Esophageal Spasms

[Shattofamily]

I apparently have been have spasms for over 30 years, but was not diagnosed until 6 months ago. I have severe pain in my upper left stomach under the ribs, chest, (like a charlie horse). It is the worse pain I have ever felt! I went to the ER in July after having 5 in one day, and they gave me a GI cocktail and sent me home... I was in tears and frustrated, but had a name for the spasms. They called them "nutcrackers". They mimicked heart attacks and I was sent to a cardiologist who could not say without extensive testing that it was NOT my heart. One month and thousands of $$$ later, he was confident that my heart was fine and that the cause was a hernia and esophageal spasms. And that was it. I was left to deal with them on my own. Very frustrating!!  I have tried to alter my diet,I  avoid laying down after eating, sleep on 3 pillows, take stomach medications, avoid citric acids and fruits, etc. Last night, I bent over to clean up a litter box, fed my dog, ate a brownie, stayed up for a good 2 hours AFTER these activities, and yet I awoke from a dead sleep have an horrific spasm. The pain is terrible! I ran to the bathroom to try to force down some cold water which will sometimes stop the spasms. I came to about 10 minutes later. I apparently passed out and landed in the shower... my husband was frantic! I am headed BACK to the Dr AGAIN today. I have tried eating cold bread and milk before bed (that actually works if I do it every night), making myself gag when I am having a spasm, and forcing down cold fluids. I have nitro, but have avoided using it due to the headaches. I am open to suggestions....

[mexicanrose48]

I dont' think you mentioned if the "cocktail" you were given at the hospital helped at all. I do know of a "cocktail", & the one I was given over a year ago was called "pink lady". When I drank
the cocktail, I got instant relief.
In conversation with my former Cardiologist, and mentioned the pains and what I did for them,
he immediately said.."that's NOT cardiac". I do drink cold water and get fast relieve, but if it takes a little longer than usual, I'll chew a Gaviscon tablet which provides relieve in the snap of a finger.
I strongly believe I have esophageal spasms. Manometry was done Dec. 6/2022 with what I'm sure will be negative results. The nurse attempted to trigger some spasms but she got a very mild result, which very likely won't be reported when the results become available. Over the past 2-3 days, the spasms are coming/going. I guess this is something that needs catching in the act.
I've taken PPI's, H2 receptors, Famotidine, etc. It was suggested to me that I take 2 50mg of amitryptyline each night at bedtime, then take 3 a week later. I couldn't complete the reginme of
2/50mg as it caused great constipation. So now that the Manometry has been done (for which I waited over a year go have), I will be contacting my doctor to see what else can be done. I'm of the mind set there is to be no more pills, I want to see either a Gastroenterologist, or a Thoracic Dr., but the latter is prevalent in my mind at the present time. I'd much prefer to have a myotomy so I can at least enjoy my life without suffering these painful spasms.
I have been reading a lot online recently and have been surprised by the number of people experiencing the same thing. The spasms cannot be rare with all this many people suffering with
spasms.

[BOK2Bjan]

Hi - I admit that I have perhaps more questions than answers, but I'll see if I can be of some help.  I have a great deal of experience with GI issues, and so am familiar with most of what you're referring to.

The spasms are indeed horrible - if what you are experiencing is the same as I experienced years ago.  I had severe GERD, which caused severe esophaghitis and several esophageal ulcers.  I started having severe pain after eating my first bite of a meal, and then was unable to swallow due to the spasms.  The only thing that would stop them was vomiting.  I had had several upper endoscopies, but it was time for another.  I couldn't take this any longer.  The pain was so severe, I would just scream and drool - unable to swallow.  You said you were able to swallow, so that's the thing that makes me wonder if it's the same problem.

When I was re-scoped, the esophagus was found to be narrowed from scar tissue, so the doctor did a dilatation.  Thank goodness, it stopped the spasms.  I've never been so happy in my life.  I went on to develop Barrett's
esophagus, scleroderma esophagus, and an enlarged, flaccid esophagus, without any peristalsis (as per manometry)

I also have a hiatal hernia, a lax LES, gastroparesis, and chronic aspiration of gastric contents due to regurgitating while sleeping many nights a week.  Due in large part to pressure from "below" due to problems with constipation.

Questions:  Why all the cardiac testing?  I realize "heart burn" makes it feel as though there is pain from the heart, but once they realized you had the GI problems, why the continued testing?  Do you have cardiac problems?  Have they not diagnosed you with esophageal spasms?, so they know that the pain is from that and not from a cardiac event - right?  You also didn't mention what precipitates the events.  Is it when you eat?  And yet, you are able to eat after your esophagus spasms?  You're able to swallow?

What did the upper endoscopy show?  I assume that's what you meant by having been scoped.  Also, since you had bariatric surgery - for weight loss I assume? - it will cause more severe GERD, I've heard.  And why was your gallbladder removed?  Was it taken out before the bariatric surgery?

The esophageal spasms are very different from the pain of reflux.  Both can be very very severe.  Yet, the spasms are usually brought on by eating something, whereas the reflux usually comes on some time after having eaten.  Are you able to tell the difference?

I'll stop now, as I have asked so many questions I'm sure you'll need to answer them for me to know what else I might have to say.  From what you've said, your GI didn't seem to help you much, and so I'd love to see if I could steer you in the right direction.  Let me know if I can help - by answering my questions - thanks.

Blessings,Jan

[Shattofamily]

I have nitro, I have not used it. I have migraines and was told the headaches are severe. After this last attack, I am ready to try it. I am pretty sure the headache won't last as long as the one I got from passing out or be as painful as getting all banged up and bruised!

[CalGal]

Have you ever been evaluated for SOD, sphincter of Oddi dysfunction? Have you discussed the use of bentyl or nitroglycerin with your doc?

[Shattofamily]

I have been to numerous specialists and have had a scope and colonoscopy. I had gastric bypass 7 years ago. I know that I have a hernia, which they did not repair because they felt it would improve with the weight loss. I do not have stomach acids like some people do because of the bypass. The medications are prescribed by the doctors, but they don't always agree on my treatment. No one seems interested in treating the hernia. Today, the tests included checking my heart, again (still normal) and scheduling another EEG, this time after I have been awake for 24 hours. I have already had these tests.  And the Dr prescribed another round of prilosec twice a day. AGAIN. He also has me taking mylanta and benadryl cocktails to numb the pain in my chest when it starts feeling tight. I have a primary, cardiologist, neurologist(which I refuse to see anymore), gastric dr, orthopedic (2 but I won't see the 2nd one anymore either), pulmonary, and a physical therapist! I am doctored OUT! They are telling me I have fibromyalgia which is making the pain and symptoms more intense and IBS which I have taken medications for since they removed my gallbladder. I have had GERD in the past, but not so much due to the bypass and sleep apnea. I do tend to get ulcers. The big problem is the incredible pain from the spasms in my chest. I can not get relief from them and now I am back to passing out from the pain... I work 2 jobs, I need to be able to sleep and these seem to hit me at night after I first doze off.

[CalGal]

Esophageal spasms need to be medically evaluated. You didn't mention whether or not you've had any esophageal manometry done, or any other kinds of tests done to check out the presence of acid reflux which can lead to esophageal spasms.

You mentioned stomach meds, but who prescribed them and what tests were done that led to their prescription? Are they something you are taking because you feel you should, or??? And if you altered your diet to try to minimize acid problems, milk isn't really something that on a GERD-friendly diet play. It actually produces acid issues.

There are meds that can be tried when someone has diagnosed esophageal spasms. Specific anti-spasm meds such as bentry and a few others. Some of the stronger ones have some deleterious side-effects and their use can be problematic so they have to be closely monitored. Are you working with a good gastroenterologist? If not, ask your doc for a referral.