Re: How I deal with spasms

[Guest guest]

Jacquie wrote:

> Second (if smoothie didn't work): Robaxacet (muscle relaxer) taken with small

chunk of banana. ...

> I've also found some relief with Midol, which soothes, you guessed it, muscle

cramps.

>

Here is some information about NCCP pain from achalasia that probably

won't help much, but here it is anyway.

Achalasia was thought to be a disorder of the circular muscles of the

esophagus. The spasms from something like vigorous achalasia or DES that

are seen on X-rays or manometry are in the circular muscles of the

esophagus. In the past when achalasia patients complained of chest pain

often nothing was seen either on X-ray or manometry while they were in

pain. However, achalasia is being researched with another technology,

ultrasound, and it is showing spasms of the longitudinal esophageal

muscles that X-ray and manometry does not show, while, or just before,

the patient is in pain. Combining ultrasound with high resolution

manometry is changing the understanding of motility disorders like

achalasia. Perhaps in the future this understanding will lead to choices

of medications that target those longitudinal muscles.

Those interested can see my collection of related ultrasound entries at:

Items in Collection ‘Sonographic - Ultrasound’

http://www.zotero.org/groups/achalasia_atheneum/items/collection/2178974

Particularly related to this topic are:

Sustained esophageal contraction: a marker of esophageal chest pain

identified by intraluminal ultrasonography

and

Motor and sensory function of the esophagus: revelations through

ultrasound imaging

notan

[Guest guest]

>

> Here is some information about NCCP pain from achalasia that probably

> won't help much, but here it is anyway.

>

> Achalasia was thought to be a disorder of the circular muscles of the

> esophagus. The spasms from something like vigorous achalasia or DES that

> are seen on X-rays or manometry are in the circular muscles of the

> esophagus. In the past when achalasia patients complained of chest pain

> often nothing was seen either on X-ray or manometry while they were in

> pain. However, achalasia is being researched with another technology,

> ultrasound, and it is showing spasms of the longitudinal esophageal

> muscles that X-ray and manometry does not show, while, or just before,

> the patient is in pain. Combining ultrasound with high resolution

> manometry is changing the understanding of motility disorders like

> achalasia. Perhaps in the future this understanding will lead to choices

> of medications that target those longitudinal muscles.

>

> Those interested can see my collection of related ultrasound entries at:

> Items in Collection `Sonographic - Ultrasound'

> http://www.zotero.org/groups/achalasia_atheneum/items/collection/2178974

>

> Particularly related to this topic are:

>

> Sustained esophageal contraction: a marker of esophageal chest pain

> identified by intraluminal ultrasonography

>

> and

>

> Motor and sensory function of the esophagus: revelations through

> ultrasound imaging

>

> notan

>

Thanks Notan! Interesting that they can see the spasms, although I'm not sure I

grasped all the finer details of what they're discovering. Do you think the

findings are meaningful in terms of developing a treatment that actually works

for most achalasians? My obstetrician suggested taking medication very high in

estrogen (e.g. birth control with unusually high levels of it), since that

clearly helped me early on in pregnancy.

I guess the trick is to get the muscles to relax, no matter how it's done.

I have to admit, I wouldn't mind getting a 3-d ultrasound of my spasms and then

slapping some doctors in the face with it. Cathartic, but not helpful.

[Guest guest]

Jacquie,

How have your achalasia symptoms been while pregnant? I have not had the

surgery & hope to get pregnant next year. Everyone's different & has different

severity of symptoms. I wonder if my symptoms (especially spasms & NCCP) will

worsen as I'm pregnant & everything in my body shifts around! What has your

experience been? I am no longer taking any meds for achalasia b/c nothing was

really helpful. I'm just dealing with my symptoms as they come.

Thanks!

Joanie

>

> My hiatus from spasms due to pregnancy is now over (boo!), but I thought I'd

share my current cure for spasms, especially those bad ones that seem to last

for hours or an entire day.

>

> First: Cold yogurt smoothies. They come pre-made from Astro (in Canada) and

are a godsend. I make sure to never run out. One long chug can frequently stop a

small or medium spasm in its tracks. (Note: I'm post-myotomy, so I can chug with

the best of them now...Don't chug if you have trouble swallowing still).

>

> Second (if smoothie didn't work): Robaxacet (muscle relaxer) taken with small

chunk of banana. Takes about 20-30 minutes to kick in and stops all but the

worst spasms for me. If that doesn't work, I take another about an hour later.

I've never had to take more than 3. (Side effect for me: I can't drive for hours

afterwards...way too sleepy).

>

> I've also found some relief with Midol, which soothes, you guessed it, muscle

cramps. This does NOT have any side effects for me.

>

> Things I've tried and rejected: Nitroglycerin, calcium channel blockers,

anti-spasm medication (long time ago, can't remember name), various low doses of

anti-depressants (beware trying to go OFF of those...thought I was going

insane), all sorts of food (hot or cold).

>

> Just wanted to share.

>

> Pregnancy is going well for those who are interested. Two more months to go

and I'm already " big like house " .

>

> Jacquie in Toronto, soon to be Ottawa

>

[Guest guest]

Hi Joanie,

My spasms and NCCP went away almost COMPLETELY for 5 whole months. Even morning

sickness didn't affect it. It was absolutely BLISSFUL. Around 5.5 months, I

started getting spasms back and have some sort of odd " dumping " problem, where

my entire gastrointestinal system will clear itself out of EVERYTHING for a few

hours. Very problematic, but has only happened about 6 times in the last 3

months, so manageable.

So far, nothing is actually worse (except for that dumping problem, which was

NOT happening pre-pregnancy). I highly recommend the myotomy; it changed my

whole life, even though it involved a brutal amount of spasms for at least a

month afterwards. And, oh my god, the acid reflux (now under control with

prevacid).

Contact me directly if you have more questions: jaxheys@....

Jacquie

> >

> > My hiatus from spasms due to pregnancy is now over (boo!), but I thought I'd

share my current cure for spasms, especially those bad ones that seem to last

for hours or an entire day.

> >

> > First: Cold yogurt smoothies. They come pre-made from Astro (in Canada) and

are a godsend. I make sure to never run out. One long chug can frequently stop a

small or medium spasm in its tracks. (Note: I'm post-myotomy, so I can chug with

the best of them now...Don't chug if you have trouble swallowing still).

> >

> > Second (if smoothie didn't work): Robaxacet (muscle relaxer) taken with

small chunk of banana. Takes about 20-30 minutes to kick in and stops all but

the worst spasms for me. If that doesn't work, I take another about an hour

later. I've never had to take more than 3. (Side effect for me: I can't drive

for hours afterwards...way too sleepy).

> >

> > I've also found some relief with Midol, which soothes, you guessed it,

muscle cramps. This does NOT have any side effects for me.

> >

> > Things I've tried and rejected: Nitroglycerin, calcium channel blockers,

anti-spasm medication (long time ago, can't remember name), various low doses of

anti-depressants (beware trying to go OFF of those...thought I was going

insane), all sorts of food (hot or cold).

> >

> > Just wanted to share.

> >

> > Pregnancy is going well for those who are interested. Two more months to go

and I'm already " big like house " .

> >

> > Jacquie in Toronto, soon to be Ottawa

> >

>

[Guest guest]

Jacquie wrote:

> ...Do you think the findings are meaningful in terms of developing a

> treatment that actually works for most achalasians? ...

Now that they can see that the longitudinal muscles are causing pain

they can target those muscles for study and treatment of NCCP. Both

esophageal circular and longitudinal muscles are smooth muscle so what

effects one tends to effect the other but they can have different nerves

that control them and different receptors and transmitters that effect

that control. Some drugs do effect each type differently. I think it

means there may be targets of study to find ways to treat the

longitudinal muscles specifically for the NCCP, but the work still needs

to be done.

> My obstetrician suggested taking medication very high in estrogen

> (e.g. birth control with unusually high levels of it), since that

> clearly helped me early on in pregnancy.

Hormones do effect smooth muscles. Exactly which or what combination

would help I don't know.

notan

[Guest guest]

Thanks for clearing that up Notan. I have to admit, I'd love to fund some doctor

into actually working on a solution.

Jacquie

> > ...Do you think the findings are meaningful in terms of developing a

> > treatment that actually works for most achalasians? ...

>

> Now that they can see that the longitudinal muscles are causing pain

> they can target those muscles for study and treatment of NCCP. Both

> esophageal circular and longitudinal muscles are smooth muscle so what

> effects one tends to effect the other but they can have different nerves

> that control them and different receptors and transmitters that effect

> that control. Some drugs do effect each type differently. I think it

> means there may be targets of study to find ways to treat the

> longitudinal muscles specifically for the NCCP, but the work still needs

> to be done.

>

> > My obstetrician suggested taking medication very high in estrogen

> > (e.g. birth control with unusually high levels of it), since that

> > clearly helped me early on in pregnancy.

>

> Hormones do effect smooth muscles. Exactly which or what combination

> would help I don't know.

>

> notan

>

[Guest guest]

My obstetrician suggested taking medication very high in estrogen (e.g. birth

control with unusually high levels of it), since that clearly helped me early on

in pregnancy.

======

Yikes, I hope you'll get second and third opinions before actually doing this.

High levels of estrogen can significantly increase your chances of developing

breast cancer. (I personally would honestly be concerned about having my baby

delivered by an OB who made this kind of statement about a disease they have no

training in or experience with. But that's just me.)

Also, there are A LOT of other things going on during pregnancy besides just

estrogen levels. A friend of mine with severe allergies and asthma is

asymptomatic during pregnancy... but taking high levels of estrogen supplements

isn't going to keep her asymptomatic after she delivers.

Please do your homework before agreeing to anything as serious as hormone

supplementation. We don't want anything to happen to you!

Debbi in Michigan

[Guest guest]

Hi Debbie,

I also have the Achalasia along with Breast Cancer which I just had a

mastectomy. I developed Breast Cancer due to my estrogen. Now all my doctors

(Breast Surgeon, Oncologist and OBGYN) suggest I should take the drug Tamoxifen.

This drug is to be taken for 5 years and has so many side effects (stroke,

Pre-menospause, blood clots in lungs, less than 1% Uterus cancer, depression,

sex drive decrease, weight loss, hearing loss, vaginal infections and dryness,

etc.) With Achalasia I think this drug will cause many problems for me. I

currently have nodules in my lungs and afraid I will get bloob clots if I take

this medication. I also have a blood vessels in my kidneys. I am so afraid to

take this drug but all the doctors want me to start on it. I was thinking about

going to the health store to see if I can get something in place of Tamoxifen.

Thanks for listening!

> My obstetrician suggested taking medication very high in estrogen (e.g. birth

control with unusually high levels of it), since that clearly helped me early on

in pregnancy.

>

> ======

>

> Yikes, I hope you'll get second and third opinions before actually doing this.

High levels of estrogen can significantly increase your chances of developing

breast cancer. (I personally would honestly be concerned about having my baby

delivered by an OB who made this kind of statement about a disease they have no

training in or experience with. But that's just me.)

>

> Also, there are A LOT of other things going on during pregnancy besides just

estrogen levels. A friend of mine with severe allergies and asthma is

asymptomatic during pregnancy... but taking high levels of estrogen supplements

isn't going to keep her asymptomatic after she delivers.

>

> Please do your homework before agreeing to anything as serious as hormone

supplementation. We don't want anything to happen to you!

>

> Debbi in Michigan

>