Re: hi

[Guest guest]

One suggestion is feeding slower and in an upright position. Yes, reglan may

help and my son did get the fundoplication. Also we found that my son had

plenty of food allergies and this caused the wretching.

WE worked hard on finding what he was not allergic to in the way of food. He

is g tube fed pureed foods that agree with him and he is thriving. He did

grow out of the wretching and so I can hardly remember it but I do know it

was awful to go through.

Good luck. Ckrencicki

[Guest guest]

>Hi there

The gagging and wretching could be reflux. It could also be

something else????? Sullivan my son does it, and has been doing it

from day one, but it doesn't smell like formula so they don't know

for sure.

Having a gastrostomy tube and a funduplication (to stop reflux) has

certainly helped.

I suggest that you keep pushing your pediatrician and/or specialist.

There are always emergency appointments to get swallow studies etc

done more quickly. Really emphasize the pain that your child is

experiencing when you have to reinsert the tube (daily!) and how

trying it is on you as a parent to do this to your child.

I think sometimes the medical profession forgets the day to day

realities parents of special needs children have to face. Prime

example having to drive 30 minutes each way to have the nj tube re

inserted.....they had xray time for that!

Good luck

Tracey

Hello,

>

> You all have been in contact with my sister , and now that

I

> know where she has been going for all the good info about Charge, I

> thought that I would introduce myself.

>

> My name is Bader, and I am the mother of Nichole. The

> doctors STILL haven't dx'ed her and I am about ready to string up

the

> geneticist.

>

> But the problem I am having right now is that Nichole has figured

out

> how to take her NG tube out of her nose. It was suppose to be NJ,

> but when it got pulled out the second time I just said forget it. I

> really didn't want to drive the 30 miles to Primary Children's

> Hospital and have Nichole tied to a board for half an hour again

> while they put it back down. And her peditrition agreed with me.

> The problem we are having is Nichole is gaging on something.

> Everyonce in a while she just heaves. Usually she doesn't bring

> anything up, but sometimes she does, and it's mostly just bile. She

> was even doing this when her tube was NJ.

>

> At first I thought it was just because she was going through a

little

> withdrawl from her narcotic that they had her on, but now... Well,

> the timing isn't right. I don't know what it is, she just does it.

> Sometimes she will heave out of a sound sleep, and that REALLY ticks

> her off.

>

> Any ideas?

>

> Also, does anyone have a child with the permanent NG tube coming out

> of the tummy? Can you tell me anything about the surgery, and where

> the port usually comes out? Nichole will be getting one in the next

> few months and I would like to know what I'm getting into.

>

> Thankx, Jen

[Guest guest]

Ckrencicki

What is fundoplication? I haven't heard of that yet. What does that do?

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Jen,

Hi there, and welcome to CHARGEland! As for the NG tube coming out, I don't have much advice for you there as we had an OG (down the mouth) tube for the first 5 months and we took it in and out at each feeding (5x a day). While it was in, we sometimes put little mittens on Kennedy's hands to stop her from getting at it. Her gagging or heaves is probably reflux, has Nichole had a barium test yet to see if she is indeed refluxing? Sometimes the reflux can be controlled with meds, other times a surgical intervention is necessary. It's pretty common with these guys, a lot of us have ridden the gagging/reflux train around here. My daughter barfed/heaved/gagged for about the first 7 months of life. She had a g-tube put in at 6 months as well as a Nissen fundoplication (wrap the top part of her stomach over her esophagus and close it shut so she can't vomit or let anything up into her lungs or anywhere else).

The g tube will be over from Nichole's belly button to her left side and to start it'll be a long yellow colored tube to which you will attach a "y-site" connector. It's a little clear tube that looks like a "y" with 2 ports coming from it. It's a little long and bulky and you will find it a little tricky getting used to at first. But at least she will be getting her nutrition with a lot less battle and that makes things a lot easier on the nerves! After a certain amount of time (I think different places make you wait different amounts of time) you can get her a "button". You have to wait until the stoma is well healed and established in her belly with the g-tube before getting a button. This is a little flat plastic "button" that lays right on the tummy and it is the port in itself. You just attach a little feeding tube to it when it's feeding time, then take it out after the feed. It's really nice and neat. If you want to see a picture of it, I have a picture of Kennedy in the tub (which is not a great picture of her but a pretty good one of a button) it's on my website at: http://www.geocities.com/kawfolks/kkbutton.html . This will also show you the same place (roughly) that the g- tube will come out at.

Good luck getting things resolved, the gagging is awful!!

Mom to Kennedy 2yr old CHARGEr, 10, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Hi

Hello,You all have been in contact with my sister , and now that Iknow where she has been going for all the good info about Charge, Ithought that I would introduce myself.My name is Bader, and I am the mother of Nichole. Thedoctors STILL haven't dx'ed her and I am about ready to string up thegeneticist.But the problem I am having right now is that Nichole has figured outhow to take her NG tube out of her nose. It was suppose to be NJ,but when it got pulled out the second time I just said forget it. Ireally didn't want to drive the 30 miles to Primary Children'sHospital and have Nichole tied to a board for half an hour againwhile they put it back down. And her peditrition agreed with me.The problem we are having is Nichole is gaging on something.Everyonce in a while she just heaves. Usually she doesn't bringanything up, but sometimes she does, and it's mostly just bile. Shewas even doing this when her tube was NJ.At first I thought it was just because she was going through a littlewithdrawl from her narcotic that they had her on, but now... Well,the timing isn't right. I don't know what it is, she just does it.Sometimes she will heave out of a sound sleep, and that REALLY ticksher off.Any ideas?Also, does anyone have a child with the permanent NG tube coming outof the tummy? Can you tell me anything about the surgery, and wherethe port usually comes out? Nichole will be getting one in the nextfew months and I would like to know what I'm getting into.Thankx, Jen

For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

In a message dated 12/20/01 11:56:20 AM Eastern Standard Time,

thebyks@... writes:

> thebyks@...

Hi, I am still waiting to find out exactltly what time it will be with

, but I will let you know as soon as we figure it out. We are driving

there on sunday and staying Mon and tues and coming back on Weds. Kind of an

icky schedule, but we just dont have the money to stay longer or for Mike to

be off work much more than that.

I'll let you know as soon as plans are definite Looking forward to seeing

you!!

[Guest guest]

Penny, Okay.. I was joking a little with my messages...I have invited

and Sara to come to my Grandmas on the 24th.. plans are not final yet. I am

hoping we can all get together. I dont know yet.

[Guest guest]

> OH MAN,........ HERE I am ready to meet JD and .. And to meet

Sara,

> Matt, Gabe and little Mikey.........and nobody loves

me.....booohoooo

>

>

>

huh?

[Guest guest]

Hi ,

You said:

<<so is there no way to talk to catherine other than to have a phone consultation that costs money? >>

Welcome to the group. Please take a moment to introduce yourself so we can get to know you and what withdrawal and recovery issues you are dealing with.

Right now, temporarily, does not have internet access, so no, you can't email her directly. We always encourage people to address their questions to the group anyhow, because if everyone wrote to us privately neither nor I would ever have time to answer everyone. (Private emails are acceptable at certain times, to clarify particular things or to talk about issues too private to post to the group.) And no, she doesn't speak to anyone on the phone unless she is paid for her time. This is only fair given the tremedous amount of time and energy she devotes to providing this group with the information and support they need to successfully withdraw and recover.

So please address your questions to the group, and give the group a chance to answer. I speak to frequently, and realy the more difficult questions to her. If you want a private consultation by phone, yes, you do have to pay for that. It's only fair--she puts hours upon hours of work into the protocols she develops from the private consultations--there's a limit to how much of yourself you can give away for free and still survive.

Some people have very complex situations that cannot be addressed effectively on the group. The email information becomes fragmented, spread out as it is over days at a time. For these people, we recommend a private consult so they can get their whole case looked all at once instead of piecemeal, which increases the effectiveness.

I will paste in 's consultation guidelines below. They offer a full explanation of why she offers them and how it's done.

But remember, you're welcome to post to the list with your questions and concerns. We'll do all we can safely do for you right here on the list.

------------------------------------------------------------------------------------------------

About Consultations with

by CreelI've found over the years that there are complications to some cases thatrequire collecting much more information than the norm and working moreclosely with people. I tried doing this online but it doesn't work well. It

requires too many emails that all contain important information spread outover time. Trying to see the whole picture over a period of a couple ofweeks while attempting to put a dozen or so emails into some semblance of an

entire story with which I can work is a nightmare. I found this was bestaccomplished by phone or in person.Some examples of cases with complications are situations where a person istaking more than one psychotropic drug, where there are other drugs or other

health problems, where someone has had an adverse reaction to a drug shortlyafter taking it, where someone has gone cold turkey more than six weeks ago,where someone has been on a psychotropic drug for more than five years and

is under the age of 25 or over the age of 35, where people are under the ageof 21, where people are over the age of 60, where people have attemptedseveral times to discontinue a drug (having done this at least once similar

to the style we do it here), where people drink or use street drugs whiletaking a psychotropic drug, where someone has consecutively been on severaldrugs, where I perceive someone as having difficulty communicating in an

email list environment, where people, preferring more privacy or beinguncomfortable in groups, do not wish to post to the list, and finally, wherethe occasional case cannot be well-served by the group and defies all

categories of complicated cases. This is rare but I have to allow for it.These are all examples of situations requiring a private consult.Effective June 5, my fee forprivate consults will be as follows:

30 min. -- $3060 min. -- $60Beyond an hour fees will be charged to the nearest 10 min.There will be no charge for the time I spend after we are off the phoneworking up your case, choosing an appropriate protocol for you, and getting

that to you via email no matter how long I work on it (the minimum amount oftime needed to accomplish this is 45 min. and in most cases, requires muchmore time than that).Fees for half an hour or an hour will be paid prior to the consult at PayPal

(www.PayPal.com) using a credit card, debit card, personal check or transferfrom your PayPal account. I will also accept postal money orders in U.S.funds sent by snail mail.As a rule of thumb, most consults can be done in an hour if you email yourmedical history at least 24 hours before your consult and organize yourthoughts on paper prior to our conversation. Consults that require about

an hour and a half are those where more than two drugs are being taken(pharmaceutical or street), there is an illness or condition thatcomplicates the case, there has been an adverse reaction to a drug, or one

is particularly sensitive to nutrients or other substances taken to supporthealing.I've found that the majority of these more complicated cases require onlyone follow-up via phone and then the rest can be done on the group once the

foundation has been laid. As always, there is no charge for anything doneonline in the group. Private email will be kept to a minimum and will belimited to simple questions requiring only a couple of minutes to answer. If

a person does not want to utilize the list for more complex follow-up,another consult can be booked.In the meantime, the most common cases will continue to be served by me onthe group list for which there is no charge.

You will never incur more of a charge than you intended on paying. I willkeep track of the time and will tell you when we are reaching the end of theconsult. At that time, if you choose to lengthen the consult, I will trust

that you will pay the balance due through PayPal or mail a postal moneyorder within 24 hours.To book a consult you may email me at [ temporary change: email Kim at kdenise1111@ gmail .com (take out the spaces) ] If you haven't heard from me in

24 hours please re-send your email just in case it fell into that bigdark hole in cyberspace. Thanks!

[Guest guest]

Welcome ,

You will find great support and information from this group list. I sure don't look forward to when I have to come off my Klonipin 2mg daily. Right now I'm working on two other psych. drugs Lexapro and Geodon first. Klonipin will be my last.

hugs-Kim wrote:

Hi ,

You said:

<<so is there no way to talk to catherine other than to have a phone consultation that costs money? >>

Welcome to the group. Please take a moment to introduce yourself so we can get to know you and what withdrawal and recovery issues you are dealing with.

Right now, temporarily, does not have internet access, so no, you can't email her directly. We always encourage people to address their questions to the group anyhow, because if everyone wrote to us privately neither nor I would ever have time to answer everyone. (Private emails are acceptable at certain times, to clarify particular things or to talk about issues too private to post to the group.) And no, she doesn't speak to anyone on the phone unless she is paid for her time. This is only fair given the tremedous amount of time and energy she devotes to providing this group with the information and support they need to successfully withdraw and recover.

So please address your questions to the group, and give the group a chance to answer. I speak to frequently, and realy the more difficult questions to her. If you want a private consultation by phone, yes, you do have to pay for that. It's only fair--she puts hours upon hours of work into the protocols she develops from the private consultations--there's a limit to how much of yourself you can give away for free and still survive.

Some people have very complex situations that cannot be addressed effectively on the group. The email information becomes fragmented, spread out as it is over days at a time. For these people, we recommend a private consult so they can get their whole case looked all at once instead of piecemeal, which increases the effectiveness.

I will paste in 's consultation guidelines below. They offer a full explanation of why she offers them and how it's done.

But remember, you're welcome to post to the list with your questions and concerns. We'll do all we can safely do for you right here on the list.

------------------------------------------------------------------------------------------------

About Consultations with

by CreelI've found over the years that there are complications to some cases thatrequire collecting much more information than the norm and working moreclosely with people. I tried doing this online but it doesn't work well. It requires too many emails that all contain important information spread outover time. Trying to see the whole picture over a period of a couple ofweeks while attempting to put a dozen or so emails into some semblance of an entire story with which I can work is a nightmare. I found this was bestaccomplished by phone or in person.Some examples of cases with complications are situations where a person istaking more than one psychotropic drug, where there are other drugs or other health problems, where someone has had an adverse reaction to a drug shortlyafter taking it, where someone has gone cold turkey more than six weeks ago,where someone has been on a psychotropic drug for

more than five years and is under the age of 25 or over the age of 35, where people are under the ageof 21, where people are over the age of 60, where people have attemptedseveral times to discontinue a drug (having done this at least once similar to the style we do it here), where people drink or use street drugs whiletaking a psychotropic drug, where someone has consecutively been on severaldrugs, where I perceive someone as having difficulty communicating in an email list environment, where people, preferring more privacy or beinguncomfortable in groups, do not wish to post to the list, and finally, wherethe occasional case cannot be well-served by the group and defies all categories of complicated cases. This is rare but I have to allow for it.These are all examples of situations requiring a private consult.Effective June 5, my fee forprivate consults will be as follows: 30 min. --

$3060 min. -- $60Beyond an hour fees will be charged to the nearest 10 min.There will be no charge for the time I spend after we are off the phoneworking up your case, choosing an appropriate protocol for you, and getting that to you via email no matter how long I work on it (the minimum amount oftime needed to accomplish this is 45 min. and in most cases, requires muchmore time than that).Fees for half an hour or an hour will be paid prior to the consult at PayPal (www.PayPal.com) using a credit card, debit card, personal check or transferfrom your PayPal account. I will also accept postal money orders in U.S.funds sent by snail mail.As a rule of thumb, most consults can be done in an hour if you email yourmedical history at least 24 hours before your consult and organize yourthoughts on

paper prior to our conversation. Consults that require about an hour and a half are those where more than two drugs are being taken(pharmaceutical or street), there is an illness or condition thatcomplicates the case, there has been an adverse reaction to a drug, or one is particularly sensitive to nutrients or other substances taken to supporthealing.I've found that the majority of these more complicated cases require onlyone follow-up via phone and then the rest can be done on the group once the foundation has been laid. As always, there is no charge for anything doneonline in the group. Private email will be kept to a minimum and will belimited to simple questions requiring only a couple of minutes to answer. If a person does not want to utilize the list for more complex follow-up,another consult can be booked.In the meantime, the most common cases will continue to be served by me onthe

group list for which there is no charge. You will never incur more of a charge than you intended on paying. I willkeep track of the time and will tell you when we are reaching the end of theconsult. At that time, if you choose to lengthen the consult, I will trust that you will pay the balance due through PayPal or mail a postal moneyorder within 24 hours.To book a consult you may email me at [ temporary change: email Kim at kdenise1111@ gmail .com (take out the spaces) ] If you haven't heard from me in 24 hours please re-send your email just in case it fell into that bigdark hole in cyberspace. Thanks!

[Guest guest]

Hi ,

I spoke with this evening. She had some ideas to share.

You were absolutely right to think that nutrition is the key to healing. Read the Basic Healing Protocol in the FILES (it was sent to you when you joined). If I were you, I would take Supralife liquid vitamins and colloidal minerals, Vitamin C (order at www.vitamincfoundation.org) Carlson's fish oil (work up to 5,000mg per day).

I would also address my diet. There is useful information in Eating for Recovery in the FILES. Your recovery depends on appropriate nutritional support.

This should get you started.

Regards,

Kim

co-moderator

[Guest guest]

Is anyone else having extreme mental and physical symptoms from trying to come off xanax?>>

** Everyone coming off Xanax has a difficult time, . Please explain how you're doing this. How much are you dropping and what period of time are you allowing between decreases?

There are ways to do this that reduces the difficulty. We;ll help you if you can give details.

-- Regards,

[Guest guest]

I would say extreme mental and physical symptoms when

coming off of xanax or common, but slowly tapering

would probably lesson these effects.

--- mary jaye wrote:

> Is anyone else having extreme mental and physical

> symptoms from trying to come off xanax?

>

>

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

> Yahoo! FareChase - Search multiple travel sites in

> one click.

__________________________________

Yahoo! FareChase: Search multiple travel sites in one click.

http://farechase.yahoo.com

[Guest guest]

Well i came from 3mg about a month ago. Now I am on 2. I have recently tried the taking 4 halves for 2 weeks and then 3 halves for 2 weeks, and my body couldnt handle it. I felt nuts. i couldnt go outside. No motivation once so ever! I cant have a life. So ive come to the conclusion that maybe i do need it.And there just shouldnt be such a stigma attached to it. I am also taking Seroquil. in about a months time i came off of 500mg down to about 1 a day now. Are there any side effects to coming off of that drug? Creel wrote: Is anyone else having extreme mental and physical symptoms from trying to come off xanax?>> ** Everyone coming off Xanax has a difficult time, . Please explain how you're doing this. How much are you dropping and what period of time are you allowing between decreases? There are ways to do this that reduces the difficulty. We;ll help you if you can give details. -- Regards,

Yahoo! FareChase - Search multiple travel sites in one click.

[Guest guest]

Hey Amy, i know that slowly tapering it off is best, but my body really is resisting. Even tapering the way the docter said to. Maybe im just not mentally prepared to stop taking it.Amy Eoff wrote: I would say extreme mental and physical symptoms whencoming off of xanax or common, but slowly taperingwould probably lesson these effects.--- mary jaye wrote:> Is anyone else having extreme mental and physical> symptoms from trying to come off xanax?> > > ---------------------------------> Yahoo! FareChase - Search multiple travel sites in> one click.

__________________________________ Yahoo! FareChase: Search multiple travel sites in one click.http://farechase.yahoo.com

Yahoo! FareChase - Search multiple travel sites in one click.

[Guest guest]

Jaye,

You are still tapering too fast! Your doctor's plan is too fast.

Doctors only know what pharmaceutical companies tell them.

We recommend no more than a 10% reduction at a time. Think about

that. You have reduced your dose by one third in a period of a month.

That's too fast.

You DON'T need the drug, but your body is addicted to it, so unless

you withdraw much more slowly than you're doing it, you will feel

terrible. You may also be feeling the effects of having come off the

Seroquel.

The effects of coming off the drug are not " side effects " . They are

the evidence of the way the drugs have damaged your body and made it

dependent on them. These can be minimized by withdrawaing slowly and

by supporting your body's healing process with diet and appropriate

supplements.

I still can't give you specific help, because I don't know the

specifics of your situation. We need specific information to be of

help.

What drugs are you taking now (all of them, even ones for physical

problems, if any), at what doses?

How much have you tapered these drugs, over how long a period of time?

Why did you go on the drugs in the first place?

Answer these questions and we can begin to help you manage this process.

Regards,

Kim

co-moderator

> Well i came from 3mg about a month ago. Now I am on 2. I have recently

> tried the taking 4 halves for 2 weeks and then 3 halves for 2 weeks, and my

> body couldnt handle it. I felt nuts. i couldnt go outside. No motivation

> once so ever! I cant have a life. So ive come to the conclusion that maybe

> i do need it.And there just shouldnt be such a stigma attached to it. I am

> also taking Seroquil. in about a months time i came off of 500mg down to

> about 1 a day now. Are there any side effects to coming off of that drug?

>

[Guest guest]

I said:

<<We recommend no more than a 10% reduction at a time. Think about

that. You have reduced your dose by one third in a period of a month.

That's too fast.>>

Oftentimes, with drugs like Xanax, we make 5% reductions or even

smaller in order for the person to be able to bear the withdrawal.

It's all individual.

Kim

[Guest guest]

>

> Well i came from 3mg about a month ago. Now I am on 2. I have

recently tried the taking 4 halves for 2 weeks and then 3 halves for

2 weeks, and my body couldnt handle it. I felt nuts. i couldnt go

outside. No motivation once so ever! I cant have a life. So ive

come to the conclusion that maybe i do need it.And there just

shouldnt be such a stigma attached to it. I am also taking

Seroquil. in about a months time i came off of 500mg down to about 1

a day now. Are there any side effects to coming off of that drug?>

** Yes, Seroquel is a very difficult drug to discontinue.

The problems you are having are because you are reducing too

quickly. The doctor told you it was slow, but it's not. They don't

know what is slow.

You were on 3 mg. of Xanax. A month later you were on 2 mg. Does

this mean that at some point you dropped one whole milligram or did

you do it in phases? Did you drop a half milligram every two weeks?

It helps me to know exactly how you did it, but either way, you

went too fast. If you dropped even half of a mg. at a time, this

would be a reduction of 16.66%. If you dropped by an entire mg.,

this would be a 33.3% reduction.

You did the same with Seroquel. I'm going to assume you mean you

are now on 100 mg. but were at 500 mg a month ago. This is an EIGHTY

PERCENT reduction in a month!

Let me be frank here. You feel like shit because you are going

off TWO drugs at once (not advisable unless you're taking 6 or more

drugs) and you're going off them much too quickly.

We recommend 5%-10% reductions of ONE DRUG AT A TIME. This is what

we have found that works. Also, you don't set time frames for

reductions. You go by how you feel. Your body is your best guide.

When you do an initial reduction of 5 or 10%, you wait until you

feel fine again. Then, you do the next reduction, which would be 5-

10% of the last dose you took. You also have to decide which dose to

take it from . You didn't say how you take it -- how many times a day

and at what times of day.

I saw another post of yours that stated maybe you really need

this. This is exactly what the drug companies want you to believe

which is why they tell the doctors reduction schedules that are too

fast.

Doing what you are doing is causing damage to your system. This

needs to change.

Now, about Seroquel. Why would you take an antipsychotic? How

long have you taken this drug? ly, if I were you, I'd stop

taking this one first, then I'd deal with the Xanax.

Many people find it much easier to switch to Valium and work at

getting off that rather than trying to reduce the Xanax. Being a

drug with a short half-life, Xanax is difficult to discontinue.

Id this making sense to you? Here's what I need from you if you

want help:

1) I need to know exactly how and when you take the Xanax and

Seroquel. This means dose and time.

2) I need to know how long you've been taking Seroquel and Xanax.

3) I need to know all the reasons you are discontinuing each.

Here's what you need to know in order to get out of this mess.

1) You need to begin your normal dose (3 mg) of Xanax again.

2) You need to increase the Seroquel, hopefully not to 500 mg. again

but it may have to be. Try 300mg. first, and see how that goes.

Then try 400 mg. if 300 mg is not helping. If these don't work, go

back up to 5mg.

3) If you take the suggestion above, then you need to let us know

whether there is a good reason to discontinue the Xanax before

discontinuing Seroquel.

I've spent the time spelling this out for you so you can see we're

about action here. Let us know what you want to do.

Regards,

[Guest guest]

oh my god people that actually care. I am crying right now. Um...yes my body feels like it's dying.1. i take 1 mg xanax when i wake up. rhis could be any time before 12. Im tring to take 100 mg of seroquil later in the day so i can relax more.2. i have been taking xanax since i was 15, i am now 23. And i started on 500mg of seoquil at the beggining of this year because that was yet another attempt of mine to get of xanax, it led to a mental brakedown to where i couldnt consentrate or sleep, & my thoughts were racing. My doc tells me there is no side effect from coming off seroquil, but i know that's crap!3. I want to stop taking these pills because im tired of having to take these pills. Im not nuts, and I think anxiety can be treated with therapy. It has been a rollercoaster ride with the xanax for as long as i can remember. I can feel my body starting to feel bad in less than a day before it's time for my dose, which means my

body wants more. THis drug is taking over my life, but i'm afraid to come off of it now. I don't want to die, because some doctor won't work with me how my body needs it done. i go back to the doc on mon. im going to print all of this and show it to her. She knows i really want to come off of it, but she needs to see what's really going on. Thankyou so much for caring. please write me backccreel_04064 wrote: >> Well i came from 3mg about a month ago. Now I am on 2. I have recently tried the taking 4 halves for 2 weeks and then 3 halves for 2 weeks, and my body couldnt handle it. I

felt nuts. i couldnt go outside. No motivation once so ever! I cant have a life. So ive come to the conclusion that maybe i do need it.And there just shouldnt be such a stigma attached to it. I am also taking Seroquil. in about a months time i came off of 500mg down to about 1 a day now. Are there any side effects to coming off of that drug?> ** Yes, Seroquel is a very difficult drug to discontinue. The problems you are having are because you are reducing too quickly. The doctor told you it was slow, but it's not. They don't know what is slow. You were on 3 mg. of Xanax. A month later you were on 2 mg. Does this mean that at some point you dropped one whole milligram or did you do it in phases? Did you drop a half milligram every two weeks? It helps me to know exactly how you did it, but either

way, you went too fast. If you dropped even half of a mg. at a time, this would be a reduction of 16.66%. If you dropped by an entire mg., this would be a 33.3% reduction. You did the same with Seroquel. I'm going to assume you mean you are now on 100 mg. but were at 500 mg a month ago. This is an EIGHTY PERCENT reduction in a month! Let me be frank here. You feel like shit because you are going off TWO drugs at once (not advisable unless you're taking 6 or more drugs) and you're going off them much too quickly. We recommend 5%-10% reductions of ONE DRUG AT A TIME. This is what we have found that works. Also, you don't set time frames for reductions. You go by how you feel. Your body is your best guide. When you do an initial reduction of 5 or 10%, you wait until you feel fine again. Then,

you do the next reduction, which would be 5-10% of the last dose you took. You also have to decide which dose to take it from . You didn't say how you take it -- how many times a day and at what times of day. I saw another post of yours that stated maybe you really need this. This is exactly what the drug companies want you to believe which is why they tell the doctors reduction schedules that are too fast. Doing what you are doing is causing damage to your system. This needs to change. Now, about Seroquel. Why would you take an antipsychotic? How long have you taken this drug? ly, if I were you, I'd stop taking this one first, then I'd deal with the Xanax. Many people find it much easier to switch to Valium and work at getting off that rather than trying to reduce the Xanax. Being a drug with a short

half-life, Xanax is difficult to discontinue. Id this making sense to you? Here's what I need from you if you want help:1) I need to know exactly how and when you take the Xanax and Seroquel. This means dose and time.2) I need to know how long you've been taking Seroquel and Xanax.3) I need to know all the reasons you are discontinuing each. Here's what you need to know in order to get out of this mess.1) You need to begin your normal dose (3 mg) of Xanax again.2) You need to increase the Seroquel, hopefully not to 500 mg. again but it may have to be. Try 300mg. first, and see how that goes. Then try 400 mg. if 300 mg is not helping. If these don't work, go back up to 5mg.3) If you take the suggestion above, then you need to let us know whether there is a good reason to discontinue the Xanax before discontinuing

Seroquel. I've spent the time spelling this out for you so you can see we're about action here. Let us know what you want to do.Regards,

Yahoo! FareChase - Search multiple travel sites in one click.

[Guest guest]

Jaye, you can do it and you will! I felt the same way when I joined two days ago. Before I joined this group, I had ordered a program called Attacking Anxiety and Depression. There is a 30 day trial offer where you pay for shipping only and if you send it back, they pay for shipping that way and you don't owe a thing. I've started my 30 day trial and it is really going to work for my anxiety!! It's expensive but I know you can get it "secondhand" on eBay too. It's by Lucinda Bassett at Midwest something or other. Of course you'll need more than that while you withdraw but once you do, this program is wonderful at bringing us anxiety ridden folks back to normal.... for a lifetime.

Best,

Lily

Re: Re: hi

oh my god people that actually care. I am crying right now. Um...yes my body feels like it's dying.1. i take 1 mg xanax when i wake up. rhis could be any time before 12. Im tring to take 100 mg of seroquil later in the day so i can relax more.2. i have been taking xanax since i was 15, i am now 23. And i started on 500mg of seoquil at the beggining of this year because that was yet another attempt of mine to get of xanax, it led to a mental brakedown to where i couldnt consentrate or sleep, & my thoughts were racing. My doc tells me there is no side effect from coming off seroquil, but i know that's crap!3. I want to stop taking these pills because im tired of having to take these pills. Im not nuts, and I think anxiety can be treated with therapy. It has been a rollercoaster ride with the xanax for as long as i can remember. I can feel my body starting to feel bad in less than a day before it's time for my dose, which means my body wants more. THis drug is taking over my life, but i'm afraid to come off of it now. I don't want to die, because some doctor won't work with me how my body needs it done.

i go back to the doc on mon. im going to print all of this and show it to her. She knows i really want to come off of it, but she needs to see what's really going on. Thankyou so much for caring. please write me backccreel_04064 wrote:

>> Well i came from 3mg about a month ago. Now I am on 2. I have recently tried the taking 4 halves for 2 weeks and then 3 halves for 2 weeks, and my body couldnt handle it. I felt nuts. i couldnt go outside. No motivation once so ever! I cant have a life. So ive come to the conclusion that maybe i do need it.And there just shouldnt be such a stigma attached to it. I am also taking Seroquil. in about a months time i came off of 500mg down to about 1 a day now. Are there any side effects to coming off of that drug?> ** Yes, Seroquel is a very difficult drug to discontinue. The problems you are having are because you are reducing too quickly. The doctor told you it was slow, but it's not. They don't know what is slow. You were on 3 mg. of Xanax. A month later you were on 2 mg. Does this mean that at some point you dropped one whole milligram or did you do it in phases? Did you drop a half milligram every two weeks? It helps me to know exactly how you did it, but either way, you went too fast. If you dropped even half of a mg. at a time, this would be a reduction of 16.66%. If you dropped by an entire mg., this would be a 33.3% reduction. You did the same with Seroquel. I'm going to assume you mean you are now on 100 mg. but were at 500 mg a month ago. This is an EIGHTY PERCENT reduction in a month! Let me be frank here. You feel like shit because you are going off TWO drugs at once (not advisable unless you're taking 6 or more drugs) and you're going off them much too quickly. We recommend 5%-10% reductions of ONE DRUG AT A TIME. This is what we have found that works. Also, you don't set time frames for reductions. You go by how you feel. Your body is your best guide. When you do an initial reduction of 5 or 10%, you wait until you feel fine again. Then, you do the next reduction, which would be 5-10% of the last dose you took. You also have to decide which dose to take it from . You didn't say how you take it -- how many times a day and at what times of day. I saw another post of yours that stated maybe you really need this. This is exactly what the drug companies want you to believe which is why they tell the doctors reduction schedules that are too fast. Doing what you are doing is causing damage to your system. This needs to change. Now, about Seroquel. Why would you take an antipsychotic? How long have you taken this drug? ly, if I were you, I'd stop taking this one first, then I'd deal with the Xanax. Many people find it much easier to switch to Valium and work at getting off that rather than trying to reduce the Xanax. Being a drug with a short half-life, Xanax is difficult to discontinue. Id this making sense to you? Here's what I need from you if you want help:1) I need to know exactly how and when you take the Xanax and Seroquel. This means dose and time.2) I need to know how long you've been taking Seroquel and Xanax.3) I need to know all the reasons you are discontinuing each. Here's what you need to know in order to get out of this mess.1) You need to begin your normal dose (3 mg) of Xanax again.2) You need to increase the Seroquel, hopefully not to 500 mg. again but it may have to be. Try 300mg. first, and see how that goes. Then try 400 mg. if 300 mg is not helping. If these don't work, go back up to 5mg.3) If you take the suggestion above, then you need to let us know whether there is a good reason to discontinue the Xanax before discontinuing Seroquel. I've spent the time spelling this out for you so you can see we're about action here. Let us know what you want to do.Regards,

Yahoo! FareChase - Search multiple travel sites in one click.

[Guest guest]

" THis drug is taking over my life, but i'm afraid to come off of it

now. I don't want to die, because some doctor won't work with me how

my body needs it done "

Sweetheart you are not going to die, it probably really feels like it

sometimes, but you won't. You don't need to be afraid anymore,

and the others know what they are talking about.

and Kim will help you get off it safely.

You're going to be fine, just follow what tells you to do.

This is the safest place in the world to get off these drugs, your

doctor is probably the most dangerous.

Trust in , the rest of us will gently hold your hand until

you are off and recovered.

You don't have to be afraid anymore

With Love and true understanding

[Guest guest]

thanks Lily, I actually took catherines advice and took 2 mgs of seroquil and i just cant believe that, that was what i was withdrawling from. I thought it was the zanax. Now i have hope. Ive printed out everything to show my doctor on monday and i just pray she will work with me. Thanks for your words of wisdom:) maryCVEmery wrote: Jaye, you can do it and you will! I felt the same way when I joined two days ago. Before I joined this group, I had ordered a program called Attacking Anxiety and Depression.

There is a 30 day trial offer where you pay for shipping only and if you send it back, they pay for shipping that way and you don't owe a thing. I've started my 30 day trial and it is really going to work for my anxiety!! It's expensive but I know you can get it "secondhand" on eBay too. It's by Lucinda Bassett at Midwest something or other. Of course you'll need more than that while you withdraw but once you do, this program is wonderful at bringing us anxiety ridden folks back to normal.... for a lifetime. Best, Lily Re: Re: hi oh my god people that actually care. I am crying right now. Um...yes my body feels like it's dying.1. i take 1 mg xanax when i wake up. rhis could be any time before 12. Im tring to take 100 mg of seroquil later in the day so i can relax more.2. i have been taking xanax since i was 15, i am now 23. And i started on 500mg of seoquil at the beggining of this year because that was yet another attempt of mine to get of xanax, it led to a mental brakedown to where i couldnt

consentrate or sleep, & my thoughts were racing. My doc tells me there is no side effect from coming off seroquil, but i know that's crap!3. I want to stop taking these pills because im tired of having to take these pills. Im not nuts, and I think anxiety can be treated with therapy. It has been a rollercoaster ride with the xanax for as long as i can remember. I can feel my body starting to feel bad in less than a day before it's time for my dose, which means my body wants more. THis drug is taking over my life, but i'm afraid to come off of it now. I don't want to die, because some doctor won't work with me how my body needs it done. i go back to the doc on mon. im going to print all of this and show it to her. She knows i really want to come off of it, but she needs to see what's really going on. Thankyou so much for caring. please write me

backccreel_04064 wrote: >> Well i came from 3mg about a month ago. Now I am on 2. I have recently tried the taking 4 halves for 2 weeks and then 3 halves for 2 weeks, and my body couldnt handle it. I felt nuts. i couldnt go outside. No motivation once so ever! I cant have a life. So ive come to the conclusion that maybe i do need it.And there just shouldnt be such a stigma attached to it. I am also taking Seroquil. in about a months time i came off of 500mg down to about 1 a day now. Are there any side effects to coming off of that drug?> ** Yes, Seroquel is a very difficult drug to

discontinue. The problems you are having are because you are reducing too quickly. The doctor told you it was slow, but it's not. They don't know what is slow. You were on 3 mg. of Xanax. A month later you were on 2 mg. Does this mean that at some point you dropped one whole milligram or did you do it in phases? Did you drop a half milligram every two weeks? It helps me to know exactly how you did it, but either way, you went too fast. If you dropped even half of a mg. at a time, this would be a reduction of 16.66%. If you dropped by an entire mg., this would be a 33.3% reduction. You did the same with Seroquel. I'm going to assume you mean you are now on 100 mg. but were at 500 mg a month ago. This is an EIGHTY PERCENT reduction in a month! Let me be frank here. You feel like shit

because you are going off TWO drugs at once (not advisable unless you're taking 6 or more drugs) and you're going off them much too quickly. We recommend 5%-10% reductions of ONE DRUG AT A TIME. This is what we have found that works. Also, you don't set time frames for reductions. You go by how you feel. Your body is your best guide. When you do an initial reduction of 5 or 10%, you wait until you feel fine again. Then, you do the next reduction, which would be 5-10% of the last dose you took. You also have to decide which dose to take it from . You didn't say how you take it -- how many times a day and at what times of day. I saw another post of yours that stated maybe you really need this. This is exactly what the drug companies want you to believe which is why they tell the doctors reduction schedules that are too

fast. Doing what you are doing is causing damage to your system. This needs to change. Now, about Seroquel. Why would you take an antipsychotic? How long have you taken this drug? ly, if I were you, I'd stop taking this one first, then I'd deal with the Xanax. Many people find it much easier to switch to Valium and work at getting off that rather than trying to reduce the Xanax. Being a drug with a short half-life, Xanax is difficult to discontinue. Id this making sense to you? Here's what I need from you if you want help:1) I need to know exactly how and when you take the Xanax and Seroquel. This means dose and time.2) I need to know how long you've been taking Seroquel and Xanax.3) I need to know all the reasons you are discontinuing each. Here's what you

need to know in order to get out of this mess.1) You need to begin your normal dose (3 mg) of Xanax again.2) You need to increase the Seroquel, hopefully not to 500 mg. again but it may have to be. Try 300mg. first, and see how that goes. Then try 400 mg. if 300 mg is not helping. If these don't work, go back up to 5mg.3) If you take the suggestion above, then you need to let us know whether there is a good reason to discontinue the Xanax before discontinuing Seroquel. I've spent the time spelling this out for you so you can see we're about action here. Let us know what you want to do.Regards, Yahoo! FareChase - Search multiple travel sites in one click.

Yahoo! FareChase - Search multiple travel sites in one click.

[Guest guest]

Dear ,

You said:

<< I actually took catherines advice and took 2 mgs of seroquil and i

just cant believe that, that was what i was withdrawling from. I

thought it was the zanax. Now i have hope. Ive printed out everything

to show my doctor on monday and i just pray she will work with me.

Thanks for your words of wisdom:)>>

** Let me tell you how this is going to play our on Mon. with your

doctor. She will take a brief glance at what you hand her and then put

it aside and tell you there is a lot of misinformation out there on the

web and you can't be taken in by it. Then she'll tell you that you

shouldn't have been having problems and the fact that you did is an

indication that you really do need the drugs. I've seen it thousands

of times before -- literally.

Hundreds of people here can tell you that trying to show your doctor

some info you found will get you nowhere. However, what WILL work is

to get into the mindset that this is YOUR body, YOUR brain, and YOUR

life we're talking about. Because of this, YOU need to be responsible

for your own well-being. You can do this by telling the doctor how you

have decided to do your withdrawal. Tell her you want to go very

slowly. Tell her you feel more stable since you've slowed down. If she

argues with you, tell her you did it her way and perhaps you're unusual

(you're not) but you feel like you need to go slowly and since you have

live in your body it should be your decision. Do not be afraid to be

an EQUAL partner in your treatment. Don't be intimidated by her.

After all, she is not the one who will take care of you, take your pain

for you, and live your life for you. You are merely taking care of

yuorself as you should when you advocate for what you want.

There is another option. This is actually the easier route. You can

tell her you've decided to stay on the drugs, get prescriptions from

her, and then go home and follow the plan for a slow taper. Many

people choose this option.

I invite others to speak up here and share your experiences with

.

Regards,

[Guest guest]

, I actually had a doctor saw the difficulty I had getting off the Paxil, after 6 wks of tapering my symptoms where beyond what I can emotionally handle. He sent me to the ER to get help getting off the meds. I was refused and told to go home that there was no such thing as Paxil withdrawal. Better off anyhow because they probably would have just exchanged one drug for another. I was interviewed for the New York Times about Paxil withdrawal, had only a few lines printed, however we tried to the supportive doctor to speak out in the article, he refused of course.

The doctor who sent me to the ER put me back on Paxil, and had no idea what to do after that. I tried to taper for years after that unsuccesfully, until I was switched to Prozac. I was told that I can taper off of Prozac with ease, well guess what? I am still on Prozac a few years after starting that. It appears even Prozac I have difficulty with what I thought was a small taper. I am going to get a syringe this weekend and start tomorrow to taper in the recommended amounts on this list on my own since I have unable to find any help from any docs and even holistic doctors could not help me. I was refused help when I asked about 3 alternative med docs for help. This is a huge problem in this system. There are some many who need help and there is NO help out for there for us in the recognized medical system. Thanks to the politicks of the pharmaceutical companies. Kim

[Guest guest]

" Let me tell you how this is going to play our on Mon. with your

doctor. She will take a brief glance at what you hand her and then put

it aside and tell you there is a lot of misinformation out there on the

web and you can't be taken in by it. Then she'll tell you that you

shouldn't have been having problems and the fact that you did is an

indication that you really do need the drugs. I've seen it thousands

of times before -- literally. "

Yep, exactly what happened with me, with so many different doctors,

they all spouted the same crap. They don't believe, the withdrawal ,

is because you need the drugs, but they fail to back up this when you

tell then " I didn't have depression before I went on these

drugs " ........you only have listen to them for like minutes and they

end up winding themselves in a knot.

I wish I had all of s knowledge because then when the doctors

give you medical jargon , you can explain it like Cath does. But I

think even then they would wiggle there way out of it. It's weird

because I always believed doctors cared about people.

The only person I trust with my health is .

Its exactly the same in the UK as in the US..........it's all just

about money.

Wishing you luck with your doctor, I am sure someone must have one

that is prepared to hear the truth.

With Love

[Guest guest]

What is seroquel? An anti depressant or benzo or somthing else?ccreel_04064 wrote: Dear , You said: << I actually took catherines advice and took 2 mgs of seroquil and i just cant believe that, that was what i was withdrawling from. I thought it was the zanax. Now i have hope. Ive printed out everything to show my doctor on monday and i just pray she will work with me. Thanks for your words of wisdom:)>> ** Let me tell you how this is going to play our on Mon. with your doctor. She will take a brief glance at what you hand her and then put it aside and tell you there is a lot of misinformation out there on the web and you can't be taken in by it. Then she'll tell

you that you shouldn't have been having problems and the fact that you did is an indication that you really do need the drugs. I've seen it thousands of times before -- literally. Hundreds of people here can tell you that trying to show your doctor some info you found will get you nowhere. However, what WILL work is to get into the mindset that this is YOUR body, YOUR brain, and YOUR life we're talking about. Because of this, YOU need to be responsible for your own well-being. You can do this by telling the doctor how you have decided to do your withdrawal. Tell her you want to go very slowly. Tell her you feel more stable since you've slowed down. If she argues with you, tell her you did it her way and perhaps you're unusual (you're not) but you feel like you need to go slowly and since you have live in your body it should be your decision. Do not be afraid to be an

EQUAL partner in your treatment. Don't be intimidated by her. After all, she is not the one who will take care of you, take your pain for you, and live your life for you. You are merely taking care of yuorself as you should when you advocate for what you want. There is another option. This is actually the easier route. You can tell her you've decided to stay on the drugs, get prescriptions from her, and then go home and follow the plan for a slow taper. Many people choose this option. I invite others to speak up here and share your experiences with . Regards,

Yahoo! FareChase - Search multiple travel sites in one click.