klonopin

[Guest guest]

I presume people try melatonin in adequate quantities, up to 30 mg a night,

before

making recourse to this kind of stuff? Magnesium is also sometimes mildly

helpful, and a

lot of people do well with 500 mg of GABA at bedtime.

I used to need 20-30 mg of melatonin at bedtime and it was wonderful. If you

wake up

after 5 hours or so 3 mg of time release melatonin added in usually fixes that

(also my

experience). I've talked to a very large number of people who tried these both

with great

success.

GABA is the natural version of things like Klonopin. It only lasts a few hours

in your body.

Some people's livers seem to turn it into glutamate (msg) so it doesn't work for

them and

makes them hyper, most do well on it.

There are a lot of other OTC things like kava kava that help.

What I've seen with klonopin (in other people) is that for many it is

wonderfully helpful, but

yes it can be addictive and a tolerance can develop in which case discontinuing

it abruptly

is a truly miserable experience as it is with many other medications. The key

here is not

to get all emotional about the drug being " bad " and somehow having moral

properties, but

simply to recognize this as a negative it does have and decide if the positives

outweigh the

negatives before using it or when deciding to continue it.

Klonopin is generally used for anxiety, panic attacks, absence seizures, and a

lot of time in

people with multiple sclerosis.

Andy

> > >

> > > I find that it calms down my overexcited brain and allows me to

> sleep. Also it actually

> > helps my cognition. I have been reducing my dosage and I am down to a

> little less than 1

> > mg at night. Is there something better to replace it? I know I am

> addicted. It stopped my

> > restless leg syndrome. I have been on it for 18 years. joyce

> >

> > Klonopin is really still the best choice for this kind of thing.

>

>

[Guest guest]

Hey Andy. I agree about your statements on Klonopin, however, I was

just going to reply to say that I got REAL depressed taking only

3 mg. of melatonin, then per Ken's wishes, I found the article at

the site below.

http://www.apollohealth.com/melatonin_and_depression.html

An excerpt:

<<Melatonin is an important nighttime hormone associated with sleep

and regeneration. However, excessive levels or daytime melatonin can

cause depressive disorders. Medical research confirms the

relationship between melatonin and mood disorders.>>

While not everyone may get a mood disorder/depression by taking

melatonin, I certainly wish I had had this info. before i tried it.

Mike C

In , " andrewhallcutler "

<AndyCutler@...> wrote:

>

> I presume people try melatonin in adequate quantities, up to 30 mg

a night, before

> making recourse to this kind of stuff? Magnesium is also sometimes

mildly helpful, and a

> lot of people do well with 500 mg of GABA at bedtime.

>

> I used to need 20-30 mg of melatonin at bedtime and it was

wonderful. If you wake up

> after 5 hours or so 3 mg of time release melatonin added in usually

fixes that (also my

> experience). I've talked to a very large number of people who

tried these both with great

> success.

>

> GABA is the natural version of things like Klonopin. It only lasts

a few hours in your body.

> Some people's livers seem to turn it into glutamate (msg) so it

doesn't work for them and

> makes them hyper, most do well on it.

>

> There are a lot of other OTC things like kava kava that help.

>

> What I've seen with klonopin (in other people) is that for many it

is wonderfully helpful, but

> yes it can be addictive and a tolerance can develop in which case

discontinuing it abruptly

> is a truly miserable experience as it is with many other

medications. The key here is not

> to get all emotional about the drug being " bad " and somehow having

moral properties, but

> simply to recognize this as a negative it does have and decide if

the positives outweigh the

> negatives before using it or when deciding to continue it.

>

> Klonopin is generally used for anxiety, panic attacks, absence

seizures, and a lot of time in

> people with multiple sclerosis.

>

> Andy

[Guest guest]

Yes, I got depressed on Melatonin too.

Gail

yakcamp22 wrote:

>

> Hey Andy. I agree about your statements on Klonopin, however, I was

> just going to reply to say that I got REAL depressed taking only

> 3 mg. of melatonin, then per Ken's wishes, I found the article at

> the site below.

>

> http://www.apollohealth.com/melatonin_and_depression.html

> <http://www.apollohealth.com/melatonin_and_depression.html>

>

> An excerpt:

>

> <<Melatonin is an important nighttime hormone associated with sleep

> and regeneration. However, excessive levels or daytime melatonin can

> cause depressive disorders. Medical research confirms the

> relationship between melatonin and mood disorders.>>

>

> While not everyone may get a mood disorder/depression by taking

> melatonin, I certainly wish I had had this info. before i tried it.

>

> Mike C

>

> In

> <mailto:%40>, " andrewhallcutler "

> <AndyCutler@...> wrote:

> >

> > I presume people try melatonin in adequate quantities, up to 30 mg

> a night, before

> > making recourse to this kind of stuff? Magnesium is also sometimes

> mildly helpful, and a

> > lot of people do well with 500 mg of GABA at bedtime.

> >

> > I used to need 20-30 mg of melatonin at bedtime and it was

> wonderful. If you wake up

> > after 5 hours or so 3 mg of time release melatonin added in usually

> fixes that (also my

> > experience). I've talked to a very large number of people who

> tried these both with great

> > success.

> >

> > GABA is the natural version of things like Klonopin. It only lasts

> a few hours in your body.

> > Some people's livers seem to turn it into glutamate (msg) so it

> doesn't work for them and

> > makes them hyper, most do well on it.

> >

> > There are a lot of other OTC things like kava kava that help.

> >

> > What I've seen with klonopin (in other people) is that for many it

> is wonderfully helpful, but

> > yes it can be addictive and a tolerance can develop in which case

> discontinuing it abruptly

> > is a truly miserable experience as it is with many other

> medications. The key here is not

> > to get all emotional about the drug being " bad " and somehow having

> moral properties, but

> > simply to recognize this as a negative it does have and decide if

> the positives outweigh the

> > negatives before using it or when deciding to continue it.

> >

> > Klonopin is generally used for anxiety, panic attacks, absence

> seizures, and a lot of time in

> > people with multiple sclerosis.

> >

> > Andy

>

>

[Guest guest]

3 mg melatonin is IMO a moderately high amt.

Med literature has used higher amounts for testing,

but the less the better, use only what works, is my view.

Melatonin is a Hormone.

If one had a melatonin *hormone deficiency*,

melatonin might be appropriate -

and that would include many people over 50, a few younger than

that, but I would suspect very few younger than 45 yrs old,

beginning at 0.5 mg and working up. 1.0-1.5 mg is often

sufficient, and can complement other hormones and supplements

for sleep when each is done in small amount (caution with

combined amounts, be conservative, experiment slowly).

Sedation can slide right over into " depression " for many people -

one of those things that's obvious after the fact :-)

Carol

willis_protocols

" yakcamp22 " <yakcamp22@...> wrote:

> I got REAL depressed taking only

> 3 mg. of melatonin, then per Ken's wishes, I found the article at

> the site below.

>

> http://www.apollohealth.com/melatonin_and_depression.html

>

> An excerpt:

>

> <<Melatonin is an important nighttime hormone associated with sleep

> and regeneration. However, excessive levels or daytime melatonin

can

> cause depressive disorders. Medical research confirms the

> relationship between melatonin and mood disorders.>>

>

> While not everyone may get a mood disorder/depression by taking

> melatonin, I certainly wish I had had this info. before i tried it.

>

> Mike C

[Guest guest]

Mike,

I also tried Melatonin when it first became popular and got VERY depressed,

it was very strange, I'd never felt like that. And that was even lower

doses than you mention. I tried it again many years later just to see what

would happen, same thing..... scary depression, I did not want to live.

Marcia/Oregon

> Hey Andy. I agree about your statements on Klonopin, however, I was

> just going to reply to say that I got REAL depressed taking only

> 3 mg. of melatonin, then per Ken's wishes, I found the article at

> the site below.

>

> http://www.apollohealth.com/melatonin_and_depression.html

>

> An excerpt:

>

> <<Melatonin is an important nighttime hormone associated with sleep

> and regeneration. However, excessive levels or daytime melatonin can

> cause depressive disorders. Medical research confirms the

> relationship between melatonin and mood disorders.>>

>

> While not everyone may get a mood disorder/depression by taking

> melatonin, I certainly wish I had had this info. before i tried it.

>

> Mike C

[Guest guest]

>

> 3 mg melatonin is IMO a moderately high amt.

It appears you aren't familiar with it and read only irrelevant (MD) literature.

> Med literature has used higher amounts for testing,

> but the less the better, use only what works, is my view.

This is true. Use what you need, no more. Up to 20 or 30 mg.

> Melatonin is a Hormone.

> If one had a melatonin *hormone deficiency*,

Interesting halfway accurate information.

It's like calling adrenaline a hormone, which it is.

Unlike what most laymen think of as 'hormones,' when you take melatonin even in

vast

quantities, it has no effect whatsoever on how much your body makes. Your body

makes

the same amount - which may or may not be enough - every day, no matter how much

or

little you take.

The most basic rule of thumb of trying anything is very simple. If it is

completely safe it

doesn't do anything. Every agent that does anything at all has some risk.

People with CFS

etc. are biochemically different from the regular population which is who most

of the

subjects in journal paper research are. If you can't accept any risk, then you

aren't going

to be able to do anything and are condemned to a lifetime of suffering.

If you CAN accept that there are risks then yes it is wise to know what they are

so as to

discontinue something if it is bad for you. WIth melatonin the key is if you

are groggy or

sleepy when you get up then your body isn't clearing it out and you are taking

too much.

For a few people this will happen at 3 mg, for most it starts at about 30 mg.

Some people find it makes the agitated or disturbed (these are mostly very

emotional

people who may have been offered mood stabilizing medication at some point by

their

doctor), and this is an obvious reason to discontinue it.

Since Melatonin IS the body's natural 'sleep hormone,' that tells your body to

sleep

naturally, you get far, far better sleep out of it than out of any other

substance.

Andy

[Guest guest]

Andy-if you want to ignore testimonials, even people like me who

got a mood disorder on a small amount without any history of

depression, that is up to you. Also, I didn't know when I took it

that it could cause a depressive state/mood disorder. Maybe it won't

be a problem for everyone, but the experimental use by people on this

list should be enough to give other members what they need to

know-if M starts to cause a problem, don't use it.

Mike C

> >

> > 3 mg melatonin is IMO a moderately high amt.

>

> It appears you aren't familiar with it and read only irrelevant

(MD) literature.

>

> > Med literature has used higher amounts for testing,

> > but the less the better, use only what works, is my view.

>

> This is true. Use what you need, no more. Up to 20 or 30 mg.

>

[Guest guest]

Mike,

As I mentioned, I had also tried melatonin many many years ago and had the

same response. Then years later I read a CFS study where patients were

commonly already too high in melatonin. So then it made sense to me. I

actually have a sizable cyst on my pineal gland (the gland that converts

serotonin to melatonin). Those cysts are not 'all that' rare actually, so

that may affect how I react to Melatonin, I dont' know, others might have a

cyst and not be aware of it, unless you had an mri for something else and it

was caught. Things are not always as they 'appear' to be I've found out

over the years.

Marcia/Oregon

Re: klonopin

> Andy-if you want to ignore testimonials, even people like me who

> got a mood disorder on a small amount without any history of

> depression, that is up to you. Also, I didn't know when I took it

> that it could cause a depressive state/mood disorder. Maybe it won't

> be a problem for everyone, but the experimental use by people on this

> list should be enough to give other members what they need to

> know-if M starts to cause a problem, don't use it.

>

> Mike C

>

>

> > >

> > > 3 mg melatonin is IMO a moderately high amt.

> >

> > It appears you aren't familiar with it and read only irrelevant

> (MD) literature.

> >

> > > Med literature has used higher amounts for testing,

> > > but the less the better, use only what works, is my view.

> >

> > This is true. Use what you need, no more. Up to 20 or 30 mg.

> >

>

>

>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

[Guest guest]

20-30 mg Melatonin is extremely high dose.

Either you have severe deficiency or a low potency product

0,05-5 mg is what is most often used by Endocrinologists. Id be happy

to see some studies where larger dosage is used though.

From wiki:

It appears to have some use against other circadian rhythm sleep

disorders, such as jet lag. It has been studied for the treatment of

cancer, immune disorders, cardiovascular diseases, depression,

seasonal affective disorder (SAD), and sexual dysfunction. A study by

Alfred J. Lewy and other researchers at Oregon Health & Science

University found that it may ameliorate SAD and circadian

misalignment,[35] but as of 2006 it is known to affect the timing of

endogenous melatonin production during long-term melatonin treatment

in rats, raising the risk that it can exacerbate both clinical

depression and SAD.

-

Also one must be aware that Melatonin often worsen adrenal conditions,

causing symptoms like headache, fatigue when standing upright and low

blood pressure.

Therefore it is adviced to address cortisol problems and start slow.

[Guest guest]

http://www.benzo.org.uk/

i know someone who developed psychosis coming off klonopin (rivotril in

uk). please think very carefully before starting this medication.

>

> Cheney still uses Klonopin.

>

>

>

[Guest guest]

Katrina and a, I am one of the people for whom Dr. Cheney prescribed

klonopin. My own experience. was becoming tolerant to the drug and

suffering withdrawals while still on it, and being physically dependent

on it, and then going through horrible withdrawal symptoms until I

discovered Helen's water titration system. Finally, I took more than a

year to withdraw from klonopin. I don't give advice to anyone about

benzos any more, other than to be very CAREFUL about them. Apparently

some people can take them and get off them with no problem. I was not

one of those people.

pjeanneus wrote:

>

> Katrina, Look for brief replies with ***

> > I do not think it's fair o make such a declarative statement on

> this list. particularly when I'm sure you're aware that Klonopin has

> been used successfully by many CFS patients over the years to relieve

> some of the most horrific symptoms we have.

> ***I do not know one cfids patient in 13 years who has recovered in

> any way on klonopin. Did it relieve symptoms? The patients I knew on

> it generally were zombies.

>

> >

> > A different matter is to post known side effects (common or rare),

> or one's own individual adverse reaction (mild or severe), as you did

> re Lyrica. That is very important information.

> ***I am not free to repost emails I have on file of other patients

> who had severe withdrawal issues with klonopin. I cannot post my own

> experience in that regard as I never was willing to risk myself and

> take it.

>

> >

> > Klonopin is a top prescribed medication by Specialists in both CFS

> and Dystonia, which I also have. I have seen scores of people's

> experiences for many many years in both populations.

> >

> > The range of results is as wide as the difference between night and

> day. I also have personal friends who have had the very best,

> dramatic success, altering their lives significnificantly in a

> positive way, and who've the most terrible nightmare experiences

> (mainly in coming off of long term and not-low doses).

> ***This was one of my points - it does relieve symptoms, but the

> risks are very serious.

>

> >

> > My own experience with Klonopin is that many years ago, with less

> knowledge about dosing, I began on a " normal " dose. I experienced

> sedation and depression. Therefore after a brief trial, I left it for

> years, never planning to go near it again.

> >

> > Due to serious concerns about progression of damage being reported

> in CFS brains, and my horrible sensory overload, (plus other patient'

> positive results), I re-visited Klonopin.

> >

> > By then I had learned I am so exquisitely sensitive to drugs, that

> at miniscule doses, I have rather immediate results, whether pro or

> con.

> >

> > At extremely low dose, (1/4 of a .5, it instantly gave me a tool

> for the horrible sensory overload. And an added one for my horrific

> muscle contractions.

> >

> > I also have an improvement in cognitive and communicative skills.

> ***The point is - when you go off it your brain is NO BETTER and may

> be worse. That is a huge risk to relieve symptoms. Hey, I would take

> it too, if I had to. I am taking 75mg of Lyrica at night, but I am

> fully aware it will cure NOTHING and is protecting NOTHING. It is

> causing ongoing damage. Like you, I cannot tolerate the nerve

> problems I now have without it. These nerve problems in my case were

> CAUSED by quinolones and perhaps a viral infection 2 years ago that

> was unrelated to cfids or Lyme, as far as we can determine.

>

> >

> > Becasue of Dr. Cheney's use of it for Neuroprotection, I began with

> the same dose at night, moving to .5 every night. When I skip it, my

> brain is again over-firing the next day.

> ****There is no documentation that it protects anything. None. It

> does help one get through the day or night.

>

> >

> > I use the 1/4 sometimes in the day time, and on ocassion a little

> more, or one other dose.

> >

> > I have never had any of the side effects on the list you posted.

> >

> > Sometimes I would like to try more becasue of brain damage concerns

> and pain in my brain.

> >

> > But I've remained at this very cautious dose for 3 reasons:

> >

> > A) My previous depression response

> >

> > My MCS response to nearly everything

> >

> > C) The horrific time that others have had in going off of it.

> >

> > I prefer to use non-chemical interventions, so whenever possible I

> take those that have worked, in addition or try new things. Blockers

> of NMDA receptors are very helpful to me, and other things.

> >

> > I always recommend that PWCs (or anyone) begin pharmaceuticals at

> far lower doses than normally prescribed. Both to accurately monitor

> and prevent negative effects, and becasue we often do not need more

> than minute doses to benefit.

> >

> > If I know someone on Klonopin who has depression, I make sure to

> tell them my experience, and watch for that myself.

> >

> > a, over the years, you have rather adamantly recommended some

> pharmaceuticals that many can not tolerate or which have caused

> serious damage to some, even your own self.

> ***The only damage I have ever had was from quinolone antibiotics

> WHICH I NEVER RECOMMENDED TO ANYONE. What I have recommended was the

> old Roadback Foundation protocol of low dose, pulsed minocyline and

> Zithromax, low dose. The risk of these antibiotics is minimal. I was

> given quinolones by a doctor who thought it was a good way to treat

> Lyme disease. I have since continuously and religiously warned all

> other patients against ever taking any quinolones for any reason.

> There is no point in taking such a dangerous antibiotic when others

> are effective and safer.

>

> >

> > I believe it's crucial, especially in such a sensitive and ill

> population, to give a fully disclosed and balanced view of treatment

> results, pro and con, stressing that individuals vary widely.

> >

> > If we cannot do that, we should stick simply to *our own*

> experience, and as fully disclosed as we are able/aware of.

> ***Let me add that my experience included 5 years of attending the

> support group in Charlotte, NC. I never say any patient of Cheney

> recover. They were generally all on Klonopin. I think this

> observation qualifies as some sort of experience along with many

> postings of horror stories from patients trying to get of Klonopin.

>

> a Carnes

>

>

[Guest guest]

Where can I find more information on Helen's water titration system?

retractap@... wrote:

> Katrina and a, I am one of the people for whom Dr. Cheney prescribed

> klonopin. My own experience. was becoming tolerant to the drug and

> suffering withdrawals while still on it, and being physically dependent

> on it, and then going through horrible withdrawal symptoms until I

> discovered Helen's water titration system. Finally, I took more than a

> year to withdraw from klonopin. I don't give advice to anyone about

> benzos any more, other than to be very CAREFUL about them. Apparently

> some people can take them and get off them with no problem. I was not

> one of those people.

>

>

>

> pjeanneus wrote:

>

>> Katrina, Look for brief replies with ***

>>

>>> I do not think it's fair o make such a declarative statement on

>>>

>> this list. particularly when I'm sure you're aware that Klonopin has

>> been used successfully by many CFS patients over the years to relieve

>> some of the most horrific symptoms we have.

>> ***I do not know one cfids patient in 13 years who has recovered in

>> any way on klonopin. Did it relieve symptoms? The patients I knew on

>> it generally were zombies.

>>

>>

>>> A different matter is to post known side effects (common or rare),

>>>

>> or one's own individual adverse reaction (mild or severe), as you did

>> re Lyrica. That is very important information.

>> ***I am not free to repost emails I have on file of other patients

>> who had severe withdrawal issues with klonopin. I cannot post my own

>> experience in that regard as I never was willing to risk myself and

>> take it.

>>

>>

>>> Klonopin is a top prescribed medication by Specialists in both CFS

>>>

>> and Dystonia, which I also have. I have seen scores of people's

>> experiences for many many years in both populations.

>>

>>> The range of results is as wide as the difference between night and

>>>

>> day. I also have personal friends who have had the very best,

>> dramatic success, altering their lives significnificantly in a

>> positive way, and who've the most terrible nightmare experiences

>> (mainly in coming off of long term and not-low doses).

>> ***This was one of my points - it does relieve symptoms, but the

>> risks are very serious.

>>

>>

>>> My own experience with Klonopin is that many years ago, with less

>>>

>> knowledge about dosing, I began on a " normal " dose. I experienced

>> sedation and depression. Therefore after a brief trial, I left it for

>> years, never planning to go near it again.

>>

>>> Due to serious concerns about progression of damage being reported

>>>

>> in CFS brains, and my horrible sensory overload, (plus other patient'

>> positive results), I re-visited Klonopin.

>>

>>> By then I had learned I am so exquisitely sensitive to drugs, that

>>>

>> at miniscule doses, I have rather immediate results, whether pro or

>> con.

>>

>>> At extremely low dose, (1/4 of a .5, it instantly gave me a tool

>>>

>> for the horrible sensory overload. And an added one for my horrific

>> muscle contractions.

>>

>>> I also have an improvement in cognitive and communicative skills.

>>>

>> ***The point is - when you go off it your brain is NO BETTER and may

>> be worse. That is a huge risk to relieve symptoms. Hey, I would take

>> it too, if I had to. I am taking 75mg of Lyrica at night, but I am

>> fully aware it will cure NOTHING and is protecting NOTHING. It is

>> causing ongoing damage. Like you, I cannot tolerate the nerve

>> problems I now have without it. These nerve problems in my case were

>> CAUSED by quinolones and perhaps a viral infection 2 years ago that

>> was unrelated to cfids or Lyme, as far as we can determine.

>>

>>

>>> Becasue of Dr. Cheney's use of it for Neuroprotection, I began with

>>>

>> the same dose at night, moving to .5 every night. When I skip it, my

>> brain is again over-firing the next day.

>> ****There is no documentation that it protects anything. None. It

>> does help one get through the day or night.

>>

>>

>>> I use the 1/4 sometimes in the day time, and on ocassion a little

>>>

>> more, or one other dose.

>>

>>> I have never had any of the side effects on the list you posted.

>>>

>>> Sometimes I would like to try more becasue of brain damage concerns

>>>

>> and pain in my brain.

>>

>>> But I've remained at this very cautious dose for 3 reasons:

>>>

>>> A) My previous depression response

>>>

>>> My MCS response to nearly everything

>>>

>>> C) The horrific time that others have had in going off of it.

>>>

>>> I prefer to use non-chemical interventions, so whenever possible I

>>>

>> take those that have worked, in addition or try new things. Blockers

>> of NMDA receptors are very helpful to me, and other things.

>>

>>> I always recommend that PWCs (or anyone) begin pharmaceuticals at

>>>

>> far lower doses than normally prescribed. Both to accurately monitor

>> and prevent negative effects, and becasue we often do not need more

>> than minute doses to benefit.

>>

>>> If I know someone on Klonopin who has depression, I make sure to

>>>

>> tell them my experience, and watch for that myself.

>>

>>> a, over the years, you have rather adamantly recommended some

>>>

>> pharmaceuticals that many can not tolerate or which have caused

>> serious damage to some, even your own self.

>> ***The only damage I have ever had was from quinolone antibiotics

>> WHICH I NEVER RECOMMENDED TO ANYONE. What I have recommended was the

>> old Roadback Foundation protocol of low dose, pulsed minocyline and

>> Zithromax, low dose. The risk of these antibiotics is minimal. I was

>> given quinolones by a doctor who thought it was a good way to treat

>> Lyme disease. I have since continuously and religiously warned all

>> other patients against ever taking any quinolones for any reason.

>> There is no point in taking such a dangerous antibiotic when others

>> are effective and safer.

>>

>>

>>> I believe it's crucial, especially in such a sensitive and ill

>>>

>> population, to give a fully disclosed and balanced view of treatment

>> results, pro and con, stressing that individuals vary widely.

>>

>>> If we cannot do that, we should stick simply to *our own*

>>>

>> experience, and as fully disclosed as we are able/aware of.

>> ***Let me add that my experience included 5 years of attending the

>> support group in Charlotte, NC. I never say any patient of Cheney

>> recover. They were generally all on Klonopin. I think this

>> observation qualifies as some sort of experience along with many

>> postings of horror stories from patients trying to get of Klonopin.

>>

>> a Carnes

>>

>>

>>

>

>

>

[Guest guest]

Tony,

I think you can find it on a Benzo patient forum or google it. The method is not

Helen's specificaly, but one she told us about.

(Sorry if I left something out...others know more specifics).

Katrina

> >

> >> Katrina, Look for brief replies with ***

> >>

> >>> I do not think it's fair o make such a declarative statement on

> >>>

> >> this list. particularly when I'm sure you're aware that Klonopin has

> >> been used successfully by many CFS patients over the years to relieve

> >> some of the most horrific symptoms we have.

> >> ***I do not know one cfids patient in 13 years who has recovered in

> >> any way on klonopin. Did it relieve symptoms? The patients I knew on

> >> it generally were zombies.

> >>

> >>

> >>> A different matter is to post known side effects (common or rare),

> >>>

> >> or one's own individual adverse reaction (mild or severe), as you did

> >> re Lyrica. That is very important information.

> >> ***I am not free to repost emails I have on file of other patients

> >> who had severe withdrawal issues with klonopin. I cannot post my own

> >> experience in that regard as I never was willing to risk myself and

> >> take it.

> >>

> >>

> >>> Klonopin is a top prescribed medication by Specialists in both CFS

> >>>

> >> and Dystonia, which I also have. I have seen scores of people's

> >> experiences for many many years in both populations.

> >>

> >>> The range of results is as wide as the difference between night and

> >>>

> >> day. I also have personal friends who have had the very best,

> >> dramatic success, altering their lives significnificantly in a

> >> positive way, and who've the most terrible nightmare experiences

> >> (mainly in coming off of long term and not-low doses).

> >> ***This was one of my points - it does relieve symptoms, but the

> >> risks are very serious.

> >>

> >>

> >>> My own experience with Klonopin is that many years ago, with less

> >>>

> >> knowledge about dosing, I began on a " normal " dose. I experienced

> >> sedation and depression. Therefore after a brief trial, I left it for

> >> years, never planning to go near it again.

> >>

> >>> Due to serious concerns about progression of damage being reported

> >>>

> >> in CFS brains, and my horrible sensory overload, (plus other patient'

> >> positive results), I re-visited Klonopin.

> >>

> >>> By then I had learned I am so exquisitely sensitive to drugs, that

> >>>

> >> at miniscule doses, I have rather immediate results, whether pro or

> >> con.

> >>

> >>> At extremely low dose, (1/4 of a .5, it instantly gave me a tool

> >>>

> >> for the horrible sensory overload. And an added one for my horrific

> >> muscle contractions.

> >>

> >>> I also have an improvement in cognitive and communicative skills.

> >>>

> >> ***The point is - when you go off it your brain is NO BETTER and may

> >> be worse. That is a huge risk to relieve symptoms. Hey, I would take

> >> it too, if I had to. I am taking 75mg of Lyrica at night, but I am

> >> fully aware it will cure NOTHING and is protecting NOTHING. It is

> >> causing ongoing damage. Like you, I cannot tolerate the nerve

> >> problems I now have without it. These nerve problems in my case were

> >> CAUSED by quinolones and perhaps a viral infection 2 years ago that

> >> was unrelated to cfids or Lyme, as far as we can determine.

> >>

> >>

> >>> Becasue of Dr. Cheney's use of it for Neuroprotection, I began with

> >>>

> >> the same dose at night, moving to .5 every night. When I skip it, my

> >> brain is again over-firing the next day.

> >> ****There is no documentation that it protects anything. None. It

> >> does help one get through the day or night.

> >>

> >>

> >>> I use the 1/4 sometimes in the day time, and on ocassion a little

> >>>

> >> more, or one other dose.

> >>

> >>> I have never had any of the side effects on the list you posted.

> >>>

> >>> Sometimes I would like to try more becasue of brain damage concerns

> >>>

> >> and pain in my brain.

> >>

> >>> But I've remained at this very cautious dose for 3 reasons:

> >>>

> >>> A) My previous depression response

> >>>

> >>> My MCS response to nearly everything

> >>>

> >>> C) The horrific time that others have had in going off of it.

> >>>

> >>> I prefer to use non-chemical interventions, so whenever possible I

> >>>

> >> take those that have worked, in addition or try new things. Blockers

> >> of NMDA receptors are very helpful to me, and other things.

> >>

> >>> I always recommend that PWCs (or anyone) begin pharmaceuticals at

> >>>

> >> far lower doses than normally prescribed. Both to accurately monitor

> >> and prevent negative effects, and becasue we often do not need more

> >> than minute doses to benefit.

> >>

> >>> If I know someone on Klonopin who has depression, I make sure to

> >>>

> >> tell them my experience, and watch for that myself.

> >>

> >>> a, over the years, you have rather adamantly recommended some

> >>>

> >> pharmaceuticals that many can not tolerate or which have caused

> >> serious damage to some, even your own self.

> >> ***The only damage I have ever had was from quinolone antibiotics

> >> WHICH I NEVER RECOMMENDED TO ANYONE. What I have recommended was the

> >> old Roadback Foundation protocol of low dose, pulsed minocyline and

> >> Zithromax, low dose. The risk of these antibiotics is minimal. I was

> >> given quinolones by a doctor who thought it was a good way to treat

> >> Lyme disease. I have since continuously and religiously warned all

> >> other patients against ever taking any quinolones for any reason.

> >> There is no point in taking such a dangerous antibiotic when others

> >> are effective and safer.

> >>

> >>

> >>> I believe it's crucial, especially in such a sensitive and ill

> >>>

> >> population, to give a fully disclosed and balanced view of treatment

> >> results, pro and con, stressing that individuals vary widely.

> >>

> >>> If we cannot do that, we should stick simply to *our own*

> >>>

> >> experience, and as fully disclosed as we are able/aware of.

> >> ***Let me add that my experience included 5 years of attending the

> >> support group in Charlotte, NC. I never say any patient of Cheney

> >> recover. They were generally all on Klonopin. I think this

> >> observation qualifies as some sort of experience along with many

> >> postings of horror stories from patients trying to get of Klonopin.

> >>

> >> a Carnes

> >>

> >>

> >>

> >

> >

> >

[Guest guest]

Go to http://www.benzosupport.org (a group).

Tony wrote:

>

> Where can I find more information on Helen's water titration system?

>

> retractap@... <mailto:retractap%40bellsouth.net> wrote:

> > Katrina and a, I am one of the people for whom Dr. Cheney

> prescribed

> > klonopin. My own experience. was becoming tolerant to the drug and

> > suffering withdrawals while still on it, and being physically dependent

> > on it, and then going through horrible withdrawal symptoms until I

> > discovered Helen's water titration system. Finally, I took more than a

> > year to withdraw from klonopin. I don't give advice to anyone about

> > benzos any more, other than to be very CAREFUL about them. Apparently

> > some people can take them and get off them with no problem. I was not

> > one of those people.

> >

> >

> >

> > pjeanneus wrote:

> >

> >> Katrina, Look for brief replies with ***

> >>

> >>> I do not think it's fair o make such a declarative statement on

> >>>

> >> this list. particularly when I'm sure you're aware that Klonopin has

> >> been used successfully by many CFS patients over the years to relieve

> >> some of the most horrific symptoms we have.

> >> ***I do not know one cfids patient in 13 years who has recovered in

> >> any way on klonopin. Did it relieve symptoms? The patients I knew on

> >> it generally were zombies.

> >>

> >>

> >>> A different matter is to post known side effects (common or rare),

> >>>

> >> or one's own individual adverse reaction (mild or severe), as you did

> >> re Lyrica. That is very important information.

> >> ***I am not free to repost emails I have on file of other patients

> >> who had severe withdrawal issues with klonopin. I cannot post my own

> >> experience in that regard as I never was willing to risk myself and

> >> take it.

> >>

> >>

> >>> Klonopin is a top prescribed medication by Specialists in both CFS

> >>>

> >> and Dystonia, which I also have. I have seen scores of people's

> >> experiences for many many years in both populations.

> >>

> >>> The range of results is as wide as the difference between night and

> >>>

> >> day. I also have personal friends who have had the very best,

> >> dramatic success, altering their lives significnificantly in a

> >> positive way, and who've the most terrible nightmare experiences

> >> (mainly in coming off of long term and not-low doses).

> >> ***This was one of my points - it does relieve symptoms, but the

> >> risks are very serious.

> >>

> >>

> >>> My own experience with Klonopin is that many years ago, with less

> >>>

> >> knowledge about dosing, I began on a " normal " dose. I experienced

> >> sedation and depression. Therefore after a brief trial, I left it for

> >> years, never planning to go near it again.

> >>

> >>> Due to serious concerns about progression of damage being reported

> >>>

> >> in CFS brains, and my horrible sensory overload, (plus other patient'

> >> positive results), I re-visited Klonopin.

> >>

> >>> By then I had learned I am so exquisitely sensitive to drugs, that

> >>>

> >> at miniscule doses, I have rather immediate results, whether pro or

> >> con.

> >>

> >>> At extremely low dose, (1/4 of a .5, it instantly gave me a tool

> >>>

> >> for the horrible sensory overload. And an added one for my horrific

> >> muscle contractions.

> >>

> >>> I also have an improvement in cognitive and communicative skills.

> >>>

> >> ***The point is - when you go off it your brain is NO BETTER and may

> >> be worse. That is a huge risk to relieve symptoms. Hey, I would take

> >> it too, if I had to. I am taking 75mg of Lyrica at night, but I am

> >> fully aware it will cure NOTHING and is protecting NOTHING. It is

> >> causing ongoing damage. Like you, I cannot tolerate the nerve

> >> problems I now have without it. These nerve problems in my case were

> >> CAUSED by quinolones and perhaps a viral infection 2 years ago that

> >> was unrelated to cfids or Lyme, as far as we can determine.

> >>

> >>

> >>> Becasue of Dr. Cheney's use of it for Neuroprotection, I began with

> >>>

> >> the same dose at night, moving to .5 every night. When I skip it, my

> >> brain is again over-firing the next day.

> >> ****There is no documentation that it protects anything. None. It

> >> does help one get through the day or night.

> >>

> >>

> >>> I use the 1/4 sometimes in the day time, and on ocassion a little

> >>>

> >> more, or one other dose.

> >>

> >>> I have never had any of the side effects on the list you posted.

> >>>

> >>> Sometimes I would like to try more becasue of brain damage concerns

> >>>

> >> and pain in my brain.

> >>

> >>> But I've remained at this very cautious dose for 3 reasons:

> >>>

> >>> A) My previous depression response

> >>>

> >>> My MCS response to nearly everything

> >>>

> >>> C) The horrific time that others have had in going off of it.

> >>>

> >>> I prefer to use non-chemical interventions, so whenever possible I

> >>>

> >> take those that have worked, in addition or try new things. Blockers

> >> of NMDA receptors are very helpful to me, and other things.

> >>

> >>> I always recommend that PWCs (or anyone) begin pharmaceuticals at

> >>>

> >> far lower doses than normally prescribed. Both to accurately monitor

> >> and prevent negative effects, and becasue we often do not need more

> >> than minute doses to benefit.

> >>

> >>> If I know someone on Klonopin who has depression, I make sure to

> >>>

> >> tell them my experience, and watch for that myself.

> >>

> >>> a, over the years, you have rather adamantly recommended some

> >>>

> >> pharmaceuticals that many can not tolerate or which have caused

> >> serious damage to some, even your own self.

> >> ***The only damage I have ever had was from quinolone antibiotics

> >> WHICH I NEVER RECOMMENDED TO ANYONE. What I have recommended was the

> >> old Roadback Foundation protocol of low dose, pulsed minocyline and

> >> Zithromax, low dose. The risk of these antibiotics is minimal. I was

> >> given quinolones by a doctor who thought it was a good way to treat

> >> Lyme disease. I have since continuously and religiously warned all

> >> other patients against ever taking any quinolones for any reason.

> >> There is no point in taking such a dangerous antibiotic when others

> >> are effective and safer.

> >>

> >>

> >>> I believe it's crucial, especially in such a sensitive and ill

> >>>

> >> population, to give a fully disclosed and balanced view of treatment

> >> results, pro and con, stressing that individuals vary widely.

> >>

> >>> If we cannot do that, we should stick simply to *our own*

> >>>

> >> experience, and as fully disclosed as we are able/aware of.

> >> ***Let me add that my experience included 5 years of attending the

> >> support group in Charlotte, NC. I never say any patient of Cheney

> >> recover. They were generally all on Klonopin. I think this

> >> observation qualifies as some sort of experience along with many

> >> postings of horror stories from patients trying to get of Klonopin.

> >>

> >> a Carnes

> >>

> >>

> >>

> >

> >

> >

[Guest guest]

Im sorry , did Helen get off Kolonopin before she passed, I ask this

becasue I wonder if her withdrawal had anything to do with her passing, not

going to change my mind though as far as titrating off.

KIndest Regards

Mike

@...: retractap@...: Fri, 6

Jun 2008 22:30:58 -0400Subject: Re: Re: Klonopin

Katrina and a, I am one of the people for whom Dr. Cheney prescribed

klonopin. My own experience. was becoming tolerant to the drug and suffering

withdrawals while still on it, and being physically dependent on it, and then

going through horrible withdrawal symptoms until I discovered Helen's water

titration system. Finally, I took more than a year to withdraw from klonopin. I

don't give advice to anyone about benzos any more, other than to be very CAREFUL

about them. Apparently some people can take them and get off them with no

problem. I was not one of those people.pjeanneus wrote:>> Katrina, Look

for brief replies with ***> > I do not think it's fair o make such a declarative

statement on> this list. particularly when I'm sure you're aware that Klonopin

has> been used successfully by many CFS patients over the years to relieve> some

of the most horrific symptoms we have.> ***I do not know one cfids patient in 13

years who has recovered in> any way on klonopin. Did it relieve symptoms? The

patients I knew on> it generally were zombies.>> >> > A different matter is to

post known side effects (common or rare),> or one's own individual adverse

reaction (mild or severe), as you did> re Lyrica. That is very important

information.> ***I am not free to repost emails I have on file of other

patients> who had severe withdrawal issues with klonopin. I cannot post my own>

experience in that regard as I never was willing to risk myself and> take it.>>

>> > Klonopin is a top prescribed medication by Specialists in both CFS> and

Dystonia, which I also have. I have seen scores of people's> experiences for

many many years in both populations.> >> > The range of results is as wide as

the difference between night and> day. I also have personal friends who have had

the very best,> dramatic success, altering their lives significnificantly in a>

positive way, and who've the most terrible nightmare experiences> (mainly in

coming off of long term and not-low doses).> ***This was one of my points - it

does relieve symptoms, but the> risks are very serious.>> >> > My own experience

with Klonopin is that many years ago, with less> knowledge about dosing, I began

on a " normal " dose. I experienced> sedation and depression. Therefore after a

brief trial, I left it for> years, never planning to go near it again.> >> > Due

to serious concerns about progression of damage being reported> in CFS brains,

and my horrible sensory overload, (plus other patient'> positive results), I

re-visited Klonopin.> >> > By then I had learned I am so exquisitely sensitive

to drugs, that> at miniscule doses, I have rather immediate results, whether pro

or> con.> >> > At extremely low dose, (1/4 of a .5, it instantly gave me a tool>

for the horrible sensory overload. And an added one for my horrific> muscle

contractions.> >> > I also have an improvement in cognitive and communicative

skills.> ***The point is - when you go off it your brain is NO BETTER and may>

be worse. That is a huge risk to relieve symptoms. Hey, I would take> it too, if

I had to. I am taking 75mg of Lyrica at night, but I am> fully aware it will

cure NOTHING and is protecting NOTHING. It is> causing ongoing damage. Like you,

I cannot tolerate the nerve> problems I now have without it. These nerve

problems in my case were> CAUSED by quinolones and perhaps a viral infection 2

years ago that> was unrelated to cfids or Lyme, as far as we can determine.>> >>

> Becasue of Dr. Cheney's use of it for Neuroprotection, I began with> the same

dose at night, moving to .5 every night. When I skip it, my> brain is again

over-firing the next day.> ****There is no documentation that it protects

anything. None. It> does help one get through the day or night.>> >> > I use the

1/4 sometimes in the day time, and on ocassion a little> more, or one other

dose.> >> > I have never had any of the side effects on the list you posted.> >>

> Sometimes I would like to try more becasue of brain damage concerns> and pain

in my brain.> >> > But I've remained at this very cautious dose for 3 reasons:>

>> > A) My previous depression response> >> > My MCS response to nearly

everything> >> > C) The horrific time that others have had in going off of it.>

>> > I prefer to use non-chemical interventions, so whenever possible I> take

those that have worked, in addition or try new things. Blockers> of NMDA

receptors are very helpful to me, and other things.> >> > I always recommend

that PWCs (or anyone) begin pharmaceuticals at> far lower doses than normally

prescribed. Both to accurately monitor> and prevent negative effects, and

becasue we often do not need more> than minute doses to benefit.> >> > If I know

someone on Klonopin who has depression, I make sure to> tell them my experience,

and watch for that myself.> >> > a, over the years, you have rather

adamantly recommended some> pharmaceuticals that many can not tolerate or which

have caused> serious damage to some, even your own self.> ***The only damage I

have ever had was from quinolone antibiotics> WHICH I NEVER RECOMMENDED TO

ANYONE. What I have recommended was the> old Roadback Foundation protocol of low

dose, pulsed minocyline and> Zithromax, low dose. The risk of these antibiotics

is minimal. I was> given quinolones by a doctor who thought it was a good way to

treat> Lyme disease. I have since continuously and religiously warned all> other

patients against ever taking any quinolones for any reason.> There is no point

in taking such a dangerous antibiotic when others> are effective and safer.>> >>

> I believe it's crucial, especially in such a sensitive and ill> population, to

give a fully disclosed and balanced view of treatment> results, pro and con,

stressing that individuals vary widely.> >> > If we cannot do that, we should

stick simply to *our own*> experience, and as fully disclosed as we are

able/aware of.> ***Let me add that my experience included 5 years of attending

the> support group in Charlotte, NC. I never say any patient of Cheney> recover.

They were generally all on Klonopin. I think this> observation qualifies as some

sort of experience along with many> postings of horror stories from patients

trying to get of Klonopin.>> a Carnes>> [Non-text portions of this message

have been removed]

_________________________________________________________________

Search that pays you back! Introducing Live Search cashback.

http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyoubac\

k

[Guest guest]

Mais non, Katrina. Helen and several friends developed the water

titration system which is still used by many. Others have, of course,

copied it, and the concept was not new. The water titration system

developed by Helen and friends is located at benzosupport dot org

kattemayo wrote:

>

>

> Tony,

>

> I think you can find it on a Benzo patient forum or google it. The

> method is not Helen's specificaly, but one she told us about.

>

> (Sorry if I left something out...others know more specifics).

>

> Katrina

>

>

> > >

> > >> Katrina, Look for brief replies with ***

> > >>

> > >>> I do not think it's fair o make such a declarative statement on

> > >>>

> > >> this list. particularly when I'm sure you're aware that Klonopin has

> > >> been used successfully by many CFS patients over the years to relieve

> > >> some of the most horrific symptoms we have.

> > >> ***I do not know one cfids patient in 13 years who has recovered in

> > >> any way on klonopin. Did it relieve symptoms? The patients I knew on

> > >> it generally were zombies.

> > >>

> > >>

> > >>> A different matter is to post known side effects (common or rare),

> > >>>

> > >> or one's own individual adverse reaction (mild or severe), as you did

> > >> re Lyrica. That is very important information.

> > >> ***I am not free to repost emails I have on file of other patients

> > >> who had severe withdrawal issues with klonopin. I cannot post my own

> > >> experience in that regard as I never was willing to risk myself and

> > >> take it.

> > >>

> > >>

> > >>> Klonopin is a top prescribed medication by Specialists in both CFS

> > >>>

> > >> and Dystonia, which I also have. I have seen scores of people's

> > >> experiences for many many years in both populations.

> > >>

> > >>> The range of results is as wide as the difference between night and

> > >>>

> > >> day. I also have personal friends who have had the very best,

> > >> dramatic success, altering their lives significnificantly in a

> > >> positive way, and who've the most terrible nightmare experiences

> > >> (mainly in coming off of long term and not-low doses).

> > >> ***This was one of my points - it does relieve symptoms, but the

> > >> risks are very serious.

> > >>

> > >>

> > >>> My own experience with Klonopin is that many years ago, with less

> > >>>

> > >> knowledge about dosing, I began on a " normal " dose. I experienced

> > >> sedation and depression. Therefore after a brief trial, I left it for

> > >> years, never planning to go near it again.

> > >>

> > >>> Due to serious concerns about progression of damage being reported

> > >>>

> > >> in CFS brains, and my horrible sensory overload, (plus other patient'

> > >> positive results), I re-visited Klonopin.

> > >>

> > >>> By then I had learned I am so exquisitely sensitive to drugs, that

> > >>>

> > >> at miniscule doses, I have rather immediate results, whether pro or

> > >> con.

> > >>

> > >>> At extremely low dose, (1/4 of a .5, it instantly gave me a tool

> > >>>

> > >> for the horrible sensory overload. And an added one for my horrific

> > >> muscle contractions.

> > >>

> > >>> I also have an improvement in cognitive and communicative skills.

> > >>>

> > >> ***The point is - when you go off it your brain is NO BETTER and may

> > >> be worse. That is a huge risk to relieve symptoms. Hey, I would take

> > >> it too, if I had to. I am taking 75mg of Lyrica at night, but I am

> > >> fully aware it will cure NOTHING and is protecting NOTHING. It is

> > >> causing ongoing damage. Like you, I cannot tolerate the nerve

> > >> problems I now have without it. These nerve problems in my case were

> > >> CAUSED by quinolones and perhaps a viral infection 2 years ago that

> > >> was unrelated to cfids or Lyme, as far as we can determine.

> > >>

> > >>

> > >>> Becasue of Dr. Cheney's use of it for Neuroprotection, I began with

> > >>>

> > >> the same dose at night, moving to .5 every night. When I skip it, my

> > >> brain is again over-firing the next day.

> > >> ****There is no documentation that it protects anything. None. It

> > >> does help one get through the day or night.

> > >>

> > >>

> > >>> I use the 1/4 sometimes in the day time, and on ocassion a little

> > >>>

> > >> more, or one other dose.

> > >>

> > >>> I have never had any of the side effects on the list you posted.

> > >>>

> > >>> Sometimes I would like to try more becasue of brain damage concerns

> > >>>

> > >> and pain in my brain.

> > >>

> > >>> But I've remained at this very cautious dose for 3 reasons:

> > >>>

> > >>> A) My previous depression response

> > >>>

> > >>> My MCS response to nearly everything

> > >>>

> > >>> C) The horrific time that others have had in going off of it.

> > >>>

> > >>> I prefer to use non-chemical interventions, so whenever possible I

> > >>>

> > >> take those that have worked, in addition or try new things. Blockers

> > >> of NMDA receptors are very helpful to me, and other things.

> > >>

> > >>> I always recommend that PWCs (or anyone) begin pharmaceuticals at

> > >>>

> > >> far lower doses than normally prescribed. Both to accurately monitor

> > >> and prevent negative effects, and becasue we often do not need more

> > >> than minute doses to benefit.

> > >>

> > >>> If I know someone on Klonopin who has depression, I make sure to

> > >>>

> > >> tell them my experience, and watch for that myself.

> > >>

> > >>> a, over the years, you have rather adamantly recommended some

> > >>>

> > >> pharmaceuticals that many can not tolerate or which have caused

> > >> serious damage to some, even your own self.

> > >> ***The only damage I have ever had was from quinolone antibiotics

> > >> WHICH I NEVER RECOMMENDED TO ANYONE. What I have recommended was the

> > >> old Roadback Foundation protocol of low dose, pulsed minocyline and

> > >> Zithromax, low dose. The risk of these antibiotics is minimal. I was

> > >> given quinolones by a doctor who thought it was a good way to treat

> > >> Lyme disease. I have since continuously and religiously warned all

> > >> other patients against ever taking any quinolones for any reason.

> > >> There is no point in taking such a dangerous antibiotic when others

> > >> are effective and safer.

> > >>

> > >>

> > >>> I believe it's crucial, especially in such a sensitive and ill

> > >>>

> > >> population, to give a fully disclosed and balanced view of treatment

> > >> results, pro and con, stressing that individuals vary widely.

> > >>

> > >>> If we cannot do that, we should stick simply to *our own*

> > >>>

> > >> experience, and as fully disclosed as we are able/aware of.

> > >> ***Let me add that my experience included 5 years of attending the

> > >> support group in Charlotte, NC. I never say any patient of Cheney

> > >> recover. They were generally all on Klonopin. I think this

> > >> observation qualifies as some sort of experience along with many

> > >> postings of horror stories from patients trying to get of Klonopin.

> > >>

> > >> a Carnes

> > >>

> > >>

> > >>

> > >

> > >

> > >

[Guest guest]

She withdrew from klonopin years before her death in Sept 2007.

Unfortunately, she had started back on a small dosage of klonopin

shortly before she died due to extreme problems. She was still under

Dr. Cheney's care and she was doing his stem cell protocol as well as

taking other prescriptions from him.

There are anecdotal tales of people dying while withdrawing from

benzos. You'll probably find some on the benzo support site.

Personally, I do not know of anyone who has died from benzo withdrawals,

nor have I read any studies saying this has happened.

If you do the water titration route, I don't think you'll have any

problems. If you do experience withdrawal symptoms starting, you are in

control, so you can slow the rate of withdrawal. For myself, I took a

year to get off that last 1mg because I preferred pain free to fast.

Other people might prefer to go faster and suffer a little.

Best,

Mike Dessin wrote:

>

>

> Im sorry , did Helen get off Kolonopin before she passed, I

> ask this becasue I wonder if her withdrawal had anything to do with

> her passing, not going to change my mind though as far as titrating off.

> KIndest Regards

> Mike

>

> @...

> <mailto:%40From>:

> retractap@... <mailto:retractap%40bellsouth.netDate>:

> Fri, 6 Jun 2008 22:30:58 -0400Subject: Re: Re:

> Klonopin

>

> Katrina and a, I am one of the people for whom Dr. Cheney

> prescribed klonopin. My own experience. was becoming tolerant to the

> drug and suffering withdrawals while still on it, and being physically

> dependent on it, and then going through horrible withdrawal symptoms

> until I discovered Helen's water titration system. Finally, I took

> more than a year to withdraw from klonopin. I don't give advice to

> anyone about benzos any more, other than to be very CAREFUL about

> them. Apparently some people can take them and get off them with no

> problem. I was not one of those people.pjeanneus wrote:>>

> Katrina, Look for brief replies with ***> > I do not think it's fair o

> make such a declarative statement on> this list. particularly when I'm

> sure you're aware that Klonopin has> been used successfully by many

> CFS patients over the years to relieve> some of the most horrific

> symptoms we have.> ***I do not know one cfids patient in 13 years who

> has recovered in> any way on klonopin. Did it relieve symptoms? The

> patients I knew on> it generally were zombies.>> >> > A different

> matter is to post known side effects (common or rare),> or one's own

> individual adverse reaction (mild or severe), as you did> re Lyrica.

> That is very important information.> ***I am not free to repost emails

> I have on file of other patients> who had severe withdrawal issues

> with klonopin. I cannot post my own> experience in that regard as I

> never was willing to risk myself and> take it.>> >> > Klonopin is a

> top prescribed medication by Specialists in both CFS> and Dystonia,

> which I also have. I have seen scores of people's> experiences for

> many many years in both populations.> >> > The range of results is as

> wide as the difference between night and> day. I also have personal

> friends who have had the very best,> dramatic success, altering their

> lives significnificantly in a> positive way, and who've the most

> terrible nightmare experiences> (mainly in coming off of long term and

> not-low doses).> ***This was one of my points - it does relieve

> symptoms, but the> risks are very serious.>> >> > My own experience

> with Klonopin is that many years ago, with less> knowledge about

> dosing, I began on a " normal " dose. I experienced> sedation and

> depression. Therefore after a brief trial, I left it for> years, never

> planning to go near it again.> >> > Due to serious concerns about

> progression of damage being reported> in CFS brains, and my horrible

> sensory overload, (plus other patient'> positive results), I

> re-visited Klonopin.> >> > By then I had learned I am so exquisitely

> sensitive to drugs, that> at miniscule doses, I have rather immediate

> results, whether pro or> con.> >> > At extremely low dose, (1/4 of a

> .5, it instantly gave me a tool> for the horrible sensory overload.

> And an added one for my horrific> muscle contractions.> >> > I also

> have an improvement in cognitive and communicative skills.> ***The

> point is - when you go off it your brain is NO BETTER and may> be

> worse. That is a huge risk to relieve symptoms. Hey, I would take> it

> too, if I had to. I am taking 75mg of Lyrica at night, but I am> fully

> aware it will cure NOTHING and is protecting NOTHING. It is> causing

> ongoing damage. Like you, I cannot tolerate the nerve> problems I now

> have without it. These nerve problems in my case were> CAUSED by

> quinolones and perhaps a viral infection 2 years ago that> was

> unrelated to cfids or Lyme, as far as we can determine.>> >> > Becasue

> of Dr. Cheney's use of it for Neuroprotection, I began with> the same

> dose at night, moving to .5 every night. When I skip it, my> brain is

> again over-firing the next day.> ****There is no documentation that it

> protects anything. None. It> does help one get through the day or

> night.>> >> > I use the 1/4 sometimes in the day time, and on ocassion

> a little> more, or one other dose.> >> > I have never had any of the

> side effects on the list you posted.> >> > Sometimes I would like to

> try more becasue of brain damage concerns> and pain in my brain.> >> >

> But I've remained at this very cautious dose for 3 reasons:> >> > A)

> My previous depression response> >> > My MCS response to nearly

> everything> >> > C) The horrific time that others have had in going

> off of it.> >> > I prefer to use non-chemical interventions, so

> whenever possible I> take those that have worked, in addition or try

> new things. Blockers> of NMDA receptors are very helpful to me, and

> other things.> >> > I always recommend that PWCs (or anyone) begin

> pharmaceuticals at> far lower doses than normally prescribed. Both to

> accurately monitor> and prevent negative effects, and becasue we often

> do not need more> than minute doses to benefit.> >> > If I know

> someone on Klonopin who has depression, I make sure to> tell them my

> experience, and watch for that myself.> >> > a, over the years,

> you have rather adamantly recommended some> pharmaceuticals that many

> can not tolerate or which have caused> serious damage to some, even

> your own self.> ***The only damage I have ever had was from quinolone

> antibiotics> WHICH I NEVER RECOMMENDED TO ANYONE. What I have

> recommended was the> old Roadback Foundation protocol of low dose,

> pulsed minocyline and> Zithromax, low dose. The risk of these

> antibiotics is minimal. I was> given quinolones by a doctor who

> thought it was a good way to treat> Lyme disease. I have since

> continuously and religiously warned all> other patients against ever

> taking any quinolones for any reason.> There is no point in taking

> such a dangerous antibiotic when others> are effective and safer.>> >>

> > I believe it's crucial, especially in such a sensitive and ill>

> population, to give a fully disclosed and balanced view of treatment>

> results, pro and con, stressing that individuals vary widely.> >> > If

> we cannot do that, we should stick simply to *our own*> experience,

> and as fully disclosed as we are able/aware of.> ***Let me add that my

> experience included 5 years of attending the> support group in

> Charlotte, NC. I never say any patient of Cheney> recover. They were

> generally all on Klonopin. I think this> observation qualifies as some

> sort of experience along with many> postings of horror stories from

> patients trying to get of Klonopin.>> a Carnes>> [Non-text

> portions of this message have been removed]

>

> __________________________________________________________

> Search that pays you back! Introducing Live Search cashback.

>

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>

>

[Guest guest]

My apologies to the group. I thought I had sent this privately to Mike.

retractap@... wrote:

>

> She withdrew from klonopin years before her death in Sept 2007.

> Unfortunately, she had started back on a small dosage of klonopin

> shortly before she died due to extreme problems. She was still under

> Dr. Cheney's care and she was doing his stem cell protocol as well as

> taking other prescriptions from him.

>

> There are anecdotal tales of people dying while withdrawing from

> benzos. You'll probably find some on the benzo support site.

> Personally, I do not know of anyone who has died from benzo withdrawals,

> nor have I read any studies saying this has happened.

>

> If you do the water titration route, I don't think you'll have any

> problems. If you do experience withdrawal symptoms starting, you are in

> control, so you can slow the rate of withdrawal. For myself, I took a

> year to get off that last 1mg because I preferred pain free to fast.

> Other people might prefer to go faster and suffer a little.

>

> Best,

>

>

> Mike Dessin wrote:

> >

> >

> > Im sorry , did Helen get off Kolonopin before she passed, I

> > ask this becasue I wonder if her withdrawal had anything to do with

> > her passing, not going to change my mind though as far as titrating off.

> > KIndest Regards

> > Mike

> >

> > @...

> <mailto:%40From>

> > <mailto:%40From>:

> > retractap@... <mailto:retractap%40bellsouth.netDate>

> <mailto:retractap%40bellsouth.netDate>:

> > Fri, 6 Jun 2008 22:30:58 -0400Subject: Re: Re:

> > Klonopin

> >

> > Katrina and a, I am one of the people for whom Dr. Cheney

> > prescribed klonopin. My own experience. was becoming tolerant to the

> > drug and suffering withdrawals while still on it, and being physically

> > dependent on it, and then going through horrible withdrawal symptoms

> > until I discovered Helen's water titration system. Finally, I took

> > more than a year to withdraw from klonopin. I don't give advice to

> > anyone about benzos any more, other than to be very CAREFUL about

> > them. Apparently some people can take them and get off them with no

> > problem. I was not one of those people.pjeanneus wrote:>>

> > Katrina, Look for brief replies with ***> > I do not think it's fair o

> > make such a declarative statement on> this list. particularly when I'm

> > sure you're aware that Klonopin has> been used successfully by many

> > CFS patients over the years to relieve> some of the most horrific

> > symptoms we have.> ***I do not know one cfids patient in 13 years who

> > has recovered in> any way on klonopin. Did it relieve symptoms? The

> > patients I knew on> it generally were zombies.>> >> > A different

> > matter is to post known side effects (common or rare),> or one's own

> > individual adverse reaction (mild or severe), as you did> re Lyrica.

> > That is very important information.> ***I am not free to repost emails

> > I have on file of other patients> who had severe withdrawal issues

> > with klonopin. I cannot post my own> experience in that regard as I

> > never was willing to risk myself and> take it.>> >> > Klonopin is a

> > top prescribed medication by Specialists in both CFS> and Dystonia,

> > which I also have. I have seen scores of people's> experiences for

> > many many years in both populations.> >> > The range of results is as

> > wide as the difference between night and> day. I also have personal

> > friends who have had the very best,> dramatic success, altering their

> > lives significnificantly in a> positive way, and who've the most

> > terrible nightmare experiences> (mainly in coming off of long term and

> > not-low doses).> ***This was one of my points - it does relieve

> > symptoms, but the> risks are very serious.>> >> > My own experience

> > with Klonopin is that many years ago, with less> knowledge about

> > dosing, I began on a " normal " dose. I experienced> sedation and

> > depression. Therefore after a brief trial, I left it for> years, never

> > planning to go near it again.> >> > Due to serious concerns about

> > progression of damage being reported> in CFS brains, and my horrible

> > sensory overload, (plus other patient'> positive results), I

> > re-visited Klonopin.> >> > By then I had learned I am so exquisitely

> > sensitive to drugs, that> at miniscule doses, I have rather immediate

> > results, whether pro or> con.> >> > At extremely low dose, (1/4 of a

> > .5, it instantly gave me a tool> for the horrible sensory overload.

> > And an added one for my horrific> muscle contractions.> >> > I also

> > have an improvement in cognitive and communicative skills.> ***The

> > point is - when you go off it your brain is NO BETTER and may> be

> > worse. That is a huge risk to relieve symptoms. Hey, I would take> it

> > too, if I had to. I am taking 75mg of Lyrica at night, but I am> fully

> > aware it will cure NOTHING and is protecting NOTHING. It is> causing

> > ongoing damage. Like you, I cannot tolerate the nerve> problems I now

> > have without it. These nerve problems in my case were> CAUSED by

> > quinolones and perhaps a viral infection 2 years ago that> was

> > unrelated to cfids or Lyme, as far as we can determine.>> >> > Becasue

> > of Dr. Cheney's use of it for Neuroprotection, I began with> the same

> > dose at night, moving to .5 every night. When I skip it, my> brain is

> > again over-firing the next day.> ****There is no documentation that it

> > protects anything. None. It> does help one get through the day or

> > night.>> >> > I use the 1/4 sometimes in the day time, and on ocassion

> > a little> more, or one other dose.> >> > I have never had any of the

> > side effects on the list you posted.> >> > Sometimes I would like to

> > try more becasue of brain damage concerns> and pain in my brain.> >> >

> > But I've remained at this very cautious dose for 3 reasons:> >> > A)

> > My previous depression response> >> > My MCS response to nearly

> > everything> >> > C) The horrific time that others have had in going

> > off of it.> >> > I prefer to use non-chemical interventions, so

> > whenever possible I> take those that have worked, in addition or try

> > new things. Blockers> of NMDA receptors are very helpful to me, and

> > other things.> >> > I always recommend that PWCs (or anyone) begin

> > pharmaceuticals at> far lower doses than normally prescribed. Both to

> > accurately monitor> and prevent negative effects, and becasue we often

> > do not need more> than minute doses to benefit.> >> > If I know

> > someone on Klonopin who has depression, I make sure to> tell them my

> > experience, and watch for that myself.> >> > a, over the years,

> > you have rather adamantly recommended some> pharmaceuticals that many

> > can not tolerate or which have caused> serious damage to some, even

> > your own self.> ***The only damage I have ever had was from quinolone

> > antibiotics> WHICH I NEVER RECOMMENDED TO ANYONE. What I have

> > recommended was the> old Roadback Foundation protocol of low dose,

> > pulsed minocyline and> Zithromax, low dose. The risk of these

> > antibiotics is minimal. I was> given quinolones by a doctor who

> > thought it was a good way to treat> Lyme disease. I have since

> > continuously and religiously warned all> other patients against ever

> > taking any quinolones for any reason.> There is no point in taking

> > such a dangerous antibiotic when others> are effective and safer.>> >>

> > > I believe it's crucial, especially in such a sensitive and ill>

> > population, to give a fully disclosed and balanced view of treatment>

> > results, pro and con, stressing that individuals vary widely.> >> > If

> > we cannot do that, we should stick simply to *our own*> experience,

> > and as fully disclosed as we are able/aware of.> ***Let me add that my

> > experience included 5 years of attending the> support group in

> > Charlotte, NC. I never say any patient of Cheney> recover. They were

> > generally all on Klonopin. I think this> observation qualifies as some

> > sort of experience along with many> postings of horror stories from

> > patients trying to get of Klonopin.>> a Carnes>> [Non-text

> > portions of this message have been removed]

> >

> > __________________________________________________________

> > Search that pays you back! Introducing Live Search cashback.

> >

>

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>

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> >

>

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> >

> >

[Guest guest]

I am not sure where I stand on the klonopin issue, but ironically my

new computer has a program that has been trying to clean out old email

and a message I sent to myself 2 yrs ago was brought to my attention,

I don't know where I got the interview with cheney or how old it is

but this is verbatiom what I copied and sent myself from somehting I

found on the web. If any people more familiar with cheney and klonopin

want to comment please do and if the moderator feels its too long I

humbly accept, it just struck me as so fitting to questions in these

threads right now about k.

begin excerpt:

** " On the other hand, trouble arises when someone who still has an

injured

brain tries to come off Klonopin. It's like a thyroid patient stopping

their

thyroid medication. Dr. Cheney warned, " All hell breaks loose " . However,

it's not because the drug is addicting, and it's not withdrawal. The

condition still exists, and the body lets you know it has a legitimate

physical need for the drug. Cheney stated, " When a CFIDS patient who is

still experiencing the underlying mechanisms of brain injury goes off

Klonopin, there is a burst of excess neural firing and cell death. That's

the havoc we hear about that is mistakenly called withdrawal. "

whole article:

Many CFIDS specialists prescribe the drug Klonopin. In the October 1999

issue of The Fibromyalgia Network, nine CFS/FM specialists summarized

their

most effective treatments, and six included Klonopin. Interestingly, the

three who did not are primarily FM specialists.

Dr. Cheney prescribes Klonopin to address a condition associated with

CFIDS

called " excitatory neurotoxicity. " To explain this condition to

patients, he

draws a line with " seizure " on the far left and " coma " on the far

right. A

big dot in the middle represents where healthy people are when awake.

A dot

somewhat to the right of the middle indicates where healthy people are

when

asleep – slightly shifted toward coma. He highlights in red the left

portion

of the line, from seizure to the middle, and labels it " Neurotoxic State "

(damaging to the brain). He highlights in blue the right portion of the

line, from coma to the middle, and labels it " Healing State. "

In CFIDS, an ongoing injury to the brain shifts patients toward

seizure. A

dot to the left of the middle, marked " injury, " represents the

position of

CFIDS patients. This puts us in the red " Neurotoxic " zone. When we shift

toward seizure, we often experience " sensory overload. " It's as if our

brain's " radar " is too sensitive. Our neurons (nerve cells) are sensing

stimuli and firing when they should not. This causes amplification of

sensory input. Light, noise, motion and pain are all magnified. At the

beginning of their illness, many patients report feeling exhausted,

yet also

strangely " wired. " The " wired " feeling is the slight shift towards

seizure

that occurs as a result of the excitatory neurotoxicity.

Cheney frequently uses the term " threshold potential " when discussing

excitatory neurotoxicity. (Think of the threshold - bottom - of a

doorway.

The lower it is, the more accessible it is. When it is at floor level,

everything can enter. When it is raised, access is restricted to taller

people. If it is too high, no one can enter.) Threshold potential

refers to

how much stimulus it takes to make neurons fire. If the threshold

potential

is too low, even slight stimulation is " allowed to enter " and is

detected by

the neurons. This causes the neurons to fire, resulting in sensory

overload.

If the threshold is dropped to nothing, all stimuli get through and the

neurons fire continuously, resulting in a seizure. If the threshold is

raised, only stronger stimuli can make neurons fire. A healthy person's

threshold potential naturally rises at bedtime, promoting sleep. If the

threshold potential is too high, you feel drugged or drowsy. If the

threshold potential is raised extremely high, coma results.

Two receptors in the brain, NMDA and GABA, determine the threshold

potential. During the waking hours of a healthy person, NMDA and GABA

should

be equally active. This balances the person in the middle of the

seizure/coma continuum. NMDA stimulates, and GABA inhibits. If NMDA

increases, one moves toward seizure. If GABA increases, one moves toward

coma.

In CFIDS, NMDA is more activated than GABA, lowering the threshold

potential. This causes neurons to fire with very little stimulation,

resulting in sensory overload. This condition of excitatory

neurotoxicity is

dangerous. Dr. Cheney emphasizes that in an attempt to protect itself,

the

body will eventually kill neurons that fire excessively. He states that

brain cell loss can result if this condition isn't addressed.

How can the brain be protected against excitatory neurotoxicity?

Klonopin.

This long acting benzodiazepine has been Dr. Cheney's most effective drug

for CFIDS over the years. He believes that Klonopin and the supplement

magnesium may be two of the most important treatments for CFIDS patients

because of their neuroprotective qualities. He recommends two or more

0.5 mg

tablets of Klonopin at night. Paradoxically, very small doses (usually a

quarter to a half a tablet) in the morning and mid-afternoon improve

cognitive function and energy. If the daytime dose is low enough, you'll

experience greater clarity and think better. If the daytime dose is too

high, you'll become drowsy. Adjust your dose for maximum benefit,

taking as

much as possible without drowsiness. Adjust the morning dose first, then

take the same amount mid-afternoon if needed, then take three to four

times

the morning dose at bedtime. Dr. Cheney recommends doubling the dose

during

severe relapses.

Dr. Cheney most frequently prescribes the combination of Klonopin and

Doxepin, along with the supplement " Magnesium Glycinate Forte. " Magnesium

Glycinate alone is a good choice for the more budget

minded(www.ImmuneSupport.com sells it as " Magnesium Plus " .) A common

dosage

of magnesium is 200 mgs at bedtime. Too much magnesium can cause

diarrhea,

though glycinate is usually the best tolerated form.

Cheney prescribes Doxepin in the form of a commercial elixir

(10mg/ml). At

low doses, this tricyclic antidepressant acts as a very potent

antihistamine

and immune modulator. Doxepin acts synergistically with Klonopin to

assist

sleep, and may improve pain. Patients tend to be very sensitive to

Doxepin,

which can cause morning fog and fatigue if the dose is too high (5 to

10 mg

or higher). He recommends starting at two drops a night and gradually

increasing the dose until " morning fog " becomes a problem. Most patients

can't tolerate more than half a cc.

On a handout entitled " Neuroprotection via Threshold Potentials, " Cheney

lists six substances that can protect the brain. Under the category " NMDA

Blockers " Cheney lists:

1. Parenteral magnesium and taurine (intramuscular injections of

magnesium

and taurine, usually given with procaine) 2. Histamine blockers (Doxepin

Elixir) Under the category " GABA Agonists " (increases GABA) Cheney

lists: 3.

Klonopin 4. Neurontin 5. Kava Kava 6. Valerian Root

Klonopin is taken " day and night " ; Neurontin " night, or day and

night " ; kava

kava " daytime only " ; and valerian " nighttime only. " The first four are by

prescription, the last two are herbs. In my limited experience, only

certain

patients are put on magnesium/taurine injections, and then only for a

limited period before switching to oral supplements.

Many myths abound concerning Klonopin. When asked about these myths, Dr.

Cheney shared the following information.

MYTH NUMBER ONE: THE GENERIC IS JUST AS GOOD.

When the generic Clonazepam came on the market, many patients switched

to it

because it was less expensive than Klonopin. Cheney then began hearing

that

most patients had to take more Clonazepam to get the same effect.

Generics

aren't exactly identical to the original products, and with most drugs

the

slight variations don't matter. However, most CFIDS patients can tell the

difference between Klonopin and its generic form, Clonazepam. Most find

Klonopin to be more effective.

MYTH NUMBER TWO: KLONOPIN IS ADDICTIVE.

Dr. Cheney was adamant that Klonopin is not addictive. In treating

thousands

of patients, he has never seen a patient become addicted to Klonopin. He

reviewed the definition of addiction, stating that it involves: (1)

psychosocial disruption, (2) accelerated use, (3) inappropriate use,

and (4)

drug seeking behavior.

Dr. Cheney said a case might be made that Klonopin is habituating.

It's true

that it can't be stopped suddenly. You must taper off of it gradually.

However, he was cautious about even calling it habituating. The

process of

tapering off a drug is not the same thing as withdrawal, a term that

implies

addiction.

Dr. Cheney said to keep in mind that Klonopin is given for a

physiological

problem – excitatory neurotoxicity. It's prescribed to adjust the

threshold

potential: to keep neurons from firing inappropriately and being

destroyed.

He stressed that Klonopin should never be given unless you intend to

raise

the threshold potential. He stated, " Problems arise when you begin to use

benzodiazapines for reasons other than threshold manipulation. " However,

CFIDS patients have a " threshold potential aberration " and need

Klonopin (or

something similar) to avoid brain injury. Dr. Cheney has never seen a

recovered patient have difficulty coming off Klonopin. He stated,

" When you

no longer need the drug, coming off it is very easy. "

On the other hand, trouble arises when someone who still has an injured

brain tries to come off Klonopin. It's like a thyroid patient stopping

their

thyroid medication. Dr. Cheney warned, " All hell breaks loose " . However,

it's not because the drug is addicting, and it's not withdrawal. The

condition still exists, and the body lets you know it has a legitimate

physical need for the drug. Cheney stated, " When a CFIDS patient who is

still experiencing the underlying mechanisms of brain injury goes off

Klonopin, there is a burst of excess neural firing and cell death. That's

the havoc we hear about that is mistakenly called withdrawal. "

MYTH NUMBER THREE: KLONOPIN DISRUPTS STAGE 4 SLEEP.

Dr. Cheney said that he honestly doesn't understand this concern. He

believes Klonopin might disrupt the sleep of people who take it for

conditions other than the threshold potential aberration found in

CFIDS. He

also acknowledged that if you are looking just for drugs to facilitate

sleep, Klonopin is certainly not the first one to come to mind, nor

should

it be used to induce sleep in " ordinary " patients. It's not a sleep

drug per

se. However, a large part of the sleep disorder of CFIDS is excitatory

neurotoxicity and the resulting shift toward seizure. If you treat this

condition with Klonopin, then you have treated a large part of the sleep

disorder in CFIDS. Most importantly, he said he simply does not see

stage 4

sleep disruption in his patients on Klonopin.

Towards the end of this discussion on Klonopin, Cheney smiled, and

remarked,

" But suppose I'm wrong about the brain injury and the threshold potential

aberration and the shift toward seizure? What if I'm wrong about your

need

for Klonopin? I'm absolutely sure I'm right, but what's the worst case

scenario? Do you know what long-term studies on Klonopin have shown?

Reduced

incidence of Alzheimer's Disease. Alzheimer's Disease is a complicated

and

convoluted way of knocking out your neurons, and Klonopin protects your

neurons. Now it's believed that Klonopin didn't actually stop

Alzheimer's.

It just delayed its onset so long that everyone died of something else

before they ever got it - which is to say you won't get Alzheimer's.

You'll

die of something else first. "

The last question Cheney addressed concerned the dose: what happens if

the

dose is too high? He said the only down side was that if you took a

little

too much (we are not talking overdose here) it would shift you toward

coma

on the continuum. It would shut your brain down to some degree, and thus

impact your ability to function. This is inconvenient, but it's not

harmful.

In fact, it shifts you into the " healing state " on the continuum. You may

feel like a zombie, but your brain is protected and your neurons are not

getting fried. However, not being able to function isn't an option for

most

of us, so we need to find the maximum dose that doesn't make us drowsy.

Dr. Cheney emphasized that Klonopin, Doxepin, and magnesium are very,

very

good at protecting the brain from cell death due to excess firing.

However,

they can't stop the underlying mechanisms of CFIDS that are injuring the

brain in the first place.

Though it can't stop the underlying mechanisms causing the injury,

Klonopin

can protect your brain and keep your neurons from being destroyed.

Then, as

Cheney put it, " When you come out on the other side of this, you'll have

more of your brain left. "

end excerpt

>>

> > > Katrina, Look for brief replies with ***> > I do not think it's

fair o

> > > make such a declarative statement on> this list. particularly

when I'm

> > > sure you're aware that Klonopin has> been used successfully by many

> > > CFS patients over the years to relieve> some of the most horrific

> > > symptoms we have.> ***I do not know one cfids patient in 13

years who

> > > has recovered in> any way on klonopin. Did it relieve symptoms? The

> > > patients I knew on> it generally were zombies.>> >> > A different

> > > matter is to post known side effects (common or rare),> or one's own

> > > individual adverse reaction (mild or severe), as you did> re Lyrica.

> > > That is very important information.> ***I am not free to repost

emails

> > > I have on file of other patients> who had severe withdrawal issues

> > > with klonopin. I cannot post my own> experience in that regard as I

> > > never was willing to risk myself and> take it.>> >> > Klonopin is a

> > > top prescribed medication by Specialists in both CFS> and Dystonia,

> > > which I also have. I have seen scores of people's> experiences for

> > > many many years in both populations.> >> > The range of results

is as

> > > wide as the difference between night and> day. I also have personal

> > > friends who have had the very best,> dramatic success, altering

their

> > > lives significnificantly in a> positive way, and who've the most

> > > terrible nightmare experiences> (mainly in coming off of long

term and

> > > not-low doses).> ***This was one of my points - it does relieve

> > > symptoms, but the> risks are very serious.>> >> > My own experience

> > > with Klonopin is that many years ago, with less> knowledge about

> > > dosing, I began on a " normal " dose. I experienced> sedation and

> > > depression. Therefore after a brief trial, I left it for> years,

never

> > > planning to go near it again.> >> > Due to serious concerns about

> > > progression of damage being reported> in CFS brains, and my horrible

> > > sensory overload, (plus other patient'> positive results), I

> > > re-visited Klonopin.> >> > By then I had learned I am so exquisitely

> > > sensitive to drugs, that> at miniscule doses, I have rather

immediate

> > > results, whether pro or> con.> >> > At extremely low dose, (1/4 of a

> > > .5, it instantly gave me a tool> for the horrible sensory overload.

> > > And an added one for my horrific> muscle contractions.> >> > I also

> > > have an improvement in cognitive and communicative skills.> ***The

> > > point is - when you go off it your brain is NO BETTER and may> be

> > > worse. That is a huge risk to relieve symptoms. Hey, I would

take> it

> > > too, if I had to. I am taking 75mg of Lyrica at night, but I am>

fully

> > > aware it will cure NOTHING and is protecting NOTHING. It is> causing

> > > ongoing damage. Like you, I cannot tolerate the nerve> problems

I now

> > > have without it. These nerve problems in my case were> CAUSED by

> > > quinolones and perhaps a viral infection 2 years ago that> was

> > > unrelated to cfids or Lyme, as far as we can determine.>> >> >

Becasue

> > > of Dr. Cheney's use of it for Neuroprotection, I began with> the

same

> > > dose at night, moving to .5 every night. When I skip it, my>

brain is

> > > again over-firing the next day.> ****There is no documentation

that it

> > > protects anything. None. It> does help one get through the day or

> > > night.>> >> > I use the 1/4 sometimes in the day time, and on

ocassion

> > > a little> more, or one other dose.> >> > I have never had any of the

> > > side effects on the list you posted.> >> > Sometimes I would like to

> > > try more becasue of brain damage concerns> and pain in my

brain.> >> >

> > > But I've remained at this very cautious dose for 3 reasons:> >> > A)

> > > My previous depression response> >> > My MCS response to nearly

> > > everything> >> > C) The horrific time that others have had in going

> > > off of it.> >> > I prefer to use non-chemical interventions, so

> > > whenever possible I> take those that have worked, in addition or try

> > > new things. Blockers> of NMDA receptors are very helpful to me, and

> > > other things.> >> > I always recommend that PWCs (or anyone) begin

> > > pharmaceuticals at> far lower doses than normally prescribed.

Both to

> > > accurately monitor> and prevent negative effects, and becasue we

often

> > > do not need more> than minute doses to benefit.> >> > If I know

> > > someone on Klonopin who has depression, I make sure to> tell them my

> > > experience, and watch for that myself.> >> > a, over the years,

> > > you have rather adamantly recommended some> pharmaceuticals that

many

> > > can not tolerate or which have caused> serious damage to some, even

> > > your own self.> ***The only damage I have ever had was from

quinolone

> > > antibiotics> WHICH I NEVER RECOMMENDED TO ANYONE. What I have

> > > recommended was the> old Roadback Foundation protocol of low dose,

> > > pulsed minocyline and> Zithromax, low dose. The risk of these

> > > antibiotics is minimal. I was> given quinolones by a doctor who

> > > thought it was a good way to treat> Lyme disease. I have since

> > > continuously and religiously warned all> other patients against ever

> > > taking any quinolones for any reason.> There is no point in taking

> > > such a dangerous antibiotic when others> are effective and

safer.>> >>

> > > > I believe it's crucial, especially in such a sensitive and ill>

> > > population, to give a fully disclosed and balanced view of

treatment>

> > > results, pro and con, stressing that individuals vary widely.>

>> > If

> > > we cannot do that, we should stick simply to *our own*> experience,

> > > and as fully disclosed as we are able/aware of.> ***Let me add

that my

> > > experience included 5 years of attending the> support group in

> > > Charlotte, NC. I never say any patient of Cheney> recover. They were

> > > generally all on Klonopin. I think this> observation qualifies

as some

> > > sort of experience along with many> postings of horror stories from

> > > patients trying to get of Klonopin.>> a Carnes>> [Non-text

> > > portions of this message have been removed]

> > >

> > > __________________________________________________________

> > > Search that pays you back! Introducing Live Search cashback.

> > >

> >

http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyoubac\

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> >

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> >

> > >

> >

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> >

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> > >

> > >

[Guest guest]

,

In a post elsewhere, in the days before Helen died, she mentioned having

switched from Lyrica to Neurontin, and spoke of Klonopin only in the past tense.

I will write to you by email.

TC,

Katrina

>>

> > Katrina, Look for brief replies with ***> > I do not think it's fair o

> > make such a declarative statement on> this list. particularly when I'm

> > sure you're aware that Klonopin has> been used successfully by many

> > CFS patients over the years to relieve> some of the most horrific

> > symptoms we have.> ***I do not know one cfids patient in 13 years who

> > has recovered in> any way on klonopin. Did it relieve symptoms? The

> > patients I knew on> it generally were zombies.>> >> > A different

> > matter is to post known side effects (common or rare),> or one's own

> > individual adverse reaction (mild or severe), as you did> re Lyrica.

> > That is very important information.> ***I am not free to repost emails

> > I have on file of other patients> who had severe withdrawal issues

> > with klonopin. I cannot post my own> experience in that regard as I

> > never was willing to risk myself and> take it.>> >> > Klonopin is a

> > top prescribed medication by Specialists in both CFS> and Dystonia,

> > which I also have. I have seen scores of people's> experiences for

> > many many years in both populations.> >> > The range of results is as

> > wide as the difference between night and> day. I also have personal

> > friends who have had the very best,> dramatic success, altering their

> > lives significnificantly in a> positive way, and who've the most

> > terrible nightmare experiences> (mainly in coming off of long term and

> > not-low doses).> ***This was one of my points - it does relieve

> > symptoms, but the> risks are very serious.>> >> > My own experience

> > with Klonopin is that many years ago, with less> knowledge about

> > dosing, I began on a " normal " dose. I experienced> sedation and

> > depression. Therefore after a brief trial, I left it for> years, never

> > planning to go near it again.> >> > Due to serious concerns about

> > progression of damage being reported> in CFS brains, and my horrible

> > sensory overload, (plus other patient'> positive results), I

> > re-visited Klonopin.> >> > By then I had learned I am so exquisitely

> > sensitive to drugs, that> at miniscule doses, I have rather immediate

> > results, whether pro or> con.> >> > At extremely low dose, (1/4 of a

> > .5, it instantly gave me a tool> for the horrible sensory overload.

> > And an added one for my horrific> muscle contractions.> >> > I also

> > have an improvement in cognitive and communicative skills.> ***The

> > point is - when you go off it your brain is NO BETTER and may> be

> > worse. That is a huge risk to relieve symptoms. Hey, I would take> it

> > too, if I had to. I am taking 75mg of Lyrica at night, but I am> fully

> > aware it will cure NOTHING and is protecting NOTHING. It is> causing

> > ongoing damage. Like you, I cannot tolerate the nerve> problems I now

> > have without it. These nerve problems in my case were> CAUSED by

> > quinolones and perhaps a viral infection 2 years ago that> was

> > unrelated to cfids or Lyme, as far as we can determine.>> >> > Becasue

> > of Dr. Cheney's use of it for Neuroprotection, I began with> the same

> > dose at night, moving to .5 every night. When I skip it, my> brain is

> > again over-firing the next day.> ****There is no documentation that it

> > protects anything. None. It> does help one get through the day or

> > night.>> >> > I use the 1/4 sometimes in the day time, and on ocassion

> > a little> more, or one other dose.> >> > I have never had any of the

> > side effects on the list you posted.> >> > Sometimes I would like to

> > try more becasue of brain damage concerns> and pain in my brain.> >> >

> > But I've remained at this very cautious dose for 3 reasons:> >> > A)

> > My previous depression response> >> > My MCS response to nearly

> > everything> >> > C) The horrific time that others have had in going

> > off of it.> >> > I prefer to use non-chemical interventions, so

> > whenever possible I> take those that have worked, in addition or try

> > new things. Blockers> of NMDA receptors are very helpful to me, and

> > other things.> >> > I always recommend that PWCs (or anyone) begin

> > pharmaceuticals at> far lower doses than normally prescribed. Both to

> > accurately monitor> and prevent negative effects, and becasue we often

> > do not need more> than minute doses to benefit.> >> > If I know

> > someone on Klonopin who has depression, I make sure to> tell them my

> > experience, and watch for that myself.> >> > a, over the years,

> > you have rather adamantly recommended some> pharmaceuticals that many

> > can not tolerate or which have caused> serious damage to some, even

> > your own self.> ***The only damage I have ever had was from quinolone

> > antibiotics> WHICH I NEVER RECOMMENDED TO ANYONE. What I have

> > recommended was the> old Roadback Foundation protocol of low dose,

> > pulsed minocyline and> Zithromax, low dose. The risk of these

> > antibiotics is minimal. I was> given quinolones by a doctor who

> > thought it was a good way to treat> Lyme disease. I have since

> > continuously and religiously warned all> other patients against ever

> > taking any quinolones for any reason.> There is no point in taking

> > such a dangerous antibiotic when others> are effective and safer.>> >>

> > > I believe it's crucial, especially in such a sensitive and ill>

> > population, to give a fully disclosed and balanced view of treatment>

> > results, pro and con, stressing that individuals vary widely.> >> > If

> > we cannot do that, we should stick simply to *our own*> experience,

> > and as fully disclosed as we are able/aware of.> ***Let me add that my

> > experience included 5 years of attending the> support group in

> > Charlotte, NC. I never say any patient of Cheney> recover. They were

> > generally all on Klonopin. I think this> observation qualifies as some

> > sort of experience along with many> postings of horror stories from

> > patients trying to get of Klonopin.>> a Carnes>> [Non-text

> > portions of this message have been removed]

> >

> > __________________________________________________________

> > Search that pays you back! Introducing Live Search cashback.

> >

http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyoubac\

k

> >

<http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyouba\

ck>

> >

> >

[Guest guest]

As I said before, I was on klonopin, prescribed by several doctors

including Dr. Cheney, for more than 16 years. I began to have terrible

problems with it, being unable to sleep, muscle spasms, headaches, and

other problems, and decided to go off it. It took me two years to get

completely off. I have been off klonopin for more than a year now and I

did not experience the dire consequences to which Dr. Cheney refers. In

addition, I am now able to sleep without medications. I do not make any

attempt to generalize my experiences into advice for others. I am

simply stating my experience.

idarchetype2000 wrote:

>

> I am not sure where I stand on the klonopin issue, but ironically my

> new computer has a program that has been trying to clean out old email

> and a message I sent to myself 2 yrs ago was brought to my attention,

> I don't know where I got the interview with cheney or how old it is

> but this is verbatiom what I copied and sent myself from somehting I

> found on the web. If any people more familiar with cheney and klonopin

> want to comment please do and if the moderator feels its too long I

> humbly accept, it just struck me as so fitting to questions in these

> threads right now about k.

> begin excerpt:

>

> ** " On the other hand, trouble arises when someone who still has an

> injured

> brain tries to come off Klonopin. It's like a thyroid patient stopping

> their

> thyroid medication. Dr. Cheney warned, " All hell breaks loose " . However,

> it's not because the drug is addicting, and it's not withdrawal. The

> condition still exists, and the body lets you know it has a legitimate

> physical need for the drug. Cheney stated, " When a CFIDS patient who is

> still experiencing the underlying mechanisms of brain injury goes off

> Klonopin, there is a burst of excess neural firing and cell death. That's

> the havoc we hear about that is mistakenly called withdrawal. "

>

> whole article:

> Many CFIDS specialists prescribe the drug Klonopin. In the October 1999

> issue of The Fibromyalgia Network, nine CFS/FM specialists summarized

> their

> most effective treatments, and six included Klonopin. Interestingly, the

> three who did not are primarily FM specialists.

>

> Dr. Cheney prescribes Klonopin to address a condition associated with

> CFIDS

> called " excitatory neurotoxicity. " To explain this condition to

> patients, he

> draws a line with " seizure " on the far left and " coma " on the far

> right. A

> big dot in the middle represents where healthy people are when awake.

> A dot

> somewhat to the right of the middle indicates where healthy people are

> when

> asleep -- slightly shifted toward coma. He highlights in red the left

> portion

> of the line, from seizure to the middle, and labels it " Neurotoxic State "

> (damaging to the brain). He highlights in blue the right portion of the

> line, from coma to the middle, and labels it " Healing State. "

>

> In CFIDS, an ongoing injury to the brain shifts patients toward

> seizure. A

> dot to the left of the middle, marked " injury, " represents the

> position of

> CFIDS patients. This puts us in the red " Neurotoxic " zone. When we shift

> toward seizure, we often experience " sensory overload. " It's as if our

> brain's " radar " is too sensitive. Our neurons (nerve cells) are sensing

> stimuli and firing when they should not. This causes amplification of

> sensory input. Light, noise, motion and pain are all magnified. At the

> beginning of their illness, many patients report feeling exhausted,

> yet also

> strangely " wired. " The " wired " feeling is the slight shift towards

> seizure

> that occurs as a result of the excitatory neurotoxicity.

>

> Cheney frequently uses the term " threshold potential " when discussing

> excitatory neurotoxicity. (Think of the threshold - bottom - of a

> doorway.

> The lower it is, the more accessible it is. When it is at floor level,

> everything can enter. When it is raised, access is restricted to taller

> people. If it is too high, no one can enter.) Threshold potential

> refers to

> how much stimulus it takes to make neurons fire. If the threshold

> potential

> is too low, even slight stimulation is " allowed to enter " and is

> detected by

> the neurons. This causes the neurons to fire, resulting in sensory

> overload.

> If the threshold is dropped to nothing, all stimuli get through and the

> neurons fire continuously, resulting in a seizure. If the threshold is

> raised, only stronger stimuli can make neurons fire. A healthy person's

> threshold potential naturally rises at bedtime, promoting sleep. If the

> threshold potential is too high, you feel drugged or drowsy. If the

> threshold potential is raised extremely high, coma results.

>

> Two receptors in the brain, NMDA and GABA, determine the threshold

> potential. During the waking hours of a healthy person, NMDA and GABA

> should

> be equally active. This balances the person in the middle of the

> seizure/coma continuum. NMDA stimulates, and GABA inhibits. If NMDA

> increases, one moves toward seizure. If GABA increases, one moves toward

> coma.

>

> In CFIDS, NMDA is more activated than GABA, lowering the threshold

> potential. This causes neurons to fire with very little stimulation,

> resulting in sensory overload. This condition of excitatory

> neurotoxicity is

> dangerous. Dr. Cheney emphasizes that in an attempt to protect itself,

> the

> body will eventually kill neurons that fire excessively. He states that

> brain cell loss can result if this condition isn't addressed.

>

> How can the brain be protected against excitatory neurotoxicity?

> Klonopin.

> This long acting benzodiazepine has been Dr. Cheney's most effective drug

> for CFIDS over the years. He believes that Klonopin and the supplement

> magnesium may be two of the most important treatments for CFIDS patients

> because of their neuroprotective qualities. He recommends two or more

> 0.5 mg

> tablets of Klonopin at night. Paradoxically, very small doses (usually a

> quarter to a half a tablet) in the morning and mid-afternoon improve

> cognitive function and energy. If the daytime dose is low enough, you'll

> experience greater clarity and think better. If the daytime dose is too

> high, you'll become drowsy. Adjust your dose for maximum benefit,

> taking as

> much as possible without drowsiness. Adjust the morning dose first, then

> take the same amount mid-afternoon if needed, then take three to four

> times

> the morning dose at bedtime. Dr. Cheney recommends doubling the dose

> during

> severe relapses.

>

> Dr. Cheney most frequently prescribes the combination of Klonopin and

> Doxepin, along with the supplement " Magnesium Glycinate Forte. " Magnesium

> Glycinate alone is a good choice for the more budget

> minded(www.ImmuneSupport.com sells it as " Magnesium Plus " .) A common

> dosage

> of magnesium is 200 mgs at bedtime. Too much magnesium can cause

> diarrhea,

> though glycinate is usually the best tolerated form.

>

> Cheney prescribes Doxepin in the form of a commercial elixir

> (10mg/ml). At

> low doses, this tricyclic antidepressant acts as a very potent

> antihistamine

> and immune modulator. Doxepin acts synergistically with Klonopin to

> assist

> sleep, and may improve pain. Patients tend to be very sensitive to

> Doxepin,

> which can cause morning fog and fatigue if the dose is too high (5 to

> 10 mg

> or higher). He recommends starting at two drops a night and gradually

> increasing the dose until " morning fog " becomes a problem. Most patients

> can't tolerate more than half a cc.

>

> On a handout entitled " Neuroprotection via Threshold Potentials, " Cheney

> lists six substances that can protect the brain. Under the category " NMDA

> Blockers " Cheney lists:

>

> 1. Parenteral magnesium and taurine (intramuscular injections of

> magnesium

> and taurine, usually given with procaine) 2. Histamine blockers (Doxepin

> Elixir) Under the category " GABA Agonists " (increases GABA) Cheney

> lists: 3.

> Klonopin 4. Neurontin 5. Kava Kava 6. Valerian Root

>

> Klonopin is taken " day and night " ; Neurontin " night, or day and

> night " ; kava

> kava " daytime only " ; and valerian " nighttime only. " The first four are by

> prescription, the last two are herbs. In my limited experience, only

> certain

> patients are put on magnesium/taurine injections, and then only for a

> limited period before switching to oral supplements.

>

> Many myths abound concerning Klonopin. When asked about these myths, Dr.

> Cheney shared the following information.

>

> MYTH NUMBER ONE: THE GENERIC IS JUST AS GOOD.

>

> When the generic Clonazepam came on the market, many patients switched

> to it

> because it was less expensive than Klonopin. Cheney then began hearing

> that

> most patients had to take more Clonazepam to get the same effect.

> Generics

> aren't exactly identical to the original products, and with most drugs

> the

> slight variations don't matter. However, most CFIDS patients can tell the

> difference between Klonopin and its generic form, Clonazepam. Most find

> Klonopin to be more effective.

>

> MYTH NUMBER TWO: KLONOPIN IS ADDICTIVE.

>

> Dr. Cheney was adamant that Klonopin is not addictive. In treating

> thousands

> of patients, he has never seen a patient become addicted to Klonopin. He

> reviewed the definition of addiction, stating that it involves: (1)

> psychosocial disruption, (2) accelerated use, (3) inappropriate use,

> and (4)

> drug seeking behavior.

>

> Dr. Cheney said a case might be made that Klonopin is habituating.

> It's true

> that it can't be stopped suddenly. You must taper off of it gradually.

> However, he was cautious about even calling it habituating. The

> process of

> tapering off a drug is not the same thing as withdrawal, a term that

> implies

> addiction.

>

> Dr. Cheney said to keep in mind that Klonopin is given for a

> physiological

> problem -- excitatory neurotoxicity. It's prescribed to adjust the

> threshold

> potential: to keep neurons from firing inappropriately and being

> destroyed.

> He stressed that Klonopin should never be given unless you intend to

> raise

> the threshold potential. He stated, " Problems arise when you begin to use

> benzodiazapines for reasons other than threshold manipulation. " However,

> CFIDS patients have a " threshold potential aberration " and need

> Klonopin (or

> something similar) to avoid brain injury. Dr. Cheney has never seen a

> recovered patient have difficulty coming off Klonopin. He stated,

> " When you

> no longer need the drug, coming off it is very easy. "

>

> On the other hand, trouble arises when someone who still has an injured

> brain tries to come off Klonopin. It's like a thyroid patient stopping

> their

> thyroid medication. Dr. Cheney warned, " All hell breaks loose " . However,

> it's not because the drug is addicting, and it's not withdrawal. The

> condition still exists, and the body lets you know it has a legitimate

> physical need for the drug. Cheney stated, " When a CFIDS patient who is

> still experiencing the underlying mechanisms of brain injury goes off

> Klonopin, there is a burst of excess neural firing and cell death. That's

> the havoc we hear about that is mistakenly called withdrawal. "

>

> MYTH NUMBER THREE: KLONOPIN DISRUPTS STAGE 4 SLEEP.

>

> Dr. Cheney said that he honestly doesn't understand this concern. He

> believes Klonopin might disrupt the sleep of people who take it for

> conditions other than the threshold potential aberration found in

> CFIDS. He

> also acknowledged that if you are looking just for drugs to facilitate

> sleep, Klonopin is certainly not the first one to come to mind, nor

> should

> it be used to induce sleep in " ordinary " patients. It's not a sleep

> drug per

> se. However, a large part of the sleep disorder of CFIDS is excitatory

> neurotoxicity and the resulting shift toward seizure. If you treat this

> condition with Klonopin, then you have treated a large part of the sleep

> disorder in CFIDS. Most importantly, he said he simply does not see

> stage 4

> sleep disruption in his patients on Klonopin.

>

> Towards the end of this discussion on Klonopin, Cheney smiled, and

> remarked,

> " But suppose I'm wrong about the brain injury and the threshold potential

> aberration and the shift toward seizure? What if I'm wrong about your

> need

> for Klonopin? I'm absolutely sure I'm right, but what's the worst case

> scenario? Do you know what long-term studies on Klonopin have shown?

> Reduced

> incidence of Alzheimer's Disease. Alzheimer's Disease is a complicated

> and

> convoluted way of knocking out your neurons, and Klonopin protects your

> neurons. Now it's believed that Klonopin didn't actually stop

> Alzheimer's.

> It just delayed its onset so long that everyone died of something else

> before they ever got it - which is to say you won't get Alzheimer's.

> You'll

> die of something else first. "

>

> The last question Cheney addressed concerned the dose: what happens if

> the

> dose is too high? He said the only down side was that if you took a

> little

> too much (we are not talking overdose here) it would shift you toward

> coma

> on the continuum. It would shut your brain down to some degree, and thus

> impact your ability to function. This is inconvenient, but it's not

> harmful.

> In fact, it shifts you into the " healing state " on the continuum. You may

> feel like a zombie, but your brain is protected and your neurons are not

> getting fried. However, not being able to function isn't an option for

> most

> of us, so we need to find the maximum dose that doesn't make us drowsy.

>

> Dr. Cheney emphasized that Klonopin, Doxepin, and magnesium are very,

> very

> good at protecting the brain from cell death due to excess firing.

> However,

> they can't stop the underlying mechanisms of CFIDS that are injuring the

> brain in the first place.

>

> Though it can't stop the underlying mechanisms causing the injury,

> Klonopin

> can protect your brain and keep your neurons from being destroyed.

> Then, as

> Cheney put it, " When you come out on the other side of this, you'll have

> more of your brain left. "

>

> end excerpt

>

> >>

> > > > Katrina, Look for brief replies with ***> > I do not think it's

> fair o

> > > > make such a declarative statement on> this list. particularly

> when I'm

> > > > sure you're aware that Klonopin has> been used successfully by many

> > > > CFS patients over the years to relieve> some of the most horrific

> > > > symptoms we have.> ***I do not know one cfids patient in 13

> years who

> > > > has recovered in> any way on klonopin. Did it relieve symptoms? The

> > > > patients I knew on> it generally were zombies.>> >> > A different

> > > > matter is to post known side effects (common or rare),> or one's own

> > > > individual adverse reaction (mild or severe), as you did> re Lyrica.

> > > > That is very important information.> ***I am not free to repost

> emails

> > > > I have on file of other patients> who had severe withdrawal issues

> > > > with klonopin. I cannot post my own> experience in that regard as I

> > > > never was willing to risk myself and> take it.>> >> > Klonopin is a

> > > > top prescribed medication by Specialists in both CFS> and Dystonia,

> > > > which I also have. I have seen scores of people's> experiences for

> > > > many many years in both populations.> >> > The range of results

> is as

> > > > wide as the difference between night and> day. I also have personal

> > > > friends who have had the very best,> dramatic success, altering

> their

> > > > lives significnificantly in a> positive way, and who've the most

> > > > terrible nightmare experiences> (mainly in coming off of long

> term and

> > > > not-low doses).> ***This was one of my points - it does relieve

> > > > symptoms, but the> risks are very serious.>> >> > My own experience

> > > > with Klonopin is that many years ago, with less> knowledge about

> > > > dosing, I began on a " normal " dose. I experienced> sedation and

> > > > depression. Therefore after a brief trial, I left it for> years,

> never

> > > > planning to go near it again.> >> > Due to serious concerns about

> > > > progression of damage being reported> in CFS brains, and my horrible

> > > > sensory overload, (plus other patient'> positive results), I

> > > > re-visited Klonopin.> >> > By then I had learned I am so exquisitely

> > > > sensitive to drugs, that> at miniscule doses, I have rather

> immediate

> > > > results, whether pro or> con.> >> > At extremely low dose, (1/4 of a

> > > > .5, it instantly gave me a tool> for the horrible sensory overload.

> > > > And an added one for my horrific> muscle contractions.> >> > I also

> > > > have an improvement in cognitive and communicative skills.> ***The

> > > > point is - when you go off it your brain is NO BETTER and may> be

> > > > worse. That is a huge risk to relieve symptoms. Hey, I would

> take> it

> > > > too, if I had to. I am taking 75mg of Lyrica at night, but I am>

> fully

> > > > aware it will cure NOTHING and is protecting NOTHING. It is> causing

> > > > ongoing damage. Like you, I cannot tolerate the nerve> problems

> I now

> > > > have without it. These nerve problems in my case were> CAUSED by

> > > > quinolones and perhaps a viral infection 2 years ago that> was

> > > > unrelated to cfids or Lyme, as far as we can determine.>> >> >

> Becasue

> > > > of Dr. Cheney's use of it for Neuroprotection, I began with> the

> same

> > > > dose at night, moving to .5 every night. When I skip it, my>

> brain is

> > > > again over-firing the next day.> ****There is no documentation

> that it

> > > > protects anything. None. It> does help one get through the day or

> > > > night.>> >> > I use the 1/4 sometimes in the day time, and on

> ocassion

> > > > a little> more, or one other dose.> >> > I have never had any of the

> > > > side effects on the list you posted.> >> > Sometimes I would like to

> > > > try more becasue of brain damage concerns> and pain in my

> brain.> >> >

> > > > But I've remained at this very cautious dose for 3 reasons:> >> > A)

> > > > My previous depression response> >> > My MCS response to nearly

> > > > everything> >> > C) The horrific time that others have had in going

> > > > off of it.> >> > I prefer to use non-chemical interventions, so

> > > > whenever possible I> take those that have worked, in addition or try

> > > > new things. Blockers> of NMDA receptors are very helpful to me, and

> > > > other things.> >> > I always recommend that PWCs (or anyone) begin

> > > > pharmaceuticals at> far lower doses than normally prescribed.

> Both to

> > > > accurately monitor> and prevent negative effects, and becasue we

> often

> > > > do not need more> than minute doses to benefit.> >> > If I know

> > > > someone on Klonopin who has depression, I make sure to> tell them my

> > > > experience, and watch for that myself.> >> > a, over the years,

> > > > you have rather adamantly recommended some> pharmaceuticals that

> many

> > > > can not tolerate or which have caused> serious damage to some, even

> > > > your own self.> ***The only damage I have ever had was from

> quinolone

> > > > antibiotics> WHICH I NEVER RECOMMENDED TO ANYONE. What I have

> > > > recommended was the> old Roadback Foundation protocol of low dose,

> > > > pulsed minocyline and> Zithromax, low dose. The risk of these

> > > > antibiotics is minimal. I was> given quinolones by a doctor who

> > > > thought it was a good way to treat> Lyme disease. I have since

> > > > continuously and religiously warned all> other patients against ever

> > > > taking any quinolones for any reason.> There is no point in taking

> > > > such a dangerous antibiotic when others> are effective and

> safer.>> >>

> > > > > I believe it's crucial, especially in such a sensitive and ill>

> > > > population, to give a fully disclosed and balanced view of

> treatment>

> > > > results, pro and con, stressing that individuals vary widely.>

> >> > If

> > > > we cannot do that, we should stick simply to *our own*> experience,

> > > > and as fully disclosed as we are able/aware of.> ***Let me add

> that my

> > > > experience included 5 years of attending the> support group in

> > > > Charlotte, NC. I never say any patient of Cheney> recover. They were

> > > > generally all on Klonopin. I think this> observation qualifies

> as some

> > > > sort of experience along with many> postings of horror stories from

> > > > patients trying to get of Klonopin.>> a Carnes>> [Non-text

> > > > portions of this message have been removed]

> > > >

> > > > __________________________________________________________

> > > > Search that pays you back! Introducing Live Search cashback.

> > > >

> > >

>

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> > >

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>

> > >

> > > >

> > >

>

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> > > >

> > > >

[Guest guest]

do you have a hole in your heart?

>>

> > > > > Katrina, Look for brief replies with ***> > I do not think it's

> > fair o

> > > > > make such a declarative statement on> this list. particularly

> > when I'm

> > > > > sure you're aware that Klonopin has> been used successfully

by many

> > > > > CFS patients over the years to relieve> some of the most

horrific

> > > > > symptoms we have.> ***I do not know one cfids patient in 13

> > years who

> > > > > has recovered in> any way on klonopin. Did it relieve

symptoms? The

> > > > > patients I knew on> it generally were zombies.>> >> > A

different

> > > > > matter is to post known side effects (common or rare),> or

one's own

> > > > > individual adverse reaction (mild or severe), as you did> re

Lyrica.

> > > > > That is very important information.> ***I am not free to repost

> > emails

> > > > > I have on file of other patients> who had severe withdrawal

issues

> > > > > with klonopin. I cannot post my own> experience in that

regard as I

> > > > > never was willing to risk myself and> take it.>> >> >

Klonopin is a

> > > > > top prescribed medication by Specialists in both CFS> and

Dystonia,

> > > > > which I also have. I have seen scores of people's>

experiences for

> > > > > many many years in both populations.> >> > The range of results

> > is as

> > > > > wide as the difference between night and> day. I also have

personal

> > > > > friends who have had the very best,> dramatic success, altering

> > their

> > > > > lives significnificantly in a> positive way, and who've the most

> > > > > terrible nightmare experiences> (mainly in coming off of long

> > term and

> > > > > not-low doses).> ***This was one of my points - it does relieve

> > > > > symptoms, but the> risks are very serious.>> >> > My own

experience

> > > > > with Klonopin is that many years ago, with less> knowledge about

> > > > > dosing, I began on a " normal " dose. I experienced> sedation and

> > > > > depression. Therefore after a brief trial, I left it for> years,

> > never

> > > > > planning to go near it again.> >> > Due to serious concerns

about

> > > > > progression of damage being reported> in CFS brains, and my

horrible

> > > > > sensory overload, (plus other patient'> positive results), I

> > > > > re-visited Klonopin.> >> > By then I had learned I am so

exquisitely

> > > > > sensitive to drugs, that> at miniscule doses, I have rather

> > immediate

> > > > > results, whether pro or> con.> >> > At extremely low dose,

(1/4 of a

> > > > > .5, it instantly gave me a tool> for the horrible sensory

overload.

> > > > > And an added one for my horrific> muscle contractions.> >> >

I also

> > > > > have an improvement in cognitive and communicative skills.>

***The

> > > > > point is - when you go off it your brain is NO BETTER and

may> be

> > > > > worse. That is a huge risk to relieve symptoms. Hey, I would

> > take> it

> > > > > too, if I had to. I am taking 75mg of Lyrica at night, but I am>

> > fully

> > > > > aware it will cure NOTHING and is protecting NOTHING. It is>

causing

> > > > > ongoing damage. Like you, I cannot tolerate the nerve> problems

> > I now

> > > > > have without it. These nerve problems in my case were> CAUSED by

> > > > > quinolones and perhaps a viral infection 2 years ago that> was

> > > > > unrelated to cfids or Lyme, as far as we can determine.>> >> >

> > Becasue

> > > > > of Dr. Cheney's use of it for Neuroprotection, I began with> the

> > same

> > > > > dose at night, moving to .5 every night. When I skip it, my>

> > brain is

> > > > > again over-firing the next day.> ****There is no documentation

> > that it

> > > > > protects anything. None. It> does help one get through the

day or

> > > > > night.>> >> > I use the 1/4 sometimes in the day time, and on

> > ocassion

> > > > > a little> more, or one other dose.> >> > I have never had

any of the

> > > > > side effects on the list you posted.> >> > Sometimes I would

like to

> > > > > try more becasue of brain damage concerns> and pain in my

> > brain.> >> >

> > > > > But I've remained at this very cautious dose for 3 reasons:>

>> > A)

> > > > > My previous depression response> >> > My MCS response to

nearly

> > > > > everything> >> > C) The horrific time that others have had

in going

> > > > > off of it.> >> > I prefer to use non-chemical interventions, so

> > > > > whenever possible I> take those that have worked, in

addition or try

> > > > > new things. Blockers> of NMDA receptors are very helpful to

me, and

> > > > > other things.> >> > I always recommend that PWCs (or anyone)

begin

> > > > > pharmaceuticals at> far lower doses than normally prescribed.

> > Both to

> > > > > accurately monitor> and prevent negative effects, and becasue we

> > often

> > > > > do not need more> than minute doses to benefit.> >> > If I know

> > > > > someone on Klonopin who has depression, I make sure to> tell

them my

> > > > > experience, and watch for that myself.> >> > a, over the

years,

> > > > > you have rather adamantly recommended some> pharmaceuticals that

> > many

> > > > > can not tolerate or which have caused> serious damage to

some, even

> > > > > your own self.> ***The only damage I have ever had was from

> > quinolone

> > > > > antibiotics> WHICH I NEVER RECOMMENDED TO ANYONE. What I have

> > > > > recommended was the> old Roadback Foundation protocol of low

dose,

> > > > > pulsed minocyline and> Zithromax, low dose. The risk of these

> > > > > antibiotics is minimal. I was> given quinolones by a doctor who

> > > > > thought it was a good way to treat> Lyme disease. I have since

> > > > > continuously and religiously warned all> other patients

against ever

> > > > > taking any quinolones for any reason.> There is no point in

taking

> > > > > such a dangerous antibiotic when others> are effective and

> > safer.>> >>

> > > > > > I believe it's crucial, especially in such a sensitive and

ill>

> > > > > population, to give a fully disclosed and balanced view of

> > treatment>

> > > > > results, pro and con, stressing that individuals vary widely.>

> > >> > If

> > > > > we cannot do that, we should stick simply to *our own*>

experience,

> > > > > and as fully disclosed as we are able/aware of.> ***Let me add

> > that my

> > > > > experience included 5 years of attending the> support group in

> > > > > Charlotte, NC. I never say any patient of Cheney> recover.

They were

> > > > > generally all on Klonopin. I think this> observation qualifies

> > as some

> > > > > sort of experience along with many> postings of horror

stories from

> > > > > patients trying to get of Klonopin.>> a Carnes>> [Non-text

> > > > > portions of this message have been removed]

> > > > >

> > > > > __________________________________________________________

> > > > > Search that pays you back! Introducing Live Search cashback.

> > > > >

> > > >

> >

http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyoubac\

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> >

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> >

> > > >

> >

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> >

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> >

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> > > > >

> > > >

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> > > > >

> > > > >

[Guest guest]

>

> I am not sure where I stand on the klonopin issue, but ironically

my new computer has a program that has been trying to clean out old

email and a message I sent to myself 2 yrs ago was brought to my

attention, I don't know where I got the interview with cheney or

how old it is but this is verbatiom what I copied and sent myself

from somehting I found on the web. to go faster and suffer a little.

> > >

Hi,

Thanks for posting this. I remember this! It was a little

frightening to me because I was brain-fogged and couldn't grasp the

concept of coma vs seizure (well, I could grasp it but didn't like

it).

I cut out a paragraph because I wanted to make a comment based on

our recent conversations on the board.

This paragraph seems to me to equate Klonipin to us as insulin is to

a diabetic. They can be very ill until the insulin is

administered. So, one could argue that they are " addicted " to

insulin.

I am beginning to view Klonipin as insulin for our off-balance brain

chemistry. I have been intending to deal with gluatamate/GABA

through diet (removing excitotoxins, not easy) to supplementing with

GABA.

" The last question Cheney addressed concerned the dose: what happens

if the dose is too high? He said the only down side was that if you

took a little too much (we are not talking overdose here) it would

shift you toward coma on the continuum. It would shut your brain

down to some degree, and thus impact your ability to function. This

is inconvenient, but it's not harmful. In fact, it shifts you into

the " healing state " on the continuum. You may feel like a zombie,

but your brain is protected and your neurons are not getting fried.

However, not being able to function isn't an option for most of us,

so we need to find the maximum dose that doesn't make us drowsy. "

I have recently found out from an autistic child's mom that

removing excitotoxins from diet does not necessarily correct the

imbalance (as countless autistic children's parents have learned).

The brain seems to generate the imbalance. Having said that, I have

gone off excitotoxins for two weeks and then visited a friend for

Memorial Day and a few things had chemicals. I recognized

the " wired, but tired " issues returning and had much difficulty

sleeping, again. Didn't last more than the one night. So, diet may

help, I suggest reading Dr. Blaylocks's book and googling

Feingold Diet.

So if Cheney and others are correct, then Klonipin or GABA would be

a lifetime supplement and if we begin to feel drowsy over time then

it is possible that would be able to get off Klonipin.

AND, if our brains had resolved the issue, then withdrawl would be

easy and not the painful process that we hear and read about.

Are my assumptions on target?

I would be willing to submit a set of questions to Dr.

Baraniuk regarding Klonipin if someone will help me generate a

concise list. Here's a few to start with....

1. Is GABA/Glumatate issue generated in brain or or a metabolic

issue controlled by diet?

2. Is Klonipin a substance that is correcting (cure) an imbalance

or is " bypassing " the cause of the imbalance (treatment) and

therefore a lifelong requirement?

3. Would withdrawal for a normal person without GABA/glutamate

imbalance be easy and free of symptoms? Therefore, if ME/CFS patient

needs Klonipin, withdrawal would be painful.

Cort, did you and Dr. B. have a conversation re: Klonipin? I would

have loved to have been in the room during your conversation - I bet

it was enlightening (in terms of the future of research).

Marti

[Guest guest]

One problem with clonazepam (Klonopin) is that you become dependent on it, and

if you

have to stop it suddenly you can have have severe--even dangerous--withdrawal

symptoms.

In New York State it is a controlled substance, a Class IV (I think) drug. The

doctor has to

make a carbon copy of the prescription and send it to the state. This seems to

make some

doctors very nervous about prescribing it, and they can change their minds on a

whim,

which leaves the patient in a very bad position. Other doctors have been known

to use it as

a sort of blackmail: Do such-and-such or I won't renew your clonazepam

prescription.

So you start on clonazepam at a low dose, and after a while you need a higher

dose just to

get the same benefits. Your brain, which might have been functioning somewhat

normally

to begin with, loses the ability to perform certain functions--and when the

clonazepam is

withdrawn you will probably be more sensitive to sound, light and color than you

were. If

you have to go off clonazepam " cold turkey, " this sensitivity can increase to

disastrous

levels.

And one other thing. Many people report that after a while, clonazepam seems to

cause

severe insomnia, in addition to a sort of fog and sometimes depression.

It's not like taking a vitamin. Anyone who is thinking of initiating a lifelong

dependence on

this drug should do some reading on the downsides first.

Sue B.

[Guest guest]

Clonazepam can be a real life saver. Like all -zepam drugs you have to be aware

and sensible but I am getting a bit tired of the

let's-get-thrills-and-get-scared with clonazepam.

Not everybody becomes dependent. I have been taking it, on and off for years and

I take whatever I need, especially useful for bad face and head neuralgia (bad,

bad, bad and only clonazepam helps, like today for eg).

Every drug has possible side effect/undesirable effects otherwise they wouldn't

be active substances. Every time you take a drug, you take a risk, just have to

balance benefits/risks and be sensitive to how your body reacts.

Nelly

Re: Klonopin

One problem with clonazepam (Klonopin) is that you become dependent on it, and

if you

have to stop it suddenly you can have have severe--even dangerous--withdrawal

symptoms.

In New York State it is a controlled substance, a Class IV (I think) drug.

The doctor has to

make a carbon copy of the prescription and send it to the state. This seems to

make some

doctors very nervous about prescribing it, and they can change their minds on

a whim,

which leaves the patient in a very bad position. Other doctors have been known

to use it as

a sort of blackmail: Do such-and-such or I won't renew your clonazepam

prescription.

So you start on clonazepam at a low dose, and after a while you need a higher

dose just to

get the same benefits. Your brain, which might have been functioning somewhat

normally

to begin with, loses the ability to perform certain functions--and when the

clonazepam is

withdrawn you will probably be more sensitive to sound, light and color than

you were. If

you have to go off clonazepam " cold turkey, " this sensitivity can increase to

disastrous

levels.

And one other thing. Many people report that after a while, clonazepam seems

to cause

severe insomnia, in addition to a sort of fog and sometimes depression.

It's not like taking a vitamin. Anyone who is thinking of initiating a

lifelong dependence on

this drug should do some reading on the downsides first.

Sue B.

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

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.