Re: spoke to a few Drs about my son

[Guest guest]

Tonia, check out "the infamous spasm post" here:

achalasia/message/28576

There should be enough info there for you to discuss it with his doctor. I hope you find something to help him soon!Debbi in Michigan

Ihave heard back from a few Drs and they are also saying my son should not be having these problems.(as we all knew)When I go Monday I will be sure to let this Dr know that other DRs are even saying its unusual and is not normal.What kinda come back can he possibly say after that?? I have already warned my husband that the police will have to carry me out of there if they dont find the problem! He has had 3 horrible spasms this week and has vomited 3 x yesterday.Question- How many of you take meds to help with the E spams?If so what do you take? The first time the drinking water actually helped but nothing eased up on the other 2 but time.I want to find out about a med or something that he will be able to have with him when hes away from home and should have a spell.Whats he to do when he goes back to school?Sports? I did read about the caratafe liquid .Iknow its no cure out there but something should be available to help ease the pain. I have read that some take nitroglycerin,muscle relaxers,antidepressents etc..Any one here-Thanks Tonia

[Guest guest]

Vomit (ie with stomach acid) or regurgitation (just

food that never made it to the stomach)?

Re the pain, I've said this before, but for me, I stop

it by eating the small shredded wheats. For me, it

works everytime within a few minutes. My theory why

it works is that it gives the muscles some real work

to do rather than fighting eat other (which is what it

feels like to me)..

I've been lucky so far, I have not needed any meds to

stop the pain.

Dave

--- toniasdogsandi <toniasdogsandi@...> wrote:

> He has had 3

> horrible spasms this week and has vomited 3 x

> yesterday.

>

> Question- How many of you take meds to help with the

> E spams?If so

> what do you take?

> .Iknow its no cure

> out there but something should be available to help

> ease the pain. I

> have read that some take nitroglycerin,muscle

> relaxers,antidepressents

> etc..Any one here-Thanks Tonia

>

>

>

>

>

__________________________________________________

[Guest guest]

Dear Tonia,

I'm sure you'll be getting a flood of replies to your question

about what we take to relieve the spasms. As you know, some will not

help your son, but we have to hope that something will give him the

relief he needs.

As I'm sure you know, many people, including myself have posted

what they do, and there is that famous post #28576 by Debbi in

Michigan, which is a compilation of many posts having to do with

esophageal spasms.

As I was about to send this, my email delivered to me Debbi's

post, and she beat me to it (but she deserves all the credit!)

I'll simply repeat what worked for me earlier on and what I use

now, and you can take it with other suggestions you've received to

decide what to try.

I went on Prilosec over 10 years ago. One capsule a day, and

the spasms stopped 100% for the entire period I was on it (about 18

months). When I read that it might not be a good thing is some cases

to take Prilosec (though this is disputed), I stopped. The spasms

gradually returned, but I was prepared with other ways to deal.

I started taking nifedipine, under the tongue, and that worked

almost 100% of the time, especially if taken immediately upon onset

of symptoms.

I also drink warm or cold carbonated drinks.

Eating crackers sometimes will help

Drinking Cola syrup reduced much of the pain.

Also, based upon his age certain suggestions may not be appropriate

for him.

Regarding what the doctor might say, in his defense...they always

have something to say, and my guess is he might say that your son is

his patient and not the patient of all the other people who

have " butted in, " who don't know the patient like he does.

Good luck, we all care, and keep us posted.

>

> Ihave heard back from a few Drs and they are also saying my son

should not be having these problems.(as we all knew)When I go Monday

I will be sure to let this Dr know that other DRs are even saying its

unusual and is not normal.What kinda come back can he possibly say

after that?? I have already warned my husband that the police will

have to carry me out of there if they dont find the problem! He has

had 3 horrible spasms this week and has vomited 3 x yesterday.

Question- How many of you take meds to help with the E spams?If so

what do you take? The first time the drinking water actually helped

but nothing eased up on the other 2 but time.I want to find out about

a med or something that he will be able to have with him when hes

away from home and should have a spell.Whats he to do when he goes

back to school?Sports? I did read about the caratafe liquid .Iknow

its no cure out there but something should be available to help ease

the pain. I have read that some take nitroglycerin,muscle

relaxers,antidepressents etc..Any one here-Thanks Tonia

>

[Guest guest]

Hi Tonia - when all is said and done, if you don't like your current

doctor, find another one. We are not THAT far from Cleveland, you

could always go to Richmond to the Medical College of Va. hospital or

you could come my way to Childrens hospital. YOU have the choice to

make.

Also - with meds, I've used NuLev which is so/so - not too many side

effects but not the best results either.

Be careful with him with Nitro or Nifedipine because they can cause

very serious side effects. Obviously with his age and size, your

doctor will advise you what to do but when I was prescribed

nifedipine many years ago they failed to tell me that it dramatically

lowers your blood pressure - to the point that I went into shock

twice!! (my first and only ambulance ride the first time) so just be

careful.

Good luck with his appointment on Monday and keep us posted.

Happy Swallowing!

- in Va.

> >

> > Ihave heard back from a few Drs and they are also saying my son

> should not be having these problems.(as we all knew)When I go

Monday

> I will be sure to let this Dr know that other DRs are even saying

its

> unusual and is not normal.What kinda come back can he possibly say

> after that?? I have already warned my husband that the police will

> have to carry me out of there if they dont find the problem! He has

> had 3 horrible spasms this week and has vomited 3 x yesterday.

>

> Question- How many of you take meds to help with the E spams?If so

> what do you take? The first time the drinking water actually helped

> but nothing eased up on the other 2 but time.I want to find out

about

> a med or something that he will be able to have with him when hes

> away from home and should have a spell.Whats he to do when he goes

> back to school?Sports? I did read about the caratafe liquid .Iknow

> its no cure out there but something should be available to help

ease

> the pain. I have read that some take nitroglycerin,muscle

> relaxers,antidepressents etc..Any one here-Thanks Tonia

> >

>

[Guest guest]

Dear Tonia,Bluntly, I wouldn't even go back to those doctors. Go to the best ones that responded back to you. Skip that appointment. I bet any other doctors would work you in right away next week. I compare it to a credit rating. So far their "score" isn't very high (in my opinion) why would you waste time getting more low score advice from them? They have demonstrated their level of expertise.Your son sounds like he is in a serious condition, speed is important. It isn't normal to be regurging or vomiting (by the way that is a HUGE difference in describing what is coming up).If you would like to tell me to butt out, I'll respect that, but seems like so many of us are telling any which way we can to find experienced doctors and be very proactive. Monday morning you should have picked a doctor and being waiting in his/her waiting room after balancing your insurance, finances, and location. Have all your test results with you and don't leave that place until he can eat. Any doctor you contacted can work you in I bet if you ask. If I may compare it to childbirth... not being able to eat along with all the other symptoms is like being in labor with an epidural that is only working on one side. It is frightening, depressing and each day your son is struggling is like a month to a healthy person. He is probably scared to death.The spasms are very painful, but the bigger risk to him is not being able to eat, that indicates something is seriously wrong after the surgery. My guess is that the wrap is too tight, but could be a lot of other things.I know I sound very harsh, my heart goes out to your son and I know you are doing absolutely the best you can. But from my experience, sort through your doctor choices and be VERY aggressive with resolving the problem. It seems like many of us have suggested similar approaches and the doctors have emailed you with their opinions, I think (and I could be sooooo wrong) that you should make some decisions based on your knowledge so far. It almost seems like you are soooo praying/hoping the surgery was a success and it appears differently. I'm guessing the surgery decision was difficult and (hate this word) but there is some denial that it wasn't entirely successful.So.... from my heart, based on watching my parents go through local well-meaning general doctors to true experts in the field, please find a excellent surgeon and get a fresh start. I hope you take this as well intended and don't take offense, but the regurg, spasms and not eating are just the outward symptoms, the emotional damage that achalasia does do even us oldies is difficult to explain. So for a young man it must seem just insurmountable. In a way, this is a lesson to him to do research and be proactive to important things in his own life.Sandy in So Cal> >> > Ihave heard back from a few Drs and they are also saying my son > should not be having these problems.(as we all knew)When I go Monday > I will be sure to let this Dr know that other DRs are even saying its > unusual and is not normal.What kinda come back can he possibly say > after that?? I have already warned my husband that the police will > have to carry me out of there if they dont find the problem! He has > had 3 horrible spasms this week and has vomited 3 x yesterday.> > Question- How many of you take meds to help with the E spams?If so > what do you take? The first time the drinking water actually helped > but nothing eased up on the other 2 but time.I want to find out about > a med or something that he will be able to have with him when hes > away from home and should have a spell.Whats he to do when he goes > back to school?Sports? I did read about the caratafe liquid .Iknow > its no cure out there but something should be available to help ease > the pain. I have read that some take nitroglycerin,muscle > relaxers,antidepressents etc..Any one here-Thanks Tonia> >>

[Guest guest]

Tonia,

I haven't posted in a long while. I'm sure that you've received a

lot of replies, but your son's story sounded similar to mine so I

thought I'd try and help…

Just some background...

I had an open thoracic Heller done in 1984 that didn't work very

well. After that, numerous dilations, and problems swallowing, and

spasms. It wasn't the best situation, but it was bearable enough

that I didn't go back and have the surgery done again. I just drank

tons of water all the time.

until….. fast forward to 2004…. The spasms became worse and worse

and the swallowing got REALLY bad again. I still refused to go back

to my GI doctor. I began having spasms almost every day, sometimes

lasting off and on again for the whole day. When I went back to my

GI doctor he had another Heller scheduled within 1 week from my

first visit. They had to do an open one again because of scar

tissue. This time they went in through the front and did the wrap

with in. The way he explained it was that the esophagus is a

muscle, and muscles tend to heal themselves. He said that 20 years

was really good mileage out of the first surgery.

Here's the part that's similar…

A few days after surgery, the spasms came back. They were as bad as

before the surgery. Even the morphine didn't help them. About two

weeks after the surgery my doctor gave me some samples of NuLev. I

took it and it actually helped when a spasm came on. The problem

was that there were times that I would have to take it every 2 hours

all day! My Doctor then prescribed Procardia, 10 mg 3 times per

day. I'm sure you've heard this before, but it's a calcium channel

blocker that helps reduce the possibility of spasms. Between the

NuLev and Procardia, the spasms got less and less, but it took about

6 months after the surgery for it to get better. I also have to

mention that having problems after the surgery made me very

depressed. I expected to come out of the surgery feeling great, but

it just didn't happen. It makes you feel like nothing is ever going

to help, and your never going to be well again. I could be wrong,

but I believe that the post-surgery depression helped to make the

spasms even worse.

It's now two years after the surgery and I've quit taking the

Procardia (just because I hate taking medicine all the time). I

still have the spasms a few times a month, but I've learned that I

can tell right before one's going to come. It's almost like hunger

pains a few minutes before they hit. When I get that feeling I

immediately take the NuLev and it usually wards off the pains. I

also tried Levsin, and the generic version of NuLev, but neither

medication worked like NuLev does. They're supposed to be the same,

but there's something different and they don't work for me. I'm

43, my doctor never came right out and said this but I've come to

the conclusion I'm going to be having the spasms the rest of my

life. At least the NuLev helps to manage them so they're bearable.

One last thing that I found besides water… As weird as it sounds,

sometimes a heating pad on your back will help. When I used to feel

really bad I would sit in a recliner chair with the heating pad on

high up near my shoulder blades. For some reason it made the spasms

a little better.

I hope this has helped. Good luck to you and your son.

Sharlene

> Question- How many of you take meds to help with the E spams?If so

> what do you take? The first time the drinking water actually

helped

> but nothing eased up on the other 2 but time.

[Guest guest]

Sharlene,

Thank you for sharing your story with us, and perhaps from what

you have related, this might be helpful not just for Tonia's son, but

for others reading who have experienced these very painful and often

relentless spasms.

I just want to clarify one thing you said which might cause some

confusion. You mentioned Procardia, and my apologies to those who

know what I am going to say next. For those of you new to spasms,

and not yet familiar with the drugs to treat it, Procardia is a brand

name for Nifedipine (the generic equivalent). It also goes by the

name Adalat, and maybe others too.

Sharlene, your doctor prescribed your taking Procardia 10mg

three times a day, and it helped you after 6 months along with taking

Nulev.

I would suggest, as an alternative, taking Procardia on a when

needed basis. Since you developed an " early warning system " for the

onset of the pains, with Procardia working so quickly when dissolved

(or squirted out) under the tongue, it can relieve the pains before

it really starts to ramp up. This would relieve your having to " take

medicine all the time " which is why you said you discontinued taking

it.

As we have all come to recognize, what may work for one, may

not for the other, but I thought I would just put my two pence in and

clarify Procardia vs. Nifedipine, and different ways to use the drug.

>

>

> > Question- How many of you take meds to help with the E spams?If

so

> > what do you take? The first time the drinking water actually

> helped

> > but nothing eased up on the other 2 but time.

>

[Guest guest]

AMEN from NJ

-- Re: spoke to a few Drs about my son

Dear Tonia,

Bluntly, I wouldn't even go back to those doctors. Go to the best ones that responded back to you. Skip that appointment. I bet any other doctors would work you in right away next week. I compare it to a credit rating. So far their "score" isn't very high (in my opinion) why would you waste time getting more low score advice from them? They have demonstrated their level of expertise.

Your son sounds like he is in a serious condition, speed is important. It isn't normal to be regurging or vomiting (by the way that is a HUGE difference in describing what is coming up).

If you would like to tell me to butt out, I'll respect that, but seems like so many of us are telling any which way we can to find experienced doctors and be very proactive. Monday morning you should have picked a doctor and being waiting in his/her waiting room after balancing your insurance, finances, and location. Have all your test results with you and don't leave that place until he can eat. Any doctor you contacted can work you in I bet if you ask. If I may compare it to childbirth... not being able to eat along with all the other symptoms is like being in labor with an epidural that is only working on one side. It is frightening, depressing and each day your son is struggling is like a month to a healthy person. He is probably scared to death.

The spasms are very painful, but the bigger risk to him is not being able to eat, that indicates something is seriously wrong after the surgery. My guess is that the wrap is too tight, but could be a lot of other things.

I know I sound very harsh, my heart goes out to your son and I know you are doing absolutely the best you can. But from my experience, sort through your doctor choices and be VERY aggressive with resolving the problem. It seems like many of us have suggested similar approaches and the doctors have emailed you with their opinions, I think (and I could be sooooo wrong) that you should make some decisions based on your knowledge so far. It almost seems like you are soooo praying/hoping the surgery was a success and it appears differently. I'm guessing the surgery decision was difficult and (hate this word) but there is some denial that it wasn't entirely successful.

So.... from my heart, based on watching my parents go through local well-meaning general doctors to true experts in the field, please find a excellent surgeon and get a fresh start. I hope you take this as well intended and don't take offense, but the regurg, spasms and not eating are just the outward symptoms, the emotional damage that achalasia does do even us oldies is difficult to explain. So for a young man it must seem just insurmountable. In a way, this is a lesson to him to do research and be proactive to important things in his own life.

Sandy in So Cal

> >> > Ihave heard back from a few Drs and they are also saying my son > should not be having these problems.(as we all knew)When I go Monday > I will be sure to let this Dr know that other DRs are even saying its > unusual and is not normal.What kinda come back can he possibly say > after that?? I have already warned my husband that the police will > have to carry me out of there if they dont find the problem! He has > had 3 horrible spasms this week and has vomited 3 x yesterday.> > Question- How many of you take meds to help with the E spams?If so > what do you take? The first time the drinking water actually helped > but nothing eased up on the other 2 but time.I want to find out about > a med or something that he will be able to have with him when hes > away from home and should have a spell.Whats he to do when he goes > back to school?Sports? I did read about the caratafe liquid .Iknow > its no cure out there but something should be available to help ease > the pain. I have read that some take nitroglycerin,muscle > relaxers,antidepressents etc..Any one here-Thanks Tonia> >>

[Guest guest]

,

Thanks so much for the suggestion. I actually have a follow-up with

my GI in a couple of weeks. I don't really want to go, but I haven't

seen him in 2 years. He won't renew the meds unless I come in. I'll

ask him about it when I go. I'm also supposed to be taking Prevsid

daily, but I quit taking that too. I've strickly been using the NuLev

for the spasms. I have a feeling my Doc's not going to be too happy

with me ignoring his meds... :-)

Sharlene

>

>>

> I would suggest, as an alternative, taking Procardia on a when

> needed basis. Since you developed an " early warning system " for the

> onset of the pains, with Procardia working so quickly when dissolved

> (or squirted out) under the tongue, it can relieve the pains before

> it really starts to ramp up.