Patient Comments: Achalasia - Describe Your Experience

Please describe your experience with achalasia.

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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Comment from: Diane, 55-64 Female (Patient) Published: April 21

The first symptom of achalasia for me was mucus in my throat and not being able to clear my throat to speak. I had the barium swallow, a gastroscopy and endoscopy. In the past few months I've had trouble swallowing dry foods and most recently sometimes even liquids. I have to drink water to get the food down. The mucus problem has increased also. I will be having surgery.

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Comment from: lizhjohn, 75 or over Female (Patient) Published: March 30

I have had difficulty in swallowing for some time. My gastroenterologist discovered achalasia before I even became aware of it after having an Upper gastrointestinal endoscopy. Once a year they stretch my sphincter ring as I understand, during a yearly endoscopy. I also have GERD, not sure why. I take medicine for GERD but not for the swallowing. I had numerous tests last year, one of which was the Barium swallowing test. I had developed a severe cough that at the time could not be controlled.

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Comment from: Dan, 55-64 Male (Patient) Published: March 16

Sixteen years ago I progressed to a stage where I could not eat a meal, drink liquids without regurgitating them. I would wake up at night coughing due to liquid/food going into my lungs. I could not go out for dinner unless I could find a table near a toilet, when the food and liquid came up I had to move fast to prevent it from being expelled all over the floor. I went to a surgeon who did a barium meal (swallow) and a scope test. He identified it as achalasia. The decision was to use the balloon, which was followed up 3 months later with another expansion. Although I am not a 100 percent cured, I have modified what I eat and how fast I eat. No starchy foods such as bread, potatoes and even chicken. No fizzy drinks. I eat slowly, I used to be one of the first people at the table to finish my meal, now I am always the last. I always have a glass of water at ambient temperature, with each meal. I eat my evening meal early followed by a cup of tea, this seems to aid passing the food through the narrow opening. The top of the bed where my pillow is, is raised by 3 cm. With these changes I have no problem sleeping due to food flowing back up the esophagus.

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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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