New Member

[Guest guest]

Hi ,

My daughter, Jenna, was dx with PMG about 7 weeks ago. She is

taking Tegretol for her seizures and it is working great! I haven't noticed any

" activity " for about 2 weeks now. She is developing slowly but making a lot of

progress lately. She also had macrocephaley and is having more extensive tests

done in the chromosome area. Please, tell us a bit about you and your son.

~, , Alina, & Jenna (~11 months with PMG)

Re: File - Request.txt

Date: Sat, 14 Jun 2003 15:24:21 +0000

hello,

I found your site by searching on the keyword polymicrogyria, I have a four

year old son with this condition and would like to find out more about it in

laymans terms.

Thankyou sarah

[Guest guest]

Dear ,

hi there, I'm fiona from over in Scotland.

I know exactly how you feel. In Jan 2002 we had a little girl Caitlin, it was a

very bad labour with problems right from the start, eventually I had an em c/sec

where they discovered the 12 hours of strong contractions were a wasted of time.

The cord was round her neck twice and she couldn't move down any. She was very

quiet & subdued but feeding so we weren't too worried but luckily a nurse was

keeping an eye on her, after about 12 hours she put all the little niggles she

had to the doctor. They took her to special care and by the time they got me

organised and took me down to see her i was met with the statement she has had

another 5 seizures! She was nearly 3 weeks old before she was diagnosed and

like having an enormous amount of seizure, actual recorded were like 89

in a 24hr period. At that point the docs decided she would be better at home

where we could enjoy the short time the expected her to live. With the constant

seizures they felt her body wouldn't cope for

any longer than 3-4 months, by the time we took her home within 48hours the

gaps between seizures reduced, and so our life with Caitlin began. With an

enormous personality and courage our baby never failed to surprise us and

although there was many a very scarey moment we adored her. We had to put her

through an operation in march 2003 at which point the didn't think we would get

her back out theatre alive but she was so ill we had to take the risk. For 6

weeks after we got her back home she responded in a a way we could never imagine

then she got a dirty eye & seemed a bit off colour. Our consultant decided iv

antibiotcs would be best but sadly she passed away very peacefully on the 26th

may 2003. Like you the doctors thought it was a cruel fluke so after talking to

doctors and a lot of soul searching we had another baby. Sofie was born on the

4th Aug, 04 and by 7 days old diagnosed pmg. Although she is more responsive

and mobile than Caitlin her seizures are harder to keep

in some kind of control. Both my girls like have BPP so we don't know

how long Sofie will be with us but it is now decided with us it is genetic so we

would never take the risk again. The pain of losing Caitlin like you is still

there every day but now I find visiting her grave even more painful as I look at

her name on the stone and am faced with putting her sister on it too. Listening

to the other parents in this group with kids older I can only hope for our

future feeling very selfish watching her go through seizures every day and

taking comfort in the only thing i can do cuddle her....

Take care

Fiona

wrote:

Hi there. I just joined the group today, and not quite sure what to expect.

I guess I'm looking for an outlet and more importantly information about

Polymicrogyria. Just to let you know where I come from, on September 24,

1998 our first son was born. When he was 7 weeks old his seizures

started very unexpectedly. You all know, we were scared, devastated, angry,

etc. After 3 weeks and a transfer to UCLA, our son was diagnosed with

Bilateral Perisylvian Polymicrogyria. Our son passed away on February 25th

1999. I'm haunted with his death every day, many times. I just want as

much information as possible to understand what was wrong with him.

Since then, we have two more children, both healthy. Our oldest now, we

adopted our youngest we took a leap of faith - he's 8 months old.

I feel like I let down. We couldn't get information... our doctors

tried all they could. It's " so rare " they said. " A fluke... " . I couldn't

save my son.

If you want more about , visit him on this web page...

http://www.kidsepilepsy.com/

Please look him up by name, Ceccato. Thanks for listening. Wishing

you all the best. -

[Guest guest]

Silly me - just reading through the group's synopsis and other posts I

was reminded that you guys already know that BPVH and Pachy are brain

malformations - sorry! (-: Casey

[Guest guest]

Welcome to the group. You sound like you are very well

informed and are in contact with all the key people in

this field. My son was originally diagnosed with pachy

and then, after review by Dr. Barkovich and Dr.

Dobyns,the dx changed to unilateral PMG. I think you

are smart to not medicate if the seizures are mild. I

think we were too quick to medicate and I believe the

meds worsened me son's condition. If I had it to do

over again I would not have started AED's. As far as

non-medication treatment for seizures, there is the

Atkins (modified) diet and the Ketogenic diet. I have

read that both of these are very effective. Also, we

are trying some vitamin/mineral treatments, carnaware,

B6, and omega 3. Seizure triggers for my son are

definitely sleep deprivation and over-excitement. We

have had good success in avoiding seizures by making

sure he gets enough sleep and doesn't get over

excited. Sometimes its hard to accomplish though.

I have not heard of CMV causing pachy. However, I have

heard of it causing PMG. I am curious as to what Dr.

Dobyns dx will be. Please let us know when he has a

chance to review the films.

-Steve

--- quirksmom wrote:

> Hi, My name is Casey and I am the mother of two

> little girls. My 5

> year old daughter Maggie had her first MRI over the

> summer and was

> diagnosed with bilateral peri-ventricular

> heterotopia with

> pachygyria - two types of brain malformation due to

> neuronal

> migration failures in the first trimester. All

> genetic testing to

> date has not uncovered anything genetic. I worked

> with children

> while pregnant and was sick (chest congestion, cold)

> around week 11

> so there is some speculation that I was exposed to

> CMV - a known

> cause to one or both of these malformations.

>

> I really love this site, and although Maggie does

> not have

> polymicrogyria, I find all of your thoughts and

> support helpful. It

> also sounds like she deals with similar things as

> your cuties!

>

> Background on Maggie:

> We started noticing delays in her skills as she

> reached her first

> birthday. She was a very easy and happy baby - too

> easy in fact and

> now we know why. She did not transition to sit

> until 13 months,

> walk until 20 months, and really did not crawl much.

> Her speech

> developed fine until around 15 months then it's been

> delayed since.

> She is globally developmentally delayed, has sensory

> processing

> dysfunction, motor planning issues, low(er) tone,

> and seizures. She

> also is always a bit constipated. She just started

> in a regular ed

> kindergarten classroom with OT, PT, and Speech

> support. She's

> behind all of her peers, operates around age 3-4 for

> social, speech,

> and gross motor, around 4 for fine motor. She had

> Early

> Intervention from age 1-3, integrated preschool with

> OT, PT, and ST

> from 3-5, and now kindergarten.

>

> Although we've had a lot of developmental,

> neurological, and genetic

> testing, we did not decide on the MRI until we

> suspected that she

> was having seizures. As far as we know, she has them

> only in the

> morning, within an hour or so of waking, and they

> are mild as she

> spaces out, and has very slight twitches in her arms

> and legs. They

> can last from 3-9 minutes or so. She returns to

> herself immediately

> afterwards and does not lose bowel or bladder. She

> can have them 2

> days in a row, or a few to several weeks apart. We

> also realize that

> since they are pretty minor, and she's not in our

> view every minute,

> that we may not be witnessing all of them. We tried

> Keppra for 2

> weeks over the summer, but we were so freaked out by

> the side

> effects that we weaned her off. Our neurologist then

> suggested

> Trileptal but we declined. Our neurologist had said

> that he was

> of " two minds " about treating her with meds anyways

> so was in

> complete agreement to stop meds at this time.

>

> Since I'm new to this group I spent some time

> reading the

> posts. Although I read through a bunch, I did not

> see much

> information on seizure triggers and non-medication

> treatment of

> seizures.

>

> I think I'm being overly optimistic in thinking that

> with a good

> night's sleep, decreased physical activity in the

> evenings,

> maintenance of blood sugar, and other lifestyle

> changes, that I can

> eleviate or reduce the frequency she currently has,

> and help them

> from getting worse in the future.

>

> I wanted to add that Maggie is also followed by Dr.

> Walsh's Brain

> Clinic at Children's Hosp. in Boston and they seem

> great. I am also

> going to send her MRI to Dr. Dobyn's just for

> another look and also

> because I know he studies this stuff.

>

> Thanks for being there. I hope I can be as much

> help as you are to

> me. Casey

> We live in Northeastern Massachusetts, My husband is

> , my 4 year

> old daughter is Emma, and we have Jake the dog. I

> am also an

> occupational therapist working part-time with

> children and adults

> with developmental disabilities, mental retardation,

> autism, PDD,

> sensory disorders, swallowing disorders, etc.

>

>

>

>

>

>

__________________________________

Yahoo! Music Unlimited

Access over 1 million songs. Try it free.

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[Guest guest]

Hello Casey,

I have a question for you. My son Mason has polymicrogyria and has

seizures. He just started kepra and you said you daughter had some

kind of weird side affects. I was wondering what they are. My son

seems to be worn out and overly tired. It is reducing the seizures.

But he currently isn't holding his head up and he's 9months. He was

starting to try to hold it up and bear a little weight in his arms

but since he's started this medicine he has been extremely floppy

which I'm assuming is due to the sleepiness. Are these similiar

side affects that your daughter had? If you can be of any help let

me know.

Thanks!

Chrissy

>

> Hi, My name is Casey and I am the mother of two little girls. My 5

> year old daughter Maggie had her first MRI over the summer and was

> diagnosed with bilateral peri-ventricular heterotopia with

> pachygyria - two types of brain malformation due to neuronal

> migration failures in the first trimester. All genetic testing to

> date has not uncovered anything genetic. I worked with children

> while pregnant and was sick (chest congestion, cold) around week

11

> so there is some speculation that I was exposed to CMV - a known

> cause to one or both of these malformations.

>

> I really love this site, and although Maggie does not have

> polymicrogyria, I find all of your thoughts and support helpful.

It

> also sounds like she deals with similar things as your cuties!

>

> Background on Maggie:

> We started noticing delays in her skills as she reached her first

> birthday. She was a very easy and happy baby - too easy in fact

and

> now we know why. She did not transition to sit until 13 months,

> walk until 20 months, and really did not crawl much. Her speech

> developed fine until around 15 months then it's been delayed

since.

> She is globally developmentally delayed, has sensory processing

> dysfunction, motor planning issues, low(er) tone, and seizures.

She

> also is always a bit constipated. She just started in a regular

ed

> kindergarten classroom with OT, PT, and Speech support. She's

> behind all of her peers, operates around age 3-4 for social,

speech,

> and gross motor, around 4 for fine motor. She had Early

> Intervention from age 1-3, integrated preschool with OT, PT, and

ST

> from 3-5, and now kindergarten.

>

> Although we've had a lot of developmental, neurological, and

genetic

> testing, we did not decide on the MRI until we suspected that she

> was having seizures. As far as we know, she has them only in the

> morning, within an hour or so of waking, and they are mild as she

> spaces out, and has very slight twitches in her arms and legs.

They

> can last from 3-9 minutes or so. She returns to herself

immediately

> afterwards and does not lose bowel or bladder. She can have them

2

> days in a row, or a few to several weeks apart. We also realize

that

> since they are pretty minor, and she's not in our view every

minute,

> that we may not be witnessing all of them. We tried Keppra for 2

> weeks over the summer, but we were so freaked out by the side

> effects that we weaned her off. Our neurologist then suggested

> Trileptal but we declined. Our neurologist had said that he was

> of " two minds " about treating her with meds anyways so was in

> complete agreement to stop meds at this time.

>

> Since I'm new to this group I spent some time reading the

> posts. Although I read through a bunch, I did not see much

> information on seizure triggers and non-medication treatment of

> seizures.

>

> I think I'm being overly optimistic in thinking that with a good

> night's sleep, decreased physical activity in the evenings,

> maintenance of blood sugar, and other lifestyle changes, that I

can

> eleviate or reduce the frequency she currently has, and help them

> from getting worse in the future.

>

> I wanted to add that Maggie is also followed by Dr. Walsh's Brain

> Clinic at Children's Hosp. in Boston and they seem great. I am

also

> going to send her MRI to Dr. Dobyn's just for another look and

also

> because I know he studies this stuff.

>

> Thanks for being there. I hope I can be as much help as you are

to

> me. Casey

> We live in Northeastern Massachusetts, My husband is , my 4

year

> old daughter is Emma, and we have Jake the dog. I am also an

> occupational therapist working part-time with children and adults

> with developmental disabilities, mental retardation, autism, PDD,

> sensory disorders, swallowing disorders, etc.

>

[Guest guest]

> " you daughter had some kind of weird side affects. I was wondering

what they are. My son seems to be worn out and overly tired.

> >

Chrissy, Maggie had never been on any meds before and we only gave

the Keppra two weeks, which in itself may have been the problem. My

husband and I also second guessed ourselves a lot through the two

weeks, we often asked ourselves and each other " Is this behavior a

side effect of the Keppra, or just her, or just a phase she was

going through? " I'm not sure if we have/had definitive answers to

that question though. In the end we just forced ourselves to use

our gut feelings and instincts and took her off it. What we saw or

thought we saw was an increase in lethargy, irritability, and

aggression (all of which was way outside the norm for her). She had

one of her regular seizures while on the Keppra, and during the

weaning period we saw 2-3 more intense seizures than she's ever had

and also 2-3 in two weeks is way more than usual for her.

Since she has what we think/hope are infrequent and mild seizures,

we decided to go off the med. Our neuro still feel that she

may be having bengign rolandic seizures (as this is what we thought

previous to the MRI that showed the malformations.) Even after the

MRI, he still thought that they be the benign kind. It was the

Walsh Brain Clinic at Boston Children's that said you cannot have

benign rolandic seziures with an abnormally formed brain and that

she needed to go on meds.

So we have some days that we torment ourselves about her not being

on meds, and some days it's further back in our minds. Obviosly any

sezuire day brings greatly heightened anxiety.

I wish I could be of more help with your little guy. I'm not sure

Maggie's experience at age 5 can help shed light on Mason.

(-: Casey

[Guest guest]

Welcome to the list, len!

>

> Hi everyone,

>

> I just joined the list, and I had my first raw milk ever, a

couple of days ago. I live in a state where finding raw dairy is

difficult, so I had to buy it mail-order.

> I'm hoping to be able to learn to make yogurt and butter, and

all that. I'm glad to be able to to talk to others on this list

about their experiences.

>

> len

>

> __________________________________________________

>

[Guest guest]

Hi, My name is Kelley Sasur and I live in MA. I have recently been enlightened to the wonders of raw milk from a friend. I have been purchasing the milk for the past 2 weeks and am thrilled with the quality and taste. I have found that once it has soured it makes terrific pancakes! I have a 4 month old girl at home and while I breast feed I have returened to work 2 days a week; I do not pump enough milk to sustain her those 2 days. I had previously had enough milk stock piled but now have gone to commercial formula- but wait- before you all groan!! I am planning on making a home-made formula as posted in the Nourishing Traditions book by Sally Fallon. I am interested in knowing if there is a closer dairy to me

(right now about 30 min. drive - but worth it). I can be emailed at mork08@... and am looking foward to learing more about the benefits of raw milk!! Yahoo! DSL Something to write home about. Just $16.99/mo. or less

Yahoo! Shopping Find Great Deals on Holiday Gifts at Yahoo! Shopping

[Guest guest]

Hi..go to http://www.hoofnet.com/uhldi to see my stallion. All

other pics are on my puter and I don't know how to post them.

Shires are just plain wonderful. Even my stallion is gentle. I'm

not breeding as much as I used to. Horses and I are getting older!

May I ask what WAPF is? I am listed under the raw milk site.

-- In RawDairy , " Tinybabe " wrote:

>

> It's not hard at all to drum up business. There's the WAPF that

you can tap

> into and they will spread the word. Your one customer will also

spread the

> word to her/his friends that like raw dairy.

>

> I also supplement by selling eggs.

>

> I absolutely LOVE the Shire. Do you have pictures. I will

probably never

> be able to get one, but I sure would love seeing them. They are

positively

> AWESOME!!!

>

> K.C.

>

> New Member

>

>

> > Hi..I am Marjorie Dickson. I raise a few cattle and breed the

Beautiful

> > Shire Horse.

> >

> > I currently milk an Ayrshire cow..thought my Guernsey was due

soon, but

> > have decided she may be to old to breed.

> >

> > We are interested in making some spare $$ since we are retired.

Wondering

> > what all of you do? I live rurally so don't know if anyone will

come by

> > to buy. There is one customer but building a clientelle in the

DON'T BUY

> > RAW MILK society might be hard.

> >

> > Glad to be here and hope to enjoy this group.

> >

> >

> >

> > _____________________________________________________________

> > Netscape. just the net you need

> >

> >

> >

> >

> > PLEASE BE KIND AND TRIM YOUR POSTS WHEN REPLYING!

> > Visit our Raw Dairy Files for a wealth of information!

> > http://groups.yahoo.com/group/RawDairy/files/

> >

> > Archive search: http://onibasu.com

> >

> >

> >

[Guest guest]

>

>

> Hi..go to http://www.hoofnet.com/uhldi to see my stallion. All

> other pics are on my puter and I don't know how to post them.

> Shires are just plain wonderful. Even my stallion is gentle. I'm

> not breeding as much as I used to. Horses and I are getting older!

>

> May I ask what WAPF is? I am listed under the raw milk site.

My dad has about 20 Shires. He sure likes them. He gives sleigh

rides and spreads manure with them.

Cheyenne

[Guest guest]

Hi Cheyenne

I've never had 20 Shires. The most I ever had was 13. Where do you

live. I used to talk to a Cheyenne that lives in Oklahoma. Would

that be you? If not, where are you please?

> >

> >

> > Hi..go to http://www.hoofnet.com/uhldi to see my stallion. All

> > other pics are on my puter and I don't know how to post them.

> > Shires are just plain wonderful. Even my stallion is gentle. I'm

> > not breeding as much as I used to. Horses and I are getting older!

> >

> > May I ask what WAPF is? I am listed under the raw milk site.

>

>

> My dad has about 20 Shires. He sure likes them. He gives sleigh

> rides and spreads manure with them.

>

> Cheyenne

>

[Guest guest]

He is just gorgeous. Love the movement pic. Really something to behold.

I'm totally envious.

K.C.

New Member

>>

>>

>> > Hi..I am Marjorie Dickson. I raise a few cattle and breed the

> Beautiful

>> > Shire Horse.

>> >

>> > I currently milk an Ayrshire cow..thought my Guernsey was due

> soon, but

>> > have decided she may be to old to breed.

>> >

>> > We are interested in making some spare $$ since we are retired.

> Wondering

>> > what all of you do? I live rurally so don't know if anyone will

> come by

>> > to buy. There is one customer but building a clientelle in the

> DON'T BUY

>> > RAW MILK society might be hard.

>> >

>> > Glad to be here and hope to enjoy this group.

>> >

>> >

>> >

>> > _____________________________________________________________

>> > Netscape. just the net you need

>> >

>> >

>> >

>> >

>> > PLEASE BE KIND AND TRIM YOUR POSTS WHEN REPLYING!

>> > Visit our Raw Dairy Files for a wealth of information!

>> > http://groups.yahoo.com/group/RawDairy/files/

>> >

>> > Archive search: http://onibasu.com

>> >

>> >

>> >

[Guest guest]

Weston A. Price Foundation. Check out their website (which I'm sure someone

can give you or you can put it into a search engine). There's tons of

information on everything from how bad soy is for you to how good all kinds

of other things are for you, including raw milk.

K.C.

Re: New Member

>

>>

>>

>> Hi..go to http://www.hoofnet.com/uhldi to see my stallion. All

>> other pics are on my puter and I don't know how to post them.

>> Shires are just plain wonderful. Even my stallion is gentle. I'm

>> not breeding as much as I used to. Horses and I are getting older!

>>

>> May I ask what WAPF is? I am listed under the raw milk site.

>

>

> My dad has about 20 Shires. He sure likes them. He gives sleigh

> rides and spreads manure with them.

>

> Cheyenne

>

>

>

>

>

> PLEASE BE KIND AND TRIM YOUR POSTS WHEN REPLYING!

> Visit our Raw Dairy Files for a wealth of information!

> http://groups.yahoo.com/group/RawDairy/files/

>

> Archive search: http://onibasu.com

>

>

>

[Guest guest]

Thanks a lot ! This migh be very important information.

I found this text in Wikipedia about Wellbutrin (also known as

bupropion). The content of Wikipedia articles can be disputed though.

SEXUAL DYSFUNCTION

According to a survey, bupropion is the drug of choice among

psychiatrists for the treatment of SSRI-induced sexual dysfunction,

although it is not an FDA-approved indication. 36 percent of

responding psychiatrists preferred switching patients with

SSRI-induced sexual dysfunction to bupropion; however, 43 percent

favored the augmentation of the current medication with bupropion.[24]

There are studies demonstrating the efficacy of both approaches;

improvement of the desire and orgasm components of sexual function

were the most often noted. For the augmentation approach, the addition

of at least 200 mg/day of bupropion to the SSRI regimen may be

necessary to achieve an improvement since the addition of 150 mg/day

of bupropion did not produce a statistically significant difference

from placebo.[25][26][27][28][29][30]

Several studies have indicated that bupropion also relieves sexual

dysfunction in people who do not have depression. In a mixed-gender

double-blind study, 63% of subjects on a 12-week course of bupropion

rated their condition as improved or much improved, versus 3% of

subjects on placebo.[31] Two studies, one of which was

placebo-controlled, demonstrated the efficacy of bupropion for women

with hypoactive sexual desire,[32][33] resulting in significant

improvement of arousal, orgasm and overall satisfaction. Bupropion

also showed promise as a treatment for sexual dysfunction caused by

chemotherapy for breast cancer[34] and for orgasmic dysfunction.[35]

As with the treatment of SSRI-induced sexual disorder, a higher dose

of bupropion (300 mg) may be necessary: a randomized study employing a

lower dose (150 mg) failed to find a significant difference between

bupropion, sexual therapy or combined treatment.[36] Bupropion does

not affect any measures of sexual functioning in healthy men.[37]

http://en.wikipedia.org/wiki/Bupropion

>

> Hi everyone,

>

> I'm relatively new to the group, and it's my wife who suffers from

> PSSD, but I thought I would briefly share her story in case it would

> be helpful to anyone.

>

> My wife was first prescribed Zoloft for anxiety and depression in the

> spring of 2004. She was on that medication for about 6 months before

> briefly switching to paxil. (She complained to her doctor about

> Zoloft's sexual side effects and feelings of aggression, so he

> prescribed her Paxil--moron). After less than than a month on Paxil,

> she switched to Serzone (because she had still been experiencing very

> low libido, muted orgasms, and aggressive tendancies). She was only

> on Serzone for a couple weeks until we found out she was pregnant.

>

> Over the next nine months she didn't take any medications, but her

> low libido and trouble with orgasms did not improve (though her

> aggression went away). During this time her anxiety and depression

> lifted somewhat. After having our daughter, her depression hit again,

> and she was prescribed lexapro. She only used this drug for a week or

> so because it made her depression worse and she felt violent.

>

> A different doctor then prescribed her Cymbalta, which was awful for

> all of the side effects she had previously experienced on other

> drugs. Then she went back on Serzone to see if her sexual problems

> would clear up. They didn't. Finally after two years on varios drugs,

> she went on Wellbutrin. At first she did't see much improvement for

> libido and orgasms, but her dose gradually increased to 400mg. per

> day. The results were amazing. She regained her sex drive, even past

> the level it was before she started taking any anti-depressents. She

> did see some increase in anxiety and irratibility, but continued with

> the drug for almost a year (at which point she wanted to be done with

> drugs).

>

> After she went off Wellbutrin (which was not cold-turkey, but still

> much too fast over a week or so), her libido faded and she began to

> have trouble with orgasms again. We waited things out for almost

> year, and if anything, her libido and trouble with weak orgasms

> worsened. Remarkably, her depression was much improved during this

> time, but partially because she felt less passion, emotion overall).

> Discovering that PSSD is a real condition affecting a lot of people,

> and not seeing an end in sight (sexual problems were starting to

> effect our marriage), she decided to go back on Wellbutrin. She

> increased her dosage very slowly this time, workign up to 400mg over

> about 6 weeks. She saw no benefit until she got up to 400mg (which

> was recently) and her sex drive has returned to a very healthy level.

> Her orgasms have also improved, though she says they are still not

> quite back to normal. She's experienced a slight increase in

> irritability, but not nearly enough to want to quit the drug.

>

> Now we're just hoping that the effects do not wear off, and thinking

> she may stay on this indefinately unless someone comes up with

> another treatment for PSSD that could be effective for her. One of

> the problems, obviously is that we do not know which drug(s) caused

> her PSSD in the first place (though I suspect the zoloft). I just

> thought I would share this, because I read that many people have

> no success on Wellbutrin, but often don't stay on the drug for long

> or reach a very high dose. My wife would not have experienced any

> benefit either if not for waiting it out and increasing her dosage.

>

>

>

[Guest guest]

http://en.wikipedia.org/wiki/PSSD

" Post-SSRI sexual dysfunction (PSSD)[1] is an iatrogenic type of sexual

dysfunction caused directly by the previous use of selective serotonin

reuptake inhibitor (SSRI) antidepressants. While apparently uncommon,

it can last for months, years, or sometimes indefinitely after the

discontinuation of SSRIs. It may represent a specific subtype of SSRI

discontinuation syndrome.

Symptoms

One or more of the following sexual symptoms persist or begin after the

discontinuation of SSRIs.

Decreased or absent libido

Impotence or reduced vaginal lubrication

Difficulty initiating or maintaining an erection or becoming aroused

Persistent sexual arousal syndrome despite absence of desire

Muted, delayed or absent orgasm (anorgasmia)

Reduced or no experience of pleasure during orgasm (ejaculatory

anhedonia)

Premature ejaculation

Weakened penile, vaginal or clitoral sensitivity

Genital anesthesia

Loss or decreased response to sexual stimuli

Reduced semen volume

Priapism "

>

> Hi Everyone,

>

> Can someone please summarize what is known about Pssd and perhaps

make

> it a permament feature of the website. Also, if the problem is

> extremely shallow orgasms have keigel exercises helped anyone on this

> site. If so, how long a period of time was it before they became

> effective? Has anyone returned to normal functioning just by waiting

> it out and if so after how long a period of time? Also, has anyone

> considered a class action lawsuit to break the back of the companies

> for doing this to people and to prevent them from doing it to anyone

> else?

>

[Guest guest]

my advice is to discontinue their use by tapering off them. most of the

people on this board have sexual dysfunction that has persisted long

after discontinuation. all ssri's carry this risk and the longer you

are on them the more likely it will be. i was prescribed paxil for

anxiety which was very very intense, but it does not even compare to

the anxiety that i now have not knowing if a more normal state of

sexuality will return. believe me when i say that my anxiety prior to

ssri use was extremely bad, in fact i was desperate for some relief.

however, knowing what i know now i would have done anything or nothing

rather than take an ssri. others on this board will attest to similar

feelings with regards this i.e. that the problems that they have now

have put them in a much worse state psychologically than before they

ever took their offending drug. no matter how desperate you feel,

anxiety or depression will pass at some point without drug

intervention, in fact there is a large body of evidence starting to

appear that suggests that these drugs are not much better than a

placebo in their effects at alleviating anxiety or depression. my

anxiety and depression is worse now than it has ever been and has been

directly caused by ssri use and nothing else. i will never ever take a

psychoactive chemical again no matter how desperate i feel. try cbt,

exercise, spending time with friends, whatever, as said before anxiety

and depression usually resolves naturally given time. ssri use could

put you in the position of most of us on this board i.e. much worse

than before. most of us here had no idea that this could happen, thats

why we took the drug. if anyone had told me that i could have sexual

dysfunction still, nearly a year and a half after coming off paxil, i

would never have taken it. like i said, most of us did not have this

knowledge so could not make an informed decision. you have been taking

these drugs for only a year and the likelihood is that no damage has

yet been done, although this is not a certainty. you have the

information, unlike us, to make your decision as to whether you want to

take the risk or not with regards continuing with the drugs. oh, and

with regards trying to get a more normal sexuality whilst taking them,

no matter what you read about gingko, buproprion etc - nothing works.

you either decide that you would rather take the drugs and have a

dissapointing sex life with the prospect of this continuing long after

discontinuation or you stop taking them and find other ways to help

your condition or simply wait until it gets better, which it will. i

know which one i would choose.

good luck

>

> I am new to this but have been taking CYMBALTA and ZYPEXA  forf the

past year and haven't had an urge or carnal thought during that time

period.  That in itself is depressing and would like to know if any one

else has taken these two drugs.  Other than discontinuing thier use

what else might help ?  Thanks.

>

[Guest guest]

i completely agree with " phon_71 "

> >

> > I am new to this but have been taking CYMBALTA and ZYPEXA� forf the

> past year and haven't had an urge or carnal thought during that time

> period.� That in itself is depressing and would like to know if any one

> else has taken these two drugs.� Other than discontinuing thier use

> what else might help ?� Thanks.

> >

>

[Guest guest]

Yeah I've been on SSRI's off and on for 7 years, which really scares me since they say the longer you are exposed to them the longer the dysfunction lasts... Looking back and knowing what I know now, I would not have taken the drugs even with the severe anxiety and depression. My quality of life is so reduced with the PSSD that that alone is causing me depression and anxiety, so really what's the point of taking the drugs? I just hope that my libido and sensation eventually come back, because right now this is hell and is impacting every aspect of my life, and putting strain on an otherwise happy marriage.

Jenn

Re: New member

i completely agree with "phon_71"> >> > I am new to this but have been taking CYMBALTA and ZYPEXA� forf the > past year and haven't had an urge or carnal thought during that time > period.� That in itself is depressing and would like to know if any one > else has taken these two drugs.� Other than discontinuing thier use > what else might help ?� Thanks.> >>

[Guest guest]

Jenn,

When was the last time you took SSRIs?

Vornan

> > >

> > > I am new to this but have been taking CYMBALTA and ZYPEXA�

forf the

> > past year and haven't had an urge or carnal thought during that

time

> > period.� That in itself is depressing and would like to know

if any one

> > else has taken these two drugs.� Other than discontinuing

thier use

> > what else might help ?� Thanks.

> > >

> >

>

[Guest guest]

It's been about a year now.

Jenn

Re: New member

Jenn,When was the last time you took SSRIs?Vornan> > >> > > I am new to this but have been taking CYMBALTA and ZYPEXA� forf the > > past year and haven't had an urge or carnal thought during that time > > period.� That in itself is depressing and would like to know if any one > > else has taken these two drugs.� Other than discontinuing thier use > > what else might help ?� Thanks.> > >> >>

[Guest guest]

I wish I had an answer for you. I feel bad for your

situation. I hope you find a resolution soon. I can’t imagine what it would

be like to be 21 and have ED problems. Best wishes for a speedy recovery.

Steve

From:

SSRIsex [mailto:SSRIsex ] On Behalf Of selifrit

Sent: Wednesday, December 24, 2008 5:44 PM

To: SSRIsex

Subject: new member

Hi I'm male 21, and took fluoxetine for 11

days, @ 5 weeks from

discontinuation I persist with sexual dysfunction, how long should I

wait to see if I recover?

[Guest guest]

I'm positive I will get better, thanks steve.

BTW, just how old are you?

[Guest guest]

it takes 7 weeks for Prozac to be completely out of your system. I remember in 2000 I was on prozac for about 6 months and desire was not restore for 4 weeks. I checked with the phyciatrist and he said 7 weeks. He was right. Hope it is the same for you.

Adil

Subject: new memberTo: SSRIsex Date: Wednesday, December 24, 2008, 5:43 PM

Hi I'm male 21, and took fluoxetine for 11 days, @ 5 weeks from discontinuation I persist with sexual dysfunction, how long should I wait to see if I recover?

[Guest guest]

Thank you to all who have respondeded to my question. I am trying to, slowly, ween myself off of these drugs. I get severe head aches nad insomnia every day. My job has put me on disability, another disgrass, and has kept me hanging for nealy two months on a decision to allow me more time to detoxify. Sex is just one of the many down falls taking drugs perscibed by doctors in bed with drug companies. In years past doctors did not perscribe every med in the book they actually tried to understand the problem and work it out.

I am also taking three other drugs all of which are bad enough but they too contribute to my condition. I have contemplated my options many times and have no where to turn for hope. I'd like to laugh again, see a day that is not in black and enjoy a womens touch. I have tried every trick in the book to get my mind excited enough to have sex to no avail a friend offered to have her and another women try, I wasn't interested. I feel I am in a box that is getting smaller and smaller it will squeeze me untill the point I have no other option. I want me back. Thank you for a forum of help.

Subject: Re: New memberTo: SSRIsex Date: Monday, December 22, 2008, 2:16 PM

Jenn,When was the last time you took SSRIs?Vornan> > >> > > I am new to this but have been taking CYMBALTA and ZYPEXA� forf the > > past year and haven't had an urge or carnal thought during that time > > period.� That in itself is depressing and would like to know if any one > > else has taken these two drugs.� Other than discontinuing thier use > > what else might help ?� Thanks.> > >> >>

[Guest guest]

Just wait. Don't take any more drugs. Get exercise every day.

I'll tell you something. In 2004, I took zoloft for six days.

I had complete loss of libido. In time I recovered. But it took a long

time. Hang in there. Also, I know this seems counter intuitive, but

now is a good time to try and pick up the hottest woman you can find.

It will help reactivate the part of the brain for sexual function.

>

> Hi I'm male 21, and took fluoxetine for 11 days, @ 5 weeks from

> discontinuation I persist with sexual dysfunction, how long should I

> wait to see if I recover?

>