Re: Holy smokes!

[Guest guest]

tdtclaw jotted this down:

> After reading one of the posts about Zyprexa doing bad things, I did a search

> on it. Aparently there are lawsuits pending due to undisclosed harmful, and

> even serious side effects in some cases. Wow, I had no idea about that.

> Someone please tell me the fact that I just take 2.5 mg per day, makes me a

> low risk factor!

No; even a " low " dose can cause serious damage to autistics in particular.

A 2.5mg pill of Zyprexa -- *after* I had been on it for a while -- triggered a

dangerous cardiac reaction in me, and (iirc) was already causing problems

without my realizing it. I have also had a near-fatal (cardiac-respiratory)

reaction to a very low starter dose of another neuroleptic, and less dangerous

yet similarly problematic response to a third one. (The second one I accepted

and took one dose of before I realized neuroleptics are dangerous; the third was

an anti-nausea pill that I took without realizing what it was.)

Years later, I'm currently being evaluated for a " mystery illness " that first

started appearing when I was on the Zyprexa. The doctors have tossed around a

range of possible diagnoses (MS, Lupus, etc.), but I notice that it most closely

fits the descriptions of the nastier long-term " side-effects " of drugs in the

neuroleptic class. Not sure if anybody posted it already, but the site with the

info is:

http://www.dinahm.pwp.blueyonder.co.uk/

--

M. DeGraf ~*~ http://sonic.net/mustang/moggy

" You may not be able to change the world,

but at least you can embarrass the guilty. "

-- Mitford

[Guest guest]

> No; even a " low " dose can cause serious damage to autistics in

particular.

>

> A 2.5mg pill of Zyprexa -- *after* I had been on it for a while --

triggered a dangerous cardiac reaction in me, and (iirc) was already

causing problems without my realizing it.

Did you end up getting off of neuroleptics alltogether or did you

find one that doesn't cause any problems for you? What do you take

now, if anything?

One reason I take Zyprexa is for mania (bipolar disorder), and I must

say it does help with that. Do you have any suggestions for anything

I might try so I wouldn't need the Zyprexa?

Later,

-Matt

[Guest guest]

In a message dated 12/30/04 3:26:30 PM Eastern Standard Time,

AutisticSpectrumTreeHouse writes:

Years later, I'm currently being evaluated for a " mystery illness " that

first started appearing when I was on the Zyprexa. The doctors have tossed

around a range of possible diagnoses (MS, Lupus, etc.), but I notice that it

most

closely fits the descriptions of the nastier long-term " side-effects " of

drugs in the neuroleptic class. Not sure if anybody posted it already, but the

site with the info is:

http://www.dinahm.pwp.blueyonder.co.uk/

--

M. DeGraf ~*~ http://sonic.net/mustang/moggy

" You may not be able to change the world,

but at least you can embarrass the guilty. "

-- Mitford

First. , Mitford! I haven't heard that name in years. Thanks

for a reminder.

Second, I was given Xanax once and had a " paradoxical reaction " to it (I was

bouncing off the walls). To " treat " that side effect, which , apparently

made them think I was psychotic, I was given Seroquel which gave me Malignant

Neuroleptic Syndrome. It's horrible. 20% of those hospitalized and diagnosed

die. I was an " outpatient " and crazy, they assumed, so no one would take me to

an ER. Almost died. Have some neurological problems from that too, I think.

Also, I ended up a few years ago at the Hospital of the Univ. of

Pennsylvania (very top notch) being checked out by their expert in MS. Well, I

didn't

have MS. I had side effects from being on Depakote for two years.

Am I nuts for wanting, like Matt, to be off all this crap?

I don't think so.

Shakespeare: Kill all the lawyers.

: also the psychiatrists.

They prescribe therefore they are.

[Guest guest]

In a message dated 12/30/04 3:26:30 PM Eastern Standard Time,

AutisticSpectrumTreeHouse writes:

One reason I take Zyprexa is for mania (bipolar disorder), and I must

say it does help with that. Do you have any suggestions for anything

I might try so I wouldn't need the Zyprexa?

Later,

-Matt

Beware of the bipolar label. It was the '90's fad label. It means nada if

you have Asperger's. Ask yourself this: if the situation changes and you aren't

being overwhelmed by sensory or mean people or whatever, if someone turns

quietly to you in kindness, are you still manic? I'm aware that I might seem

manic at times to others, and carried this monkey around on my back for years,

but the truth is I may be over the top, and someone can simply listen to me,

and make me feel safe, and all the mania disappears.

Also, when I took meds for bipolar, meds I didn't need because I wasn't,

they caused a lot of problems with my ability to calm myself.

Recently I'm off Wellbutrin and Paxil (slowly, under a doc's care so they

can't accuse me of being " noncompliant " . ) I cry again. I have other , shall we

say more private feelings once more (after years of flat, but cooperative

affect). I guess I'm choosing to be a human being, but am totally open to

needing to learn now that I know about my autism, how to manage life,

communication training, coping skills. Also how to educate those around me.

So, out go the drugs.

But, ouch! man, I miss my Celebrex . I hurt all over.

[Guest guest]

> Beware of the bipolar label. It was the '90's fad label. It means

nada if

> you have Asperger's.

You saying it's impossible to have both?

> Also, when I took meds for bipolar, meds I didn't need because I

wasn't

If you were not bipolar, than how would you know what mania is or

what it's like? Real mania has nothing to do with your surroundings

or your state of mind. It has nothing to do with your mood, being

calm or upset or having sensory overload. Mania is more like the

intensity and speed of your thinking. When you have it, your thoughts

race a million miles an hour with extreme intensity and there is no

way to stop it. You think everthing to death, even if what your

thinking about is a trivial little thing. With strong mania, it's

very hard to sleep no matter how tired you are, at times my mania has

been so bad I stayed up for 24 hours, or even 48 hours without

sleeping, even though I felt like crap doing it. Sensory conditions

are irrelevant. For me, Zyprexa very obviously improves my manic

state.

-Matt

[Guest guest]

He makes a good point about it being a " fad label. " It's one of the more

common misdiagnoses for those with Asperger's. I've been diagnosed as ADD,

OCD, and bi-polar. I got the bi-polar diagnosis after admitting some of my

stims to a doctor treating me for depression. I've never in my life been

anything close to what I've heard mania described as, but to somebody who

may not be an expert in ASD, things like jumping up and down, swinging,

running impulsively, etc., make them think bi-polar just because it's not

normal adult behavior.

Elayne

http://cablespeed.com/~solinox/index.htm

" Those who refuse to support and defend a state have no claim to protection

by that state. "

> -----Original Message-----

> From: tdtclaw

>

>

>

> > Beware of the bipolar label. It was the '90's fad label. It means

> nada if

> > you have Asperger's.

>

> You saying it's impossible to have both?

[Guest guest]

> I've never in my life been anything close to what I've heard mania

> described as

I have. Mania, intense highs and lows, the whole works. Go watch the

movie " Mr. " with Gere... It's a really good movie and

gives you a good idea what Bipolar is. I think a lot of people have

been misdiagnosed with it, as you say. I'm someone who has been

diagonosed with it, and do indeed have it.

-Matt

[Guest guest]

tdtclaw (Matt) jotted this down:

> Did you end up getting off of neuroleptics alltogether or did you find one

> that doesn't cause any problems for you?

I dumped the neuroleptics, won't touch them again... The reactions I had were

enough to make it clear that my body can't handle that kind of drug; they would

very likely have killed me.

> What do you take now, if anything?

I'm on variable doses of muscle relaxants to handle the spasms possibly caused

by the neuroleptics, and that helps me remain fairly calm. I also have the

anti-anxiety (generally calming) med Neurontin; I used to take that a lot, but

now only rarely touch it, as the relaxant has the same effect.

> One reason I take Zyprexa is for mania (bipolar disorder), and I must say it

> does help with that. Do you have any suggestions for anything I might try so

> I wouldn't need the Zyprexa?

I was originally put on Zyprexa for severe depression way back in 2000, but I've

never been manic, so I can't help much with that firsthand. (I have been

violent, aggressive, prone to easy meltdowns, and similar such issues, but

that's not the same. My mother has bipolar disorder among other things, so I've

seen the differences firsthand...) I don't know if sedative-type drugs like

I'm using would help you or not.

I have heard, though, of a site called http://crazymeds.org/ that has firsthand

information on all of the major medications and a good discussion forum -- you

might be able to find more information there on alternatives.

Also, there's a community on LiveJournal for people with all kinds of diagnoses

that are trying to learn to handle their conditions in ways that don't involve

psych meds, and you might get useful ideas from them (either directly if you

post, or from reading the archive):

http://livejournal.com/community/_psychmedfree_

--

DeGraf ~*~ http://sonic.net/mustang/moggy

" When they come to write the list of Great Battle Cries

Of The World, 'Erm, excuse me' won't be one of them. "

-- Terry Pratchett: 'Sourcery'

[Guest guest]

>

> I have heard, though, of a site called http://crazymeds.org/ that

has firsthand information on all of the major medications and a good

discussion forum -- you might be able to find more information there

on alternatives.

>

> Also, there's a community on LiveJournal for people with all kinds

of diagnoses that are trying to learn to handle their conditions in

ways that don't involve psych meds, and you might get useful ideas

from them

Thanks " Moggy " ... I looked at those sites, they are fairly

interesting and may have useful information.

-Matt