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I'd like to try withdrawing from my meds. I'm not sure if I really need

them or not. If I miss them for a day, I have definite mood changes. How

did you tell that those changes were withdrawal and not from need? And how

did you finally get off -- if you, in fact, did?

Michele W

Aubrie's mom

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Michele,

I have just started weaning from mine. My doctor has me taking my full does

every other day and 1/2 that dose on the alternate days for a month, then we

will go to the 1/2 dose every day for a month and then go from there. I for

one would like to come off still being able to move and think, those

headaches are awful and I don't typically have migraines. For me it will be

different because the " hot spots " I have had for years subsided while on the

Effexor. If they flare up again, we will assume that is another indicator

that I do have fibromyalgia, and likely stay on as low a dose of the Effexor

as I can without having increased pain.

As far as the moods, I don't know how fast the change really happens, but

lately I have been tearful on days I have been out or whatever, but with all

that is happening around here, who would know if its from lack of meds or

just life.

Kim

> -

> I'd like to try withdrawing from my meds. I'm not sure if I really need

> them or not. If I miss them for a day, I have definite mood changes. How

> did you tell that those changes were withdrawal and not from need? And how

> did you finally get off -- if you, in fact, did?

>

> Michele W

> Aubrie's mom

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

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Michele,

I did get off them about 2 1/2 yrs ago. I just decided I didn't want to take

them anymore and wanted to see how I made out without them. I did fine (mood

wise) - it was just the crazy dizziness/disorientation that I couldn't handle.

If you go off, do it under a doc's supervision...

Michele Westmaas wrote:

-

I'd like to try withdrawing from my meds. I'm not sure if I really need

them or not. If I miss them for a day, I have definite mood changes. How

did you tell that those changes were withdrawal and not from need? And how

did you finally get off -- if you, in fact, did?

Michele W

Aubrie's mom

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca or email

info@... .

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

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Dear All

First off I thought the withdrawal was the kids meds, now i realise

its the adults, I have seen this Fibromyalgia before in a book I was

reading about Lupus, is it an auto immune disease???????? my book

was from a women in America who said she could cure Lupus, through

diet, she as it turned out, i had to buy the book was a vegan.

anyhow to cut long story short, I tested 'weak positive to lupus

SLE, after the blood clots on my lungs, but my test are inconclusive

becasue i still had warfarin in my system, I go back in Marchg to

discuss the latest bloods, I could have this fibro thing instead I

remeber thinking it sounded more like me and I dont have symptoms of

lupus, is it the joint and aches and pains thing with chronic

fatigue and so on or have I got the wrong thing??

in the meantime i have been put on aspirin.

Lesley interested to know more.

>

> > -

> > I'd like to try withdrawing from my meds. I'm not sure if I

really need

> > them or not. If I miss them for a day, I have definite mood

changes. How

> > did you tell that those changes were withdrawal and not from

need? And how

> > did you finally get off -- if you, in fact, did?

> >

> > Michele W

> > Aubrie's mom

> >

> >

> >

> > Membership of this email support groups does not constitute

membership in the

> > CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > For information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@c... or visit

> > the web site at http://www.chargesyndrome.org - for CHARGE

Syndrome Canada

> > information and membership, please visit

http://www.chargesyndrome.ca or email

> > info@c... .

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be

available at

> > www.chargesyndrome.org or by calling 1-.

> >

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Lesley,

I have what I call hot spots, places that burn when they are touched, and

are not areas you would usually associate with pain, they do tend to be

where connective tissue connects to bone, but is not in the joint if that

makes sense. Also light sensitive headaches that I had not experienced

before. Fatigue. I have wondered for a long time. I started taking

Effexor XR due to its impact on norepinephrine in hopes to decrease some of

the trauma responses I was having after my brother and dad died. What I

have noticed over the last year is that I have had very little hot spot

pain, Roy can even rub my feet again without me going through the roof if he

touches my toe in a certain spot. Also have not had the headaches unless I

miss the med. In addition when my naturopath checked my nuerotransmitter

levels my serotonin level was exceedingly low, which is also common in

fibromyalgia and why oftentimes it is treated with an antidepressant. Oh

yes and lets not forget the brain fog, that seems to me to be worse than

what I would expect even considering my age and the events of the last few

years.

Who knows I will see how I do coming off it.

Kim

> Dear All

>

> First off I thought the withdrawal was the kids meds, now i realise

> its the adults, I have seen this Fibromyalgia before in a book I was

> reading about Lupus, is it an auto immune disease???????? my book

> was from a women in America who said she could cure Lupus, through

> diet, she as it turned out, i had to buy the book was a vegan.

>

> anyhow to cut long story short, I tested 'weak positive to lupus

> SLE, after the blood clots on my lungs, but my test are inconclusive

> becasue i still had warfarin in my system, I go back in Marchg to

> discuss the latest bloods, I could have this fibro thing instead I

> remeber thinking it sounded more like me and I dont have symptoms of

> lupus, is it the joint and aches and pains thing with chronic

> fatigue and so on or have I got the wrong thing??

> in the meantime i have been put on aspirin.

>

> Lesley interested to know more.

>

>

>

>

>

>

>>

>>> -

>>> I'd like to try withdrawing from my meds. I'm not sure if I

> really need

>>> them or not. If I miss them for a day, I have definite mood

> changes. How

>>> did you tell that those changes were withdrawal and not from

> need? And how

>>> did you finally get off -- if you, in fact, did?

>>>

>>> Michele W

>>> Aubrie's mom

>>>

>>>

>>>

>>> Membership of this email support groups does not constitute

> membership in the

>>> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

>>> For information about the CHARGE Syndrome

>>> Foundation or to become a member (and get the newsletter),

>>> please contact marion@c... or visit

>>> the web site at http://www.chargesyndrome.org - for CHARGE

> Syndrome Canada

>>> information and membership, please visit

> http://www.chargesyndrome.ca or email

>>> info@c... .

>>> 8th International

>>> CHARGE Syndrome Conference, July, 2007. Information will be

> available at

>>> www.chargesyndrome.org or by calling 1-.

>>>

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Kim-

Thanks for sharing your plan. Interesting stuff. I'll have to think about

how to proceed myself or if just to stay where things are -- don't fix it if

it ain't broke kinda thing.

Michele

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Lesley-

I forgot you had your own health concerns on top of college, the kids,

Darrin, and Amelie. Gee whiz... have you read " Yeast Connection and

Women's Health " ? There's a website: www.yeastconnection.com. I would

never have managed it myself, but I had the help of a holistic dr. I was

having all kinds of female symptoms. My gynecologist, who was also a

friend, was ready to do a hysterectomy cuz he just didn't know what else to

do to help. The holistic dr took me off all sugar, basically a candida diet

(in holistic lingo). I had chronic systematic yeast. Not vaginal yeast,

but an overgrowth thru the digestive tract. It can also lead to

fibromyalgia and lots of other things. I know Flo and Simon use a holistic

practitioner. Maybe they'd know of someone near you. I am back to a

regular sugary bad diet now without the symptoms I used to have. If you

could make some dietary changes and get yourself in order, wouldn't that be

awesome? It won't be the case for everyone, but what if it worked for you?

Just another thought to add to your already busy mind...

Michele W

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Kim & Lesley-

The brain fog, headaches and fatigue were huge symptoms of candida

overgrowth for me. Also lots of female problems which I think were just my

body's cute little way of personalizing it for me.

Michele W

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Im on Effexor and find if i go off for a day i have the worst mood swings, i

got the head fog thing with Zoloft, Effexor has been really good but if i

miss a day im horrible,

are u gonn go off cold turkey? make sure u tralk to ur docor about

it,

>

> Lesley-

> I forgot you had your own health concerns on top of college, the kids,

> Darrin, and Amelie. Gee whiz... have you read " Yeast Connection and

> Women's Health " ? There's a website: www.yeastconnection.com. I would

> never have managed it myself, but I had the help of a holistic dr. I was

> having all kinds of female symptoms. My gynecologist, who was also a

> friend, was ready to do a hysterectomy cuz he just didn't know what else

> to

> do to help. The holistic dr took me off all sugar, basically a candida

> diet

> (in holistic lingo). I had chronic systematic yeast. Not vaginal yeast,

> but an overgrowth thru the digestive tract. It can also lead to

> fibromyalgia and lots of other things. I know Flo and Simon use a

> holistic

> practitioner. Maybe they'd know of someone near you. I am back to a

> regular sugary bad diet now without the symptoms I used to have. If you

> could make some dietary changes and get yourself in order, wouldn't that

> be

> awesome? It won't be the case for everyone, but what if it worked for

> you?

> Just another thought to add to your already busy mind...

>

> Michele W

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

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Bel-

No, I would never go off cold turkey. I'm not even sure I should go off.

My holistic dr tells me I don't need it. But it's scary to think about

going off when just one day makes such a huge difference. Trying to tell if

that difference is from withdrawal or real need is what perplexes me.

Michele

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Michele, I'm afraid I've been so caught up with 's own withdrawal

issues that I've missed what you're trying to do. Please fill me in (privately,

if you'd like: lewcap@...). I've been absolutely amazed at how

many of us (CHARGErs and parents) are on these drugs. I had no idea.

Martha

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Are there other CHARGErs on antidepressents?

>

> Michele, I'm afraid I've been so caught up with 's own withdrawal

> issues that I've missed what you're trying to do. Please fill me in

> (privately,

> if you'd like: lewcap@...). I've been absolutely amazed at how

> many of us (CHARGErs and parents) are on these drugs. I had no idea.

> Martha

>

>

>

>

>

>

>

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Martha,

I have taken an antidepressant for the last year, although I must say it was

not my CHARGEr that drove me to it.

Kim

> is. I, her mother, finally am! I'd really love to know how common this

> is. Martha

>

>

>

>

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im on a kinda one they perscribied it for pain relief but dad uses it as an

antidepressant so i guess ou could say we both are jsut for different

reasons:)hugs ellen

>

> is. I, her mother, finally am! I'd really love to know how common

> this

> is. Martha

>

>

>

>

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he probly didtn help ti all though lol

>

> Martha,

>

> I have taken an antidepressant for the last year, although I must say it

> was

> not my CHARGEr that drove me to it.

>

> Kim

>

>

>

>

> > is. I, her mother, finally am! I'd really love to know how common

> this

> > is. Martha

> >

> >

> >

> >

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Ive been on paxil but missing a doese is really bad for me. I missed

one dose and i tried to kill myself cause i felt i couldnt deal with

an issue that even now without meds i could have delt with a little

better. Mind you there were bigger stressors on me. I was still living

at home with mom. Still, i dont think trying to OD really would have

helped any.

I think maby there is a chemical imbalance for sure, but im not sure

if going on paxil would be a good idea for me. I was on a very high

does. The other problem i had is I had no energy and ive never been

able to get my strength back since i was on paxil. I think the combo

of missing a doase and OD did cause a little bit of havoc with my

body.

Im not sure how other drugs affect chargers. I think it was wrong doas

and wrong drug for me.

Chantelle

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Is on them for depression/anxiety/stress issues? or is it for

something else?

I am on them from some things that happened a few yeras ago in my life, im

not sure if i would of gotten this depressedor needed them for other easons

is these things didnt happen " shrugs "

>

> is. I, her mother, finally am! I'd really love to know how common

> this

> is. Martha

>

>

>

>

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Actually most often Dylan has been calming in our lives. My husband

describes Dylan as a bit of Heaven on earth and when he comes home and plays

with Dylan he gets his own serotonin fix.

But you are right too. When the behaviors started to escalate, and he was

so in his own world it was another stressor along with Dad, Joe, and Tyler.

Kim

> he probly didtn help ti all though lol

>

>

>>

>> Martha,

>>

>> I have taken an antidepressant for the last year, although I must say it

>> was

>> not my CHARGEr that drove me to it.

>>

>> Kim

>>

>>

>>

>>

>>> is. I, her mother, finally am! I'd really love to know how common

>> this

>>> is. Martha

>>>

>>>

>>>

>>>

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Chantelle,

Do you think part of the low energy could still be caused by depression (the

chemicals still being out of whack)?

Kim

> Ive been on paxil but missing a doese is really bad for me. I missed

> one dose and i tried to kill myself cause i felt i couldnt deal with

> an issue that even now without meds i could have delt with a little

> better. Mind you there were bigger stressors on me. I was still living

> at home with mom. Still, i dont think trying to OD really would have

> helped any.

>

> I think maby there is a chemical imbalance for sure, but im not sure

> if going on paxil would be a good idea for me. I was on a very high

> does. The other problem i had is I had no energy and ive never been

> able to get my strength back since i was on paxil. I think the combo

> of missing a doase and OD did cause a little bit of havoc with my

> body.

>

> Im not sure how other drugs affect chargers. I think it was wrong doas

> and wrong drug for me.

>

> Chantelle

>

>

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

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I have been taking an antidepressant for over a year--ran our end of

november--and waiting for script to be filled now--we have to mail it

in--and I never fot around to it. I miss it and know there are days I

really need it--mine is also a pms helper. will be lgad to be more even in

my moods and feelings.

Re: Re: drug withdrawal -

> Martha,

>

> I have taken an antidepressant for the last year, although I must say it

> was

> not my CHARGEr that drove me to it.

>

> Kim

>

>

>

>

>> is. I, her mother, finally am! I'd really love to know how common

>> this

>> is. Martha

>>

>>

>>

>>

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Its quite possible i suppose. All i know is Paxil actualy made it

worse. Maby that was just the wrong drug for me. I remember when i

was on it, id sleep for 18 hours straight.

Chantelle

>

> > Ive been on paxil but missing a doese is really bad for me. I

missed

> > one dose and i tried to kill myself cause i felt i couldnt deal

with

> > an issue that even now without meds i could have delt with a

little

> > better. Mind you there were bigger stressors on me. I was still

living

> > at home with mom. Still, i dont think trying to OD really would

have

> > helped any.

> >

> > I think maby there is a chemical imbalance for sure, but im not

sure

> > if going on paxil would be a good idea for me. I was on a very

high

> > does. The other problem i had is I had no energy and ive never

been

> > able to get my strength back since i was on paxil. I think the

combo

> > of missing a doase and OD did cause a little bit of havoc with my

> > body.

> >

> > Im not sure how other drugs affect chargers. I think it was

wrong doas

> > and wrong drug for me.

> >

> > Chantelle

> >

> >

> >

> >

> >

> >

> > Membership of this email support groups does not constitute

membership in the

> > CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > For information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@c... or visit

> > the web site at http://www.chargesyndrome.org - for CHARGE

Syndrome Canada

> > information and membership, please visit

http://www.chargesyndrome.ca or email

> > info@c... .

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be

available at

> > www.chargesyndrome.org or by calling 1-.

> >

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I wonder if the Paxil is the reason, or part of it, that sleeps so much

now. Gets up most nights but then wants to sleep lots. Boredom and

depression probably don't help. You've given me something to think

about. Martha

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Hmmmm - See your doctor and then endo and if nothing shows up, then you can

look elsewhere. Hormones, diet, stress everything impacts the availability

and balance of neurotransmitters. Kim

> Its quite possible i suppose. All i know is Paxil actualy made it

> worse. Maby that was just the wrong drug for me. I remember when i

> was on it, id sleep for 18 hours straight.

>

> Chantelle

>

>

>

>

>>

>>> Ive been on paxil but missing a doese is really bad for me. I

> missed

>>> one dose and i tried to kill myself cause i felt i couldnt deal

> with

>>> an issue that even now without meds i could have delt with a

> little

>>> better. Mind you there were bigger stressors on me. I was still

> living

>>> at home with mom. Still, i dont think trying to OD really would

> have

>>> helped any.

>>>

>>> I think maby there is a chemical imbalance for sure, but im not

> sure

>>> if going on paxil would be a good idea for me. I was on a very

> high

>>> does. The other problem i had is I had no energy and ive never

> been

>>> able to get my strength back since i was on paxil. I think the

> combo

>>> of missing a doase and OD did cause a little bit of havoc with my

>>> body.

>>>

>>> Im not sure how other drugs affect chargers. I think it was

> wrong doas

>>> and wrong drug for me.

>>>

>>> Chantelle

>>>

>>>

>>>

>>>

>>>

>>>

>>> Membership of this email support groups does not constitute

> membership in the

>>> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

>>> For information about the CHARGE Syndrome

>>> Foundation or to become a member (and get the newsletter),

>>> please contact marion@c... or visit

>>> the web site at http://www.chargesyndrome.org - for CHARGE

> Syndrome Canada

>>> information and membership, please visit

> http://www.chargesyndrome.ca or email

>>> info@c... .

>>> 8th International

>>> CHARGE Syndrome Conference, July, 2007. Information will be

> available at

>>> www.chargesyndrome.org or by calling 1-.

>>>

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