Re: Spasm?

[Guest guest]

Hi Auri,

 

It is particularly difficult to cope when you have had a dilatation, then feel

signicantly worse. While most of us know when we are having spasms, we are

sometimes hard-pressed to understand just what is going on inside of us while in

the midst of feeling the spasms.

 

I don't know if the dilatation opened up the base of your esophagus permitting

stomach acids to come up, and that is what you are feeling, or it is due to your

esophagus getting traumatized. Notan has written over the years that one should

try an antacid, such as Tums to see if it reduces that acid sensation. If it

doesn't then it might be spasms you are feeling. It helps to know what you are

dealing with.

 

________________________________

From: Auri <prosperousauri@...>

achalasia

Sent: Wednesday, February 22, 2012 4:24 PM

Subject: Spasm?

 

Since the dilation on Friday I have had two nights of waking up in severe pain

that feels like a bad acid reflux but no acid. It is so horrible and lasts for

what seems forever. What is that exactly and is there anything to make it

subside?

[Guest guest]

It is very common to have spasms after surgery or dialation. The fear of them

makes it worse. If you can get food down, try eating something like French

bread and then letting it stay in your esophagus, if the pain is really bad.

But only do that if food is going down reasonably well if you drink water. Try

popsicles, some get relief from them.

Eat small meals often. It seems like going without food can trigger a spasm.

If you can't eat bread, try soda crackers, vanilla wafers, or something that

will stay in your esophagus until you add water. Be careful what you eat

though.

Sometimes carbonation helps, sometimes it makes it worse. Try sleepy time tea

or antidepressants, they can relieve the anxiety about having a spasm.

If you have some kind of medication that helps you sleep, then try it.

If you practice some kind of yoga or other relaxation things, try that.

The biggest thing is that for everyone, it seems like they lessen over time.

Sandy

>

> Since the dilation on Friday I have had two nights of waking up in severe pain

that feels like a bad acid reflux but no acid. It is so horrible and lasts for

what seems forever. What is that exactly and is there anything to make it

subside?

>

[Guest guest]

Have you checked out the Spasm/NCCP post I put up again last week? If not, here

it is again:

It's been a few months since the " spasm post " has been done, so here's the

golden oldie for the newer folks in the group:

***********************************************************

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

>

> Since the dilation on Friday I have had two nights of waking up in severe pain

that feels like a bad acid reflux but no acid. It is so horrible and lasts for

what seems forever. What is that exactly and is there anything to make it

subside?

>