Here it is again..... Chest pains, heartburn, acid reflux, spasm pains, NCCPs....

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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.

These 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). This serves to send the brain some

" signals " that it can interpret correctly, so that it turns off the pain

signal when it recognizes the new incoming, understandable message.

-- 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 several years, I personally have 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. (Note -- this serotonin effect is still

working for me almost a decade later ... if I miss a few days' pills in a

row, I'll start getting those darn pains coming back, but they are

virtually non-existent as long as I take my pill every day.) 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