I am sorry, my son is not on Diovan he is on Depakote.  I don't know
where my head is!

Terry

My two children have CVS.  The best thing for the kids have been on
daily Prevacid.  Since being on daily Prevacid, their episodes have
become spaced out more.  For episodes, my son (11) takes Zofran and
Benadril.  My daughter (8) takes Zofran.  My son drinks
Gatorade/Propel/Rain for the electrolites, especially for sports or
physical activities.

We tried to take my daughter off the Prevacid and the episodes
started up again.  Even reducing her amount brought on episodes more
quickly and with more vomitting.

My son on the other hand has had his episodes worsen.  We believe the
medication amitriptyline that he was on for headaches/migraines, made
the episodes worse and worsened his acid reflux.  We have recently
changed his medication to Diovan in hopes this will stop the daily
headaches, control the migraines and decrease his acid reflux.  We
have noticed a significant decrease in his acid reflux and have
decreased his Prevacid as well.

Since being on Prevacid and a migraine medication, we have noticed
that the CVS does not trigger a migraine anymore.  Many times, a
migraine does not trigger a CVS episode either.  We have also noticed
the acid reflux does not trigger CVS anymore.  I feel adding the
Gatorade while my son is doing sports or physical activity has helped
immensely.  We also allow him to drink ginger ale and/or Gatorade
when he has an upset stomach.

Yesterday, my daughter had an episode.  Her episodes are mild.  We
gave her ginger ale and Zofran when she was nauseated.  She never did
throw up!  This is a first and we are so thankful for this small
victory!!

We keep an eye on my son's "triggers".  I am probably over protective
but I am able to keep the episodes at bay by being observant and on
top of the "triggers".  We have figured out loud noise can also
trigger a migraine which can trigger a CVS episode.  We saw an
audiologist and were able to get him ear plugs for when there is loud
noise.  We no longer take him into situations where we know there
will be loud noise (concert, Chuck E. Cheese, children's church club
night, loud people, etc.).  We figured out he has extremely sensitive
hearing and has been diagnosed with Sensory Integration Disorder
(SID).  We are now working with an OT on SID to desensitize several
things in order for him to cope better.  If you want to know what all
his triggers are, I can let you know.

We have not been able to identify anything as triggers for my
daughter.  I do notice she does have an upset stomach and sometimes a
CVS episode when we have positive stress (vacation, friends coming
over, grandparents coming, dance recital, etc.).

I hope this helps you!

Terry

thnx for the help. really?....yours is very different from mine. every
time i have it i never get near with water. i even barely drink
fluids. as of the moment, my nausea happens very often but for the
past years i've experienced also an interval of about 6 months before
it attacked me again. so what kind of medicines do u take? i've tried
zofran, thorazine,nexium,placil,and maalox.:)

Hi Belle,

I'm Tina - almost 45 and my CVS started at 39.

I wish I could give you some ideas, but for me I have no nausea at all - I
wake up suddenly and I start heaving, and that's that.

One thing that gives me comfort is water. I lie in the bathtub for hours
when I am episoding. Even when in the hospital I want to be in a tub /
shower.

Other than that - nothing appears to help for me. I just kinda ride it thru
and hope for the best.

I hope your cycles are at least infrequent!

Huggz
Tina


-------Original Message-------

From: annabelle hoy
Date: 2/26/2008 1:31:30 PM
To: cyclicvomitingsyndrome@yahoogroups.com
Subject: [Cyclic Vomiting Syndrome] how to deal?

hi! I'm belle. I'm 23 years old and i started having CVS when i turned 20. I
d like to know how you guys deal with it? because me, what i do is whenever
it's about to start or whenver i get the feeling of nausea, i eat fruits
after every meal to lessen the feeling. So I'd like to know if anyone with
CVS has a different approach on how to handle it. thanx!

__________________________________________________________
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com/newsearch/category.php?category=shopping

[Non-text portions of this message have been removed]




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[Non-text portions of this message have been removed]

hi! I'm belle. I'm 23 years old and i started having CVS when i turned 20. I'd
like to know how you guys deal with it? because me, what i do is whenever it's
about to start or whenver i get the feeling of nausea, i eat fruits after every
meal to lessen the feeling. So I'd like to know if anyone with CVS has a
different approach on how to handle it. thanx!


      
________________________________________________________________________________\
____
Looking for last minute shopping deals?
Find them fast with Yahoo! Search. 
http://tools.search.yahoo.com/newsearch/category.php?category=shopping

[Non-text portions of this message have been removed]

Amitriptyline did nothing for Sarah's cvs...we tried everything ....nothing has
worked....need to try the supplements....

ohgr8nowwhat <OneSmartCooke@...> wrote:          Christine -

> Mady's in the hospital for the weekend--still can't stop puking.

I am so sorry.

> My husband and switched spots for tonight--

GOOD! You need a rest.

> I think they're going to give her Atavin (sp?) tonight to knock her
out.

My son has taken oral ativan and it did not work for us. I hope the
IV will work.

> One thing the doc mentioned today was something about sympathetic
and parasympathetic nervous systems having something to do with
CVS ??? Anyone have a clue about this?

Absolutely not clue. SORRY!

I am glad to be of some help. It is amazing when you actually can
talk about things and people understand!

Terry






---------------------------------
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[Non-text portions of this message have been removed]

Again the amitrptyline dose is supposedly very small for cvs--- i do know my
neuro did not want to try depakote (or topamax) due to the side effects...so
could be side effects from the depakote too? Mimi

-------------- Original message --------------
From: "ohgr8nowwhat" <OneSmartCooke@...>
Mary -

> I hope they didn't take him off the amitriptyline cold turkey, they
> are supposed to gradually reduce the dose.

They took him off of it cold turkey. I asked the Neuro. and he said it
was fine to stop it immediately and go to the Depakote. I did this on
Thurs. and my son says he isn't feeling well. Come to think of it, he
was hurting (body/feet) and emotional today. HHMM... More info. and
thoughts on this would be appreciated!

Terry




[Non-text portions of this message have been removed]

just wanted to share my understanding is that the  dose of amitriptyline for cvs
is way lower than it would be prescribed for depression. Mimi

-------------- Original message --------------
From: "mcdolemom728" <mcdolemom@...>

I found this info online. I would definitely call the doctor,
something doesn't sound right.



Other drug names: A B C D E F G H I J K L M N O P Q
R S T U V W X Y Z 0-9

Amitriptyline
(a mee trip' ti leen)

Contents of this page:
Why is this medication prescribed?
How should this medicine be used?
Other uses for this medicine
What special precautions should I follow?
What special dietary instructions should I follow?
What should I do if I forget a dose?
What side effects can this medication cause?
What storage conditions are needed for this medicine?
In case of emergency/overdose
What other information should I know?
Brand names of combination products


IMPORTANT WARNING: Return to top
A small number of children, teenagers, and young adults (up to 24 years
of age) who took antidepressants ('mood elevators') such as
amitriptyline during clinical studies became suicidal (thinking about
harming or killing oneself or planning or trying to do so). Children,
teenagers, and young adults who take antidepressants to treat
depression or other mental illnesses may be more likely to become
suicidal than children, teenagers, and young adults who do not take
antidepressants to treat these conditions. However, experts are not
sure about how great this risk is and how much it should be considered
in deciding whether a child or teenager should take an antidepressant.
Children younger than 18 years of age should not normally take
amitriptyline, but in some cases, a doctor may decide that
amitriptyline is the best medication to treat a child's condition.

You should know that your mental health may change in unexpected ways
when you take amitriptyline or other antidepressants even if you are an
adult over age 24. You may become suicidal, especially at the beginning
of your treatment and any time that your dose is increased or
decreased. You, your family, or your caregiver should call your doctor
right away if you experience any of the following symptoms: new or
worsening depression; thinking about harming or killing yourself, or
planning or trying to do so; extreme worry; agitation; panic attacks;
difficulty falling asleep or staying asleep; aggressive behavior;
irritability; acting without thinking; severe restlessness; and
frenzied abnormal excitement. Be sure that your family or caregiver
knows which symptoms may be serious so they can call the doctor when
you are unable to seek treatment on your own.

Your healthcare provider will want to see you often while you are
taking amitriptyline, especially at the beginning of your treatment. Be
sure to keep all appointments for office visits with your doctor.

The doctor or pharmacist will give you the manufacturer's patient
information sheet (Medication Guide) when you begin treatment with
amitriptyline. Read the information carefully and ask your doctor or
pharmacist if you have any questions. You also can obtain the
Medication Guide from the FDA website:
http://www.fda.gov/cder/drug/antidepressants/antidepressants_MG_2007.pdf
.

No matter your age, before you take an antidepressant, you, your
parent, or your caregiver should talk to your doctor about the risks
and benefits of treating your condition with an antidepressant or with
other treatments. You should also talk about the risks and benefits of
not treating your condition. You should know that having depression or
another mental illness greatly increases the risk that you will become
suicidal. This risk is higher if you or anyone in your family has or
has ever had bipolar disorder (mood that changes from depressed to
abnormally excited) or mania (frenzied, abnormally excited mood) or has
thought about or attempted suicide. Talk to your doctor about your
condition, symptoms, and personal and family medical history. You and
your doctor will decide what type of treatment is right for you.


Why is this medication prescribed? Return to top
Amitriptyline is used to treat symptoms of depression. Amitriptyline is
in a class of medications called tricyclic antidepressants. It works by
increasing the amounts of certain natural substances in the brain that
are needed to maintain mental balance.

How should this medicine be used? Return to top
Amitriptyline comes as a tablet to take by mouth. It is usually taken
one to four times a day. Take amitriptyline at around the same time(s)
every day. Follow the directions on your prescription label carefully,
and ask your doctor or pharmacist to explain any part you do not
understand. Take amitriptyline exactly as directed. Do not take more or
less of it or take it more often than prescribed by your doctor.

Your doctor will probably start you on a low dose of amitriptyline and
gradually increase your dose.

It may take a few weeks or longer before you feel the full benefit of
amitriptyline. Continue to take amitriptyline even if you feel well. Do
not stop taking amitriptyline without talking to your doctor. If you
suddenly stop taking amitriptyline, you may experience withdrawal
symptoms such as nausea, headache, and lack of energy. Your doctor will
probably decrease your dose gradually.

Other uses for this medicine Return to top
Amitriptyline is also sometimes used to treat eating disorders and post-
herpetic neuralgia (the burning, stabbing pains, or aches that may last
for months or years after a shingles infection). Talk to your doctor
about the possible risks of using this medication for your condition.

This medication may be prescribed for other uses; ask your doctor or
pharmacist for more information.

What special precautions should I follow? Return to top
Before taking amitriptyline,

tell your doctor and pharmacist if you are allergic to amitriptyline or
any other medications.
tell your doctor if you are taking cisapride (Propulsid) (not available
in the U.S.) or monoamine oxidase (MAO) inhibitors such as
isocarboxazid (Marplan), phenelzine (Nardil), selegiline (Eldepryl,
Emsam, Zelapar), and tranylcypromine (Parnate), or if you have taken an
MAO inhibitor during the past 14 days. Your doctor will probably tell
you that you should not take amitriptyline.
tell your doctor and pharmacist what other prescription and
nonprescription medications, vitamins, nutritional supplements, and
herbal products you are taking. Be sure to mention any of the
following: antihistamines; cimetidine (Tagamet); diet pills; disulfiram
(Antabuse); guanethidine (Ismelin); ipratropium (Atrovent); quinidine
(Quinidex); medications for irregular heartbeats such as flecainide
(Tambocor) and propafenone (Rythmol); medications for anxiety, asthma,
colds, irritable bowel disease, mental illness, nausea, Parkinson's
disease, seizures, ulcers, or urinary problems; other antidepressants;
phenobarbital (Bellatal, Solfoton); sedatives; selective serotonin
reuptake inhibitors (SSRIs) such as citalopram (Celexa), fluoxetine
(Prozac, Sarafem), fluvoxamine (Luvox), paroxetine (Paxil), and
sertraline (Zoloft); sleeping pills; thyroid medications; and
tranquilizers. Tell your doctor or pharmacist if you have stopped
taking fluoxetine (Prozac, Sarafem) in the past 5 weeks.Your doctor may
need to change the doses of your medications or monitor you carefully
for side effects.
tell your doctor if you have recently had a heart attack. Your doctor
will probably tell you not to take amitriptyline.
tell your doctor if you drink large amounts of alcohol and if you have
or have ever had glaucoma (an eye condition); an enlarged prostate (a
male reproductive gland); difficulty urinating; seizures; an overactive
thyroid gland (hyperthyroidism); diabetes; schizophrenia (a mental
illness that causes disturbed or unusual thinking, loss of interest in
life, and strong or inappropriate emotions); or liver, kidney, or heart
disease.
tell your doctor if you are pregnant or plan to become pregnant. If you
become pregnant while taking amitriptyline, call your doctor. Do not
breast-feed while you are taking amitriptyline.
if you are having surgery, including dental surgery, tell the doctor or
dentist that you are taking amitriptyline.
you should know that amitriptyline may make you drowsy. Do not drive a
car or operate machinery until you know how this medication affects
you.
remember that alcohol can add to the drowsiness caused by this
medication.
What special dietary instructions should I follow? Return to top
Unless your doctor tells you otherwise, continue your normal diet.

What should I do if I forget a dose? Return to top
Take the missed dose as soon as you remember it. However, if it is
almost time for the next dose, skip the missed dose and continue your
regular dosing schedule. Do not take a double dose to make up for a
missed one.

What side effects can this medication cause? Return to top
Amitriptyline may cause side effects. Tell your doctor if any of these
symptoms are severe or do not go away:

nausea
vomiting
drowsiness
weakness or tiredness
nightmares
headaches
dry mouth
constipation
difficulty urinating
blurred vision
pain, burning, or tingling in the hands or feet
changes in sex drive or ability
excessive sweating
changes in appetite or weight
confusion
unsteadiness

Some side effects can be serious. If you experience any of the
following symptoms or those listed in the IMPORTANT WARNING section,
call your doctor immediately:

slow or difficult speech
dizziness or faintness
weakness or numbness of an arm or a leg
crushing chest pain
rapid, pounding, or irregular heartbeat
severe skin rash or hives
swelling of the face and tongue
yellowing of the skin or eyes
jaw, neck, and back muscle spasms
uncontrollable shaking of a part of the body
fainting
unusual bleeding or bruising
seizures
hallucinating (seeing things or hearing voices that do not exist)

Amitriptyline may cause other side effects. Call your doctor if you
have any unusual problems while taking this medication.

If you experience a serious side effect, you or your doctor may send a
report to the Food and Drug Administration's (FDA) MedWatch Adverse
Event Reporting program online [at
http://www.fda.gov/MedWatch/report.htm] or by phone [1-800-332-1088].

What storage conditions are needed for this medicine? Return to top
Keep this medication in the container it came in, tightly closed, and
out of reach of children. Store it at room temperature and away from
excess heat and moisture (not in the bathroom). Throw away any
medication that is outdated or no longer needed. Talk to your
pharmacist about the proper disposal of your medication.

In case of emergency/overdose Return to top
In case of overdose, call your local poison control center at 1-800-222-
1222. If the victim has collapsed or is not breathing, call local
emergency services at 911.

Symptoms of overdose may include:

irregular heartbeat
seizures
coma (loss of consciousness for a period of time)
confusion
problems concentrating
hallucinating (seeing things or hearing voices that do not exist)
agitation
drowsiness
rigid muscles
vomiting
fever
cold body temperature

What other information should I know? Return to top
Keep all appointments with your doctor and the laboratory. Your doctor
may order certain lab tests to check your body's response to
amitriptyline.

Do not let anyone else take your medication. Ask your pharmacist any
questions you have about refilling your prescription.

Brand names of combination products Return to top
Limbitrol® (containing amitriptyline and chlordiazepoxide)
Limbitrol® DS (containing amitriptyline and chlordiazepoxide)


Last Revised - 08/01/2007

American Society of Health-System Pharmacists, Inc. Disclaimer
The MedMaster™ Patient Drug Information database provides information
copyrighted by the American Society of Health-System Pharmacists, Inc.,
Bethesda, Maryland Copyright© 2007. All Rights Reserved.

Home | Health Topics | Drugs & Supplements | Encyclopedia | Dictionary
| News | Directories | Other Resources
Copyright | Privacy | Accessibility | Quality Guidelines
U.S. National Library of Medicine, 8600 Rockville Pike, Bethesda, MD
20894
National Institutes of Health | Department of Health & Human Services
Page last updated: 19 December 2007

--- In cyclicvomitingsyndrome@yahoogroups.com, "ohgr8nowwhat"
<OneSmartCooke@...> wrote:
>
> Mary -
>
> > I hope they didn't take him off the amitriptyline cold turkey, they
> > are supposed to gradually reduce the dose.
>
> They took him off of it cold turkey. I asked the Neuro. and he said
it
> was fine to stop it immediately and go to the Depakote. I did this
on
> Thurs. and my son says he isn't feeling well. Come to think of it,
he
> was hurting (body/feet) and emotional today. HHMM... More info. and
> thoughts on this would be appreciated!
>
> Terry
>




[Non-text portions of this message have been removed]

Thank you so much for caring about my son and helping me with this!

Terry

I found this info online.  I would definitely call the doctor,
something doesn't sound right.




Other drug names:   A  B  C  D  E  F  G  H  I  J  K  L  M  N  O  P  Q
R  S  T  U  V  W  X  Y  Z  0-9

Amitriptyline
(a mee trip' ti leen)




Contents of this page:
Why is this medication prescribed?
How should this medicine be used?
Other uses for this medicine
What special precautions should I follow?
What special dietary instructions should I follow?
What should I do if I forget a dose?
  What side effects can this medication cause?
What storage conditions are needed for this medicine?
In case of emergency/overdose
What other information should I know?
Brand names of combination products


IMPORTANT WARNING:   Return to top
A small number of children, teenagers, and young adults (up to 24 years
of age) who took antidepressants ('mood elevators') such as
amitriptyline during clinical studies became suicidal (thinking about
harming or killing oneself or planning or trying to do so). Children,
teenagers, and young adults who take antidepressants to treat
depression or other mental illnesses may be more likely to become
suicidal than children, teenagers, and young adults who do not take
antidepressants to treat these conditions. However, experts are not
sure about how great this risk is and how much it should be considered
in deciding whether a child or teenager should take an antidepressant.
Children younger than 18 years of age should not normally take
amitriptyline, but in some cases, a doctor may decide that
amitriptyline is the best medication to treat a child's condition.

You should know that your mental health may change in unexpected ways
when you take amitriptyline or other antidepressants even if you are an
adult over age 24. You may become suicidal, especially at the beginning
of your treatment and any time that your dose is increased or
decreased. You, your family, or your caregiver should call your doctor
right away if you experience any of the following symptoms: new or
worsening depression; thinking about harming or killing yourself, or
planning or trying to do so; extreme worry; agitation; panic attacks;
difficulty falling asleep or staying asleep; aggressive behavior;
irritability; acting without thinking; severe restlessness; and
frenzied abnormal excitement. Be sure that your family or caregiver
knows which symptoms may be serious so they can call the doctor when
you are unable to seek treatment on your own.

Your healthcare provider will want to see you often while you are
taking amitriptyline, especially at the beginning of your treatment. Be
sure to keep all appointments for office visits with your doctor.

The doctor or pharmacist will give you the manufacturer's patient
information sheet (Medication Guide) when you begin treatment with
amitriptyline. Read the information carefully and ask your doctor or
pharmacist if you have any questions. You also can obtain the
Medication Guide from the FDA website:
http://www.fda.gov/cder/drug/antidepressants/antidepressants_MG_2007.pdf
.

No matter your age, before you take an antidepressant, you, your
parent, or your caregiver should talk to your doctor about the risks
and benefits of treating your condition with an antidepressant or with
other treatments. You should also talk about the risks and benefits of
not treating your condition. You should know that having depression or
another mental illness greatly increases the risk that you will become
suicidal. This risk is higher if you or anyone in your family has or
has ever had bipolar disorder (mood that changes from depressed to
abnormally excited) or mania (frenzied, abnormally excited mood) or has
thought about or attempted suicide. Talk to your doctor about your
condition, symptoms, and personal and family medical history. You and
your doctor will decide what type of treatment is right for you.


Why is this medication prescribed?   Return to top
Amitriptyline is used to treat symptoms of depression. Amitriptyline is
in a class of medications called tricyclic antidepressants. It works by
increasing the amounts of certain natural substances in the brain that
are needed to maintain mental balance.

How should this medicine be used?   Return to top
Amitriptyline comes as a tablet to take by mouth. It is usually taken
one to four times a day. Take amitriptyline at around the same time(s)
every day. Follow the directions on your prescription label carefully,
and ask your doctor or pharmacist to explain any part you do not
understand. Take amitriptyline exactly as directed. Do not take more or
less of it or take it more often than prescribed by your doctor.

Your doctor will probably start you on a low dose of amitriptyline and
gradually increase your dose.

It may take a few weeks or longer before you feel the full benefit of
amitriptyline. Continue to take amitriptyline even if you feel well. Do
not stop taking amitriptyline without talking to your doctor. If you
suddenly stop taking amitriptyline, you may experience withdrawal
symptoms such as nausea, headache, and lack of energy. Your doctor will
probably decrease your dose gradually.

Other uses for this medicine   Return to top
Amitriptyline is also sometimes used to treat eating disorders and post-
herpetic neuralgia (the burning, stabbing pains, or aches that may last
for months or years after a shingles infection). Talk to your doctor
about the possible risks of using this medication for your condition.

This medication may be prescribed for other uses; ask your doctor or
pharmacist for more information.

What special precautions should I follow?   Return to top
Before taking amitriptyline,

tell your doctor and pharmacist if you are allergic to amitriptyline or
any other medications.
tell your doctor if you are taking cisapride (Propulsid) (not available
in the U.S.) or monoamine oxidase (MAO) inhibitors such as
isocarboxazid (Marplan), phenelzine (Nardil), selegiline (Eldepryl,
Emsam, Zelapar), and tranylcypromine (Parnate), or if you have taken an
MAO inhibitor during the past 14 days. Your doctor will probably tell
you that you should not take amitriptyline.
tell your doctor and pharmacist what other prescription and
nonprescription medications, vitamins, nutritional supplements, and
herbal products you are taking. Be sure to mention any of the
following: antihistamines; cimetidine (Tagamet); diet pills; disulfiram
(Antabuse); guanethidine (Ismelin); ipratropium (Atrovent); quinidine
(Quinidex); medications for irregular heartbeats such as flecainide
(Tambocor) and propafenone (Rythmol); medications for anxiety, asthma,
colds, irritable bowel disease, mental illness, nausea, Parkinson's
disease, seizures, ulcers, or urinary problems; other antidepressants;
phenobarbital (Bellatal, Solfoton); sedatives; selective serotonin
reuptake inhibitors (SSRIs) such as citalopram (Celexa), fluoxetine
(Prozac, Sarafem), fluvoxamine (Luvox), paroxetine (Paxil), and
sertraline (Zoloft); sleeping pills; thyroid medications; and
tranquilizers. Tell your doctor or pharmacist if you have stopped
taking fluoxetine (Prozac, Sarafem) in the past 5 weeks.Your doctor may
need to change the doses of your medications or monitor you carefully
for side effects.
tell your doctor if you have recently had a heart attack. Your doctor
will probably tell you not to take amitriptyline.
tell your doctor if you drink large amounts of alcohol and if you have
or have ever had glaucoma (an eye condition); an enlarged prostate (a
male reproductive gland); difficulty urinating; seizures; an overactive
thyroid gland (hyperthyroidism); diabetes; schizophrenia (a mental
illness that causes disturbed or unusual thinking, loss of interest in
life, and strong or inappropriate emotions); or liver, kidney, or heart
disease.
tell your doctor if you are pregnant or plan to become pregnant. If you
become pregnant while taking amitriptyline, call your doctor. Do not
breast-feed while you are taking amitriptyline.
if you are having surgery, including dental surgery, tell the doctor or
dentist that you are taking amitriptyline.
you should know that amitriptyline may make you drowsy. Do not drive a
car or operate machinery until you know how this medication affects
you.
remember that alcohol can add to the drowsiness caused by this
medication.
What special dietary instructions should I follow?   Return to top
Unless your doctor tells you otherwise, continue your normal diet.

What should I do if I forget a dose?   Return to top
Take the missed dose as soon as you remember it. However, if it is
almost time for the next dose, skip the missed dose and continue your
regular dosing schedule. Do not take a double dose to make up for a
missed one.

What side effects can this medication cause?   Return to top
Amitriptyline may cause side effects. Tell your doctor if any of these
symptoms are severe or do not go away:

nausea
vomiting
drowsiness
weakness or tiredness
nightmares
headaches
dry mouth
constipation
difficulty urinating
blurred vision
pain, burning, or tingling in the hands or feet
changes in sex drive or ability
excessive sweating
changes in appetite or weight
confusion
unsteadiness

Some side effects can be serious. If you experience any of the
following symptoms or those listed in the IMPORTANT WARNING section,
call your doctor immediately:

slow or difficult speech
dizziness or faintness
weakness or numbness of an arm or a leg
crushing chest pain
rapid, pounding, or irregular heartbeat
severe skin rash or hives
swelling of the face and tongue
yellowing of the skin or eyes
jaw, neck, and back muscle spasms
uncontrollable shaking of a part of the body
fainting
unusual bleeding or bruising
seizures
hallucinating (seeing things or hearing voices that do not exist)

Amitriptyline may cause other side effects. Call your doctor if you
have any unusual problems while taking this medication.

If you experience a serious side effect, you or your doctor may send a
report to the Food and Drug Administration's (FDA) MedWatch Adverse
Event Reporting program online [at
http://www.fda.gov/MedWatch/report.htm] or by phone [1-800-332-1088].

What storage conditions are needed for this medicine?   Return to top
Keep this medication in the container it came in, tightly closed, and
out of reach of children. Store it at room temperature and away from
excess heat and moisture (not in the bathroom). Throw away any
medication that is outdated or no longer needed. Talk to your
pharmacist about the proper disposal of your medication.

In case of emergency/overdose   Return to top
In case of overdose, call your local poison control center at 1-800-222-
1222. If the victim has collapsed or is not breathing, call local
emergency services at 911.

Symptoms of overdose may include:

irregular heartbeat
seizures
coma (loss of consciousness for a period of time)
confusion
problems concentrating
hallucinating (seeing things or hearing voices that do not exist)
agitation
drowsiness
rigid muscles
vomiting
fever
cold body temperature

What other information should I know?   Return to top
Keep all appointments with your doctor and the laboratory. Your doctor
may order certain lab tests to check your body's response to
amitriptyline.

Do not let anyone else take your medication. Ask your pharmacist any
questions you have about refilling your prescription.

Brand names of combination products   Return to top
Limbitrol® (containing amitriptyline and chlordiazepoxide)
  Limbitrol® DS (containing amitriptyline and chlordiazepoxide)



Last Revised - 08/01/2007




American Society of Health-System Pharmacists, Inc. Disclaimer
The MedMaster™ Patient Drug Information database provides information
copyrighted by the American Society of Health-System Pharmacists, Inc.,
Bethesda, Maryland Copyright© 2007. All Rights Reserved.

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20894
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Page last updated: 19 December 2007



--- In cyclicvomitingsyndrome@yahoogroups.com, "ohgr8nowwhat"
<OneSmartCooke@...> wrote:
>
> Mary -
>
> > I hope they didn't take him off the amitriptyline cold turkey, they
> > are supposed to gradually reduce the dose.
>
> They took him off of it cold turkey.  I asked the Neuro. and he said
it
> was fine to stop it immediately and go to the Depakote.  I did this
on
> Thurs. and my son says he isn't feeling well.  Come to think of it,
he
> was hurting (body/feet) and emotional today.  HHMM...  More info. and
> thoughts on this would be appreciated!
>
> Terry
>

There are side affects to going off without gradually reducing the
dosage, especially if they've been on it for a while.  I would suggest
looking it up online to find out what they are.  Be extremely cautious,
if I remember correctly there was a warning about using that medication
and problems with depression and suicide in teenagers.  Call the doctor
and let him know about the problems your son is having.  Don't let him
suffer.  It's been awhile since our daughter was on it, so I don't
remember that much.  Just enough to know to be careful.  I wish you and
your son the best.  Let me know how he does.

Mary

--- In cyclicvomitingsyndrome@yahoogroups.com, "ohgr8nowwhat"
<OneSmartCooke@...> wrote:
>
> Mary -
>
> > I hope they didn't take him off the amitriptyline cold turkey, they
> > are supposed to gradually reduce the dose.
>
> They took him off of it cold turkey.  I asked the Neuro. and he said
it
> was fine to stop it immediately and go to the Depakote.  I did this
on
> Thurs. and my son says he isn't feeling well.  Come to think of it,
he
> was hurting (body/feet) and emotional today.  HHMM...  More info. and
> thoughts on this would be appreciated!
>
> Terry
>

Christine -

> Mady's in the hospital for the weekend--still can't stop puking.

I am so sorry.


> My husband and switched spots for tonight--

GOOD!  You need a rest.


> I think they're going to give her Atavin (sp?) tonight to knock her
out.

My son has taken oral ativan and it did not work for us.  I hope the
IV will work.


> One thing the doc mentioned today was something about sympathetic
and parasympathetic nervous systems having something to do with
CVS ??? Anyone have a clue about this?

Absolutely not clue.  SORRY!

I am glad to be of some help.  It is amazing when you actually can
talk about things and people understand!

Terry

Mimi -

> Are we allowed to talk doses here re: the CoQ10 and L-Carnitine?

I have asked about this in the past and I believe the info. should be
in the archives.  Put each one in the search and it will come up with
past posts where we have talked about these.  I hope that helps.

Terry

I'm glad they decided to keep her.  I agree, the care isn't always
the greatest on the week-end.  Giving her something to knock her out
is the best thing right now.  Kathleen is allergic to Ativan, she
usually gets chlorpromazine.  It is hard to understand how they can
keep throwing up.  Most of what we know about throwing up is related
to stomach viruses.  None of that applies to this situation, nor does
what we normally do in that case.  With CVS (as I understand it),
something in the brain triggers (and there are lots of triggers) the
vagus nerve to go in to a kind of hyperspasm which causes relentless
vomiting.  The only way to stop it once vomiting starts is to make
the vagus nerve go to sleep. This is probably an over-simplification,
but I hope it helps.  That's why they call it a brain-gut disorder.

I'm glad you were able to come home and get some rest, you need to
take care of yourself too.  If your 14 year old daughter needs to
talk to someone, I have a 14 year old daughter that can commiserate.
She has had to take a back seat way too many times too.  My husband
and I have health problems as well, so it is quite an adventure at
our house.  Someone even had the nerve (it still makes me angry
thinking about it!) to tell my younger daughter, who was 12 at the
time, that it was her job to take care of the rest of the family,
since she was the only healthy one.  Can you imagine anyone putting
that kind of pressure on a child?!  I would suggest, when you can, to
have a date night with your 14 year old.  This way she can have some
special time with you.  We have found this to be helpful, and she
will usually tell me things then, that she wouldn't otherwise. She
needs to be able to talk about how she feels and know that it is ok.

It is a good thing that they are doing tests, because CVS is
diagnosed by ruling everything else out.

I know how frantic and beside yourself you are feeling.  It's very
hard to watch your child be so ill and feel so helpless and then have
to deal with medical people who don't always know what they are doing
either.  You know that's why they call it "practicing medicine"!  : )
One thing I have learned is that I'm the one that cares the most and
if I don't speak up for my child who will?  I've also learned to
trust my gut feelings and not care what other people think. I've had
doctors tell me that I'm overly protective, etc., but I did
eventually find the right doctor and got help for my daughter.  And
when it's all said and done, that is what matters.  That is being a
good mom.

Hang in there and keep us posted.

Still praying and sending (((hugs))),

Mary


--- In cyclicvomitingsyndrome@yahoogroups.com, "Christine and Steve
Marks" <4marks@...> wrote:
>
> Mady's in the hospital for the weekend--still can't stop puking. My
husband and switched spots for tonight--I'm home with a martini (is
it ok to say that?!). I think they're going to give her Atavin (sp?)
tonight to knock her out. Is that what they use for Kathleen or
anyone else?  She wants to eat so badly and tried several times, no
luck or course. Even the bubble gum she was chewing made her yack.
The weekend is a rotten time to get any help in the hospital, but the
GI doc on the floor has been in contact with our doc. They did an
ultrasound of her kidney, etc and belly xrays to rule out blockages.
I think they're going to give her an enema, too, since it's been at
least a week since she's done anything. But, jeez, she's been
throwing up for the better part of 4 weeks and lost 10 lbs--what
could she possibly still have in her intestine???  If I tell you I'm
beside myself, I'm guessing you all know what I mean. How can she
just keep throwing up? Rhetorical...  Milwaukee is 2 hours from our
house. Could be a lot worse.  Fortunately we live in a small, tight-
knit suburb and my mom is close by to be there for our 14 year old
daughter who gets the short end of everything when we have to drop it
all to get to the er or dr appts.  One thing the doc mentioned today
was something about sympathetic and parasympathetic nervous systems
having something to do with CVS ??? Anyone have a clue about this?
This guy was kind but had about zero personality so it was tough to
relate to him.  I'm sure I'll have more info when I get back with
the "regular" team on Monday.  I'll keep you posted but in the
meantime you have no idea how much it means to know all of you
unknown friends are out there in cyberspace sending prayers and hugs
to a kid and her family who you don't even know.  Thank you. Christine
>
> [Non-text portions of this message have been removed]
>

Mary -

> I hope they didn't take him off the amitriptyline cold turkey, they
> are supposed to gradually reduce the dose.

They took him off of it cold turkey.  I asked the Neuro. and he said it
was fine to stop it immediately and go to the Depakote.  I did this on
Thurs. and my son says he isn't feeling well.  Come to think of it, he
was hurting (body/feet) and emotional today.  HHMM...  More info. and
thoughts on this would be appreciated!

Terry

Mady's in the hospital for the weekend--still can't stop puking. My husband and
switched spots for tonight--I'm home with a martini (is it ok to say that?!). I
think they're going to give her Atavin (sp?) tonight to knock her out. Is that
what they use for Kathleen or anyone else?  She wants to eat so badly and tried
several times, no luck or course. Even the bubble gum she was chewing made her
yack. The weekend is a rotten time to get any help in the hospital, but the GI
doc on the floor has been in contact with our doc. They did an ultrasound of her
kidney, etc and belly xrays to rule out blockages. I think they're going to give
her an enema, too, since it's been at least a week since she's done anything.
But, jeez, she's been throwing up for the better part of 4 weeks and lost 10
lbs--what could she possibly still have in her intestine???  If I tell you I'm
beside myself, I'm guessing you all know what I mean. How can she just keep
throwing up? Rhetorical...  Milwaukee is 2 hours from our house. Could be a lot
worse.  Fortunately we live in a small, tight-knit suburb and my mom is close by
to be there for our 14 year old daughter who gets the short end of everything
when we have to drop it all to get to the er or dr appts.  One thing the doc
mentioned today was something about sympathetic and parasympathetic nervous
systems having something to do with CVS ??? Anyone have a clue about this?  This
guy was kind but had about zero personality so it was tough to relate to him. 
I'm sure I'll have more info when I get back with the "regular" team on Monday. 
I'll keep you posted but in the meantime you have no idea how much it means to
know all of you unknown friends are out there in cyberspace sending prayers and
hugs to a kid and her family who you don't even know.  Thank you. Christine

[Non-text portions of this message have been removed]

Are we allowed to talk doses here re: the CoQ10 and L-Carnitine? Thanks, Mimi

-------------- Original message --------------
From: "mcdolemom728" <mcdolemom@...>
I'm so sorry to hear that you had to make another trip back to the
hospital. They should have admitted her the first time and made sure
she was ok before sending her home. Our doctor always does a direct
admit, bypassing the ER and gives meds to put Kathleen to sleep for
several hours to stop the cycle. He says once the vomiting starts
that is about all that truly works.

How far away are you from Milwaukee? We drive 2 hours to Columbia,
MO to see Dr. Fleisher, and when she needs to go to the hospital. We
go to the University of Missouri Medical Center. Seems a shame since
we live in the St. Louis, MO area that there isn't anyone here that
knows what to do. We went to several (many) docs and hospitals in
our search for help, but didn't get any here. St. Louis Children's
Hospital is supposed to be one of the best in the country, but they
were NO help to us. One time we spent 5 hours just in the ER waiting
room, the whole time she was throwing up (had been for a week) and on
the verge of passing out and no one seemed to care. She lost 36
pounds before we found Dr. Fleisher. I truly thought she might die
before we could get someone to help us. Thank God for the internet
and being able to search out the experts!

I hope you can get info on the Co Q10 and L-Carnitine, they truly
have been a miracle for Kathleen. She has gone 18 months without
being hospitalized. She did have a couple of episodes that we were
able to treat at home.

Hang in there, it will get better. Help is available, you just have
to be diligent and find it.

You, your daughter and family are in our prayers. Let us know when
she is better and wants to talk with Kathleen. (((HUGS)))

Mary

--- In cyclicvomitingsyndrome@yahoogroups.com, "Christine and Steve
Marks" <4marks@...> wrote:
>
> Thanks to everyone who has resonded. We were in the ER for 8 hours
yesterday...seemed like we'd shut the cycle down. Came home and had
the pizza Mady had been craving. She's down to 79lbs on her 5'1"
frame--we were thrilled to see her packing it away. But the nausea
returned several hours later and we were back with the "chucket"
(upchuck bucket) as she calls it all day. We're headed up to
Milwaukee tomorrow where they want to admit her. Whatever it takes to
stop this and get some weight back on her. I'm going to ask about the
CoQ10 and anything else I can think of. She's looking forward to
chatting with other CVS kids when she gets home. I agree with her
that no matter how rotten this is, it's quite a comfort to find that
she's not alone. We'll let you know how it goes!
>
> [Non-text portions of this message have been removed]
>




[Non-text portions of this message have been removed]

I'm so sorry to hear that you had to make another trip back to the
hospital.  They should have admitted her the first time and made sure
she was ok before sending her home.  Our doctor always does a direct
admit, bypassing the ER and gives meds to put Kathleen to sleep for
several hours to stop the cycle.  He says once the vomiting starts
that is about all that truly works.

How far away are you from Milwaukee?  We drive 2 hours to Columbia,
MO to see Dr. Fleisher, and when she needs to go to the hospital.  We
go to the University of Missouri Medical Center.  Seems a shame since
we live in the St. Louis, MO area that there isn't anyone here that
knows what to do.  We went to several (many) docs and hospitals in
our search for help, but didn't get any here.  St. Louis Children's
Hospital is supposed to be one of the best in the country, but they
were NO help to us.  One time we spent 5 hours just in the ER waiting
room, the whole time she was throwing up (had been for a week) and on
the verge of passing out and no one seemed to care.  She lost 36
pounds before we found Dr. Fleisher.  I truly thought she might die
before we could get someone to help us.  Thank God for the internet
and being able to search out the experts!

I hope you can get info on the Co Q10 and L-Carnitine, they truly
have been a miracle for Kathleen.  She has gone 18 months without
being hospitalized.  She did have a couple of episodes that we were
able to treat at home.

Hang in there, it will get better.  Help is available, you just have
to be diligent and find it.

You, your daughter and family are in our prayers.  Let us know when
she is better and wants to talk with Kathleen.   (((HUGS)))

Mary

--- In cyclicvomitingsyndrome@yahoogroups.com, "Christine and Steve
Marks" <4marks@...> wrote:
>
> Thanks to everyone who has resonded. We were in the ER for 8 hours
yesterday...seemed like we'd shut the cycle down. Came home and had
the pizza Mady had been craving. She's down to 79lbs on her 5'1"
frame--we were thrilled to see her packing it away. But the nausea
returned several hours later and we were back with the "chucket"
(upchuck bucket) as she calls it all day. We're headed up to
Milwaukee tomorrow where they want to admit her. Whatever it takes to
stop this and get some weight back on her. I'm going to ask about the
CoQ10 and anything else I can think of.  She's looking forward to
chatting with other CVS kids when she gets home.  I agree with her
that no matter how rotten this is, it's quite a comfort to find that
she's not alone.  We'll let you know how it goes!
>
> [Non-text portions of this message have been removed]
>

I hope they didn't take him off the amitriptyline cold turkey, they
are supposed to gradually reduce the dose.  Our daughter had problems
with it too and we were glad when she got off it.  They put her on
Imipramine, which helped, she is now off it too.  As I've stated
before, the Co Q10 and L-Carnitine have been miraculous for her.
They are the only drugs she takes now on a regular basis. Best of
luck to you.

Mary

--- In cyclicvomitingsyndrome@yahoogroups.com, "ohgr8nowwhat"
<OneSmartCooke@...> wrote:
>
> My son (11) used amitriptyline as a migraine and headache
> preventative.  I have not heard it being used for CVS.  Since being
> on a low dose of amitriptyline for a few years, we did notice the
> episodes of CVS and migraine got further apart.  He has continued
to
> have daily headaches.  Since his weight increased, we have
increased
> his dose.  We also had to increase his dose of Prevacid.  His
> headaches have persisted so we increased the amitriptyline x4 in
the
> past year.  Since doing this, we have had to increase his Prevacid
x4
> as his acid reflux has gotten much worse.  The acid reflux is
> somewhat out of control at this time and we are very frustrated!
>
> Amitriptyline can cause or add to GI issues!
>
> After seeing Neruo. yesterday, we stopped it completely last night
> and put my son on another medication.
>
> I have given a link to Web MD and the info. on side effects and
> severe side effects.  Nice that they don't tell you these things!
> GGRR
>
> Terry
> ***********************
>
>
> http://www.webmd.com/drugs/drug-8611-Amitriptyline+Oral.aspx?
> drugid=8611&drugname=Amitriptyline+Oral
>
> Drowsiness, dizziness, dry mouth, blurred vision, constipation,
fast
> heartbeat, nausea, vomiting, loss of appetite, changes in taste,
> weight gain, tiredness, or trouble urinating may occur. If any of
> these effects persist or worsen, notify your doctor or pharmacist
> promptly.
>
> Tell your doctor immediately if any of these rare but very serious
> side effects occur: seizures, easy bruising/bleeding, signs of
> infection (e.g., fever, persistent sore throat), yellowing
eyes/skin,
> severe stomach/abdominal pain, dark urine, persistent
> nausea/vomiting, pain/redness/swelling of arms or legs, weakness on
> one side of the body, slurred speech, vision changes.
>

My son (11) used amitriptyline as a migraine and headache
preventative.  I have not heard it being used for CVS.  Since being
on a low dose of amitriptyline for a few years, we did notice the
episodes of CVS and migraine got further apart.  He has continued to
have daily headaches.  Since his weight increased, we have increased
his dose.  We also had to increase his dose of Prevacid.  His
headaches have persisted so we increased the amitriptyline x4 in the
past year.  Since doing this, we have had to increase his Prevacid x4
as his acid reflux has gotten much worse.  The acid reflux is
somewhat out of control at this time and we are very frustrated!

Amitriptyline can cause or add to GI issues!

After seeing Neruo. yesterday, we stopped it completely last night
and put my son on another medication.

I have given a link to Web MD and the info. on side effects and
severe side effects.  Nice that they don't tell you these things!
GGRR

Terry
***********************


http://www.webmd.com/drugs/drug-8611-Amitriptyline+Oral.aspx?
drugid=8611&drugname=Amitriptyline+Oral

Drowsiness, dizziness, dry mouth, blurred vision, constipation, fast
heartbeat, nausea, vomiting, loss of appetite, changes in taste,
weight gain, tiredness, or trouble urinating may occur. If any of
these effects persist or worsen, notify your doctor or pharmacist
promptly.

Tell your doctor immediately if any of these rare but very serious
side effects occur: seizures, easy bruising/bleeding, signs of
infection (e.g., fever, persistent sore throat), yellowing eyes/skin,
severe stomach/abdominal pain, dark urine, persistent
nausea/vomiting, pain/redness/swelling of arms or legs, weakness on
one side of the body, slurred speech, vision changes.

Thanks to everyone who has resonded. We were in the ER for 8 hours
yesterday...seemed like we'd shut the cycle down. Came home and had the pizza
Mady had been craving. She's down to 79lbs on her 5'1" frame--we were thrilled
to see her packing it away. But the nausea returned several hours later and we
were back with the "chucket" (upchuck bucket) as she calls it all day. We're
headed up to Milwaukee tomorrow where they want to admit her. Whatever it takes
to stop this and get some weight back on her. I'm going to ask about the CoQ10
and anything else I can think of.  She's looking forward to chatting with other
CVS kids when she gets home.  I agree with her that no matter how rotten this
is, it's quite a comfort to find that she's not alone.  We'll let you know how
it goes!

[Non-text portions of this message have been removed]

--- In cyclicvomitingsyndrome@yahoogroups.com, "Christine Marks"
<4marks@...> wrote:
>
> Our 12 year old daughter was diagnosed Friday with CVS. We are seeing
> the group at Milwaukee (Dr. Rudolph). It's been 2.5 years since this
> started in earnest, but as most of you, I can trace it back to
> infancy.  Right now she's in a mild stage of a seemingly endless
> episode.  We've been in the er for iv fluids 2x in the past month.
> we're waiting for a clean EKG before we can start her on daily doses
of
> amitryptiline--hopefully soon. Does anyone have any experience with
> this?  We've been giving her the 8mg doses of Zofran every 4-6 hours
> but it's hard to tell if it's helping. At least she's not vomiting
> constantly...small consolation.  I'm searching for anyone about her
age
> who shares this curse. I think it would help her so much to
commiserate
> with a peer.
>
Our 9 year old has had CVS since age 4 and I am so blessed to have
found this site and you who understand.  We finally got the correct
diagnosis around age 7 and we take Cyproheptadine on the on-set of
an 'attack' as we call it.  It doesn't take it away, but lessens the
severity of the attack.  We've tried Zofran but that didn't work for
us.  I would love the chance for your daughter and my son to talk about
this with each other so they understand they are not alone.  Just let
me know :)

How is your daughter today?  I hope she is feeling much better.  Are
they doing more than giving her IV fluids when she goes to the ER?  Our
doctor always makes sure she is directly admitted and gets meds to make
her sleep for a long period of time in order to break the cycle.
Another thing to look for on the CVS website is Dr. Fleisher's empiric
guidelines for treating CVS.  He is our doctor and the difference has
been absolutely amazing for us.  Hope today is a better day and that
you both get some rest.

God bless,

Mary  (Kathleen's mom)


--- In cyclicvomitingsyndrome@yahoogroups.com, "Christine and Steve
Marks" <4marks@...> wrote:
>
> Kathleen:
> She will LOVE to talk to you...I'm getting ready to take her into the
er for fluids, but you can be sure she'll get back to you as soon as
we're home again.  Thank you very much--
>
> Christine Marks,
> Mady's mom
>
> [Non-text portions of this message have been removed]
>

i also have a 10 yr old girl that has had it since she was a baby ....she would
be happy to talk to your daughter about it.....
   I really want to try the supplements and havent yet ...anyone know the dosages
for carnitine and the Q 10?

mcdolemom728 <mcdolemom@...> wrote:
           Hi, I'm Kathleen, the 17 year old my mom was talking about.
If your daughter would like, I would love to talk to her some time.
I know it can be really hard ecspecially when there is no one you know
going through this, or it feels like no one else understands.
I know it really helped me a few years ago when I was able to talk to
someone else with cvs. Even though I was never able to meet them, it
was so nice to have someone to talk to. I think it helped us both alot.

--- In cyclicvomitingsyndrome@yahoogroups.com, "Christine Marks"
<4marks@...> wrote:
>
> Our 12 year old daughter was diagnosed Friday with CVS. We are seeing
> the group at Milwaukee (Dr. Rudolph). It's been 2.5 years since this
> started in earnest, but as most of you, I can trace it back to
> infancy. Right now she's in a mild stage of a seemingly endless
> episode. We've been in the er for iv fluids 2x in the past month.
> we're waiting for a clean EKG before we can start her on daily doses
of
> amitryptiline--hopefully soon. Does anyone have any experience with
> this? We've been giving her the 8mg doses of Zofran every 4-6 hours
> but it's hard to tell if it's helping. At least she's not vomiting
> constantly...small consolation. I'm searching for anyone about her
age
> who shares this curse. I think it would help her so much to
commiserate
> with a peer.
>






---------------------------------
Looking for last minute shopping deals?  Find them fast with Yahoo! Search.

[Non-text portions of this message have been removed]

Kathleen:
She will LOVE to talk to you...I'm getting ready to take her into the er for
fluids, but you can be sure she'll get back to you as soon as we're home again. 
Thank you very much--

Christine Marks,
Mady's mom

[Non-text portions of this message have been removed]

Hi, I'm Kathleen, the 17 year old my mom was talking about.
If your daughter would like, I would love to talk to her some time.
I know it can be really hard ecspecially when there is no one you know
going through this, or it feels like no one else understands.
I know it really helped me a few years ago when I was able to talk to
someone else with cvs. Even though I was never able to meet them, it
was so nice to have someone to talk to. I think it helped us both alot.




--- In cyclicvomitingsyndrome@yahoogroups.com, "Christine Marks"
<4marks@...> wrote:
>
> Our 12 year old daughter was diagnosed Friday with CVS. We are seeing
> the group at Milwaukee (Dr. Rudolph). It's been 2.5 years since this
> started in earnest, but as most of you, I can trace it back to
> infancy.  Right now she's in a mild stage of a seemingly endless
> episode.  We've been in the er for iv fluids 2x in the past month.
> we're waiting for a clean EKG before we can start her on daily doses
of
> amitryptiline--hopefully soon. Does anyone have any experience with
> this?  We've been giving her the 8mg doses of Zofran every 4-6 hours
> but it's hard to tell if it's helping. At least she's not vomiting
> constantly...small consolation.  I'm searching for anyone about her
age
> who shares this curse. I think it would help her so much to
commiserate
> with a peer.
>

My daughter is 17 now and we've been where you are.  The good news is
that she is so much better now.  She hasn't been hospitalized or had a
really bad episode in about 18 months.  Her doctor put her on Co Q 10
and L-Carnitine (you can read about the research on this at
www.cvsaonline.org ) and it has made a HUGE difference.  Our family has
recently been through a lot of stress and she didn't have any reactions
to it at all from the CVS.  I highly recommend trying the Co Q 10 and L-
Carnitine. Our daughter had problems with the amitryptiline, but she
did take Imipramine for some time, she is off of it now.  We went
through a really rough time when she was 12-16, and at times thought
life would never be normal again.  Hang in there, better days are
coming.


--- In cyclicvomitingsyndrome@yahoogroups.com, "Christine Marks"
<4marks@...> wrote:
>
> Our 12 year old daughter was diagnosed Friday with CVS. We are seeing
> the group at Milwaukee (Dr. Rudolph). It's been 2.5 years since this
> started in earnest, but as most of you, I can trace it back to
> infancy.  Right now she's in a mild stage of a seemingly endless
> episode.  We've been in the er for iv fluids 2x in the past month.
> we're waiting for a clean EKG before we can start her on daily doses
of
> amitryptiline--hopefully soon. Does anyone have any experience with
> this?  We've been giving her the 8mg doses of Zofran every 4-6 hours
> but it's hard to tell if it's helping. At least she's not vomiting
> constantly...small consolation.  I'm searching for anyone about her
age
> who shares this curse. I think it would help her so much to
commiserate
> with a peer.
>

My daughter is only 8, but the size of an average 4-year-old, so the 8mg of
Zofran can only be 4-6 for us...We're trying Amytriptilline right now, after our
recent 3-month hospital stay, this time. My daughter also has severe heart
defects so this med is scary, and it seems to be NOT helping. She's also taking
4mg of Zofran every 8 hours. We've just started a new one" Clonidine. It acts
against receptors in the brain stem, and for the 1st time in about 4 months she
is not even nauseous!
   God bless....


Kim...
   Blessed to be Homeschooling Mom to:
   Kira age 19
Elena age 14
Erica age 14
Christian age 8
Emmie, our miracle heart baby, age 8
   "For this very heart you have shaped for your pleasure, purposed to lift your
name high."
MEET EMMIE AT www.emmie.info  or
   http://www.carepages.com/ServeCarePage?cpn=EmmieMangione&cid=eminvite
   ... But be careful ... She will steal your heart!



[Non-text portions of this message have been removed]

Our 12 year old daughter was diagnosed Friday with CVS. We are seeing
the group at Milwaukee (Dr. Rudolph). It's been 2.5 years since this
started in earnest, but as most of you, I can trace it back to
infancy.  Right now she's in a mild stage of a seemingly endless
episode.  We've been in the er for iv fluids 2x in the past month.
we're waiting for a clean EKG before we can start her on daily doses of
amitryptiline--hopefully soon. Does anyone have any experience with
this?  We've been giving her the 8mg doses of Zofran every 4-6 hours
but it's hard to tell if it's helping. At least she's not vomiting
constantly...small consolation.  I'm searching for anyone about her age
who shares this curse. I think it would help her so much to commiserate
with a peer.

Our Devin is having a hard time with vomiting and hospitalizations
lately. He's been hospitalized six times in the past seven months with
it, the latest one we just left the hospital on Christmas Eve. We know
that most of them have been caused by viruses Devin's twin brother
brings home from school. He is autistic, and this is his first time
ever in school (they're 9 years old). School is good for him, but we're
sacrificing Devin's health for it.
In short, I wonder if we should keep Antonio in school because he needs
to learn how to get along in the world, or do we save Devin and keep
Antonio home? It kills me to see Devin go through this. Dh and I
haven't decided for sure what to do yet, but I thought I'd ask you for
your opinions.
Thank you,
Kristine *Ü*