DIFFUSE ESOPHAGEAL SPASM- FEEDBACK-

Dear Robert,

Drop a letter in the mail to the CEO of the hospital re the radiologists unprofessional treatment of you.  If you don't report it, this person will continue to treat patients poorly and patients deserve dignity.

I do not have your condition, sorry.  But on behalf of the medical professioanl, I am sorry you ran into this person who lacks a bedside manner.

Take care.

Kitt

Hi Cathy--thanks for the support----my esophageal spasm...feels like i have swallowed a small .."ping pong" ball.....that's Sllooowly moving up & down my esophagus----Dr. gave me NULEV--under my tongue--"ant-cholinergic" (anti-spasmodic)----works well---Hope that helps--Wotan (Robert)

I have had esophageal spasms for 18 years; they started with waking me up between 2 and 4 am and would last 5 to 10 minutes. I was able to use nitro quick and a calcium channel blocker to control them for the most part. When a spasm would start I would eat something and drink and that helped as well. Over the years the intensity and the length of time have gotten stronger and lasting longer. For the last 6 months I have had them so bad that they are lasting between 3 and 6 hours now. The nitro and the channel blocker are not helping. I have had a motility study done and the conclusion is that my spasms are not caused by GERD but with the functioning of the esophageal muscle. I have been to 6 different GI docs and as many cardiologists since they would go back and forth on whether it was the esophageal or if they were caused by coronary spasms. When ask to rate the pain on the scale of 0 -10 I tell them a 25. I have a fear that one day I will have a real heart attack and think it is just a spasm and not do anything since going to the ER is a joke. My family doctor has given me Lortab to help with the pain. My GI doctor told me yesterday that they have done everything medically that they can do, so he is now suggesting going to a pain clinic which I am not real excited since they give pretty strong drugs but in the same breath I can’t bear the severity of the pain. My GI doc says I am one of the worst cases that he has seen and that is so depressing. They have stretched my esophagus and that did not help, I asked about surgery and he said that would cause the pain to get worse. This problem has caused my family big adjustments; I am stuck at home most of the time anymore. This has been so bad that I have had to go on disability since the pain is daily and was happening at work and my co workers want to rush me to the ER. Then to help with the pain I take Lortab so then I can’t drive. I have applied for Social Security and have applied for my long term disability from a policy I bought. What is most frustrating is that most people just do not understand they look at you and think you look fine to me. With the onset of the more intense esophageal spasms I have developed an appendicitis type pain in my right side. I have to the ER a few times for that now the GI docs are back and forth between IBS and IBD Cohn’s, there is even questions it they are tied together somehow. I am tired of taking a handful of pills each day. As I realize that is problem is more common that I realized you would think that someone would come up with something that works. So with the long drawn out story does anyone have any suggestions?
Ken

Peppermint Oil!

I started having symptoms of esophageal spasms about 6 months ago. Horrible chest pain and lots of burping generally an hour or two after meals. It got so bad that I went to the ER thinking I was having a heart attack, but all tests came back normal. My primary care doc thought it was acid reflux and put me on omeprazole and a GERD-friendly diet to no effect. The chest pain and burping continued and got worse after every meal, seemingly regardless of what I ate. Finally, I went to see a GI and he diagnosed me with esophageal spasms. He mentioned a few prescription options, none of which sounded to promising, but he said the simplest thing that seems to work for some people is peppermint oil.

After leaving the GI office in the morning, I stopped in a local Vitamin Shoppe and picked up a bottle of Pepogest, which is basically peppermint oil capsules, for $10. I have to say I was quite skeptical that these tiny, non-prescription, pepperment oil pills would have any effect at all. But I gave it a try - I took my first pill just before lunch. I have NEVER in my life had any therapy work as quickly as the peppermint pills did. All afternoon, I had almost no burping and much milder chest pain. I was amazed. I kept taking the peppermint oil before each meal and within a couple of days, I felt completely normal again - no abnormal burping, no chest pain!

I continued taking the peppermint oil regularly for a few weeks and then slowly tried going without it. I seemed to be fine without it for a while, but just last week, the spasms came back, so I started taking the peppermint oil again and it works like a charm.

I don't know if pepperment oil will work for everybody, but it worked amazingly well for me. You may as well give it a try before considering prescription drugs or medical procedure.

Hope this helps!

-Jon

Ken,

I thought I was the only one to suffer so long with these spasms . At first I thought it was my heart  , so I made numerous trips to the Er only to be turned away .....always the same diagnosis , it isn't my heart . Yet to me it feels as though it couldn't be anyhting else . Then it was numerous trips to cardiologists (4 ) to rule out any heart isssues , next stop was Gi Drs , had every test possible , then I had a manometry test (tube is inserted in the throat into the esophagus while you drink water as it it pulled out ). Most uncomfortable test , but it confirmed that I have spasms . Have been on every med possible & different combo's , nothing works . This last one was a low dose anti-depressant which has been proven to help with them , but not for me ! The only way to describe it for me is it feels as though a mack truck is sitting on my chest , I do know that anything frozen makes it worse . I have been told to avoid certain foods but it doesn't matter because I get them even if I don't eat .My Dr says just ordinary breathing can bring them on . Great !  As the years have passed they are more severe & almost to the point where it is all the time just not intermittent . There's times I want to cry it hurts so bad & I start this cycle where I start to worry about them thinking its really my heart & it's getting missed so that probably makes it worse for one GI Dr told me that stress can aggravate them. Well how do you eliminate stress when you feel like you can't even function with these things . Then I was also told that they are very difficult to treat ....my next visit next week my Dr is going to suggest botox injection , supposed to give some relief . Hey I am up for anything that will make my life feel normal again . I don't even say anything to my daughters anymore because I think they are tired of hearing it & can't relate to them , that they don't know how severe the pain can be . It's good to hear that I am not alone . Just wished they could help us with these debilitating spasms . Mention the botox to your Dr ...might be worth it to try .

does the carafate have any side effects?  my dr gave me  script for it also.  i have not started it yet.  i take nexium 40mg twice a day also. thanks!

Hi All,

I have been searching for a site like this for sometime and finally found a good one.

I am 55 years old and have had this spasm problem for over 28 years. The first time it felt like a heart attack, pain in the throat, chest, jaws, but realized that after 4 hours, I should have been dead. Over the years, I have also realized that what type of foods that I ate didn't seem to have a direct cause of the symptoms. Over the years, the spasms got worse to where it would last 12 / 16 hours. Not only the pain, but severe salivation to where I couldn't eat or drink. As Wotan stated, "It felt like a ping pong ball stuck in the lower throat / upper chest area".

I have had 4 endoscopys done in the past 5 years showing only a small mark in the lower esophageal area. The doctors have treated the symptoms as "Acid Reflux" with Nexium. Nexium has had little effect on the problem, BUT NULEV works great in relieving the pain.

I have also had a "Gall Bladder" ultasound (Normal) and a "Nuclear Stress Test" (Heart  Normal). After thousands of dollars (mostly paid though insurance), it has come to a point where the doctors are baffled.

Good Luck to all, I will check back often for any updates.

JB

 

I suggest that all people with esphageal spasms go check out a good acupuncturist. When I first started having these 18 years ago (ongoing stabbing chest pain that would recur for hours and then days and sometimes get so intense that it felt like a massive coronary), the GI doc scoped me and actually witnessed a full spasm. Lots of different drugs were tried to no avail. Finally, I decided to try acupunture as an alternative and an old Chinese medicine practicioner literally turned the spasms off. He assessed my condition from Chinese Medical perspective and said that I had a very cold small intestine and to stop eating/drinking fatty/fried foods, smoked foods, caffeine, much alcohol, green vegetables. In general, these dietary rules have helped, although I do stray from them and occasionally pay the price (esp. fatty/fried foods and caffeine). Stress is also a key element. Although the acupuncturist has given me traditional herbal remedies, he said they would help only a little (and he was correct). Sometimes I have to go back to him for a couple of treatments before the "episode" of spasms completely goes away.

I'm on this site today because I'm having spasms the last 24 hours -- beginning with back pain and now chest pain where even my ribs have become sore to the touch. My acupuncturist was off for the weekend and I looked for some alternatives, so I Googled peppermint oil after checking out the Mayo Clinic site that mentioned it and got here. I'll try some oil today. Thank you.

Be well.
-Steele

I am so happy that I found this forum. Thank you everyone who has posted information regarding diffuse esophageal spasms. I am 42 and have been suffering for 10 years. I have been to many doctors and they just continued to treat me for GERD. My latest doctor who put me on aciphex explained away my excruciating pain in my chest and back as my brain not being able to show me where the pain really is - in my esophagus - and sending signals to my back, chest and shoulders. sheesh.
I have noticed an increase recently in my difficulty in swallowing food. Yesterday after eating I had the worse pain I have EVER had in my life. It was the same as always, sharp stabbing pain in my chest and back with radiating pain in my shoulders. I ended up in severe pain and vomiting for 2 hours. After a horrible experience at Urgent Care I finally went to ER, even though my pain had finally gone away after the 7th time I had vomited. They were very nice and did many tests (including EKG and ultrasound). I had always suspected my gallbladder and almost wanted to cry when they told me my gallbladder was fine. In releasing me the ER dr. casually mentions the possibility of esophageal spasms as a possibility - and that really stuck with me. After reading all your posts I am 100% positive that this is what I have been suffering from for 10 years, thus the reason the GERD medicines never totally work. I just can't believe that not a single doctor ever mentioned this to me, EVER. 5 years ago I even had an scope and was told that everything was totally fine, that the severe pain was in my head, and that it was stress. I am so excited to hear that there are both homeopathic and medical remedies for this problem. For those of you that say they wanted to die when having the pain - I can relate - and in a weird way it's just so good to hear I am not alone. I am going to find a GI doctor and pursue this a.s.a.p. If you have any other information, suggestions or stories for me I would LOVE to hear them. I am going to get peppermint oil today! Thanks so much. God Bless.

I've been reading the entries in this forum and feel that I should share a couple of my own experiences that may help one or two of you with esophageal spasm.

I should say that I have never been overweight but I have been a smoker and am still a recreational drinker of fine British real Ale!

I've had GERD, Esophageal spasm, two heart attacks and a triple heart bypass all by the fine old age of 40! I'm now 48 and never felt better!

There seems to be a pattern of symptoms that everyone touches on in one way or another and these are GERD, spasm and Heart attack or the fear of heart attack.

I suffered GERD for years through my 20's and 30's and ended up burning away the valve to my stomach to leave a perfectly circular open round scar where the valve used to be! If I lay down then anything in my stomach would just exit upwards, bedtime was a nightmare.

I started to suffer from spasmodic intense chest pain in my late 30's but this was attributed to the GERD above and confirmed as Esophageal spasm after EKG, manometry and other tests.

I suffered my first heart attack one month after my 40th birthday while in bed at home and my second one, one week later while still in hospital recovering from the first one, that one though was very severe and nearly did me in all together.

What I would like to do is make a  few points:

a) GERD is acid reflux and can be prevented. In my case by NOT eating anything after 9.00pm and by taking Nexium 20mg twice/day, the acid is basically reduced to minimal levels and I get a perfect nights sleep.

The downside with Proton Pump Inhibitors such as Nexium is that they are so effective at reducing the acid that certain foods are difficult to digest, nuts are the worst. Another problem is that the acid is the body's first line of defence against ingested bacteria or food poisoning so care must be taken. (Dont eat out at dodgy resturants and have your steak medium not rare)

b) If you suffer from Esophageal spasm, dont worry too much that it may be a heart attack there are differences in the pains.

Yes the pain in either case is absolutely extreme, intense, and can be totally debilitating, I've been on my hands and knees with the chest pain from both.

If it's a spasm then I find that there is NO left arm pain and my experience is that the jaw or tooth ache begins before the chest tightens...........go directly to the sink and grab a glass of COLD water, drink it fast, gulp it down with big swallows and get the muscles working in your throat. Get another and do it again, I find that after just 20 seconds ALL the pain will subside.

On a good day, the pain stays off but on a bad day I'll be at the sink every couple hours but at least the pain goes away using this method. Warm water has no effect at all, make sure its cold and that you can feel it going down when you swallow it!

(If this works even once for you then your heart is fine)

c) Heart attack pain feels different......... my experience is that the chest pain comes first but the left arm aches and feels slow and lethargic, I understand that this is related to circulation issues and not the nerve impulse confusion and crossover that occurs to cause the other strangely located pains. (I didn't get any jaw pain with my heart attacks but I do with every singe spasm)

d) The medication that all heart patients and angina patients carry is the GTN spray which dilates the blood vessels and reduces blood pressure. This SAME spray can be used if you feel a spasm coming because it also relaxes the muscles of the Esophagus although this can take a few minutes before taking effect.

e) If you get intense pain while eating then it's probably food getting stuck at the entrance to your stomach, not spasm. When the food item gets through or comes back up, the pain goes away and doesn't come back until the next time something gets stuck.

Finally I do understand that we are all different and that the above is just my own experience but try the water, it really does turn off the pain for me and it might do for you. If you've never had an EKG then get one, I was NOT diagnosed with heart problems before my heart attacks because I had diagnosed spasms!

Nexium is a miracle drug.

Cheers and good luck.

I am happy to have found this page!! I started having breathing (strangle feeling) trouble in January, 3 months ago. My throat is swollen most of the time and I have chest pressure/pain and SEVERE pain in my back between my shoulder blades. I have a cough and am short of breath and can not yawn. My esophagus feels like someone is wringing it out most of the time and I can feel the swelling in it. When I swallow saliva, air, food it feels like I have a watermellon trying to make its way down my back as slowly as possible. It will bring me to my knees it can be soooo painful. I first called my regular Dr and he told me over the phone I had acid reflux and to go to Walgreens and get mylanta and prevacid. I have never had heartburn or anything shoot up my throat, EVER. Tried the over the counter stuff. Still pain. Went to see Dr in person they said I was probably stressed and I got scrip for ranitidine (tagamet), did not work. Went to ENT Dr. for ears and the strangle feeling and he said could be thyroid but that came back ok. Went to GI dr and he said acid reflux and gave me nexium. Did not work. I have been on a Gerd's persons diet there is no change. Went back to GI dr had scope and bravo capsule last week. Said scope looked great waiting on Bravo and lab reports. Well maybe when I was totally knocked out and they scoped me I did not spasm??? Eating is torture. Could all this esophageal stuff cause my breathing trouble? Everyone I know says I am just stressed, makes me feel like they think my pain is fake. I had esoph spasms in college about 20 years ago but why would they come back and stay? I am stressed but my pain is really real. I want to move on I am sad about it.

Ken and others -
Please do pursue your esophageal spasms with your cardiologists. I have these spasms, seen on manometry along with my weak swallow, and for me is triggered by foods that cause my reflux: 4 years ago mine triggered a heart attack.

It's described in recent papers as cardio-esophageal reflex (no, not reflux, it's reflex with an E).

Nothing will show on ECG, stress tests, and often not even on 24-hour monitoring. But if a coronary arteries get spasming it can cause a point of plaque to rupture, which occludes the artery. You're probably fine unless you have existing coronary artery disease, but I would get checked.