Re: Spasms and Spasms and more Spasms..

[Guest guest]

Hi Tonia

What a terrible disease for to get at 18. When I was real bad

4-5 years ago , before I knew that I had Achalasia, I went to Mac's every

morning for coffee. The coffee finally wouldn't go down, so I had read in a

medical book that CO2 opens the LES.

Then I went to the fountain at Mac's and drank the CO2 off the coke, I did

this for years then later went back to coffee. Now I have found out what I can

eat and doing well, most of the time. I still get coffee at Mac's every

day, then get another cup on my walk back, the second cup brings up anything

left in the e and I regurgitate it along the street. Then I can eat oat cereal

with a lot of fiber and Lactaid milk.

I add a lot of real butter (fat opens the LES and relaxes it, medical report) to

well done toast with cheese slices and Bushes real small beans mixed with water

at lunch . Usually soup and chocolate cake with ice cream for dinner and

several Ensures plus daily. I have had no operations or dilations.

My secret is CO2 and a lot of butter. I take Crestor 20 mg. It took me several

years finding out how to manage " My Achalasia " . I do get fed up at times but at

my age this is better than an operation!!!

Ray CA OC 80 old as hell but still active!

--- In achalasia , " Tonia " <tcooper1973@...> wrote

>

> Hello All- Its been a while for some of you but many of you I see on facebook.

As you see in my topic line , things are still ruff for .He is a senior

this year but with the constant spasms he has, he is now on home bound from

school again.The pain Dr has pretty much told us he cant help us anymore as he

has tried everything for for pain with no relief. We have even bought pure

peppermint oil and tried that but didnt help.We know that esophectomy is the

only option left but when he can eat everything and anything you dont wanna go

to that extreme ya know?

> We have been up all night as he is having bad bouts of nasuea , vomiting, the

past 2 days.Thank God the phenegran works!Im assuming a virus. He constantly has

something going on.Poor kid. has also developed IBS they think from stress

about the spasms.Do any of you also have that along with A?

> Where do we go from here? I dont know.... Honestly , at this point I dont see

graduating.He is sooo far behind. also is not physically or

mentally ready for that extreme of a operation. I have talked and met many

people on facebook with this disease now.Its unbelievable! Its like people are

coming out of the wood work with this disease.I only hope and pray there is a

cure here in the near future as so many people are suffering. Hopefully more

awareness will help aid in the research and cure! I have been talking with one

lady who has been in touch with Dr Phils Producers..keep your fingers crossed.We

need awareness and that would be a great start! I hope you all are well in 2011.

> Tonia In Virginia

>

[Guest guest]

Tonia - have you contacted Dr. Rice again about the spasms? I don't think I know

of anyone who has had them constantly.

I know you are holding out for a cure but honestly - that could be years. In the

meantime, living in constant pain is no way to live.

from Australia has been posting on the 'achalasia help' page on facebook -

she used some kind of tens unit I believe. Maybe check into that?

Otherwise, you may really need to move forward - I know (trust me) how radical

it all is but I haven't had a spasm in 3 years now and I eat pretty much what I

want (a few restrictions) and otherwise, NO ONE knows there is anything

'different' about me unless I tell them. I am a healthy weight, I feel great and

I have NO MORE SPASMS!!

He may not be in the best shape mentally or physically at this point for surgery

but if you can't figure out anything else - that's NOT going to improve.

I'm here to talk for either or both of you if you EVER need. Don't hesitate to

call me. 252-256-3843

Give my best. I'm thinking of you both.

~ in NC

achalasia free since Jan. 11 2008

>

> Hello All- Its been a while for some of you but many of you I see on facebook.

As you see in my topic line , things are still ruff for .He is a senior

this year but with the constant spasms he has, he is now on home bound from

school again.The pain Dr has pretty much told us he cant help us anymore as he

has tried everything for for pain with no relief. We have even bought pure

peppermint oil and tried that but didnt help.We know that esophectomy is the

only option left but when he can eat everything and anything you dont wanna go

to that extreme ya know?

> We have been up all night as he is having bad bouts of nasuea , vomiting, the

past 2 days.Thank God the phenegran works!Im assuming a virus. He constantly has

something going on.Poor kid. has also developed IBS they think from stress

about the spasms.Do any of you also have that along with A?

> Where do we go from here? I dont know.... Honestly , at this point I dont see

graduating.He is sooo far behind. also is not physically or

mentally ready for that extreme of a operation. I have talked and met many

people on facebook with this disease now.Its unbelievable! Its like people are

coming out of the wood work with this disease.I only hope and pray there is a

cure here in the near future as so many people are suffering. Hopefully more

awareness will help aid in the research and cure! I have been talking with one

lady who has been in touch with Dr Phils Producers..keep your fingers crossed.We

need awareness and that would be a great start! I hope you all are well in 2011.

> Tonia In Virginia

>

[Guest guest]

yes sorry james not a nice thing to have

mine is not to bad specially after the surgery but still get it at times,

and seems to be

more often you see they did surgery on the achalasia, but couldnt on the

difuse spasms i get

but certainly alot better than it was had surgey afew years ago

by the way sorry haven't posted in ages

happy new year to all

sue w

On Fri, Jan 7, 2011 at 6:11 PM, mer <ray_me_99@...> wrote:

> Hi Tonia

> What a terrible disease for to get at 18. When I was real bad

> 4-5 years ago , before I knew that I had Achalasia, I went to Mac's

> every morning for coffee. The coffee finally wouldn't go down, so I had read

> in a medical book that CO2 opens the LES.

>

> Then I went to the fountain at Mac's and drank the CO2 off the coke,

> I did this for years then later went back to coffee. Now I have found out

> what I can eat and doing well, most of the time. I still get coffee at

> Mac's every day, then get another cup on my walk back, the second cup

> brings up anything left in the e and I regurgitate it along the street. Then

> I can eat oat cereal with a lot of fiber and Lactaid milk.

>

> I add a lot of real butter (fat opens the LES and relaxes it, medical

> report) to well done toast with cheese slices and Bushes real small beans

> mixed with water at lunch . Usually soup and chocolate cake with ice cream

> for dinner and several Ensures plus daily. I have had no operations or

> dilations.

>

> My secret is CO2 and a lot of butter. I take Crestor 20 mg. It took me

> several years finding out how to manage " My Achalasia " . I do get fed up at

> times but at my age this is better than an operation!!!

>

> Ray CA OC 80 old as hell but still active!

>

>

> --- In achalasia , " Tonia " <tcooper1973@...> wrote

> >

> > Hello All- Its been a while for some of you but many of you I see on

> facebook. As you see in my topic line , things are still ruff for .He

> is a senior this year but with the constant spasms he has, he is now on home

> bound from school again.The pain Dr has pretty much told us he cant help us

> anymore as he has tried everything for for pain with no relief. We

> have even bought pure peppermint oil and tried that but didnt help.We know

> that esophectomy is the only option left but when he can eat everything and

> anything you dont wanna go to that extreme ya know?

> > We have been up all night as he is having bad bouts of nasuea , vomiting,

> the past 2 days.Thank God the phenegran works!Im assuming a virus. He

> constantly has something going on.Poor kid. has also developed IBS

> they think from stress about the spasms.Do any of you also have that along

> with A?

> > Where do we go from here? I dont know.... Honestly , at this point I dont

> see graduating.He is sooo far behind. also is not physically or

> mentally ready for that extreme of a operation. I have talked and met many

> people on facebook with this disease now.Its unbelievable! Its like people

> are coming out of the wood work with this disease.I only hope and pray there

> is a cure here in the near future as so many people are suffering. Hopefully

> more awareness will help aid in the research and cure! I have been talking

> with one lady who has been in touch with Dr Phils Producers..keep your

> fingers crossed.We need awareness and that would be a great start! I hope

> you all are well in 2011.

> > Tonia In Virginia

> >

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

Tonia wrote:

> ... We have even bought pure peppermint oil and tried that but didnt help. ...

There is a logic behind the peppermint oil. I think spasms may require

more than one type of action though to control them. You could try

adding clove oil to the peppermint oil. I would add the oils to

something like a liquid antacid such as Maalox. Don't take the oils

alone as on contact they could be too strong and irritate where they

touched. Irritation could could be counter productive. So mix them

with something, but not too much, just a spoonful. Some people mix with

it honey. I would start with just one drop of clove oil and work up to

about 5 if needed. Don't take too much. Using the antacid would give it

another type of action to sooth the esophagus. Of course taking it along

with pain meds would also add another type of action.

I don't use clove oil for spasm so I can't say it has ever worked for

me. I have told others I see a logic to it but if anyone has ever tried

it I have not gotten any feedback on it. This is just a kind of a shot

in the dark. Just a thought.

If by any chance any of this did help and He ends up using it for more

than short term, be sure to let his doctor know.

notan

[Guest guest]

Hi Tonia

Good to hear from you again. Sorry to hear that continues to have spasms

with pain and that he now has IBS. Yes I answered your post just to say that

after having the ectomy back in October 2004 I went on to develop IBS too in

that I havre to watch what I eat or I find myself having accidents if I can't

get to the loo in time if you know what I mean. It is horrible I know but is

just a matter of finding out what the trigger foods are and they are mainly

sugary sweet foods or foods with pastry, choclate in very small amounts only can

be eaten but any more and you have to rush to the toilet. Yes it is a matter of

finding out what the trigger foods are and listening to what your body says.

Keep us posted on how is coping.

from the UK

________________________________

From: Tonia <tcooper1973@...>

achalasia

Sent: Fri, January 7, 2011 5:11:49 PM

Subject: Spasms and Spasms and more Spasms..

 

Hello All- Its been a while for some of you but many of you I see on facebook.

As you see in my topic line , things are still ruff for .He is a senior

this year but with the constant spasms he has, he is now on home bound from

school again.The pain Dr has pretty much told us he cant help us anymore as he

has tried everything for for pain with no relief. We have even bought pure

peppermint oil and tried that but didnt help.We know that esophectomy is the

only option left but when he can eat everything and anything you dont wanna go

to that extreme ya know?

We have been up all night as he is having bad bouts of nasuea , vomiting, the

past 2 days.Thank God the phenegran works!Im assuming a virus. He constantly has

something going on.Poor kid. has also developed IBS they think from stress

about the spasms.Do any of you also have that along with A?

Where do we go from here? I dont know.... Honestly , at this point I dont see

graduating.He is sooo far behind. also is not physically or mentally

ready for that extreme of a operation. I have talked and met many people on

facebook with this disease now.Its unbelievable! Its like people are coming out

of the wood work with this disease.I only hope and pray there is a cure here in

the near future as so many people are suffering. Hopefully more awareness will

help aid in the research and cure! I have been talking with one lady who has

been in touch with Dr Phils Producers..keep your fingers crossed.We need

awareness and that would be a great start! I hope you all are well in 2011.

Tonia In Virginia

[Guest guest]

Tonia --

Have they done manometry or fluoroscopy DURING ' pains to determine if

there is any esophageal activity going on at the time? (as in, are the pains

associated with actual spasms happening, or a " stuckage " , or a " ping-pong

effect " , or just a screwed up nerve situation?)

Have they tried all the available serotonin-affecting meds and anti-convulsants?

I recently went off an anti-depressant medication, and I noticed an increase in

NCCP frequency within a week... happens every time! *sigh*

Debbi in Michigan

(aka Pepto-Deb)