who has Achalasia ? and pains do you get.
hello.
i have achalasia and had open myotomy 3 years ago and 2 months prev to that i had the balloon dilation which obviusly only worked for a short time.
i have found this site because to this day i still get really bad pains and i mean bad to the point where i have to sip water which limits the pain till it goes. the pains can last for any where to a minute or two up to a few hours and god help if i dont have anything to drink immediatly im in agony.
i still cant really find anything on the internet about pains after the operation so thought i'd reply to your experience in the hope that others will share thiers to, i was starting to think that maybe it was caused by something else but the doctor just said its to do with spasms due to the achalasia. not very helpful.
My son was surgically treated for achalasia in March and has recently started to get pains. Again the GP was no help....any ideas what this might be?
i had big op in 1990 when i was 19 worked pretty well have to eat with a big glass of water as food still sticks but not like before hand nothing stayed down. the pains that we get go away if you eat a banana i allways have one to hand because nothing else gets rid of it?
hello,
i was diagnosed with achalsia feb 07. It came on quite quickly and got progressively worse. I've had one balloon dilation, which worked very well for the first six months. It has now started to get worse and my Dr's are considering a heilers myotomy. I want to avoid this as long as possible. As long as i can keep some food down i'm happy.
I suffer from lots of pain, and it's nice to hear that i'm not the only one. I thought it was just me. I to can experience it for a few mintues- to few hours. I take water with me everywhere as it's the only thing that seems to alleviate the pain. I also use a hot water bottle/wheat bag (when indoors!!), and place it betwen my shoulder blades. It's like a muscle is in spasm, but no one knows why!!. Am glad to hear it's not me going crazy
Hi,I was diagnosed with achalasia in 2003 having suffered to the point of weighing a mere 5stone 10 so ill but gp telling me it was imagination and stress after giving birth to my third child , I had dilation and so far so good ,however I am suffering agony at the moment and also have the need to take water out with me everywhere I go, Ithought it was just me who suffered like this,you cant imagine the agony unless
you have experienced it can you? Hope you feel better soon x x
I was diagnosed of achalasia in 2002 at 17, first noticed symptoms of hiccups every time I ate at 15. Eventually got my diagnosis and had two dialations, both unsuccessful, and had the hellers op in 2004. I do still suffer from the chest pains. I didn't know what it was and as a consequence sometimes suffer panic attacks too. Attacks last a few mins to a few hours. I can go months without pain and then have lots of attacks all at once. Doctors told me they didn't know what caused the pain, it was most likely spasms of the throat or food decomposing in my throat. Ice cold water and deep breaths are the only relief.
I get extreme stabbing pains between the shoulders , and sometimes in the stomach . They wake me up in the middle of the night and can last from 15 mins to 3 hours !!!! :shock: I used to just try to jog through them but that became increasingly difficult ! :cry: I now use gaviscon double strength which has helped . 
Ive been perscribed Tramadol for my chest pains and also an angina spray. The tramadol helps but it makes me so sleepy i have to spend the rest of the day in my bed.
I have been suffereing with chest pains for about 10 years and only this week have had a diagnosis! I have always carried water round with me to drink at first sign but on honeymoon I was out and aboutn and I had no water and had horrendous pain. It went eventually but I thought I was having some sort of heart attack. I sat down on the pavement and sent my husband to buy water!
warning: tramadol is classed as a narcotic in america. it is highly addictive and theres a good site called emilys post at tramadol withdrawal if you have been prescribed it.this site saved me....
my story..
IM AN ACHALASIA SUFFERER.
I was diagnosed after my third child 3 years ago. I had the hellers myotomy op with fundoplication, September 2008.. i have suffered chronic pain ever since, 24/7. i was prescribed TRAMADOL in hospital and decided in jan 2009 to stop it as id stopped the df118 and pain settled a bit so thought i could stop cold turkey.WRONG.IT WAS HELL..
During the four months on it.i couldnt drive, work, as pain was really bad. I thought i was just recovering from operation and that something had gone wrong, although consultants and g.p. was no help to me at all.
I stopped the Tram.. and ended up in casualty as pain was excrutiating, but instantly i felt a cloud had lifted so new they hadnt been good for me. Anyway i read about tram,came across the website and realised I was hooked on them. doctors dont believe they are addictive..I know different. I restarted then and began a long weaning process, the hell was worse coming off them and i suffered for another two months.
They escalate the pain so you need more and then your hooked..We are limited to our presciption doses in england, but americans etc are on whopping doses.
I had that to deal with as well as the achalasia. My swallowing improved but the pain continued, across my chest and diaphragm.It was made worse by driving, cycling and didnt relate it to swallowing.
I got a second consultant opinion but they are baffled.
Where im at now...my pain has settled again. I stopped paracetamol and ibuprofen 6 weeks ago..Ive been taken them every day since the op. I have had to start drinking a lot of water again and have recently vomited for the first time since my op. im back to where i was before the op, with pain.
my consultant wants to do a dilation. I think not, couldnt go through any more.
This operation has blighted my life for the past 16 months, made worse by tramadol and the ignorance of doctors.Without that drug .I think, in fact i know my recovery would have been quicker and so differnt..Be very careful.
i had heller's myotomy around 16/17 years ago and my life has improved enormously since. I do still get pains, sometimes trapped air, sometimes reflux and very occasionally the muscle spasm. Sometimes it's difficult to tell which is causing the pain. I used to drink water to stop the spasms or eat a small piece of chocolate. Now the thing that works best is alcohol (spirits), nothing too gassy with it, and now I manage very well because of it. It must relax the muscles quickly as it seems to work very fast. Not ideal for many I'm sure, but another option.
I am from the US. I was diagnosed with acalasia about 20 years ago. I was about 20 years old. They had a hard time diagnosing me bc at the time it was very rare in young people. More common in seniors. They put me on procardia, which is a heart med, but it helped relax the smooth muscle of the esophagus. It eventually got worse. 11 years ago I had surgery. I had heeler's myotony. They removed my sphincter from my esophagus to my stomach. They then wrapped my stomach around the esophagus. I was decent for about 8 years. I would go in every year or 2 for a dilation of my esophagus. It wasn't 100%, I still needed a lot of water to help get my food down. Sometimes I would have to stand to get my food down. Over the last 4 years it's getting really bad again. Very very hard for me to get food down. I vomit at least 3-4 a week. It's not actually vomit because its the food coming up from my esophagus not my stomach. The food just won't go down so it comes back up. I had an endoscopy in oct 2013. The dr used Botox on my esophagus. It didn't work. The dr doesn't want to dilate me any more. He is worried about scar tissue and tearing my esophagus. He referred me back to surgeon who did my first surgery. I am going this week for a consult. I really have no other option. I am in a lot of discomfort.
Anyone have any info that can help me? Anyone else having the same problems? I love to eat but the thought of eating makes me "sick"
Hi. I see that these other posts are from over a year ago so I hope that there are others or the same people out there to respond. I've had esophageal spasms for many years and was recently. Diagnosed with Achalasia. I'm considering the Hellor Myotemy but am mostly concerned about the spasms. My biggest fear is that they will get worse, not better. Any suggestions?
Hi there, I'm glad to see there is a recent post. I was diagnosed with achalsia in Feb 2005 and by July had the Heller myotomy. Things were going well but slowly, I've been bringing up my food. I've been getting pretty chest pains too, I'm currently having an episode now and it's lasting 3 hours and counting. I don't want another operation but I want this pain gone. I don't know what medication I can take. The pain is unreal, sometimes it goes up to me right jaw.
Because of my work I don't get to eat dinner till late- and since I have to end up eating quickly, is say I end up regurgitating half of it. And if I eat late at night I end up waking up with chest pains. When I am in such agony the thought of eating fills me with dread :-(
Hi Pauline, I too had my Heller Myotomy in 2005. It Helped with swallowing but I roo suffer the pain that radiates around my chest and into my jaw. It mimics a heart attack and I think if I were actually HAVING a heart attack I might not know the difference. I usually take my 10mg of Nifedipine when it gets bad aND water doesn't work. I haven't been seeing a GI because, to be honest, I find that they just don't know enough about achalasia to be any help with the pain. I still regurgitate every so often but I have the pain multiple times weekly and often notice it more at night keeping me awake for hours. I am finally going back to a new GI Wednesday the 22nd to see if there is anything we can do about this pain. Although I don't feel too hopeful I guess I should make sure everything is ok, I'm sure they will so a scope. just thought I would write and tell you that I totally understand exactly what you are going through. It can be hell sometimes 
Hi Amy, I had the Heller 10 years ago and it was a miracle to me because I could finally swallow again. Before it I couldn't even swallow WATER! I still have food get stuck and sometimes have to expel it from my e but that isnt very often. The downside is, it did nothing to help my chest pain. The only relief I get is drinking water or taking my Nifedipine 10mg. If the pain is really bad I puncture the capsule and squeeze it under my tongue. I hope you consider the surgery as it will help your quality of life and you will finally be able to eat a meal without repeated trips to the bathroom for relief. I wish I had better news about the chest pain though. Good luck!
I had the Heller 10 years ago and still get food stuck from time to time. I take 10mg of nifedipine. It usually helps a lot!
Hi Mish,
Thanks for your reply. Do you mean you take the Nifedipine whenever you get your chest pains? How often can that be? I didn't think you could take it long term. I had awful chest pains last Tuesday which lasted 4 hours and nausea which lasted until Friday- was so worried about eating in case I regurgitated it up. Would you ever consider having the myotomy again? I had a dilitation in 2011, it worked for a while, but it's lost all effectiveness now.
How I wish I could just easily eat instead of contorting my face and thumping my chest during meals!!
Yes Pauline, I take it whenever water doesn't work. It relaxes my esophagus enough to let some.of the last food down or stop the spasms. I only take it when I really have to. I can have a bottle of 30 pills for a few months. Since it lowers my blood pressure, which is low to begin with, it can make me a little uncomfortable for a while once it hits, but I've gotten used to it and honestly can't make it without it. I often worry about regurgitation when taking it so I take a pin, pop the capsule, and squeeze it under my tongUe. Its extremely bitter but a welcome relief much quicker than swallowing it. I ALWAYS have one with me!!! It just depends on the pain, its amazing how tolerant we become with the pain of this disease. I don't think a lot of people can handle the pain we do as often as we do! Try the nifedipine (the brand name is Procardia) and see if it works for you. I hope it does because there isnt a permanent solution for this awful disease, all we can hope for is effective management for the best quality of life we can get.