Re: unexplained/neuropathic pain

[Guest guest]

Katy, I have the spams, was treated in the beginning

with nitroglycerin and it didn't help me at all. The

results were, I ended up having a terrific headache for

hours.

Magg

Alabama

[Guest guest]

Kathy. I also have the chest pains and in the early years tried nitroglycerin but it never seemed to help. I hate to say never -because I don't know how bad they could of been without it. I only take colar syrup now-which my doctor did not give to me but knoes I take it.

Nell-----Michigan

>From: kkoerber@... >Reply-achalasia >achalasia >Subject: unexplained/neuropathic pain >Date: Wed, 11 Sep 2002 23:04:13 -0500 > >Hey all; I don't write tons but I do read most of the posts and keep up. >I have a question, but I'll give you a little of my background first: >I'm 23 and have had A for two years. I had a myotomy/fundoplication 15 >months ago and while my eating was greatly improved by the surgery, my >chest pains were not. The pains are excruciating and happen mostly at >night but sometimes during the day; are sometimes helped by drinking >water or eating, and sometimes not. A barium swallow showed no signs of >reflux, and my docs have tried nitroglycerin, which doesn't work at all. >This led them to rule out spasms, although the pain feels very similar to >the Beatles chord spasms that have been described here before. I had the >pain both before and after the surgery, and it's less frequent now than >before, but it feels exactly the same when it comes on. We have also >tried amytriptalene and doxepin, which sometimes dulled the pain, but >didn't kill it and had yucky side effects. I take vicodin when it gets >really bad, but it doesn't always work and I can't take it during the day >because it messes me up too much. My docs say they think I have >neuropathic pain, which is basically just my nerves randomly firing as >the achalasia kills them. They think it might go away eventually (like, >years from now) but nobody knows for sure. They think botox might help, >but it might not, and since i'm so young, I could conceivably end up >having botox every six months for the next sixty to eighty years, which I >don't like the idea of. > >So, my question is this: has anyone else been diagnosed with neuropathic >or "nerve" pain as a result of their A? what was the treatment? has >anyone been dignosed with spasms but had nitroglycerin not work for them >(i'm wondering if these are spasms and i just need a different drug)? >has anyone been on neurontin, and did it work for them? > >thanks so much >-katy > >________________________________________________________________ >GET INTERNET ACCESS FROM JUNO! >Juno offers FREE or PREMIUM Internet access for less! >Join Juno today! For your FREE software, visit: >http://dl.www.juno.com/get/web/. Chat with friends online, try MSN Messenger: Click Here

[Guest guest]

I get the same pain as yourself and my surgeon told me it was very severe

trapped wind and that this pain in severity can mimic a heart attack,I hope

this is helpful. I get some relief if I can make myself belch (until

recently this was difficult to do but I haven't been able to stop belching

for about a month now)

South Wales u.k

unexplained/neuropathic pain

> Hey all; I don't write tons but I do read most of the posts and keep up.

> I have a question, but I'll give you a little of my background first:

> I'm 23 and have had A for two years. I had a myotomy/fundoplication 15

> months ago and while my eating was greatly improved by the surgery, my

> chest pains were not. The pains are excruciating and happen mostly at

> night but sometimes during the day; are sometimes helped by drinking

> water or eating, and sometimes not. A barium swallow showed no signs of

> reflux, and my docs have tried nitroglycerin, which doesn't work at all.

> This led them to rule out spasms, although the pain feels very similar to

> the Beatles chord spasms that have been described here before. I had the

> pain both before and after the surgery, and it's less frequent now than

> before, but it feels exactly the same when it comes on. We have also

> tried amytriptalene and doxepin, which sometimes dulled the pain, but

> didn't kill it and had yucky side effects. I take vicodin when it gets

> really bad, but it doesn't always work and I can't take it during the day

> because it messes me up too much. My docs say they think I have

> neuropathic pain, which is basically just my nerves randomly firing as

> the achalasia kills them. They think it might go away eventually (like,

> years from now) but nobody knows for sure. They think botox might help,

> but it might not, and since i'm so young, I could conceivably end up

> having botox every six months for the next sixty to eighty years, which I

> don't like the idea of.

>

> So, my question is this: has anyone else been diagnosed with neuropathic

> or " nerve " pain as a result of their A? what was the treatment? has

> anyone been dignosed with spasms but had nitroglycerin not work for them

> (i'm wondering if these are spasms and i just need a different drug)?

> has anyone been on neurontin, and did it work for them?

>

> thanks so much

> -katy

>

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>

[Guest guest]

I have never had any help from taking nitro when an attack has occurred. The best help I get is when I drink ice water so you will never find me without my frozen bottle of water.

unexplained/neuropathic pain> Hey all; I don't write tons but I do read most of the posts and keep up.> I have a question, but I'll give you a little of my background first:> I'm 23 and have had A for two years. I had a myotomy/fundoplication 15> months ago and while my eating was greatly improved by the surgery, my> chest pains were not. The pains are excruciating and happen mostly at> night but sometimes during the day; are sometimes helped by drinking> water or eating, and sometimes not. A barium swallow showed no signs of> reflux, and my docs have tried nitroglycerin, which doesn't work at all.> This led them to rule out spasms, although the pain feels very similar to> the Beatles chord spasms that have been described here before. I had the> pain both before and after the surgery, and it's less frequent now than> before, but it feels exactly the same when it comes on. We have also> tried amytriptalene and doxepin, which sometimes dulled the pain, but> didn't kill it and had yucky side effects. I take vicodin when it gets> really bad, but it doesn't always work and I can't take it during the day> because it messes me up too much. My docs say they think I have> neuropathic pain, which is basically just my nerves randomly firing as> the achalasia kills them. They think it might go away eventually (like,> years from now) but nobody knows for sure. They think botox might help,> but it might not, and since i'm so young, I could conceivably end up> having botox every six months for the next sixty to eighty years, which I> don't like the idea of.>> So, my question is this: has anyone else been diagnosed with neuropathic> or "nerve" pain as a result of their A? what was the treatment? has> anyone been dignosed with spasms but had nitroglycerin not work for them> (i'm wondering if these are spasms and i just need a different drug)?> has anyone been on neurontin, and did it work for them?>> thanks so much> -katy>> ________________________________________________________________> GET INTERNET ACCESS FROM JUNO!> Juno offers FREE or PREMIUM Internet access for less!> Join Juno today! For your FREE software, visit:> http://dl.www.juno.com/get/web/.>>>>>

[Guest guest]

To be honest with everyone, my theory on this thing called a spasm is gas backing up. I found that the spasms were more fierce when I had eaten gassy foods. Because I am lactose intolerant, I always had a problem with foods that had a little milk in them. It can be very painful. Bev.

[Guest guest]

Hi Bev,

I don’t think my spasms are from gas

as they are so gripping in my chest region as to mimic a heart attack (I

presume)  If I have a spasm, I don’t

have any gas at all, so for my case, my spasms are not  from gas. 

My other pains, which are reflux type pains don’t have gas either, but I

have cut out foods which cause acid, like onions for instance.  I just don’t eat them anymore and I don’t

have the reflux.

Just my own thoughts, but would be

pleased to hear if other people can trace it to gas or not.

Lynette in Australia

-----Original

Message-----

From: tedbevboo@...

[mailto:tedbevboo@...]

Sent: Friday, 13 September 2002

09:07

achalasia

Subject: Re:

unexplained/neuropathic pain

To be

honest with everyone, my theory on this thing called a spasm is gas backing up.

I found that the spasms were more fierce when I had eaten gassy foods. Because

I am lactose intolerant, I always had a problem with foods that had a little

milk in them. It can be very painful. Bev.

Your use of

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Terms of Service.

[Guest guest]

Hi,

I had the myotomy 30 years ago, and although I swallow OK most of

the time, I haven't got rid of the chest pains, spasms or not. There

are better periods and worse periods, but they always come at the

most unexpected times. I tried a lot of medications, nitro and

Niphedipine and other things, sometimes they helped, sometimes not,

but always had horrible side effects. Drinking water immediately

when I feel the spasm coming usually helps, but not if I wait even a

few minutes, so I always have a small water bottle in my bag.

A few weeks ago I read in this group about Altoids (peppermint oil

pastiles). I was very skeptic, but thought I'll give them a try,

and I'm happy to say that it looks like THEY WORK!!! Whenever I get

an uncomfortable feeling in my chest, or start belching, I

immediately pop a tablet in my mouth, and I sort of feel a cold wind

going down my esophagus and relaxing it. Maybe I didn't get a REAL

BAD spasm all this time, but if it helps at all it's wonderful,

because it's not medicine and they don't have any side-effects, so I

don't wait to be certain that I MUST take them, like I did with the

medicines.

So, to all of you with spasm, I strongly recommend to give them a

try. I even don't remember who wrote about them, but I am all the

same very thankfull to him/her.

Helga (from Israel)

> Hey all; I don't write tons but I do read most of the posts and

keep up.

> I have a question, but I'll give you a little of my background

first:

> I'm 23 and have had A for two years. I had a

myotomy/fundoplication 15

> months ago and while my eating was greatly improved by the

surgery, my

> chest pains were not. The pains are excruciating and happen

mostly at

> night but sometimes during the day; are sometimes helped by

drinking

> water or eating, and sometimes not. A barium swallow showed no

signs of

> reflux, and my docs have tried nitroglycerin, which doesn't work

at all.

> This led them to rule out spasms, although the pain feels very

similar to

> the Beatles chord spasms that have been described here before. I

had the

> pain both before and after the surgery, and it's less frequent now

than

> before, but it feels exactly the same when it comes on. We have

also

> tried amytriptalene and doxepin, which sometimes dulled the pain,

but

> didn't kill it and had yucky side effects. I take vicodin when it

gets

> really bad, but it doesn't always work and I can't take it during

the day

> because it messes me up too much. My docs say they think I have

> neuropathic pain, which is basically just my nerves randomly

firing as

> the achalasia kills them. They think it might go away eventually

(like,

> years from now) but nobody knows for sure. They think botox might

help,

> but it might not, and since i'm so young, I could conceivably end

up

> having botox every six months for the next sixty to eighty years,

which I

> don't like the idea of.

>

> So, my question is this: has anyone else been diagnosed with

neuropathic

> or " nerve " pain as a result of their A? what was the treatment?

has

> anyone been dignosed with spasms but had nitroglycerin not work

for them

> (i'm wondering if these are spasms and i just need a different

drug)?

> has anyone been on neurontin, and did it work for them?

>

> thanks so much

> -katy

>

> ________________________________________________________________

> GET INTERNET ACCESS FROM JUNO!

> Juno offers FREE or PREMIUM Internet access for less!

> Join Juno today! For your FREE software, visit:

> http://dl.www.juno.com/get/web/.

[Guest guest]

Lynnette - from the way you described your pain, it sounds as if you have the version of achalasia known as "vigorous achalasia". This is what I have, and a number of other correspondents on the group and so do a number of other group correspondents.

What is happening is that your esophageal muscle is contracting, or going into a spasm, much like a muscle cramp in your leg. You're right - when it happens in your chest, it feels like a heart attack and in fact many people first seek medical care for a condition they are sure must be related to their heart before finding out that what they're suffering from is achalasia.

I don't know what medications you have available to you in Australia, but here in the States I have been prescribed a drug called Levsin (brand name - generic name is hyoscamine). This is a medication that is more typically used as a soft muscle relaxant (which is what the esophagus is, really) for those with lower intestinal tract problems.

It works very quickly to relieve these horrible pains. I find that if I swallow one pill with just a sip of water, the spasm usually releases within seconds, certainly less than a minute.

Please see if your physician is aware of this drug and if you are able to get it in Australia. I wouldn't be able to live without it. By the way, I did have the laparoscopic myotomy to correct my achalasia in 1999 but still get the vigorous ach. attacks - although they happen far less frequently and are less severe when they do.

Please let me know if I can answer any other questions for you!

Take care-

Carol

RE: unexplained/neuropathic pain

Hi Bev,

I don’t think my spasms are from gas as they are so gripping in my chest region as to mimic a heart attack (I presume) If I have a spasm, I don’t have any gas at all, so for my case, my spasms are not from gas. My other pains, which are reflux type pains don’t have gas either, but I have cut out foods which cause acid, like onions for instance. I just don’t eat them anymore and I don’t have the reflux.

Just my own thoughts, but would be pleased to hear if other people can trace it to gas or not.

Lynette in Australia

-----Original Message-----From: tedbevboo@... [mailto:tedbevboo@...]Sent: Friday, 13 September 2002 09:07achalasia Subject: Re: unexplained/neuropathic pain

To be honest with everyone, my theory on this thing called a spasm is gas backing up. I found that the spasms were more fierce when I had eaten gassy foods. Because I am lactose intolerant, I always had a problem with foods that had a little milk in them. It can be very painful. Bev.