Hi all,
I was diagnosed with achalasia 8 years ago now and would appreciate if anyone could tell me symptoms and problems that they have due to achalasia other then swallowing difficulty. Also how it effects everyday life and if it effects your work in anyway? I havent met anyone with achalasia before so would like to know how it effects others
I was diagnosed with achalasia 6 years ago. I had botox injections twice and eventually had the heller myotomy. The problem I have the most is the esophageal spasms. The pain is awful (I have a high tolerance to pain) feels like I am having a heart attack. I'm afraid someday it will be a heart attack and I will just assume it is a spasm. Achalasia doesn't really effect my life just need to stay away from certain foods at times. For instance I do notice that when I am stressed the symptoms are more intense. I can eat pretty much normal like everyone else, but when I am going thru a rough time in my life I find it difficult to get almost anything down and if i get it down it was a big struggle.
Does anyone else notice stress and symptoms worsening?
Hi, I was diagnosed with Achalasia approx 9 years ago. I have had 2 balloon dialations and ultimately a Hellers Myotomy and anti reflux procedure as the balloons failed. Since then I have some difficulty in eating but not much,I steer clear of bread etc, my main issue was massive weight gain from not being able to eat for 2 years to being able to eat almost normally again! My main effects during life are any throat infections take longer to heal and any illness that involve vomitting would cause me to sprain my stomach. However I have had another sympton which I liken to muscle cramping in my throat. Over the years these were mild and fairly infrequent however over the last couple of years they have got much worse and happen a couple of times a week at least and strike without warning. The only "cure" I have found for these is to drink Ice water and they eventually pass. However they have become a problem now to the extent that I have returned to my consultant for further treatment as they happen in the middle of the night disturbing my sleep and are happening at work alot. I don't yet know what this will be, I have had my endoscopy and today I have had a further Manometry and am currently having a 24 hour pH study. All in all it's a total pain but I have been able to deal with it more or less, it was just a case of knowing I needed more help and going back for it! Sorry for the long reply but I hope that helps!
Jennine
I was diagnosed with achalasia 6 years ago. I had two botox injections and eventually had the heller myotomy. The worse symptom for me is the esophageal spasms. It feels like I am having a heart attack and the spasms creep up whenever they want too. Sometimes buckles me to my knees.
Question for everyone else. Do you notice the symptoms of achalasia getting worse during times of stress? I normally can eat anything, but when I am going thru stressful times in my life I find it very difficult to get food down. It is a virtual struggle even to get water down!
Hello,
It took 10 years and almost as many doctors before I finally got the achalasia diagnosis. I had Heller Myotomy with partial funduplication in April 2006. It has been a success. I still need water with every meal and some foods are very difficult to swallow. (i.e.; raw unpeeled carrots & apples, steak, etc.)In answer to one of the persons who replied, I have noticed it most definately gets worse when under stress. In fact sometimes, during those times, I still cannot get food down, or if I do it sticks and has to come back up! I too, get the chest pain/ muscle spasms, and like the other respondent, it wakes me up at night. I drink ice water, eat soda crackers and if it gets too bad take a Diltiazem precribed by my doctor. I try not to take these unless very neccessary, as they are a med usually prescribed to treat angina (chest pain in heart patients). At my last doctor visit, he precribed Dexilant for reflux (taken before the evening meal). Seems to help some with the night spasms, but not completely. You have to pro-active in figuring out the triggers for these. Mine seem better if I avoid coffee and soda. I've switched to green tea, but usually only one cup, as sometimes two will set off the spasms. (and yea they really do hurt!!) I too recommend finding a great surgeon that is familiar with this procedure! I had mine in Denver, Colorado, but unfortunately, my surgeon had to retire!
I don’t think any doctor can give us answers, my doctor said that it might be degeneration of the nerves that innervate the esophagus, but he said that no one knows for sure what causes this. It is just nice to finally talk to others. This is a silent disease, because on body knows what we are going through. I was fairly young when I was diagnosed and I was the talk of the town. People said I was anorexic because my weight went down to 88 pounds and some people said I was bulemic. I had good friends talking behind my back and telling me I was making them sick when I couldn’t get my food down. Like I could help it! Nobody knows what we go through except us. Good luck and Good health to all of us. I am praying for us all!
i know im a little late here but i cant find another place for this topic… i have had 3 balloonings and h/m and doing ok for awhile but it seems to be coming back… but anyway it seems the couse of this for me was when i had been stung numerous times from scorpions and since scorpion parilize their food i was wondering if anone else has had encounters with scorpions and maybe a reason for this discese hopefully hear from someone soon either way… good luck yall.oh just in case my email is latigoe@yahoo.com im john l
I was diagnosed in 2004. Went straight for the myotomy and it brought me pretty much back to normal. I need to be careful with dry stuff (bagels, rice, etc) and can’t eat without something to drink.
I was diagnosed in July of 2003 and since then life has been full of ups and down with this disease. I am so tired of doctors and nurses thinking they know what we go through on a daily bases. I also am tired of them thinking they know what achalasia is, most of them will go there whole career and never have a patient with it let alone know what the disease is and everytime I go in I have to spell "achalasia" for them, really?? I wish they would admit they don't know what it is and they don't know how to treat me or anyone else with this disease, most of the time. There is so much they don't know about this disease and so much they need to learn. Us living with this are experts on the subject. My husband and I know far more then any health professional could ever know and then again I am the one who deals with this on a daily bases. And so do all of you. If is amazing how health professionals think they have the answer to our problem and that they have the solution. Well guess what achalasia is NOT curable and we will have it the rest of our lives. I have problems with eating, food getting stuck, throwing up alot, dehydration, painful spasms, aspiration pneumonia, sleeping on at least 4 pillows, girgling in my sleep when I aspirate food into my lungs. Oh the joys of having achalasia. Is there more,yes of course but you already have experienced alot of them so you know exactly what I am talking about. Best of luck to you all as you daily deal with this disease. We have to stick together and help others with this disease to equip us all with knowledge because "knowledge is power". And we are the ones who have to be proactive and knowledgable as to what we have and what has and hasn't worked on us. Blessings to my fellow achalasians and I will pray that you all have more good days with this disease then bad and that you also get the help you need and the right help when needed,:):)Anne
Hi: I was diagnosed with achalasia about 8 years ago. At the beginning was diagnosed with reflux. After losing about 30 punds, doctors tested the swallowing exam. It was so small, the food stayed all the way up, creating like a balloon; I has to take it out all. Doctors decided to inject botox in the sphinter nerve, because it was dead. The muscle nerve or (sphinter) is the one that opens and close the esophagus, to let the food go down. In my case the sphinter was dead. The botox injections to relax the sphinter never worked well and it was for 5 to 6 months duration. My primary doctor told me that the best option was surgery, a (Heller Myotomy). In some cases it doesn’t work well. I had no options, had to take risk so decided to have the surgery at the Tampa VA Hospital. The doctor had previous experience. To make it shorter, as of today, it was a miracle, as I always say. I swallow 95% normal. It took sometime to do it; but it is the only solution. I advice you to check for the surgery it the doctor or doctors has previous experience with thie type of surgery.
Thank you for the replies,
I do find mine is worse when I am stressed. I get a pins and needles sensation in the throat and a feeling of sufocation from the throat. Is this a common effect?
I have been out on a few occasions but am afraid to drink alcohol as I am scared it will make it worse. Is this something that anyone knows about? And also tight clothing making the pains and breathing dfficulty worse?
Sorry for all the questions but as I said, I have never been able to get advice about Achalasia or share experiences with anyone else.
Hello, Oddly I know 3 other people and a dog with Achalasia. I was dx in the 90’s, had a full Heller M wrap, only to have it un-wrapped 10 years later. I can’t count the number of balloon interventions, but only one Botex. Last year I was dx with “Gastroparesis, also called delayed gastric emptying, is a disorder in which the stomach takes too long to empty its contents.” I take a medication called Domperidone, not sure if it works, as I have yet to have a measured test since starting this medication… One of the best medications I found for spasms is an old anti-depressant called Nortriptyline. I take 10 mg (well under a therapeutic dose for depression) daily. It’s in capsule form making it easy to open and put in water. The nice benefit of this medication is, when I begin to feel a spasm, I can/will take this med, and my spasm usually is gone within a matter of a few minutes… … The downside of having Achalasia for 20 years is a higher risk of cancer, which is a newly discovery.
I was diagnosed with achalasia 6 years ago. I had 2 botox injections and finally had the heller myotomy. The only thing that affects me is the esophageal spasms. I feel like I am having a heart attack, hurts so bad it buckles me to my knees. I am afraid that someday I might be having a heart attack and think it is a spasm.
Question for everyone: Does anyone notice that the symptoms of achalasia get worse during stressful times. I can pretty much eat anything, but when I am stressed I find it very difficult to get almost anything down. If I do it was a big struggle.
After suffering horribly for two years I found a Dr that could actually diagnose my problem. I first had the botox injection and that only lasted for a week. I then had the surgery and am much better but still have some problems. The VERY best thing is that I can now sleep. I was only getting 2-3 hours of sleep a night because of choking.
Hi:) I’m on this forum for my brother, he suffers from achalasia for 2 year now and only now he was diagnosed.
i read your comment that you went through the surgery and i wanted to know more about it becuase my brother’s considering this procedure.
thank you!
Hello,
I had a Heller Myotomy 10 years ago. I’ve had good results so far. Having a surgeon who is very experienced with this specific procedure is critical. I’d encourage him to check out Achalasia support groups on Facebook- there are several. Some also have their own websites. He can get so much information and support. Sending healing thoughts.
I agree, I had Heller Myotomy with fundoplication back in 2012 and in relatively short time, my symptoms totally resolved themselves and I was able to enjoy life again. It is very much worth this procedure to bring back normalcy from a painful disease.