Re: Joanne in Malta .... Heller - long time experience?

[Guest guest]

Debbie -

I just joined the forum and am interested in what medication you all

take for the spasms. I've been taking Nitro with limited success. What

are some other options that you've heard about and recommend?

Thanks so much for your time!

> Joanne - I saw you mentioned that you're having problems with spasm

pains still. Have you been able to try any of the drugs that can ease

these pains for many of us in the group?

>

> I hope that you can find something that works for you -- I think

that the pains that come from nowhere (and always at the most

inopportune time) can be the worst part of this disease sometimes.

>

> Debbi in Michigan(also the mother of a 4yo boy)

> Hi This is Joanne from Malta 29yrs. I underwent the hellers for 6

years now. I must say that from that time i can eat whatever i

like.Very rarely sometimes the food while passing through will hurt me

but it will not go back up ( vomit) as i did constantly before the

operation. My only problem now is the spasm pain that is caused

without any cause or pattern. But i must assure you that the most

important thing is that i can enjoy meals and my wieght is back to

normal as before the operation i was very underwieght. From that time

i had even a boy who is 4 yrs now.

> Good Luck Joanne

[Guest guest]

Debbi

I actually just got smart and did a search for Spasm and found your

excellent post. I read it and am so glad you put it on there.

I'm very interested in the anti-depressant meds we can go on. Might

not be a bad move all the way around!

Thanks

btw - are you part of the Meetup group? We're meeting at lin

Cider Mill this thursday. If you're available, you should check it out!

> Hi -- here's my standard " spasm pain " post... I hope something

in it is helpful to you! Welcome to the group!

>

> 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

>

>

>

>

>

> Debbie -

> I just joined the forum and am interested in what medication you all

> take for the spasms. I've been taking Nitro with limited success. What

> are some other options that you've heard about and recommend?

> Thanks so much for your time!

>

[Guest guest]

Add me to the list of A sufferers who've had NCCP. All this time I was

thinking that I had heartburn but wondered why my symptoms never quite

matched the descriptions on the antacid commercials. The last time I

had one, I just happened to drink a glass of cold water and the attack

went away. So the suggestion of drinking a warm or cold beverage might

have some merit (I wonder if cold beer will work).

My NCCP attacks are pretty rare and have almost always occurred when

I've been stuck in a very warm or very cold environment. Has anyone

else noticed any correlations between NCCP attacks and environmental

conditions or diet or anything?

Jeff