Re: Re: Need an update on hellermyotomy

[Guest guest]

Hi Doug

Spasms are quite similar to heartburn.

I was convinced I had heartburn, until I read an email from Debbi H….she

is too busy at the moment to reply to emails at the moment. I will find

Debbi’s Famous Spasm Email and paste it below. (I hope this isn’t

some kind of illegal copyright thingy J …..)

Written from the book of Pepto Deb:

<I have a post about

spasms/NCCPs/ " heartburn " that I copy/paste here from time to time

when the subject comes up. Unfortunately there isn't any " one "

fix for the problem, but hopefully you'll find something in here that helps in

your particular case! (And many if not most of us notice more symptoms

when under stress -- it isn't just you!)

Debbi

in Michigan

=============================================================================

Chest pains, heartburn, acid reflux,

spasm pains, NCCPs.... what the heck is all of this stuff anyway????

(aka: Debbi's Dissertation on

Dysfunctional Dysphagia Diagnoses)

Here's some info I've put together on differences between

" heartburn " and the " chest pains/spasm pains " that are

related to achalasia. The official medical term that I've found for the

" spasm pain " is " NCCP " or Non Cardiac Chest

Pain. There are multiple terms used for " heartburn "

including: acid indigestion, acid reflux, GERD/GORD, etc.

In my pre-achalasia days, I would have

" indigestion/heartburn " once in a while (after a particularly large,

fatty, acidic meal, etc.), maybe once or twice a year. I would have

that nasty acid taste in my mouth when I burped, and a hot/burning

sensation in the area of my breastbone. While not particularly

comfortable, it wasn't an excruciating, debilitating pain, and taking some Tums

or other antacid would neutralize it and both the taste and the discomfort

would go away.

When I had my first NCCP, I had been having problems

swallowing for a few years but hadn't yet been diagnosed with

anything, and I had no clue that the pain was related to my swallowing

problems. I thought the pain was some gawd-awful gas pains -- felt

like something was stabbing me from the inside out! The pain seemed to

start in the ribs and almost squeeze my chest with searing pain that seemed to

shoot up into my neck, too. (note: everyone can experience NCCPs in

varying degrees and in various parts of the body, including stomach,

chest, shoulders, neck, back, jaw, tongue, teeth, and roof of the mouth.)

I lived alone at the time, and I drove to a convenience store and bought

three rolls of Rolaids and ate two whole rolls. That didn't have any

effect at all, and it took a couple hours for the pain to go

away.

Another time, I have a distinct memory of standing in the

kitchen holding onto the countertop and just WAILING at the top of my lungs

because it hurt so bad, and my knees buckling from the pain. My wailing

turned into one big repetitious prayer: " Please, Lord, Please, Lord, Make

It Stop, Lord, I Can't Take It Anymore, Lord, Please, Lord, I Need You To

Please Help Me! " over and over and over again while sobbing. This

was almost a decade ago and I don't know how long it went on, but I'm thinking

that it was well over an hour of that constant wailing. Boy, those were

the days, huh? ;o)

For people whose doctors believe that NCCPs are an

" atypical " (not normal) symptom for achalasia patients, point

them in the direction of this informal poll here on our group: achalasia/surveys?id=1037310

The poll is now closed, so who knows how many more would be

added to it if it were still accepting votes. If you scroll down to the

end, 38 people reported that they have these " spasms " , and 5 people

reported that they don't have spasms. So out of 43 people who answered

the poll, 88% have spasms and 12% don't have spasms. Doesn't sound like a

" rare " or " atypical " symptom, does it?

In another poll ( achalasia/surveys?id=1011383 ), out of the people who went

to the Emergency Room due to extreme chest pains, 2 were given intravenous

Valium, 3 were given Demerol or other narcotic injection, and 7 were given no

treatment whatsoever.... isn't that sad? 58% of the people who were

in such severe pain that they went to the E.R. for relief were given NO

TREATMENT at all!!! That is SO unnecessary!!!!

Here's some info that I copied from an old post of mine -- if

your doctor will bother to do some simple web searches, he'll see that calcium

channel blockers, nitroglycerine, and anti-depressants are all documented ways

to treat NCCP in people with esophageal disorders! Maybe if you print it

out and show it to him, he'll be willing to offer you some help in dealing with

this.

=============================================

Here's some basic info that I've posted in the past --

different things work for different people, so it's basically just an

experiment to find what works for your own particular situation.

Here are some different coping methods to try:

-- Swallowing something warm or something cold (in my case, I

chug warm --not hot-- water as fast as I can).

-- CCB medication (calcium channel blockers) -- when I'm

having NCCPs, I prick the shell of a nifedipine capsule and squirt it under my

tongue. It absorbs into the bloodstream under the tongue (this is called

a " sub-lingual " medication, meaning under-tongue) and relaxes smooth

muscle tissue (which is what the esophagus is made up of). You can also

just swallow the capsule, but since we have trouble swallowing in the first

place, I've found the under-the-tongue method works best (then you just swallow

when you've held it there as long as you can and your saliva requires a

swallow). Unfortunately, it can also lower your blood pressure (usually

only a problem if you already have low BP to begin with) and cause a headache

afterwards -- some people experience this, some don't. CCB's can also be

tried in the " slow release " formula as a preventative to having NCCPs

start in the first place.

-- Nitroglycerin medication -- works in much the same way as

the CCB mentioned above, and can also be taken sublingually for fast relief.

-- Certain anti-depressant and anti-convulsant medications --

some people don't have NCCPs when on these types of medications, believed to be

a function of the medicine's effect on serotonin in the brain (antidepressants

such as Nortryptaline, Amitryptaline, Imipramine and Trazodone have been

studied; Neurontin is being studied in a similar way for " phantom limb

pain " in amputees, etc.) People in the group have had luck with

Paxil, Ativan, Nortryptaline, etc. The dosage needed in this case is

generally lower than the dosage that is normally used to treat depression.

-- L'Argnine supplements -- some people have found these

relieve NCCP symptoms.

-- If symptoms are debilitating and none of the methods above

help, you may need a narcotic pain reliever, but definitely try all the options

above first, b/c if you're on narcotics you can't drive, work, etc., and the

vast majority of people can find relief in a way that doesn't involve

narcotics.

=============================================

In the last few years I've taken three different drugs that

affect serotonin (two were antidepressants, and one isn't considered to be

an anti-depressant medication but does have an effect on serotonin);

any time I was on one of those drugs, my NCCPs have either disappeared

entirely, or been nearly eliminated and greatly reduced in severity. And each

time I discontinued a serotonin-effect drug, the NCCPs started up again within

a month's time. One member here who was in the E.R. repeatedly for debilitating

NCCPs finally had a doctor prescribe a low-dose daily antidepressant; her NCCPs

have been eliminated.... no more pain, no more narcotics, no more trips to

the hospital.

There are soooooooooooo many things that can be done to

reduce NCCPs, but doctors don't even bother to TRY to find a solution for

us. I say let THEM curl up in a fetal position making plea-bargain deals

with their Maker at 3:00 in the morning just ONCE, and you can bet your booty

that they'll find a solution REAL fast!!!

Debbi in Michigan >

Debbi….

I hope you come back to us soon! JJ

[Guest guest]

Question. What does a spasm feel like? Is it similar to heart burn. Sometimes I get a burning sensation and water usally works. Guess it washes the acid down. Maybe I am having a spasm. One gastro person prescribed Levin to put on tongue. I have never used it . Just had a Heller myotomy and things are going OK. I will never be able to eat like I used to but I can get by with small bites and allot of water. Hot green tea works pretty good to wash the food down especially before bed. I think the warm water relaxes the LES muscle and green tea is know to prevent esop. cancer.

Need an update on hellermyotomy> > > > Its been 2 years since I have had the surgery done to help with my > achalasia. I still get flair ups where I can't swallow and food > gets stuck. My question is for those who have also received the > surgery are you getting anyother problems now? I have recently > begun getting a sharp shooting pain that either starts at my glands > in my neck and travel down into my chest or vise versa. The pain > comes on at anytime and whether or not I ate. Its not a burning > pain but a sharp shooting one. I use to be able to take to antacids > and it would go away but now its up to 4 antacids and a glass of > water before the pain goes away. Not only that but its now lasting > longer and longer every time i get it. I don't get it all the time > but enough for me to have some concerns. I was just wondering if > anyone else is having this problem.> -n-> > > > >

[Guest guest]

Thanks again. This is great stuff! I have learned so much over the pass 6 months.

RE: Re: Need an update on hellermyotomy

Hi Doug

Spasms are quite similar to heartburn. I was convinced I had heartburn, until I read an email from Debbi H….she is too busy at the moment to reply to emails at the moment. I will find Debbi’s Famous Spasm Email and paste it below. (I hope this isn’t some kind of illegal copyright thingy J …..)

Written from the book of Pepto Deb:

<I have a post about spasms/NCCPs/"heartburn" that I copy/paste here from time to time when the subject comes up. Unfortunately there isn't any "one" fix for the problem, but hopefully you'll find something in here that helps in your particular case! (And many if not most of us notice more symptoms when under stress -- it isn't just you!)Debbi in Michigan

=============================================================================

Chest pains, heartburn, acid reflux, spasm pains, NCCPs.... what the heck is all of this stuff anyway????

(aka: Debbi's Dissertation on Dysfunctional Dysphagia Diagnoses)

Here's some info I've put together on differences between "heartburn" and the "chest pains/spasm pains" that are related to achalasia. The official medical term that I've found for the "spasm pain" is "NCCP" or Non Cardiac Chest Pain. There are multiple terms used for "heartburn" including: acid indigestion, acid reflux, GERD/GORD, etc.

In my pre-achalasia days, I would have "indigestion/heartburn" once in a while (after a particularly large, fatty, acidic meal, etc.), maybe once or twice a year. I would have that nasty acid taste in my mouth when I burped, and a hot/burning sensation in the area of my breastbone. While not particularly comfortable, it wasn't an excruciating, debilitating pain, and taking some Tums or other antacid would neutralize it and both the taste and the discomfort would go away.

When I had my first NCCP, I had been having problems swallowing for a few years but hadn't yet been diagnosed with anything, and I had no clue that the pain was related to my swallowing problems. I thought the pain was some gawd-awful gas pains -- felt like something was stabbing me from the inside out! The pain seemed to start in the ribs and almost squeeze my chest with searing pain that seemed to shoot up into my neck, too. (note: everyone can experience NCCPs in varying degrees and in various parts of the body, including stomach, chest, shoulders, neck, back, jaw, tongue, teeth, and roof of the mouth.) I lived alone at the time, and I drove to a convenience store and bought three rolls of Rolaids and ate two whole rolls. That didn't have any effect at all, and it took a couple hours for the pain to go away.

Another time, I have a distinct memory of standing in the kitchen holding onto the countertop and just WAILING at the top of my lungs because it hurt so bad, and my knees buckling from the pain. My wailing turned into one big repetitious prayer: "Please, Lord, Please, Lord, Make It Stop, Lord, I Can't Take It Anymore, Lord, Please, Lord, I Need You To Please Help Me!" over and over and over again while sobbing. This was almost a decade ago and I don't know how long it went on, but I'm thinking that it was well over an hour of that constant wailing. Boy, those were the days, huh? ;o)

For people whose doctors believe that NCCPs are an "atypical" (not normal) symptom for achalasia patients, point them in the direction of this informal poll here on our group: achalasia/surveys?id=1037310

The poll is now closed, so who knows how many more would be added to it if it were still accepting votes. If you scroll down to the end, 38 people reported that they have these "spasms", and 5 people reported that they don't have spasms. So out of 43 people who answered the poll, 88% have spasms and 12% don't have spasms. Doesn't sound like a "rare" or "atypical" symptom, does it?

In another poll ( achalasia/surveys?id=1011383 ), out of the people who went to the Emergency Room due to extreme chest pains, 2 were given intravenous Valium, 3 were given Demerol or other narcotic injection, and 7 were given no treatment whatsoever.... isn't that sad? 58% of the people who were in such severe pain that they went to the E.R. for relief were given NO TREATMENT at all!!! That is SO unnecessary!!!!

Here's some info that I copied from an old post of mine -- if your doctor will bother to do some simple web searches, he'll see that calcium channel blockers, nitroglycerine, and anti-depressants are all documented ways to treat NCCP in people with esophageal disorders! Maybe if you print it out and show it to him, he'll be willing to offer you some help in dealing with this.

=============================================

Here's some basic info that I've posted in the past -- different things work for different people, so it's basically just an experiment to find what works for your own particular situation.

Here are some different coping methods to try:

-- Swallowing something warm or something cold (in my case, I chug warm --not hot-- water as fast as I can).

-- CCB medication (calcium channel blockers) -- when I'm having NCCPs, I prick the shell of a nifedipine capsule and squirt it under my tongue. It absorbs into the bloodstream under the tongue (this is called a "sub-lingual" medication, meaning under-tongue) and relaxes smooth muscle tissue (which is what the esophagus is made up of). You can also just swallow the capsule, but since we have trouble swallowing in the first place, I've found the under-the-tongue method works best (then you just swallow when you've held it there as long as you can and your saliva requires a swallow). Unfortunately, it can also lower your blood pressure (usually only a problem if you already have low BP to begin with) and cause a headache afterwards -- some people experience this, some don't. CCB's can also be tried in the "slow release" formula as a preventative to having NCCPs start in the first place.

-- Nitroglycerin medication -- works in much the same way as the CCB mentioned above, and can also be taken sublingually for fast relief.

-- Certain anti-depressant and anti-convulsant medications -- some people don't have NCCPs when on these types of medications, believed to be a function of the medicine's effect on serotonin in the brain (antidepressants such as Nortryptaline, Amitryptaline, Imipramine and Trazodone have been studied; Neurontin is being studied in a similar way for "phantom limb pain" in amputees, etc.) People in the group have had luck with Paxil, Ativan, Nortryptaline, etc. The dosage needed in this case is generally lower than the dosage that is normally used to treat depression.

-- L'Argnine supplements -- some people have found these relieve NCCP symptoms.

-- If symptoms are debilitating and none of the methods above help, you may need a narcotic pain reliever, but definitely try all the options above first, b/c if you're on narcotics you can't drive, work, etc., and the vast majority of people can find relief in a way that doesn't involve narcotics.

=============================================

In the last few years I've taken three different drugs that affect serotonin (two were antidepressants, and one isn't considered to be an anti-depressant medication but does have an effect on serotonin); any time I was on one of those drugs, my NCCPs have either disappeared entirely, or been nearly eliminated and greatly reduced in severity. And each time I discontinued a serotonin-effect drug, the NCCPs started up again within a month's time. One member here who was in the E.R. repeatedly for debilitating NCCPs finally had a doctor prescribe a low-dose daily antidepressant; her NCCPs have been eliminated.... no more pain, no more narcotics, no more trips to the hospital.

There are soooooooooooo many things that can be done to reduce NCCPs, but doctors don't even bother to TRY to find a solution for us. I say let THEM curl up in a fetal position making plea-bargain deals with their Maker at 3:00 in the morning just ONCE, and you can bet your booty that they'll find a solution REAL fast!!!

Debbi in Michigan >

Debbi…. I hope you come back to us soon! JJ