am a new member and am very interested in knowing if ANYONE has heard of my 2 illnesses? It would be so nice to speak to someone who understands the constant pain, worry and anger!
Claire xx

Runwayqueen Thu 25-Jun-15 20:23:10

I have sodhmm so much for gallbladder removal curing the pain. I think there are quite a few of us on here sadly

galazyace30 Thu 25-Jun-15 21:06:16

I had my gall bladder out after getting pains EVERY day and ending up with pancreatitus 3 times. I was very ill after the surgery and they couldn't understand why. when I finally recovered I was pain free for about 9 months and then the pain just got worse and worse to the point now where I have to have morphine every damn day and am registered disabled! The doctors have sliced,diced,put a stent in, botoxed and electrocuted me from the inside. Nothing has helped. I end up in hospital roughly 4-6 times a year when the pain is just too much. I was always told there was just me and another woman a few miles away who suffered this bad?!?!
It would be interesting to hear how people like me cope with everyday life! xx

shouldnthavesaid Fri 26-Jun-15 12:49:48

My mum takes non epileptic seizures, I also work on a neurology ward so see it every day - pm to chat more smile xx

Rozalia Sat 27-Jun-15 20:58:50

My son had Sod after gall bladder removal. Then developed chronic pancreatitis and had a whipples 2014. On constant pain killers and his life blighted.
Gall bladder removal done in the US when he was 21, probably unnecessarily. So sad.

Amybabygypsyqueen Sat 27-Jun-15 21:04:33

You can have botox so sort sphincter of oddi- also gtn spray works in some people

yousuf1 Sat 27-Jun-15 21:39:10

I suffer with this really bad, started with having my gallbladder out and then it went down hill. At one point I was in hospital four days and home three days. I also keep getting pancreatitis and generally feeling really ill. Have had Botox and two sphincterotomies.
Currently on loads of drugs most of which are very strong like morphine. Still feel crap most of the time. It's so hard cuz I have four young children most of the time I just want to cry but have to be strong for kids. It is a very horrible illness and not is known about it.
I'm currently being tested by the genetic department to find out why I keep getting pancreatitis. Still under the hepatology team and still don't know wats going to happen, I'm sorry I've gone on but rarely do I find people who suffer with this condition.

Rozalia Sat 27-Jun-15 21:58:16

Don't apologise yousuf1, it is a terrible condition and hardly anyone has heard of it. It must be incredibly difficult to cope with 4 young children while in so much pain. My DS said he'd just like to be able to play with his toddler without being in pain.

DS sees Drs at the Royal London. We live a long way from there but they have a lot of experience with this. But even after such drastic surgery, which did improve his life somewhat, he is still in constant pain.

cherrytree63 Mon 29-Jun-15 11:58:49

I've just been diagnosed with SOD, been discharged by the surgical team and waiting to see the medical gastro team. Will be watching this thread for info, never heard about it before!

galazyace30 Mon 29-Jun-15 13:15:53

My list of medication daily is now...
oral morphine-around 20mg/10 ml
morphine tablets-60mg
prozac-40mg and

a year ago i was on
Fentanyl patches
2400mg of lyrica!!!!
and 100mg of amitriptyline which caused a problem called prolactinanemea!! (angry)

Everyday is a struggle, I look a complete fat mess, I cannot walk my children to school and basically just feel like a very shit person.My partner has to work 12 hours then come home and sort the children out and take them to school. No 2 days are the same, there is no pattern, nothing that makes its any better and there have been many times I have considered leaving this world. My children deserve a much better mummy and my partner could be so much happier with an able happy lady.(blush)
I have been sliced, diced,stented,botoxed and electrocuted from the inside while awake. Non of these procedures lasted long if they even worked at all!!
I have been seen by the gastro team, the neurology team, the pain team repeatedly, the team who confirmed the Prolactinanemea and recently was told by the pain team they have no answers for me whatsoever and discharged me into the care of my doctor and when it gets severe A&E department.(shock)

I am so shocked that there are so many of us suffering, and the doctors really don't understand this awful illness nor understand what we unlucky people have to cope with day in day out.

And now to the seizures!! 2 years ago the seizures suddenly started, no warning I had been out walking the dogs (the pain wasn't at its worse at this point, I did get an odd hour or two where I could do something normal!) all I remember is leaving the house, crossing the road into the field and then I came round strapped to a board extremely confused and pure panic, There were police and ambulance in my face and I really really freaked out. Luckily a neighbor passing recognized me and ran to get my partner. he ran to me and I can remember clinging to him in absolute fear, begging him to take me home, it was only then I realized I was covered in blood and wet through.
I got a copy of the police report a week or so later and it seems a man just about to round the corner had slowed down to let me cross the road but I just dropped, smashed my head open on an old church wall and then dropped and had a full blown tonic-clonic seizure. To say I was lucky is an understatement! I was literally in the blind curve of the road and a double decker bus would have been using that route every 10 minutes! Thank god for that man stopping in time. (shock)
Because it was my first seizure ever the doctors thought it might just be a one off but from then on I was getting them every 4-5 days!! I was petrified of being alone, leaving the house and dying during a seizure, I was a mess. Then suddenly they stopped again!! I would have episodes of absent seizures and get very shaky but not develop the full seizure. Except now I have been very very stressed with debt etc and they have started again, however this time they are different, I am having absent seizures where I just sort of freeze and switch off for 20 minutes, I'm told I garble some strange words before and then just completely tune out! Couple of weeks ago I was doing some B&M shopping with the family, I was fine all I remember is forgetting something at the till so went back to get it, next memory is coming too in a crowd of people, sat on a chair gripping a handful of bags very tightly. My little girl was crying and I blamed her sister for being mean, for me its basically like someone paused me and then I switch back on and carry on where I left off!! My partner was on the phone to the ambulance crew, the staff were crowded round me trying to stop people staring! I just sort of looked at them, stood up from the chair and started packing shopping! I really was oblivious to what had just happened!! apparently I had stood rubbing carrier backs and muttering and then started violently shaking. they had sat me on a chair just in case I dropped.
I also have started having seizures but I'm conscious!! I can feel myself sort of being sucked into a hole, pretty much like when you faint, I will then make a loud urgh sort of noise and then all my muscles freeze up and then I start shaking where my muscles are contracting and releasing very quickly, its agony and the fact I'm awake baffles and scares me.
Back at the start they did all the neurology tests and said it wasn't photo sensative epilepsy and have now concluded it is non epiletic stress disorder seizures!!
sorry this is such a long post, it feels good to get my feelings and thoughts out there.

Claire xx

p.s-does anyone claim DLA benefit or PIP benefit because of this awful illness? I was on DLA for 3 years but have now being refused PIP, How I am financially going to cope I don't know, that money mainly goes on transport for me getting to appointments etc. (sad)

Rozalia Tue 30-Jun-15 02:37:25

Have you appealed the Pip decision? Might be worth going to CAB, especially if you can get the help if one of their benefit advisors.

thanks for you, I'm so sorry to hear what you're going through.

galazyace30 Fri 10-Jul-15 12:45:34

Thanks for your reply Rozalia. It means a lot. I have got to do a mandatory appeal so waiting for that to go through. I understand there are people claiming who don't need it and the government should weed them out, however I have had so many people I know being refused. My best friends dad worked his entire life and then got ill, he got that bad he couldn't even get out his own front door, yet they said he was fit for work!
I don't think they ask the right questions on the claim form, its very vague! I would love to work and actually today am going to my local taxi firm (they know me well, like everyday lol) and asking if they h ave any work on control.
Wish me luck!!

yousuf1 Fri 10-Jul-15 23:44:23

Everything you said is how I feel too it's such a hard condition to manage because not a lot is known off it.
I was thinking of applying for dla or something health related but I didn't know i could so that's good to know. I also suffer with pancreatitis as well they both always start up together. I hope you feel better soon grin

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