I've had Achalasia for almost 10 years now, and I am trying to get some questions answered. Anyway, I am wondering about this pain that I get maybe every two weeks or so. It is a very severe pain. I feel it all over my chest, and sometimes in my neck and head. When I first started experiencing this pain, I would drink a couple glasses of water and it would go away. Now, it is harder to get it to go away. Water does help but only temporarily. I've started to eat full packages of saltine crackers when this happens, and I feel like that helps. It still takes a while to go away though.
Anyway, I don't know if this is a muscle spasm or a very very severe acid reflux, or maybe a combination of the both. Do you guys have any insights on this? Also what do you take when you have muscle spasms and/or acid reflux?
As soon as you feel the pains starting drink very cold whole milk. Drink until the pain completely stops. Usually it takes a whole glass. This should work.
That is a very good question..it is so hard to distinguish what is what for me often with nurses and doctors.
If you are not asleep..I would contribute chest pains from the sphincter not allowing food and lquid to go past it...the build up occurs in your esophegoues and presses up against your heart to create angina chest pains/spasms is my issue.
It gets worse depending on how much the sphincter tightens and lack of water causes mine to be worse...so I ice my chest and hydrate with fluids even though it does not stay down.
I also try to walk it off ..but be very careful..your heart really is having difficulty because of the pressure of swollen sphincter with debris in it.
But when you are asleep..I have had acid reflux go all the way to upper sphincter located below mouth..it made it impossible for me to swallow or breath for about 1 minute was very scary.
I also get acid reflux while sleeping that sends food and liquids into my lungs causing me to pass out if not quick enough. Usually I wake up covered and then try to get iot all out of my lungs by cough or vomit.
Sleeping upright..not eating 3 hours before bedtime helps with this type of acid reflux.
Not sure what causes others spasm/pains for sure..I do not buy that everything is acid reflux like most doctors say...
I have lived with this my entire life and know the difference between acid reflux burn and an angina heart attack from debris in my esophageos.
Hi Aaron. I had esophageal spasms for many years prior to having swallowing difficulties, regurgitation, and the diagnosis of Achalasia. In the beginning, I was told it was due to acid reflux and I made adjustments in my life that only seemed to help marginally. At a later point, I experimented with taking PPI's twice a day for a month. I had the spasms just as frequently as I had been before taking the PPI's so I stopped taking them. Then I had an endoscopy that showed there was no indication of reflux damage. This has led me to believe that they are not caused by acid reflux. However, I also have noticed that sometimes they occur when I bend over or move quickly, which makes me reconsider acid reflux as a possiblilty. I've wondered if there could be a small amount of reflux that triggers the spasm at times but that perhaps food particles or something else triggers them as well. Some say that stress can play a role. I wonder about adrenaline or something like that but don't know enough about biology to know if that would make sense. I've also considered it being related to trapped air, akin to hiccups. (which may be why drinking water can help as it does with hiccups.) Anyway, I think that it's, unfortunately, a bit of a mystery. At this point, drinking water works for me. I've also started to drink water first thing in the morning when I wake up in case it has to do with dehydration. (We get dehydrated over night) And I've started the Autoimmune Paleo diet. Eliminating grains may also have been helpful to me because I haven't had a spasm in two weeks ( I was getting them every three days). Now, I've gone for weeks before like this, so it could be sheer coincidence. But I'm into trying everything to try to solve this painful mystery!
Aaron, hi I am Jamie from the states, thanks for having me be a part of this discussion. Your spams are directly part of the achalasia. I have A111 with spasms! It feels like you are having a heart attack huh? They are painful but what I do is try and meditate or relax as much as possible. I have noticed the more I get panicky the worse they can be. I am glad that the milk works for a lot of you but there are some people that can't get anything down. This is a progressive disease I know you know that and I hope that in the UK that you have informed Doctors. I have spent endless time researching this and reaching out to others that are with this disease a different levels. I have seen some of us go through the worst and have to have the esophagus replaced and come out on top as a well balanced body builder with a great attitude. Others not so much! What I see about your group is openness and greatful for info. Keep your throat warm, drink room temp water and plenty of it and find a healthy diet. Leg me know how you are doing ok? You friend Jamie
sameeeeee problem aaron. i had achalasia since 5 years, I get the same kind of pain once in two weeks, when i drink a glass of water i goes away, but there are days when the pain doesnt reduce for the whole day. i feel its a clear acid reflux. i stopped having oranges and all citric stuff. i suggest u to have 1/2 litre water in the mornings, and no spicy stuff encouraged. AND I RECENTLY STARTED HAVING COOL ICECREAM WHEN I GET UNCONTROLLABLE THE PAIN AROUND THE CHEST, IT WORKS try it.
HI Jamie..I am also from the states and glad you brought up milk.
I also have difficulties getting it down.
Sometimes I do what I call"binge eating" eating anything and everything that my mind says looks good.
Sometimes my best weapons are chocolate pudding with whip cream to open sphincter to allow milk to go in..
It might not all stay down..but I equate it to dinosaurs using rocks to digest food in their stomachs..pudding is basically crushed bones..is lubricates the throat and helps digest food downward towards sphincter..and then chase it with a shot glass of milk...repeat until success.
As far as trash eating..soup is cheapest..I make a mean spinach cheese soup..make sure you have the soup hot enough boiling point before adding cheese is secret.
Anyone else have had to improve their cooking abilities and have great things that work for them?
Hi Aaron, I get this all the time. I too have had achalasia for 10 years. I had a Heller Myotomy with a partial fundoplication soon after i was FINALLY diagnosed. I have had the pains the whole time but they seem to have gotten worse and more frequent over time. As a former paramedic that was familiar with heart attack symptoms I can only compare the pain to a heart attack (symptomwise, not from experience). The pain is sometimes my whole chest, one side, or right in middle and often radiates into my left or right jaw. I have NO idea why and none of the doctors can be sure. After staying away from GI docs due to frustration in their lack of knowledge masked by arrogance, I finally, after 5 years went back. Same thing so far but at least this one is going to refer me to Dr Richter at USF in Tampa, Florida USA who is known to be an expert in achalasia and the esphogus. Luckily this is only a 2 1/2 hour drive for me once an appointment is made. I don't know what will become of it and don't expect much, I am trying to avoid another manometry as I would rather have chest pains forever than experience that horror again right now as well as medications daily. I take 10 mg nifedipine when I get the pains and often pop the capsule for a quicker effect. It works but leaves me with red feet and a lingering headache. Sometimes just the water works, and sometimes I use pepto or mylanta in case the pain is from old food fermenting in my esophogus. Since I don't know what it is I use the above methods until it goes away. I have come to tolerate some major pain but worry that someday what I am having will be a real heart attack and not just a chest pain episode. If I ever find out what it is or if the specialist of specialists helps me I will share with everyone!
Another couple of things that have helped me that might help others:
Start a food diary of when you take your pills..what foods you do good with..
How much comes up etc...you can share this with doctor too..but its mainly for you..keep track of your weight too.
Taking your mulit-vitamin everyday is also IMPORTANT to supplement those bad days.
The way the milk trick works is it will hurt..but try your best to force it past the sphincter..give up if too painful..try 2-3 times..sometimes by my third try I sense a little went down..and all of a sudden 4th opens it up..and that is HEAVEN..eat but not too much your stomach is small now.
Also how do you know if something gets past sphincter?
That is determined by your output...very little or either shows where you are weak and need to keep trying even if you are failing.
But after 3-4 times I usually even give up and try next meal.
This is a very expensive disease..and requires trying a little of this..that ..
I sometimes eat starwberries,,grapes..also marshmellows help me fill the void of hunger.Then I try crackers w/ cheese.....then a soup..then chocolate..milk..and fluids always. All of this in one sitting...just a little of each not too much.
I am scared someone might suffocate and die with milk trick so try to force it but recognize the pain and stop when no success.
I think we have to be careful in this discussion to differentiate between Achalaia type 3, where spasms accompany swallowing (from what I've heard, I have type 2) and spasms that come on at times other than swallowing. For me, spasms tend to occur in the mornings before eating or drinking anything. They can also come on at any time of day. I think this condition may be called Diffuse Esophageal Spasms and some believe that this condition either leads to Achalasia or is an early symptom. Doctors seems particularly ignorant of the connection. So, Aaron, which type do you have?
One resource I've found very helpful is a facebook group called Living with Achalasia and monitored by a doctor (chiropractor) named Steven Horwitz who has Achalasia. He has also written a book that is full of information about types, treatments, alternative methods, etc. I would recommend joining this and downloading this free book.
Aaron, it can be both because I have had both. I was able to get the acid under control with diet but the spams I can't track and figure out the trigger. I know that there must be one but look as time goes on depending on where you are in this horrible disease they could both get better with a little changing in diet. I promise this has been the hardest for me yet but we have to stick together to find out what works. Thinks of you all Jamie
So, Jamie, you say the pain can be both but it sounds to me like what you're saying is that your spasms are independent of acid reflux. If that's true then there's another trigger or triggers that bring on the spasms and acid reflux has nothing to do with it. Or are you saying that you think the relfux was one of those triggers? Have you noticed a reduction in spasms since you've treated your acid reflux?
Asynchronous / vigorous contractions in oesophagus)
Failure of LOS relaxation
Surgeons are wary of putting too much emphasis on what type it is, and I have seen Type 1 described as absent peristalsis; Type 2 - pan-oesophageal pressurisation; Type 3 Spastic Achalasia - preserved peristalsis with simultaneous contractions.
There are also motility disoorders that are not achalasia.
I realise that this does not answer your question in any way that you would have wanted, but it does emphasise the importance of concentrating on your own signs and symptoms and being aware that what works for some may not work for others.
Aaron, I am having trouble getting my info to you on this page but here goes again. I have type 3 Achalasia with Dysphagia and nutcracker spasms. I hope this helps you to understand where I am at with my disease. I am quite acclimated to it not because of Doctors but because of books that I have read and friends like yourself. In fact my Upper GI Dr. Bacically said that your on your own because he can't support it! Lol we know more than the Docs here and it's true dedication by people that have been there and done that. Let me know how you are and if you have other questions thanks Jamie