Patient Comments: Achalasia - Describe Your Experience

Please describe your experience with achalasia.

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.

Was this comment helpful?Yes
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!

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes

Patient Comments

Viewers share their comments

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?

Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on MedicineNet. The opinions expressed in the comments section are of the author and the author alone. MedicineNet does not endorse any specific product, service or treatment.

Alert If you think you have a medical emergency, call your doctor or 911 immediately.

Report Problems to the Food and Drug Administration

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.