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

[Guest guest]

Hi -- here's my standard "spasm pain" post... I hope something in it is helpful to you! Welcome to the group!Debbi in Michigan

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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.

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.

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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 alltake for the spasms. I've been taking Nitro with limited success. Whatare some other options that you've heard about and recommend?Thanks so much for your time!

[Guest guest]

I hope something in there works for you, !I'm not in the meetup b/c I'm way over here in Kalamazoo county. I work full-time and have a 4yo son and a husband who travels, so it's very difficult for me to make it to a meetup in the Detroit area. (Plus we're leaving on a 10-day cruise early Sunday morning.)

But if anyone's gonna be in the SW Michigan area anytime, please let me know -- even if it's just two of us and not a whole "meetup" group, I'm always interested in meeting fellow Achalasians!Debbi

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

DebbiI actually just got smart and did a search for Spasm and found yourexcellent 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. Mightnot be a bad move all the way around!:)Thanksbtw - are you part of the Meetup group? We're meeting at linCider Mill this thursday. If you're available, you should check it out!> Hi -- here's my standard "spasm pain" post... I hope somethingin it is helpful to you! Welcome to the group!> > Debbi in Michigan> > ----------------------------------------------------------------------> > Chest pains, heartburn, acid reflux, spasm pains, NCCPs.... what theheck 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 toachalasia. The official medical term that I've found for the "spasmpain" is "NCCP" or Non Cardiac Chest Pain. There are multiple termsused for "heartburn" including: acid indigestion, acid reflux,GERD/GORD, etc.> > In my pre-achalasia days, I would have "indigestion/heartburn" oncein a while (after a particularly large, fatty, acidic meal, etc.),maybe once or twice a year. I would have that nasty acid taste in mymouth when I burped, and a hot/burning sensation in the area of mybreastbone. While not particularly comfortable, it wasn't anexcruciating, debilitating pain, and taking some Tums or other antacidwould neutralize it and both the taste and the discomfort would go away.> > When I had my first NCCP, I had been having problems swallowing fora few years but hadn't yet been diagnosed with anything, and I had noclue that the pain was related to my swallowing problems. I thoughtthe pain was some gawd-awful gas pains -- felt like something wasstabbing me from the inside out! The pain seemed to start in the ribsand almost squeeze my chest with searing pain that seemed to shoot upinto my neck, too. (note: everyone can experience NCCPs in varyingdegrees and in various parts of the body, including stomach, chest,shoulders, neck, back, jaw, tongue, teeth, and roof of the mouth.) Ilived alone at the time, and I drove to a convenience store and boughtthree rolls of Rolaids and ate two whole rolls. That didn't have anyeffect 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 kitchenholding onto the countertop and just WAILING at the top of my lungsbecause it hurt so bad, and my knees buckling from the pain. Mywailing 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 whilesobbing. This was almost a decade ago and I don't know how long itwent on, but I'm thinking that it was well over an hour of thatconstant wailing. Boy, those were the days, huh? ;o)> > For people whose doctors believe that NCCPs are an "atypical" (notnormal) symptom for achalasia patients, point them in the direction ofthis informal poll here on our group:achalasia/surveys?id=1037310 Thepoll is now closed, so who knows how many more would be added to it ifit were still accepting votes. If you scroll down to the end, 38people reported that they have these "spasms", and 5 people reportedthat they don't have spasms. So out of 43 people who answered thepoll, 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 chestpains, 2 were given intravenous Valium, 3 were given Demerol or othernarcotic injection, and 7 were given no treatment whatsoever.... isn'tthat sad? 58% of the people who were in such severe pain that theywent to the E.R. for relief were given NO TREATMENT at all!!! That isSO unnecessary!!!!> > Here's some info that I copied from an old post of mine -- if yourdoctor will bother to do some simple web searches, he'll see thatcalcium channel blockers, nitroglycerine, and anti-depressants are alldocumented ways to treat NCCP in people with esophageal disorders! Maybe if you print it out and show it to him, he'll be willing tooffer you some help in dealing with this. > > =============================================> > Here's some basic info that I've posted in the past -- differentthings work for different people, so it's basically just an experimentto 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 chugwarm --not hot-- water as fast as I can).> > -- CCB medication (calcium channel blockers) -- when I'm havingNCCPs, I prick the shell of a nifedipine capsule and squirt it undermy tongue. It absorbs into the bloodstream under the tongue (this iscalled a "sub-lingual" medication, meaning under-tongue) and relaxessmooth muscle tissue (which is what the esophagus is made up of). Youcan also just swallow the capsule, but since we have troubleswallowing in the first place, I've found the under-the-tongue methodworks best (then you just swallow when you've held it there as long asyou can and your saliva requires a swallow). Unfortunately, it canalso lower your blood pressure (usually only a problem if you alreadyhave low BP to begin with) and cause a headache afterwards -- somepeople experience this, some don't. CCB's can also be tried in the"slow release" formula as a preventative to having NCCPs start in thefirst place.> > -- Nitroglycerin medication -- works in much the same way as the CCBmentioned above, and can also be taken sublingually for fast relief.> > -- Certain anti-depressant and anti-convulsant medications -- somepeople don't have NCCPs when on these types of medications, believedto be a function of the medicine's effect on serotonin in the brain(antidepressants such as Nortryptaline, Amitryptaline, Imipramine andTrazodone have been studied; Neurontin is being studied in a similarway for "phantom limb pain" in amputees, etc.) People in the grouphave had luck with Paxil, Ativan, Nortryptaline, etc. The dosageneeded in this case is generally lower than the dosage that isnormally used to treat depression.> > -- L'Argnine supplements -- some people have found these relieveNCCP symptoms. > > -- If symptoms are debilitating and none of the methods above help,you may need a narcotic pain reliever, but definitely try all theoptions 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 thatdoesn't involve narcotics.> > =============================================> > In the last few years I've taken three different drugs that affectserotonin (two were antidepressants, and one isn't considered to be ananti-depressant medication but does have an effect on serotonin); anytime I was on one of those drugs, my NCCPs have either disappearedentirely, or been nearly eliminated and greatly reduced in severity.And each time I discontinued a serotonin-effect drug, the NCCPsstarted up again within a month's time. One member here who was inthe E.R. repeatedly for debilitating NCCPs finally had a doctorprescribe a low-dose daily antidepressant; her NCCPs have beeneliminated.... no more pain, no more narcotics, no more trips to thehospital. > > There are soooooooooooo many things that can be done to reduceNCCPs, 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 dealswith their Maker at 3:00 in the morning just ONCE, and you can betyour 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]

Hi

Welcome to the group. This is a

great source of support and information that you most likely will not find

anywhere else. This group is the best!

I have been taking nitroglycerin for

spasms, and I get relief most of the time. Not always though. My

surgeon reccommended Extra Strength Gaviscon. I bought it Saturday, so

that I would have it, if needed, not if it was too late!! Sure enough, I

woke up last night with spasms, and popped 2 tablets in my mouth. They

worked. So, 1/1 with Gaviscon, I will keep using it, and hope that it

continues to work. The regular strength Gaviscon is liquid form, extra

strength is tablets that you chew with water. They fizz and foam and are

a very odd texture, but if they work, I don’t care!!

I hope you find something that works for

you! It is *usually* trial and error.

Chilliwack, BC

snip<I just joined the

forum and am interested in what medication you all

take for the

spasms>