Re: Some Questions/and me venting!!

[Guest guest]

HI Shelli. I began having bowel problems about a year after I was

diagnosed. I was not diagnosed with achalasia right away though. I was

always regular and then suffered from terrible constipation. When I was

constipated, my achalasia got worse--increase in spasams, swallowing

difficulty, waking at night. I have since been diagnosed with irrital

bowel, and I still have a worse time with the achalasia when I am

constipated. I can count on getting " the pain " and I feel as if something

is stuck in my throat. (even if I have not eaten). I have never had a

myotomy. Lynda

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[Guest guest]

Dear Shelli: I also noticed constipation before the achalasia was diagnosed.

Is your feeling of the stomach pressing into your throat like a hard pain?

Does anyone out there smoke? Maybe smoking causes the nerve damage in this

disease? I hope everyone writes in on this one. Warmest regards, Elena

[Guest guest]

Hi--

Thought I'd weigh in on the topic of throat pain/discomfort. I'm

experiencing this myself, and will soon see an ear, nose, throat doctor

about it, just to see if he has some ideas about treatment.

I figure that this is really part of the overall esophogeal motility

problem, and it's not our stomachs, per se that pressing into our throats,

but something more directly related to the esophagus. Reactions to reflux

is my best guess.

I think it was Carol who first directed our attention to a really great

article online about achalasia and surgical treatment. This article, by

Zucker, is the best overall piece I've read on the subject (and I feel

like I've read a LOT).

Anyway, you can find it at

http://www.aalaparoscopic-surgery.com/achalasi.htmhttp

It's a long article, some of you may want to push Print!

Anyway, for me the most telling line of the article was at the very end,

when Zucker points out that 30% of us with mytomies will continue to have

substantial issues.

Signing off as one of the 30% (but still hopeful!)--

Vicki

[Guest guest]

I have never smoked, Elena and did not have constipation. I would love to know the cause of this disease. It seems everyone has different lifestyles and we still all ended up with Achalasia!

Alan

Re: Some Questions/and me venting!!

Dear Shelli: I also noticed constipation before the achalasia was diagnosed. Is your feeling of the stomach pressing into your throat like a hard pain? Does anyone out there smoke? Maybe smoking causes the nerve damage in this disease? I hope everyone writes in on this one. Warmest regards, Elena

[Guest guest]

Not a factor for me.

Jerry

At 02:00 PM 2/10/2001 -0500, EWagner593@... wrote:

>Does anyone out there smoke? Maybe smoking causes the nerve damage in this

>disease? I hope everyone writes in on this one. Warmest regards, Elena

[Guest guest]

Hi--

Alan has just brought up an interesting point: that we all seem to have

different lifestyles, yet we have this disease.

I think that this is one of the most complicated issues in coping with

achalasia, i.e., that it's easy to fall into the trap of thinking that if

we just had just made better choices, like about what we eat, we wouldn't have

this disorder.

My personal " unfavorite " comment is something like, " Did you get this from

too much stress? " or " Does stress make this worse? " This smacks of

blaming the victim, and it's just off base--for example, when I'm REALLY

under stress, I tend not to eat much and the achalasia, as a result, isn't

as evident.

There are certainly things we can do to manage this problem more

effectively,but I don't believe we have achalasia because we ate the

wrong foods or anything like that. This listserv has helped me clarify my

thinking about this.

So we all need to avoid beating ourselves up and spend all that energy

instead on taking good care of ourselves.

Vicki

[Guest guest]

Elena--

I don't smoke either or do much of anything else wild and dangerous either

(h'mm, I sound boring, don't I?). Smoking isn't good for you, but I don't

think it causes achalasia.

Vicki

[Guest guest]

I was reading from the page you gave the url for:

http://www.aalaparoscopic-surgery.com/achalasi.htm . (You added a http at

the end which needed to be removed.) There is an interesting paragraph

there about the vagus nerves. It says, " Esophageal peristalsis and LES

relaxation are both stimulated by the vagus nerves ... Recent evidence

suggests that there is a selective loss of inhibitory nerves ... Similar

microscopic findings have also been observed in the stomach, small bowel

and colon. ... investigators have noted a loss of vagal stimulation and

gastric acid secretion as well as a significant reduction in gallbladder

emptying mimicking a complete or partial vagotomy. Interestingly,

microscopic abnormalities can also be seen in tissues far removed from the

GI tract including the central nervous system. Degenerative changes have

also been noted in both the peripheral vagus nerve and dorsal motor nucleus

of the vagus. These neuropathic changes along with the similar histiopathic

findings found throughout the GI tract have raised some question as to

whether achalasia is a disorder of the GI tract or a distant manifestation

of a central nervous system disease.... "

More information from: http://www.britannica.com/seo/v/vagus-nerve/ : " The

vagus also gives off cardiac, esophageal, and pulmonary branches. In the

abdomen the vagus innervates the greater part of the digestive tract and

other abdominal viscera.

The vagus nerve has the most extensive distribution of the cranial nerves.

Its pharyngeal and laryngeal branches transmit motor impulses to the

pharynx and larynx; its cardiac branches act to slow the rate of heartbeat;

its bronchial branch acts to constrict the bronchi; and its esophageal

branches control involuntary muscles in the esophagus, stomach,

gallbladder, pancreas, and small intestine, stimulating peristalsis and

gastrointestinal secretions. "

I did some searching about the vagus and found that it plays a part in a

lot of disorders, including atrial fibrillation. Turns out that acid reflux

can irritate the vagus and cause atrial fibrillation. People with atrial

fibrillation have posted messages saying that they get relief by taking

antacids. For an interesting message posted about that see:

http://www.med-edu.com/HyperNews/patient/get/arrhythmias/afib-regulars/45/4.

html .

If the vagus does play a role in achalasia, then Allan's suggestion that

antacids give relief from achalasia may be working for the same reason

antacids work for atrial fibrillation. (Though I have not noticed that they

work for me.) And because the vagus controls bronchial constrictions,

perhaps those people that have said that they also have problems breathing

while having trouble swallowing, could be irritating the vagus and causing

the bronchi to constrict. And because the vagus is also connected to the

small intestine perhaps it explains some of the other problems people are

reporting here.

Anyway, it sounds like something that need more research.

Jerry

At 02:17 PM 2/10/2001 -0500, Vicki Roth wrote:

><SNIP

>I think it was Carol who first directed our attention to a really great

>article online about achalasia and surgical treatment. This article, by

>Zucker, is the best overall piece I've read on the subject (and I feel

>like I've read a LOT).

>

>Anyway, you can find it at

>http://www.aalaparoscopic-surgery.com/achalasi.htmhttp

><SNIP>

[Guest guest]

Vicki, I completely agree with you! So, many people, even close family members, have hinted that this disease is "all in your head." Many people said I should have tranquilizers, not surgery! I am very saddened to see so many fingers of blame pointed. The simple fact is that no one, not even the experts, know what causes this disease.

Thanks,

Alan

Re: Some Questions/and me venting!!

Hi--Alan has just brought up an interesting point: that we all seem to havedifferent lifestyles, yet we have this disease. I think that this is one of the most complicated issues in coping withachalasia, i.e., that it's easy to fall into the trap of thinking that ifwe just had just made better choices, like about what we eat, we wouldn't havethis disorder. My personal "unfavorite" comment is something like, "Did you get this fromtoo much stress?" or "Does stress make this worse?" This smacks ofblaming the victim, and it's just off base--for example, when I'm REALLYunder stress, I tend not to eat much and the achalasia, as a result, isn'tas evident.There are certainly things we can do to manage this problem moreeffectively,but I don't believe we have achalasia because we ate thewrong foods or anything like that. This listserv has helped me clarify mythinking about this.So we all need to avoid beating ourselves up and spend all that energyinstead on taking good care of ourselves.Vicki

[Guest guest]

no, I don't smoke.

Maybe we should design a questionnaire for everyone on this site to find out

if there are any common precursers to achalasia?

Jane

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

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

Dr Jane

Senior Research Associate

CSERGE (Centre for Social and Economic Research on the Global Environment

School of Environmental Sciences

University of East Anglia

Norwich NR4 7TJ

UK

j.c.powell@...

Tel: +44 (0) 1603 592822

Fax: +44 (0) 1603 593739

http://www.uea.ac.uk/env/cserge/

[Guest guest]

Dear Jane: I think the questionnaire is a great idea! Also, it can become

our first GROUP project! What do you think everybody!?!?!? Warmest regards,

Elena

[Guest guest]

About thirty years ago I was treated with amphetamines for a sleeping

disorder. Amphetamines are the prototype drugs for phentermine. Before

achalasia I had a habit of not taking a drink with pills of any type. I

wonder if toxic levels could be absorbed by the nerves along the esophagus.

Now that things take a long time to go down anyway, I wonder about taking

any meds.

Jerry

><SNIP>

> I know that I took phentermine half of that phen-fen about two

>years ago and after that I had bad constipation which up until then I

>was like a clock and then I started having difficulty swallowing.

> <SNIP>

[Guest guest]

Jane - This is a great idea! I'd be happy to do the questionnaire and send

out a general call for ideas about the kinds of questions we should ask.

Carol

Re: Some Questions/and me venting!!

> no, I don't smoke.

> Maybe we should design a questionnaire for everyone on this site to find

out

> if there are any common precursers to achalasia?

> Jane

>

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

> *********************************

> Dr Jane

> Senior Research Associate

> CSERGE (Centre for Social and Economic Research on the Global Environment

> School of Environmental Sciences

> University of East Anglia

> Norwich NR4 7TJ

> UK

>

> j.c.powell@...

> Tel: +44 (0) 1603 592822

> Fax: +44 (0) 1603 593739

> http://www.uea.ac.uk/env/cserge/

>

>

>

>

>

>

>

Shop online without a credit card

http://www.rocketcash.com

RocketCash, a NetZero subsidiary

[Guest guest]

OK with me!

[Guest guest]

Wonderful Idea ! Everyone can benefit from this.

Marilyn

[Guest guest]

Jane--

I would love to collaborate with you and others in designing an achalasia

survey, not only about precursers, but also about outcomes and management

strategies.

I'm not finding enough in the literature to satisfy me intellectually, and

I could certainly use some guidance from others who have this disorder.

Any ideas about how to get started? I've done online surveys before for my

research, but not on any medical subject. But I'd love to help get this

going.

Vicki

[Guest guest]

I think it's great also!!

EWagner593@... wrote:

> Dear Jane: I think the questionnaire is a great idea! Also, it can become

> our first GROUP project! What do you think everybody!?!?!? Warmest regards,

> Elena

>

[Guest guest]

Dear Jane: Please put: smoking, posture problems, IBS, chronic fatique,

reynoulds syndrome, problems with tonsils/sore throats in childhood, rosacea,

poor circulation, problems with teeth, antibiotic use, pill swallowing,

fybermyolgia, myasthanea gravis, lyme disease, cancer, reumatic arthritis,

spleen problems, mononeuclosis, stress, drinking, meat consumption. I can't

remember anything else from our postings, but I think it's important to see

who had what as an adult and as a child, what the parents have and

environmental hazards (i.e. who worked with chemicals), who traveled and

where (Brazil?). Also, is it really a good idea to post this information?

The poll should be anonymous. Are you going to poll the results or shall we

ask for volunteers? Is there a doctor out there who is interested in this

information from our group? I'd be nice to arrange a " live chat " for all of

us at a convenient time with a doctor/mediator. Lets all discuss this in

detail! Warmest regards, Elena

[Guest guest]

>From: EWagner593@... >Reply-achalasia >achalasia >Subject: Re: Some Questions/and me venting!! >Date: Mon, 12 Feb 2001 16:51:05 EST > >Dear Jane: I think the questionnaire is a great idea! Also, it can become >our first GROUP project! What do you think everybody!?!?!? Warmest regards, >Elena

GREAT IDEA... count us in.

Ray & NellGet your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Hi Vicki

I have had a good response to this survey idea but have not

much idea to go about it. Thanks for the offer of help. I

also do (academic) surveys for my work but not online.

perhaps we should start by asking everyone for ideas as to

what questions we should ask?

Jane

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

Dr Jane

Senior Research Associate

CSERGE

School of Environmental Sciences

University of East Anglia

Norwich NR4 7TJ

Tel: (44)(0)1603 592822

Fax: (44)(0) 1603 593739

j.c.powell@...

http://www.uea.ac.uk/env/cserge/

[Guest guest]

I, too, worry a lot about taking any drugs. I have found that

occasionally if I take a pill and I don't realize it doesn't go all

the way down, that it makes me feel quite sick. I think the doctors

should take into account the possibility of the pill dissolving in

the esophagus. I believe I read something on the Internet about some

meds causing damage if they don't dissolve properly in the stomach.

I don't know what the alternatives are for those who can't take pills

- dissolve in liquid? I'm not sure that would help - liquid stays in

my esophagus pretty bad also. Injections?

And I'm really leery of taking any asprin-type stuff - if it can

cause stomach problems in people think what it can do dissolving in

your esophagus!

I was just thinking that years ago I was on an anti-depressant drug

called anafranil and I noticed when I would take it that my chest

pains would be really bad. Now I wonder if that could have been a

cause of the condition or if it made it worse or something.

I also often didn't use water to take pills. I think that was mostly

with asprin though. Interesting discussion.

> About thirty years ago I was treated with amphetamines for a

sleeping

> disorder. Amphetamines are the prototype drugs for phentermine.

Before

> achalasia I had a habit of not taking a drink with pills of any

type. I

> wonder if toxic levels could be absorbed by the nerves along the

esophagus.

> Now that things take a long time to go down anyway, I wonder about

taking

> any meds.

>

> Jerry

>

> ><SNIP>

> > I know that I took phentermine half of that phen-fen about two

> >years ago and after that I had bad constipation which up until

then

I

> >was like a clock and then I started having difficulty swallowing.

> > <SNIP>

[Guest guest]

Great idea - I'd love to participate.

> no, I don't smoke.

> Maybe we should design a questionnaire for everyone on this site to

find out

> if there are any common precursers to achalasia?

> Jane

>

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

******

> *********************************

> Dr Jane

> Senior Research Associate

> CSERGE (Centre for Social and Economic Research on the Global

Environment

> School of Environmental Sciences

> University of East Anglia

> Norwich NR4 7TJ

> UK

>

> j.c.powell@u...

> Tel: +44 (0) 1603 592822

> Fax: +44 (0) 1603 593739

> http://www.uea.ac.uk/env/cserge/

[Guest guest]

I would add any other neurological or muscle disorders, such as Dystonia (a

neurological movement disorder characterized by involuntary muscle

contractions). Also, depression, epilepsy and any sleep disorders,

neurological or otherwise. Also, snoring, sleep apnea, or holding breath

for a long time, such as while free diving. And heavy metal exposure. Do

they work with lead or such. (Personally, I have used a lot of solder).

Also, neck injuries. And chickenpox ,shingles and herpes (any kind). These

viruses hide in nerves the rest of your life. I would have them rate things

like, very bad, bad, average, mild, very mild, never.

Jerry

At 11:54 AM 2/13/2001 -0500, EWagner593@... wrote:

>Dear Jane: Please put: smoking, posture problems, IBS, chronic fatique,

>reynoulds syndrome, problems with tonsils/sore throats in childhood, rosacea,

>poor circulation, problems with teeth, antibiotic use, pill swallowing,

>fybermyolgia, myasthanea gravis, lyme disease, cancer, reumatic arthritis,

>spleen problems, mononeuclosis, stress, drinking, meat consumption. <SNIP>

[Guest guest]

hi Jane

I would also like to offer help with this survey, in any way that I

can. Another possible is of anyone having any kind of head trauma as

there may be a link. I suffered a head injury when I was young and

often think that it may have been the cause, that and the fact that

both my father and my grandmother died from cancer of the oesphagus.

my consusltant thinks that there may be a link and is currrently

trying to retrieve my father's records.

Jess

[Guest guest]

I'm al for the questionnaire and would answer it. Re: Some Questions/and me venting!! Dear Jane: I think the questionnaire is a great idea! Also, it can become our first GROUP project! What do you think everybody!?!?!? Warmest regards, Elena Get your FREE download of MSN Explorer at http://explorer.msn.com