Patient Comments: Achalasia - Describe Your Experience

Please describe your experience with achalasia.

Comment from: add2370, 45-54 Female (Patient) Published: December 29

I had initial symptoms of achalasia at age 17 to 18, in 1987-88. It was labeled as many different things, but never had an appropriate diagnosis until other symptoms began to appear fifteen to twenty years later. These symptoms led me to a 23-hour observation that turned into 7 days. Finally I was diagnosed with achalasia at age 34. Mine was far gone enough to go straight to the myotomy/fundoplication surgical procedure. Following this surgery, I was able to lay down and sleep flat for the first time in nearly 20 years. Now, 11 years later, I am seeing a recurrence of symptoms, so I now need to go for a dilation. To anyone needing the surgery, I had a great experience with mine. I was told it may not be permanent and may see symptom recurrence after ten to twelve years, so it's right on track. I was on soft foods/ Nissan diet for a couple of weeks and then I went for my first steak in almost two decades. I was able to eat it and enjoy it. I too found that dietary changes often helped but only sometimes. Often icy cold water helps but not always. Some days, the throwing up helps more than others. But it is the nature of this illness.

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Comment from: JMB, 35-44 Female (Patient) Published: November 04

I was diagnosed with achalasia soon after the birth of my son, 12 years ago. I was showing symptoms as long as 15 years ago. I had two series of Botox injections that failed. I had a Heller myotomy that failed as well. Currently I take nifedipine to help me eat and drink. I developed aspiration pneumonia in 2009 but wasn't diagnosed until 2010. Despite many efforts to cure my incessant cough, I kept being handed Z-Pak and allergy pills by the doctors. A visit to the emergency room one morning finally led to the discovery of pneumonia. I have good days and bad days. I have severe body aches at times, stomach pain, joint pain, and there is never a trigger for any of it. Stress control is mandatory with this disease; if that's a thing. Esophageal spasms occur every single day. Sometimes hundreds a day, sometimes only 10 or so; that's another thing, no two days are the same. If I could eat eggs today, there's no guarantee I could eat them tomorrow. Literally the only peace I get from this disease is when I sleep. The hardest part of this disease, is watching my family watch me. The pain and worry in their faces shatters me. Being overweight makes this disease invisible to most people. They look at me and see a robust woman. But my body is stuck in this weird starvation mode and holds on to everything I eat. It's hard to describe to someone what it feels like to not be able to swallow even water sometimes. No one gets it. They can't unless they're going through it too. So to the next sufferer that reads this, good luck. I hope you have a family like mine that supports you.

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Comment from: Liz, 25-34 Female (Patient) Published: October 21

I have been dealing with achalasia for about 3 years now. It started very mild, and I noticed it when I was out eating a big burger with a beer (I know now why it triggered a spasm) but over the years it progressed to almost every time I eat. Sometimes I can't even get water down. At first I thought maybe it was some type of eating anxiety but it got to the point of waking myself up regurgitating so I went to the doctor. I had already self-diagnosed myself but hospitals always have their procedural way of doing things. After lots of testing they diagnosed me with achalasia. I got a Botox injection which helped for almost a month but the achalasia creeped back in. I am scheduled to get a Heller myotomy on November 12th and I am nervous but so excited. Thank you everyone on this site for sharing your experiences! It has helped me cope with the frustration of this issue and help me know that I'm not alone in my struggles. Wishing you all the best!

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Comment from: tiredofthis, 55-64 Female (Patient) Published: September 09

I was just diagnosed with achalasia. Like others I have read on here I have lost 25 lb. in 4 months; which I didn't have to lose in the first place. My biggest symptom is the burning in my throat and mouth and chest pain and I am wondering if anyone else has had this. I had been treated for GERD for a year and a half and no medications have helped. The doctor now wants me to have the Botox injection.

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Comment from: Wayne, Male (Patient) Published: July 02

I have been dealing with achalasia since 1996, almost twenty years now and had numerous dilations, a Heller myotomy and I'm at the end stage of the disease. I was faced with the removal of my esophagus 18 months ago but the surgeon repaired another hernia and life goes on with the daily struggle. However I can say I did not want my esophagus removed hoping one day there will be a better method of dealing with this disease. But weight gain is your enemy; your diet is critical and during bad times I drink calorie loaded protein shakes. I'm hoping to delay the removal of my esophagus a few more years but it is very soon as my latest CT scan again shows the amazing drip of barium instead of a normal flow. Throwing up food is so normal, it is just a way to relieve the pain in my chest. I hope all of you continue to improve, I hope they one day provide us all a cure.

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Patient Comments

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Achalasia - Causes Question: What was the cause of your achalasia?
Achalasia - Symptoms Question: What symptoms did you experience with your achalasia?
Achalasia - Treatment Question: What treatment was effective for your achalasia?

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