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Living with achalasia. February 2012

First of all, I am not a physician; these are just personal experiences.

I have had achalasia since age 65 in1995. I first was aware of swallowing

difficulties, simultaneous with a collection of other bothers: weakness of the

legs, mild tingling over much of the torso, and a generalized mild rash. I

chatted about it with a colleague, a professor of pharmacology with a specific

interest in swallowing (for which, tongue-in-cheek, he has adopted the term

neurocataposeology). He asked what medications I was on, and found possible

concern only with a calcium channel blocker that I had recently begun to take to

lower blood pressure.

I quit taking the Ca channel blocker. The weakness, tingling and rash subsided,

but a balloon-swallowing test performed by a gastroenterologist showed clearly

that I completely lacked innervation (and hence peristalsis) in the esophagus.

The trouble with the lack of peristalsis is that the ring of muscle that is the

lower esophageal sphincter (LES) usually does not open and allow food to pass

into the stomach till it gets a signal from an arriving wave of constriction of

the esophagus.

Did the Ca channel blocker have anything to do with the set of symptoms, or was

it just a coincidence? I don't know.

I had botox injections into the LES to relax it. This seemed to help with

allowing food to go from the esophagus into the stomach, though after a few

months the effect seemed to wear off, and over the years I have occasional

repeats of the botox. I have not had Heller-type or any other surgery.

I have occasional bouts of what I call " achalasia attacks " when I have been

" adventurous " , or maybe rash, in my eating. The trouble is caused by things

that are fibrous, such as steak, tuna, salads. Foods that are liquid, or that I

can " mush " are generally OK, but before I eat I have a large glass of milk or

other liquid. I can eat liquid soups, well-cooked stews, mashed vegetables,

meat pies (Melton-Mowbray pies that have finely-ground pork in them are

particularly easy to chew to a mush!). Also good is corned- beef hash, Spam,

and things like that. Fish and chips is almost always OK. Ice cream,

smoothies, crème brulee, custards, fruit pies are great. Beer and wine are

fine, but I find myself more sensitive to acidic drinks than I used to be, so I

often settle for a soft drink or tea.

If I do get an attack of achalasia, the first warning that I get is that I

produce copious saliva, and soon thereafter a very uncomfortable pain in the

esophagus. I find that the pain is much alleviated if I can lie down for an

hour or more, but I have been warned that this may cause food to get in to the

airways. It doesn't seem to do so in my case, but I realize that the

consequences would be so severe that I hesitate to recommend that others try it.

An oddity is that I can tell within a minute or so when the LES has relaxed, and

the food has at least partially gone into the stomach. The feeling of relief is

great when it happens!

I find that the LES seems to constrict overnight, so in the morning I often have

a glass of milk or a " milk + instant breakfast " drink, or a mug of warm tea

first. Thereafter, an omelet, toasted English muffin or crumpet + butter and

jam is usually no trouble.

Sources of reliable professional information that I have found include:

1) A site related to the science magazine " Nature " :

http://www.nature.com/gimo/index.html

2) Pubmed: http://www.ncbi.nlm.nih.gov/sites/entrez

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Weird, me too. Anyone else??????

Sent from my iPod

On Jun 5, 2012, at 20:10, " Christa D. Deegan " <christa1110@...> wrote:

> faith~

> me! went to doctor yesterday. waiting for the blood results. my

feet/legs and to some degree my pelvis feel numb and tingly non-stop. also

just noticed a small rash on leg near ankles. doctor suspects a b-12

decifiency.....will see what the results show, i guess. yesterday when i was

driving, my right foot was so numb that i could not make the connection between

the pedal and my foot on the pedal. pretty scary.

> christa

> ohio

>

> >________________________________

> > From: Faith Weiss <weissf@...>

> > " achalasia " <achalasia >

> >Sent: Tuesday, June 5, 2012 8:42 PM

> >Subject: Re: Living with achalasia

> >

> >

> >

> >

> >

> >Hi,

> >

> >Anyone else experience a rash and tingling,

> >and weakness?

> >

> >Sent from my iPod

> >

> >On Jun 5, 2012, at 13:24, " jcorr@... " <jcorr@...> wrote:

> >

> >> Living with achalasia. February 2012

> >>

> >> First of all, I am not a physician; these are just personal experiences.

> >>

> >> I have had achalasia since age 65 in1995. I first was aware of swallowing

difficulties, simultaneous with a collection of other bothers: weakness of the

legs, mild tingling over much of the torso, and a generalized mild rash. I

chatted about it with a colleague, a professor of pharmacology with a specific

interest in swallowing (for which, tongue-in-cheek, he has adopted the term

neurocataposeology). He asked what medications I was on, and found possible

concern only with a calcium channel blocker that I had recently begun to take to

lower blood pressure.

> >>

> >> I quit taking the Ca channel blocker. The weakness, tingling and rash

subsided, but a balloon-swallowing test performed by a gastroenterologist showed

clearly that I completely lacked innervation (and hence peristalsis) in the

esophagus. The trouble with the lack of peristalsis is that the ring of muscle

that is the lower esophageal sphincter (LES) usually does not open and allow

food to pass into the stomach till it gets a signal from an arriving wave of

constriction of the esophagus.

> >>

> >> Did the Ca channel blocker have anything to do with the set of symptoms, or

was it just a coincidence? I don't know.

> >>

> >> I had botox injections into the LES to relax it. This seemed to help with

allowing food to go from the esophagus into the stomach, though after a few

months the effect seemed to wear off, and over the years I have occasional

repeats of the botox. I have not had Heller-type or any other surgery.

> >>

> >> I have occasional bouts of what I call " achalasia attacks " when I have been

" adventurous " , or maybe rash, in my eating. The trouble is caused by things that

are fibrous, such as steak, tuna, salads. Foods that are liquid, or that I can

" mush " are generally OK, but before I eat I have a large glass of milk or other

liquid. I can eat liquid soups, well-cooked stews, mashed vegetables, meat pies

(Melton-Mowbray pies that have finely-ground pork in them are particularly easy

to chew to a mush!). Also good is corned- beef hash, Spam, and things like that.

Fish and chips is almost always OK. Ice cream, smoothies, crème brulee,

custards, fruit pies are great. Beer and wine are fine, but I find myself more

sensitive to acidic drinks than I used to be, so I often settle for a soft drink

or tea.

> >>

> >> If I do get an attack of achalasia, the first warning that I get is that I

produce copious saliva, and soon thereafter a very uncomfortable pain in the

esophagus. I find that the pain is much alleviated if I can lie down for an hour

or more, but I have been warned that this may cause food to get in to the

airways. It doesn't seem to do so in my case, but I realize that the

consequences would be so severe that I hesitate to recommend that others try it.

> >>

> >> An oddity is that I can tell within a minute or so when the LES has

relaxed, and the food has at least partially gone into the stomach. The feeling

of relief is great when it happens!

> >>

> >> I find that the LES seems to constrict overnight, so in the morning I often

have a glass of milk or a " milk + instant breakfast " drink, or a mug of warm

tea first. Thereafter, an omelet, toasted English muffin or crumpet + butter and

jam is usually no trouble.

> >>

> >> Sources of reliable professional information that I have found include:

> >> 1) A site related to the science magazine " Nature " :

http://www.nature.com/gimo/index.html

> >> 2) Pubmed: http://www.ncbi.nlm.nih.gov/sites/entrez

> >>

> >>

> >

> >

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