klonopin

[Guest guest]

Hi all,

I've been wondering how people feel about the drug Klonopin. I have been on

it for almost three years now, and want like anything to get off of it. I

take only .25 mg. a day, but it is still nearly impossible for me to quit.

If I taper back even the smallest amount, I start having severe " rebound

REM, " which I have heard is a phenomenon of cutting back on Klonopin. In

other words, my dreams get so frequent and so wacked out that I can't sleep

at all. I shave the tiniest amount off my normal dosage, and this happens.

But the problem is, it doesn't seem to get better. I have tapered back to

1/3 of the dose above, numerous times, and have had such severe withdrawl

that I kept dosing back up. I have heard from many CFIDS patients that this

drug is impossible to get off of. I am also really beginning to question

Cheney's whole approach to CFIDS, and he seems to be the one pushing the

notion that Klonopin prevents further brain injury. My questsions are these:

1) how have others successfully and responsibly gotten off of klonopin

2) do others think this drug is prescribed irresponsibly with CFIDS patients

3) have others noticed that people jump on Cheney's bandwagon a little too

quickly

I'm curious about other people's thoughts on this.

Thanks,

Peggy

[Guest guest]

In a message dated 10/16/99 12:13:10 PM Eastern Daylight Time,

Peggomatic@... writes:

<<

I've been wondering how people feel about the drug Klonopin. >>

My daughter was on an experimental drug that was working so beautifully

(sorry, it didn't last) that she went off Klonopin cold thinking she was only

taking it to sleep). She had no problem going off because the drug corrected

most of what was going on, but not what the Klonopin was doing. She began

having multiple seizures daily. When her doctor found out she had gone off

the Klonopin, he knew why her seizure avitivity had increased so

dramatically. When there's something better out there, I don't think you'll

have a problem going off the drug.

Gail

[Guest guest]

>I've been wondering how people feel about the drug Klonopin. I have been on

>it for almost three years now, and want like anything to get off of it. I

>take only .25 mg. a day, but it is still nearly impossible for me to quit.

>If I taper back even the smallest amount, I start having severe " rebound

>REM, " I am also really beginning to question

>Cheney's whole approach to CFIDS, and he seems to be the one pushing the

>notion that Klonopin prevents further brain injury. My questsions are these:

>1) how have others successfully and responsibly gotten off of klonopin

>2) do others think this drug is prescribed irresponsibly with CFIDS patients

>3) have others noticed that people jump on Cheney's bandwagon a little too

>quickly

>>Thanks,

>Peggy

>

I have been of klonopin for 8 years for myoclonus, and have cut back from

4mg to 1mg.It wasn' t hard because I also take Trazadone, but I understand

this is very difficult drug to wean off of. This drug is used for other

things than for seizures such as mood stablizer. Considering its addicting

properties, this surprises me. I don't know how it would prevent further

brain injury - does Dr C do any testing for injury?? And what kind of

injury does he mean?

Dr. C seems to be an authority, but I have no idea if his methods work or

not - it seems that when a root cause is treated, then people are truly

helped. I have been to CFIDS doc here in MI and I am still ill, and he has

a lot of my mothers money(no way can I afford these doctors) and I have

horribly expensive supplements.

Good questions and I would also like feedback.

Take care,

Christie

[Guest guest]

onelist wrote:

>

> ---------------------------

[Guest guest]

Some people have tremendous problems coming off klonopin, others don't

seem to have any problems at all. I have cut my dose in half since

being on Ampligen because I no longer have restless leg syndrome as

strongly as I did -- instead of my legas and arms jutting out at night

sudenly, they just buzz annoyingly. So I still take a half dose.

OTOH, every time I have cut down my Ultram or Zoloft too quickly, I've

had a weird kind of zapping feeling in my head, which my pharmacist says

is caused by seratonin withdrawal, somethign that happens to maybe a

fourth of patients who are on SSRI's long term.

A psychologist friend showed me how to go off zoloft without having the

bug zapping effect -- I ALTERNATED two days full dose, one day 3/4

dose. Two days full dose, one day 3/4 dose. For two weeks. Then I

alternated one day full dose, one day 3/4 dose. For two weeks. Then I

went down to 3/4 dose for two weeks. Then it was alternating two days

3/4 dose, one day 1/2 dose. Two weeks. Then one day 3/4 dose, one day

1/2 dose. Two weeks. Then two weeks 1/2 dose. Then two days 1/2, one

day 1/4. Two weeks. One day 1/2, one day 1/4. Two weeks. Two weeks

on 1/4. Finally, two days 1/4, one day none. For two weeks. One day

1/4, one day none, for two weeks. And then ... bingo, off the drug, no

zinging in my brain.

Yes. If you add all that up, it's 22 weeks. That's five months. It

may sound like a long time, but you finally get off the drug. After

all, you were on it three years?

But I do have another question -- why do you want to go off it? I've

read that klonopin does several things that are good for PWC's. It's

also interesting to me that the reason I took it (restless leg syndrome)

is actually a form of epileptic seizures called " myclonus. " Since it

appears I had encephalitis, it's interesting that the seizures are

diminishing and almost gone. (Before I was on Ampligen, I could not go

one night without Klonopin without having the severe restless leg

syndrome problems the minute I started to fall asleep -- so, say we were

on the road and I started to fall asleep in the car, I'd have the

problems with my limbs buzzing and then jutting out. It was a family

disaster for me to run out of a prescription.) Now, I don't need it all

the time, and when I do take it, it's half of what I used to take. And

I never need it to nap during the day. So it seems to me, if it was a

type of epilepsy, which itself is caused by brain damage, then perhaps I

had brain damage from encepalitis that was cleaned up when the

encephalitis cleared up. It's the only explanation I can come up with.

But what I'm trying to say is maybe klonopin is doing something good for

you, and that's what your body is trying to tell you. Why do you want

to go off it?

Schweitzer

mailto:schweit2@...

[Guest guest]

In a message dated 11/17/99 3:38:07 PM Eastern Standard Time,

berry@... writes:

<< Has anyone else out there investigated more " natural " alternatives to

treating the GABA receptor problem in CFS, >>

The one CFS/FMS specialist who has done the most work with alternatives in

this area is Jay Goldstein, M.D. in California. I don't know where you live,

but you may want to look into this.

Gail

[Guest guest]

i've got no business buttin' in here because i've never taken klonopin,

but i'm going to throw my .02 in anyway :-) if my sleep disturbance was

any worse, i wouldn't hesitate to take the klonopin. actually, i'm

thinking about it, if it might take 2yrs or longer to win back my ssdi .

.. .

i've seen discussion about addiction etc. several times before - i'm

inclined to believe that we don't really get addicted to it . . . kinda

like people who need the narcotic pain med don't get high or addicted .

.. . our brains " need " this med. i believe it's perfectly safe at the

lowest effective dose for each individual . . . and stopping it

suddenly can cause seizure activity.

later, if we get well, and for some reason

are having trouble weaning off it, i think compounding pharmacies can

make up more diluted solutions for gradual weaning?

@}{~{<<~~~~~~~~~~~~~~~~~~~~

debbie s. - dlsherman@...

[Guest guest]

I called the Dr. today and she told us to get her

off the Klonopin right away. Krysti is so upset because she has a routine w/

her meds

and now says she won't sleep tonight.

Lori ... is it the help with sleeping from the Klonopin that she is worried

about? What about using Benedryl to help her adjust to not having the

Klonopin? Or is it just the routine of taking it? Just a thought. I use

Benedryl occasionally to help me sleep when I am really anxious ... because

of my medical problems I cannot take any antianxiety meds or sedatives so

benedryl is my only option. Just a thought

Peggikaye ... Oklahoma

[Guest guest]

Peggikaye,

Yes we have used Benadryl. She had an eye blinking tic sort of thing that went

away

after a few weeks. She did get reading glasses but also was not taking the

Benadryl due

to Klonopin. The list had talked about Benadryl possibly causing the eye

blinking. We

will probably use Benadryl. Tylenol p.m. also works, less Benadryl in it says

the Dr.

Thanks for advice. I think the routine thing does bother her. I tried using

the " take a

tylenol in its place " . Tonight she seems a little less stressed about the idea.

We will

see at bed time. I try to not give too much attention to the new problem (as a

mom

overprotects-especially me) and then it seems to fade faster at times.

Thanks

Lori

mom2tazbug@... wrote:

> I called the Dr. today and she told us to get her

> off the Klonopin right away. Krysti is so upset because she has a routine w/

> her meds

> and now says she won't sleep tonight.

>

> Lori ... is it the help with sleeping from the Klonopin that she is worried

> about? What about using Benedryl to help her adjust to not having the

> Klonopin? Or is it just the routine of taking it? Just a thought. I use

> Benedryl occasionally to help me sleep when I am really anxious ... because

> of my medical problems I cannot take any antianxiety meds or sedatives so

> benedryl is my only option. Just a thought

>

> Peggikaye ... Oklahoma

>

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click.

[Guest guest]

You know they put Krysti on Klonpin to help her relax and maybe stop her

eyeblinking

tic. Well it did stop almost immediately, but the depression stopped. Now that

she is

off the Klon her depression is better but the eyeblinking came back immediately!

I would

rather have the depression at bay but she would rather the embarassing

eyeblinking go

away. What do we do about her eyeblinking problem? Any suggestions from the

list? We

took her to get reading glasses (more of a mental thing for the blinking) but it

did

help. I love her mood change for the good. The eyes devistate her.

Any help or comments?

Lori-ca

mom2tazbug@... wrote:

> I called the Dr. today and she told us to get her

> off the Klonopin right away. Krysti is so upset because she has a routine w/

> her meds

> and now says she won't sleep tonight.

>

> Lori ... is it the help with sleeping from the Klonopin that she is worried

> about? What about using Benedryl to help her adjust to not having the

> Klonopin? Or is it just the routine of taking it? Just a thought. I use

> Benedryl occasionally to help me sleep when I am really anxious ... because

> of my medical problems I cannot take any antianxiety meds or sedatives so

> benedryl is my only option. Just a thought

>

> Peggikaye ... Oklahoma

>

> ------------------------------------------------------------------------

> Would you like to save big on your phone bill -- and keep on saving

> more each month? Join beMANY! Our huge buying group gives you Long Distance

> rates which fall monthly, plus an extra $60 in FREE calls!

> 1/2567/3/_/531051/_/955682413/

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>

> You may subscribe to the OCD-L by emailing

> listserv@... .

> In the body of your message write:

> subscribe OCD-L your name.

> The Archives and Features List for the OCD and

> Parenting List may be accessed by going to

> , enter your email address and password, then point and

click.

[Guest guest]

Hi Lori, I think I posted this before, but my daughter takes 1/2mg Risperdal

for tics (she also takes Zoloft for OCD) and it minimized them from the

first dose. Her worst and most bothersome tic was the blinking. According

to her doctor this type of augmentation is a common one for kids with OCD

plus tics.

Hope this helps,

Kathy R. in Indiana

> You know they put Krysti on Klonpin to help her relax and maybe stop her

eyeblinking

> tic. Well it did stop almost immediately, but the depression stopped.

Now that she is

> off the Klon her depression is better but the eyeblinking came back

immediately! I would

> rather have the depression at bay but she would rather the embarassing

eyeblinking go

> away. What do we do about her eyeblinking problem? Any suggestions from

the list? We

> took her to get reading glasses (more of a mental thing for the blinking)

but it did

> help. I love her mood change for the good. The eyes devistate her.

> Any help or comments?

> Lori-ca

[Guest guest]

Hi Lori, I think I posted this before, but my daughter takes 1/2mg Risperdal

for tics (she also takes Zoloft for OCD) and it minimized them from the

first dose. Her worst and most bothersome tic was the blinking. According

to her doctor this type of augmentation is a common one for kids with OCD

plus tics.

Hope this helps,

Kathy R. in Indiana

> You know they put Krysti on Klonpin to help her relax and maybe stop her

eyeblinking

> tic. Well it did stop almost immediately, but the depression stopped.

Now that she is

> off the Klon her depression is better but the eyeblinking came back

immediately! I would

> rather have the depression at bay but she would rather the embarassing

eyeblinking go

> away. What do we do about her eyeblinking problem? Any suggestions from

the list? We

> took her to get reading glasses (more of a mental thing for the blinking)

but it did

> help. I love her mood change for the good. The eyes devistate her.

> Any help or comments?

> Lori-ca

[Guest guest]

Lori, what about a lower dose of the Klonopin? We use it for 's tics

with his Tourette's syndrome and it is highly effective. We don't have

depression luckily but I know we watched him really close at first for signs

of depression. What dose was she on? takes 1/2 a pill three times a

day (I believe it is 4 mg ... not sure and to lazy to get up and go look.)

Maybe a lower dose would help with the blinking and not cause the depression?

Might be worth talking to the doctor about since her blinking is bothering

her that badly. Also a lot of parents find clonidine works really well with

the tic type behaviors, Tenex too. Those don't have quite the rate of

depression accompanying them as the Klonopin.

Take care

Peggikaye ... Oklahoma

[Guest guest]

She takes .5 Klonopin per day only. 1/2 tab. What a difference when she

started if for eye tics, but wow-depression. The actual day after we stopped

the Klon the eye tics were back. We are having a problem w/ medical and illness

issues w/ her. Her knee surgery was over 3 months ago and she always says it

hurts wants to show us the scar, starts limping. Her stomach always hurts or

something else. I have stopped listening too

much. I tell her I am sorry it hurts and it should get better. I have noticed

since I have stopped paying attention to her knee, she has let that go mostly.

It seems to always be something,

The one thing that bothers me is she comes home from school and has to wash her

hair in the kitchen sink, then take a shower in my shower but be out by 4:00

cause the music of her shows starts. Every day she sits in her room eating

sunflower seeds and hides from the world. She will come out to get dinner and

check her e-mail at night. Some shows she has deemed our shows. Like last

night, I got up and went to do something else

because I don't want to be tangled in the 'I have to watch it every week because

it is our show " She seems to be upset, but lets it go.

Any suggestions?

Lori-ca

mom2tazbug@... wrote:

> Lori, what about a lower dose of the Klonopin? We use it for 's tics

> with his Tourette's syndrome and it is highly effective. We don't have

> depression luckily but I know we watched him really close at first for signs

> of depression. What dose was she on? takes 1/2 a pill three times a

> day (I believe it is 4 mg ... not sure and to lazy to get up and go look.)

> Maybe a lower dose would help with the blinking and not cause the depression?

> Might be worth talking to the doctor about since her blinking is bothering

> her that badly. Also a lot of parents find clonidine works really well with

> the tic type behaviors, Tenex too. Those don't have quite the rate of

> depression accompanying them as the Klonopin.

>

> Take care

>

> Peggikaye ... Oklahoma

>

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, enter your email address and password, then point and

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[Guest guest]

I took Klonopin awhile back and it actually had the opposite effect on me --

it kept me up ALL night! When my doctor heard this he tried having me take

it in the morning instead, but that didn't really do anything for me so I

stopped taking it altogether. Has anyone else had this happen? Also, is

anyone concerned with the fact that Klonopin is an addictive drug? I have

been considering trying it again but the fact that it is potentially

addictive concerns me a little.

Laurel

[Guest guest]

Laurel,

There is a threshold level with Klonopin. Small doses make you more alert,

larger doses, usually 4x the dose that makes you more alert will have a

sedative affect. Everyone is different and you have to play around with the

doses. I went off Klonopin twice. The first time I had a mild headache and

nausea for 6-8 hours (withdrawl). The second time I had no withdrawl

symptoms at all going cold turkey. Steve B.

Re:Klonopin

> I took Klonopin awhile back and it actually had the opposite effect on

me --

> it kept me up ALL night! When my doctor heard this he tried having me

take

> it in the morning instead, but that didn't really do anything for me so I

> stopped taking it altogether. Has anyone else had this happen? Also, is

> anyone concerned with the fact that Klonopin is an addictive drug? I have

> been considering trying it again but the fact that it is potentially

> addictive concerns me a little.

>

> Laurel

>

>

> 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]

I've been struggling with Klonopin for a month now. I have been taking it

with Doxepin as instructed by Dr. Cheney. I started with .5mg Klonopin and

2 drops of Doxepin. The Klonopin is supposed to get me to sleep and the

Doxepin is supposed to keep me asleep..

Well that is what is supposed to happen. I keep telling my body this.

However, my body evidently likes to be do it's own thing. <g> The

Klonopin DOES put me to sleep right away... a very nice sleepiness and I'm

asleep within minutes after taking either .5 mg or even .25mg. However,

the sleep is very light. I feel like I'm half awake and half asleep all

night long. I dream constantly and awake often and am aware of being awake

and my dream, but then I drift back under. I assume this is Klonopin

interfering with my deeper stage 4 sleep. I feel so exhausted and sleepy

the next day. I am so sedated and hung-over the that I am functioning at

about 1/2 of my usual poor level.

The Doxepin is supposed to keep me asleep, but I awaken after about 5 hours

and am often quite wide awake - often for a couple hours. This is one of

my " normal " sleep problems even without the meds. I upped the dosage of

Doxepin to 1/2 cc and even 1 cc (10mg), but about the only thing that does

for me is raise my heart rate to over 100.

Sigh... I am about ready to give them both up. I used to get much better

sleep with 500 - 750 mg GABA (amino acid supplement) without any hangover

the next day.

-- in AZ

Re:Klonopin

> I took Klonopin awhile back and it actually had the opposite effect on

me --

> it kept me up ALL night! >

> Laurel

[Guest guest]

This is what is happening to me too...except I always wake up and then go

back to sleep after 4 hours.

> Regarding Klonopin. I am a new member to this list. It is supposed to

mess up Stage 4 sleep. I think the stage after dreaming is the most

important, and I believe it may impact on that as well. I

> have taken it for 4 yrs. Now on 1mg per night and I have tons of dreams.

Right now I awake remembering dreams every night. I am wondering if it may

delay the dreaming phases somewhat - most dreams

> are supposed to occur about 4 hrs into sleep. I awake after 8 or 9.Joyce

[Guest guest]

Hi, ,

When I was on Klonopin last, I was only using 1/2 of a 0.5mg tablet every

night; more would make me feel sluggish the next day.

If half a tab is still too much, I would ask your doc about using doxepin

liquid (pediatric Sinequon), where you can use as little as 1-2 mg (typical

dose is 50 I think; smallest available tablet is 10). Doxepin can give a lot

of the same sleep benefits.

Many PWCs use a combination of Klonopin and doxepin, but since you seem so

sensitive I wouldn't recomment this for you.

The pressure behind your eyes sounds like it could be a sinus infection or

allergic rhinitis (although headaches and pain from these are very

individual, a pressure sensation is suggestive.) To find out if this is the

case you might try nasal saline spray several times a day for a day or two -

if the pressure is relieved that suggests that the saline relieved the

pressure from clogged sinuses. You would need to see a doc to sort out

whether its allergy or infection.

Jerry

------

>I started on .5 mg klonopin at night almost a week ago because I was having

>tremors and these strange episodes which look like seizures but I'm

>conscious and can stop the muscle spasms if I want. I'm not sure how to

>describe what happens to me. the first couple of days on klonopin I slept

>extra long, but it was deep healing sleep and I woke up feeling great. I've

>been going downhill since then. Now I'm so tired I can hardly move. I'm out

>of bed and dressed, but barely. It's a struggle to make a phone call, and

>I'm not motivated to do anything.

>

>Anyone know how long it takes to get used to this? Anyone taking smaller

>doses? Would a small dose in the morning help me? I feel alot of pressure

>behind my eyes, could my brain be detoxing?

>Anyone have this deadening fatigue have to give up on the klonopin?

________________________________________________________________________________\

_____

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Klonopin:

Laboratory Testing During Long-Term Therapy: Periodic

blood counts and liver function tests are advisable

during long-term therapy with clonazepam.

http://www.rxlist.com

__________________________________________________

[Guest guest]

Klonopin:

Laboratory Testing During Long-Term Therapy: Periodic

blood counts and liver function tests are advisable

during long-term therapy with clonazepam.

http://www.rxlist.com

__________________________________________________

[Guest guest]

hi! just wanted to say, in case anyone's not aware, that going off

klonopin when your brain is used to it and still needs it can trigger

seizures.....

<<< I have used Klonopin for sleep for 4 yrs now and am trying to decide

whether or not to get off of it. I am aware of a lot of research taht

indicated that it woresens sleep.

However, I would be most interested in the informations that you have

colected about Cheney's theory on klonopin's quieting the reactivity of

the NMDA receptors and how helpful that is. I am also interested in

other ways to achiev4e that result that perhaps iinterfere less with

good quality ssleep. >>>

~~~~~~~~~~~~~~~~~~~~~~~~~

" Would they have found nothing, unless nothing was what they wanted to

find? " - Agent Dales, X-Files

@}{~{<<~~~~~~~~~~~~~~~~~~~~

@}{~{<<~~~~~~~~~~~~~~~~~~~~

debbie s. - dlsherman@...

[Guest guest]

Hello -

I just started on Klonopin this week, .5 mg before

bed, and I'm getting the best sleep I've had in years!

I don't know how long it will last but it's great

right now.

FWIW - Jennie

--- Joyce Goodlatte <jgoodlatte@...> wrote:

> Dear ,

>

> I have used Klonopin for sleep for 4 yrs now and am

> trying to decide whether or not to get off of it.

> I am aware of a lot of research taht indicated that

> it woresens sleep.

>

> However, I would be most interested in the

> informations that you have colected about Cheney's

> theory on klonopin's quieting the reactivity of the

> NMDA receptors and how helpful that is. I am also

> interested in other ways to achiev4e that result

> that perhaps iinterfere less with good quality

> ssleep. Joyce jgoodlatte@...

>

>

__________________________________________________

[Guest guest]

In a message dated 5/26/01 4:26:32 PM Eastern Daylight Time,

philcome@... writes:

> I mean does it sometimes lose its effectiveness?

>

I'm not a klonopin expert but it may depend on whether you really " need " it.

Many on this list need it to keep their brains from being damaged as is the

case with taking magnesium and hydroxy too. If you don't suffer from any

brain toxicity type of thing then I imagine constant use of it could diminish

in its effects over time. This is why I use it sparingly and usually do well

with only melatonin to help sleep.

-

[Guest guest]

hi Phil and all -

> I am concerned about using Klonopin for my sleep particularly as I

think I am hooked on the drug now. How can one wean oneself off of it

and what other meds or supplements are available for the same purpose?

if it helps you sleep and function, why wean yourself off it? If it

works, then your brain most likely really needs it - think of it as a

diabetic using insulin. Klonopin is *habituating* but not *addictive* -

2 different things. For more info see See

www.virtualhometown.com/dfwcfids in the Cheney section. There are a

whole variety of meds and supplements that some people have found

useful - for meds, try an archive search, for supps, check out the

www.immunesupport.com website and/or their catalog.

Judith G