Help with managing the pain associated with Achalasia

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Hi, I'm a 41 year old mum of 4 who lives in Jersey Channel Islands and have had Achalasia for 17 years now, (I have had a balloon dilatation and botox 3 times) to manage the pain that comes with the condition I drink warm water which generally helps, but there are times when nothing I do stops the agony of the spasms (I do think of knocking myself out) which can last for hours anytime of the day or night until I end up being sick, I would be really grateful if anyone could suggest anything else that may help with the pain.

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  • Posted

    Have you considered surgery? I cant imagine living that long with this! I think I have had it about 2 years, but was just recently diagnosed. I am waisting away and cant exercise as I would burn more calories than I eat! You cant live like that (17 years). what does your doctor say? Have you seen a specialist (GI) or surgeon?
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  • Posted

    Hi It must be dreadful going through all that and you have had it for a long time. Do you have any other

    symptoms sutch as bringing up white frothy stuff, this brings on dry heaving for me. Food also sticks in my chest.

    I am waiting for a Barium Swallow to find the cause of gagging/heaving Have you been offered an operation

    I have lost over 2 stone since this began a year ago, but my weight is steady at the moment.

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  • Posted

    Thanks for your quick reply so sorry to hear you have this condition I hope the Doctors don't leave you to long before getting you in to have it sorted, when I first started suffering from Achalasia I went from 7 and a half stone to 5 stone before the Doctors actually beleived I have a serious problem they kept saying I was to young and it was all in my mind, anyway 17 years later and my surgeon has told me that the HM op is the only thing left for me to try but he can't guarantee this will stop the spasms, because I live in Jersey I would have to travel to the Uk to have the op which is little inconvenient, but I have been reading a lot of comments with regards to the HM and I'm starting to think this is probably the best way forward, I am booked for another endoscopy in a couple of weeks and have just had another barium swallow, so once the results are back will discuss the possibility of getting the op done, thanks again and good luck x

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  • Posted

    Hi Tamara

    Thank you for your reply, I haven't been diagnosed with anything yet. I saw a speech and Language therapist yesterday and she said my swallowing is not a problem.The problem is food sticking in my chest..She said I need the Barium Swallow. I am hoping it is not Achalasia, It sounds very unpleasant.

    I Have read about HM and the people on here who have had this operation said it seems to work well for most of them.

    I wish you all the best if you choose to have the HM.

    Best wishes

    Merryl

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  • Posted

    Get diagnosed and get the surgery! It's the best thing you can do.
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  • Posted

    This is an unusual condition and I do not know how many people suffer from it in the Channel Islands, nor how they manage with specialist conditions, but my guess is that there will be links to mainland centres of specialism where you could either ask to be referred, or ask for a second opinion, if that becomes necessary.

    Some people find taking buscopan is helpful.

    There is a section on the OPA website (Oesophageal Patients Association) - go to oesophagus and then achalasia - with some notes from a meeting with Majid Hashemi, the surgeon at University College hospital in London, that may help.

    It does sound as if you might need surgery - but it is important to have thorough diagnostic checks first rather than repeating procedures that may not work for long. And one must not jump to conclusions about the best thing to do before you have been seen by the excperts.

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  • Posted

    Hello Alan M

    Could you tell me how Buscopan helps this condition

    Regards

    Merryl

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  • Posted

    I am not medically qualified, but, as I understand it, this can help deal with spasms. Your doctor would be able to advise you. I simply understand that others have tried it, with some success. But like all such things, take your doctor's advice rather than mine.
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  • Posted

    Hi.

    I had chronic pain post hellors op for years. I took all sorts of painkillers but got sick of them as none was totally effective..my pain was in chest and across diaphragm area....I had a course of acupuncture which was fab and did reduce pain to a lower level....Ihe only thing that I always fell back on was my TENS machine, it seemed to distract the pain to the stimulated area. Ift was most effective if I used it regularly.....I feel for anybody suffering pain.i had it for four years daily......I reach for TENS if it flares up now.

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  • Posted

    Has anyone heard of " self dilation ". SAw it on U Tube . People with esophagal strictures do it daily or every other day . I'm thinking , why not do it for Achalasia . I have Achalasia , my G I Doc never heard of it . Lets get thisgoing

    Bobby from Florida, U S A

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    • Posted

      Because achalasia is caused by the LES not working and it practically has to be "broken" to help you in any way and I don't think you should stick anything 7 inches down you throat and not worry about a perforation of the esophagus that will quickly kill you if not treated asap. That's what pnumatic dillations and the other procedures have a barium swallow right after and surgeons on stand by.   

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  • Posted

    I have not seen the clip, but if you have regular dilatations it tends to indicate that the procedure is not bringing about a longer term improvement in the condition. It can make the cells fibrous and thereby less amenable to procedures like the fundoplication wrap. So although you are talking about a non-medical procedure, I think you probably need to be careful about why the stricture has been caused in the first place.

    The aim surely has to be for expert diagnosis and the best treatment option first time round, if possible?

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  • Posted

    Hi, I'm sorry you're suffering so much pain. Your symptoms sound like mine and very typical of achalasia. The thing that takes the pain away from me on 99% of occasions is a fizzy drink. I always carry some with me because you never know when the pain will strike and I always have a bottle of fizzy water beside me at bedtime. A spoonful of Andrews Salts is amazingly effective too. Since stopping eating bread I've found that I don't get pain quite as often and avoiding eating late at night prevents the night pains as often. Hope this helps and hope it helps too knowing you're not suffering alone. 
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  • Posted

    Im a 33 year old man and have had achalasia for at least the last 6 years although it was only diagnosed in 2011 i had a few different tests like the one's you have all taked aboutt and then have the balloon dilation done this helped me loads at the time of my operation i weighted just 60kg (just over 9 stone) the most terrible time of my life, im now back to around 13stone but since the operation i struggle  to now even lose any weight,

    i take 20mg Omeprazole tablets that i take eveyday - it hasnt stopped the pain but they do help.

     

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  • Posted

    Hoping by now you have found some relief. My husband takes his "rescue kit". This is two ranatadine tablets along with two paracetamols and closely follow it a few minutes later with a gulp of gave son. He takes this (sometimes three paracetamol) as soon as you feel the tightening begin. He said whilst it will still hurt for half an hour, things will then begin to ease. Hope this helps x
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