Patient Comments: Achalasia - Describe Your Experience

Please describe your experience with achalasia.

Comment from: Jessie, 55-64 Female (Patient) Published: June 01

It is a pain. I find that chamomile tea helps a lot when I get an achalasia attack. Along with white saltine crackers or a piece of white bread. Along with Tums and Gaviscon. Ugh. I also have a do-not-eat list, so far it is limited.

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Comment from: revlinda, 65-74 Female (Patient) Published: May 14

I was diagnosed with achalasia in 1994. I was given nifedipine as a treatment and have been taking this medication since. I have minor side effects and have never had surgery (which I wished to avoid). My physician at the time said that if this works he had patients that had taken this medication for 10 years and it was still effective. I wonder if there are more people than you know that use medication long term.

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Comment from: Miguel, 55-64 Male (Patient) Published: February 04

I had been suffering with achalasia for a few years, and in the last year it has gotten worse. I could not sleep normally due to severe coughing that was caused by fluid in the esophagus entering in my lungs. I lost over 50 pounds over 6 months. I was afraid to eat due to the regurgitating. I went to the gastrointestinal doctors and they informed me that the best procedure to perform was to have the operation to cut the muscle and use part of my stomach to repair the esophagus. My surgeon performed a laparoscopic surgery. I was home the next day and return to work in 3 weeks. I am eating sensible and enjoying my life.

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Comment from: Butterfly, 45-54 Female (Patient) Published: February 02

I have had my esophagus stretched three times now and felt some temporary relief from achalasia. I have lost weight quickly and it sometimes feels like fluid is going in my lungs at night, this is a very scary and painfully exhausting problem. My doctor just keeps telling me there is scar tissue in my esophagus. I noticed the problem developing after a neck injury from a car accident 5 years ago but it was never proven related. I am sorry for everyone that suffers with this problem I would not wish it on my worst enemy.

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Comment from: bobby$m, 55-64 Male (Patient) Published: January 20

I was first diagnosed with achalasia when I was 29. It did not take long for me to be diagnosed (about 2 months) after the normal tests. I had a bougie and two dilatations without any success. I lived with the situation for 7 years losing a bunch of weight. I was able to push the food down with tons of water. I also found that walking around helped sometimes. I also took Procardia to help relax the sphincter muscle that helped some of the time. I found that a cocktail or two before dinner also helped (when I did drink). In 1992 I woke up with chest pain one morning. I went to my doctor who ordered a chest x-ray. My esophagus was totally expanded. I was referred to a new gastroenterologist who told me to use the Procardia under my tongue. That gave me relief. He performed a dilatation that helped me for 23 years. I gained a bunch of weight (too much actually). I have had recent problems. He tried the botulism therapy, but it did not work. It has been getting worse and I had a new bunch of tests. I now have stage 4 achalasia and they are going to do a Heller myotomy. They may have to do an esophagectomy. Don't wait to do the myotomy. It could help to avoid my situation. I thought everything was okay, but my esophagus was expanding without me knowing. I find that room temperature water helps, carbonated liquids help (like club soda) at night.

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Comment from: Steve, 55-64 Male (Patient) Published: January 12

I started having swallowing problems about five years ago, mostly pain and pressure in the chest. I was initially diagnosed with GERD, but went to a different doctor and was properly diagnosed with achalasia. I had the Botox and had immediate improvement. As you know, however, that treatment is only temporary. I had a myotomy in May, 2013, and the results have been fantastic. My weight went from 98 to 128. No issues really. I am very happy I had it. I had the VATS (video-assisted thoracoscopic surgery) procedure and spent three days in the hospital and a few weeks to fully recover. I went back to work in a week. Have the surgery, it is well worth it.

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Comment from: jan scoatt, 65-74 (Patient) Published: December 30

I have suffered from achalasia since I was a small child although I was not diagnosed until I was in my 40s. By then so much damage had been done that it was hard to control my symptoms. I had the dilation by balloon and it split my esophagus and I spent 4 weeks in the hospital. After that it was just treating the symptoms. Three years ago, I had the Heller surgery. It was really bad and my recovery time was horrible but after that I felt so much better for about a year. Now we are back to square one. I know I am at the end stage of my disease as well. I am currently 88 pounds and also have COPD. This disease is horrible and if not caught early can make your life miserable and eventually end it. I wish good luck to all of you who are contending with it.

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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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