Esophageal Spasms that are getting worse...and scare me so much

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djukes
New Member


Date Joined Sep 2011
Total Posts : 1
   Posted 9/11/2011 12:23 AM (GMT -6)   
I am new to this website and after reading through many posts, decided to start my own. It's encouraging to know that others are going through what I'm going through. I understand they fear, depression, desperation and loneliness. Mine started when I was pregnant with my son. That was around March 2006. It's been 5 years now that I've been dealing with them. From the very first spasm, they always came at night while I was sound asleep. A sever upper abdominal pain that would radiate through to my back. It would feel like my chest was having a charlie horse. Untreated, they would last anywhere between 2-6 hours. I would be hunched over and groaning or writhing around in pain on the floor crying and begging to die. When I was going to the ER more times than I can count, they would do all the blood and urine tests and everything would come out normal. They tried giving me Darvocet, Morphine and a myriad of other pain killers, but nothing worked except 2-3 syringes of Dilaudid. Eventually, they thought it MIGHT be my gallbladder so they took it out. The next day after surgery, I had another attack. After that I was in and out of the ER several times. At one particular bad attack, they decided to stick a camera down my throat (sorry, I can't remember what the medical term for this procedure is) and it ended up causing me to get pancreatitis. I was in the hospital for 4 days with the worst pain ever. After that horrendous experience, they just kept loading me up on more and more meds until I didn't know where I was half the time. I lost a week of my life that I just don't remember at all. I decided to stop taking all of them and started researching more seriously. I found a girl who's doctor prescribed to her nitroglycerin. I suggested this to my primary doctor and she thought it was worth a shot. The first time I had to take it, it worked like a charm. The spasms stopped relatively quickly. I have medication to help once this starts, but I'm looking for something that will keep them from happening. I have not slept through the night in over 5 years. Every single morning between 3-5am, I am awakened by that old familiar pain and I have to admit that no matter how many times I go through it, it still scares me to death. I'm a single mother of a 5-year-old and I want to be around for him. Sometimes I can stop the attack if I quickly get up and chug water as fast as possible. I believe it's the actual swallowing quickly that helps. Maybe it regulates the spasm?

Here's what I want to know:

Is there anything out there besides nitroglycerin that I should be trying? There are no foods that trigger this. I have noticed they aren't so frequent if I stay away from carbonated beverages, so I have taken them out of my diet for about 2 years now.

I've heard about peppermint oil. Can someone provide any experience they've had with using this? Good or bad.

I've also heard about that licorice stuff (sorry I can't remember what it's actually called....something like DLR?)

Botox Injections into the esophagus. Has anyone undergone this treatment? Did it help? How often do you have to do it?

I wish there was a miracle doctor out there that could figure this out and help me fix it. I just want to be healthy for my boy. I want simple things like sleeping through the night, not being afraid to go to sleep.

I appreciate anyone and everyone's input on this.

Peace and love to you all. May we all pray for each other :-)

-K

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 9/11/2011 8:23 AM (GMT -6)   
K
 
Hello and welcome to Healingwell.  I am sorry that you are experiencing so much pain and yet nothing has helped you so far.  I do not remember reading if you were seen by a GI Physician and had a work up for GERD ?  Also wondering what medications you are currently taking if you do not mind sharing ?
 
I am sorry for all the questions but to get a better idea of what is going on I am wondering what your medical dx is for the pain...............do you have chronic pancreatitis ?
 
To answer your questions I am going to suggest that you look at the dark blue strip above the forums and you will find a "search" feature.  Click on this and you can search the whole site for each question you have.  There is a wealth of information here in the forum and everyone of your questions has been discussed in the threads.  Once you have read through do feel free to come back here and post any specific questions re your questions so that we can address your personal inquiries.
 
We are so glad that you have found us, and hope that you will continue to post.  I am looking forward to getting to know you better.
 
Kindly,
Kitt
 
 
~~Kitt~~
Moderator: GERD/Heartburn and Heart/Cardiovascular Disease.
www.healingwell.com

"If you can't change the world, change your world"

LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 9/22/2011 5:54 PM (GMT -6)   
Hello K, my name is Janice and I was a regular on the forum for many, many years; there are many incredible and special people here and all have tried to help each other through very tough situations. One of my friends from the forum contacted me about your post; I apologize for not getting to this sooner, but situations have been challenging.
When I first read your post I thought that your situation was vastly different from mine and I didn't feel I could tell you much, until I read about the nitroglycerin and it made me think.
My spasms are different than yours and honestly, the folks at Cleveland Clinic have no idea what they are, but they purported that this is probably the result of a Vagus nerve injury; in my case, multiple procedures and a Nissen are probably the cause. The vagus nerve is an enormous nerve that runs from your head/neck area, all the way down through your abdomen and then some. Their only solution for me was to try baclofen, a muscle relaxer. I tried it and it didn't work....strike 33; very frustrating.
I've had severe, SEVERE, migraines for 10 years and have gone to an incredible neurologist; these headaches are intractable and we've been trying various modalities..one was to add baclofen to my preventative meds. One baclofen didn't make much difference, so he had me increase it to two; this helped me sleep, but not so much with the head pain..HOWEVER, we noticed that the spasms started to decrease and over time, while not gone, they are much, much less frequent and less violent.
Nitroglycerin is basically a relaxant type of med; so is baclofen. Is it a reach to suppose that while pregnant, your vagus nerve was pinched? and from there became the problem that it is?..no, not in my mind. Knowing what I know now; my neuro theorizes that my vagus nerve became irritated or damaged and the spasms started; the spasms created a more inflammatory state which increased the spasms, which increased....and on and on. The baclofen, at a higher dose, was able to start calming this down and I'm now at a point where I'm much better than before.
I would suggest talking to your primary care about my experience, see what she thinks. I'll tell you this much, most Doctors have no idea; I could not believe that Cleveland Clinic had no idea, but one of the neuro's had the thought..had I stayed with them, we probably would have come to the same conclusion, but driving 5 hours for an I don't know..didn't sit well. Fortunately, chance and a good neuro close to home worked.
I hope this helps; it is difficult, embarrassing, painful and scary..but I have gotten better and I hope you will too.
Janice

rcasey
New Member


Date Joined Jun 2012
Total Posts : 2
   Posted Yesterday 12:47 PM (GMT -6)   
DJukes, have you had any luck with your situation since your postings here. Like you I have gone thru all of the testing to be told there is no cure. I have started to log my episodes and research more than I have in the past. I thought I was past all of this as I haven't had an issue in 2 months, but it reared its ugly head again last night.

If you don't mind please update us on your status and if you have found anything to help ease or cure these spasms. I realized that I hadn't had any Coca-Cola in a couple of months but had one about 24 hours before this episode, so I am going to stay off of that and see what happens.

Thanks!

ericapeace2000
Forum Moderator


Date Joined Mar 2012
Total Posts : 1110
   Posted Yesterday 1:12 PM (GMT -6)   
I also suffer from spasms. Mine are related to my reflux I believe and possibly a glueten allergy that I am investigating. I am going through testing now to figure out the possible roots. I have never had surgery before nor any other health conditions besdies GERD. This is why I am pretty sure mine are related to my reflux/allergy. I notice they are less frquent when I am following a GERD diet and PPI. Chewing gum helps me also because the saliva combats the acid. I want to sympathize with everyone about these spasms. They are so painful. No one understands unless they experience them. They are very scary and not well understood.
Diagnosed GERD, no other medical conditions (this one is enough)

rcasey
New Member


Date Joined Jun 2012
Total Posts : 2
   Posted Yesterday 1:21 PM (GMT -6)   
I have come to the conclusion that Esophageal Spasms and GERD are 2 different animals that take place in the same area. Just my opinion, but when I have an ES attack there is no reflux or acid involved. Even the Endoscopy that was performed showed no issues where the esophagus connects to the stomach which is where I believe the root of GERD issues start. In addition I do not think any certain foods and food/drink temperatures start an ES reaction as they would GERD. I could go on and on with my opinions, but hopeful I can receive some other opinions, testimonies as well in hopes of finding a solution.

Moderator - any chance we could get ES its own thread so its not mixed in with GERD?

Thanks and looking forward to reading up more, Ryan

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted Yesterday 2:43 PM (GMT -6)   
Rcasey,

http://www.springerlink.com/content/p644444488410g10/

This links to a 2012 article summary which mentions Viagra being used for oesophageal spasm! Also mentions the Botox treatment.

You'd be welcome to start your own thread here on ES - it's not as common as other issues that come up but you'd be welcome to keep bumping up the thread to catch new 'customers'.

MMM
New stuff: GERD, Recurrent cystitis/Overactive bladder
Lifelong stuff: Food allergies/intolerance, eczema, asthma
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