Neurontin

[Guest guest]

Hi

My neurologist recently started me on a low dose of Neurontin. She hopes it

will reduce the numbness, tingling, and burning sensations I experience from

both spinal cord damage and the Lyme Disease. Neurontin is a second line

anti seizure medication, however it is being found to have many other uses

including reduction of nerve pain and sensory issues. I know if a few

neurologists that are using it for the treatment of adults with Attention

Deficit Disorder. I do experience that " drunken " feeling after taking just

300 mg of neurontin, so I take it when I get in bed. I certainly can't

afford any more falls....

Take care,

Jane

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

Marta wrote:

I never had seizures that I know of, but I am currently taking 1800 mg daily

of Neurontin in order to help with nerve pain, awhile back I stopped it to

see if it was really working and to my dismay found out it was helping and

quickly returned to it, and even upped my dosage after a while. I believe

maximum dosage is 2700mg daily, some people complain of drunken feeling or

severe fatigue from the meds, it never affected me that way.

Marta

From: timibug2@... <timibug2@...>

>Neurontin is an anti-convulsant used to treat seizure disoredrs. I think

some

>are trying this and it seems the brain can seizure from the Lyme and this

>helps. KIM

[Guest guest]

Sheila,

I take Neurontin supposedly for nerve pain. I only take 600 mg/daily, but my

doctor said that is a low dose. And it really doesn't seem to help my nerve

pain, only makes me sleepy. But when he increased the dose, it made me feel

woozy and nauseous. But as all Rx's, everyone reacts differently. Neurontin

is an anti-convulsant, and they are known to help with nerve pain. The

Klonopin, I'm also on, also just knocks me out, nothing seems to help with

the nerve pain, but a multi-Vitamin B, helps take the edge off. Good luck.

Vicki, Md

[ ] Re: Still searching

> Hello Everyone

I have heard people in the group talk about Neurontin.

> What is this and can anyone say whether it is useful for muscle, joint and

> nerve pain. Are there any serious side effects that should make me think

> twice about using it?

> sheila

[Guest guest]

Sheila,

I take Neurontin supposedly for nerve pain. I only take 600 mg/daily, but my

doctor said that is a low dose. And it really doesn't seem to help my nerve

pain, only makes me sleepy. But when he increased the dose, it made me feel

woozy and nauseous. But as all Rx's, everyone reacts differently. Neurontin

is an anti-convulsant, and they are known to help with nerve pain. The

Klonopin, I'm also on, also just knocks me out, nothing seems to help with

the nerve pain, but a multi-Vitamin B, helps take the edge off. Good luck.

Vicki, Md

[ ] Re: Still searching

> Hello Everyone

I have heard people in the group talk about Neurontin.

> What is this and can anyone say whether it is useful for muscle, joint and

> nerve pain. Are there any serious side effects that should make me think

> twice about using it?

> sheila

[Guest guest]

Please note that the CFIDS community (most probably being Lyme) went wild

with Neurontin a few years ago. It is a powerful drug, be aware. The more

one takes the greater the risk. Be extra cautious as you are affecting the

brain. Remember it does not do anything for the illness, it merely " masks. "

Sincerely,

Annie

[Guest guest]

Marta,

I am curious - did you ever have a lumbar puncture? I am now finding out that

this is the only way I will be able to get IVs if this comes up positive. We

are all at our wits end. Not sure anymore, but your problems sound similar to

mine. KIM

[Guest guest]

Marta,

I am curious - did you ever have a lumbar puncture? I am now finding out that

this is the only way I will be able to get IVs if this comes up positive. We

are all at our wits end. Not sure anymore, but your problems sound similar to

mine. KIM

[Guest guest]

Hi Annie,

Sorry I am replying to such an old post but I am so behind in everything

in my life especially my email.

I am curious about the side effects of Neurontin as I am taking 1800 mg

daily for my neuropathy pain and tingling. I know it works as I recently

had to miss a few doses prior to minor surgery and the tingling and pain

came back immediately. I have enough problems to deal with this brain of

mine, or so says the PET Scan and Brain MRI I had a few months ago, but I

would rather put up with the pain and tingling of the neuropathy if this

drug will cause further brain injury for me.

Thanks in advance,

Marta

From: InformationJunki@... <InformationJunki@...>

>Please note that the CFIDS community (most probably being Lyme) went wild

>with Neurontin a few years ago. It is a powerful drug, be aware. The more

>one takes the greater the risk. Be extra cautious as you are affecting the

>brain. Remember it does not do anything for the illness, it merely

" masks. "

>

>Sincerely,

>Annie

[Guest guest]

Im confused. You saying a spinal tap wasnt good for you?

[Guest guest]

I refused it, for fear that if it was a false-negative I would have resulting

problems with insurance for additional treatment and meds. They could then

have said that I do not have Lyme and left me in a lurch.

Annie from Los Angeles

[Guest guest]

Dear Marta:

Hi!

I ran this by , who said that based on what you wrote, it sounds like

you may not have tapered off the meds over a long enough timeframe, resulting

in the pain and tingling (usually the original symptom the med is taken for).

Neurontin cannot be stopped abruptly. He wanted to remind you to only use

the minimal dosage to get the needed relief.

How are you doing with the Rocephin? I plan to start fairly soon. I keep

finding reasons to delay. I just cleared the Babesiosis, now I'm going to

blast the Lyme and Ehrlichiosis. I've phased in Doxy, so I'm getting

there....

Sincerely,

Annie

[Guest guest]

craig ....spinal taps are an invasive procedure and can cause complications

and pain.....they have little chance of showing lyme ......and will how it

only if the spiros are active in the spinal fluid at the time.....no testing

for lyme is accurate....dr harris from igenex ( which i feel is one of the

best lyme testing labs ) said in gettysburg at the rally that their best test

is around 68% accurate......where we need a 95 % accurate test to be of any

good for dx....... so we are still in a pickle....repeat after me class....

LYME IS A CLINICAL DX.........

Reid

[Guest guest]

Hi

I too was just given Neurontin to alleviate pain, but my pain comes

from back surgery done 2 months ago.

The surgeon seemed to think it will go away with time and this medication.

I have been on it for over a week now and really haven't seem much improvment.

One thing I have noticed is that it makes me drowsy and a bit dizzy a times.

You didnt say if it was helping you.

Let me know , OK

Best wishes

Gwen

Celeste wrote:

My GP just prescribed Neurontin, a seizure med,

to help alleviate

pain from Raynaud's. Specifically, I have a finger tip

autoinfarcting and it was horrifically painful about a month ago

when

it got going. Now it's kind of in a holding pattern because

my good

old scleroderma is over producing scar tissue without allowing

a scab

to form, thus completing the necrotization of the tissue.

I have an

appointment with a Hand specialist next month--hopefully I can

convince someone to cut it so it's not hanging on into winter(an

orthopedic surgeon and a general surgeon have both said they wouldn't

recommend surgery). I may be a candidate for a digital simpathectomy.

Short story long:

Has any one taken this drug or something similar? Helpful?

Harmful? Experienced side-effects? Warnings or encouragement?

Thanks,

Celeste

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Hi,

It looks like there is an upsurge in prescribing neurontin for pain since the Newsweek article I told you to read. The drug is really a seizure drug that is useful in other physical mental problems such as OCD. It does not stop pain like narcotics and nsaids, but it does have a mild effect on how the brain interprets pain. My pain has improved since I went on it a few weeks ago, but I had just started Biaxin as well. When I don't take vioxx, I have a lot of pain, but I have improved so much lately in getting around. I can now walk around stores in a normal looking gait (I used to walk very slowly and painfully and I looked like I was wearing a wet diaper.) I am hoping the Biaxin is doing this, but the neurontiin might be helping. I know neurontin will help nervous habits such as blinking too much, or other obsessive things.

Thanks,

Gloria

[Guest guest]

I started taking 600mg on Neurontin about 2 months ago...I found it did give

me side effects like you mentioned (grogginess etc)...it helped me sleep for

a while (about a week) and then started to wear off very quickly. For the

last month I've been taking a really low dose of Neruontin (about 50mg)

coupled with 7mg of Sinequin- this has helped my sleep for the last month

although in the last few days again it has started to wear off. It seems

that anything I try to do to help my sleep wears off quite quickly- and - I

also become dependent on whatever I'm trying- so I wind up in a worse

position than when I started. Have you tried L-tryptophan? It doesn't work

for me but other people say it helps.

Sorry to sound so pessimistic- am feeling very grumpy this morning,

Good luck!

Emma

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

[Guest guest]

A man after my own heart. I have not gont that high with it. Not quite. but

perhaps I will try again. I wonder if it isnt acting like an anti seizure drugs

- and therefore if there are not

other antiseizure drugs that would do the trick better at a lower dose. Anyone

out there trying that or know of docs who are? Joyce Goodlatte

YOu know it is a lousy antiseizure drug - in fact the drug company who produces

it must be sighing with releif that some group of people have found a use for

it. Cause it is also a lousy sleep

drug and lousy pain drug. But I do think I get mentl clarity - though I

sometimes wonder if the worsen I get when I go down in dosage is a drug

withdrawal effect.

[Guest guest]

I was diagnosed with PA in 1994 and have been taking neurontin since 1998

for myofacial pain at right tm joint and right temple area. It is

prescribed by the neurologist who follows me for migraine and pain

management. My understanding is that the neurontin dulls increased nerve

response to pain caused by inflammation in soft tissue areas. In my case

the pain in the area surrounding the tm joint and right temporal area was

triggering migraine pain in my right eye, requiring daily med intervention

(maxalt) in order for me to be able to function in spite of the migraine.

the neurontin helped me to reduce my dependence on the maxalt to only 4-6

times a month for which I am very grateful-- Hatchett ( is

husband).

[ ] Neurontin

> Hi all --

>

> I've been on the list quite a while and I am a moderator and

> administer the list webpage I rarely write in --

>

> Now I am seeing a new doctor, a specialist in pain management. In

> addition to a full spine MRI I''' be taking in a few days he will

> probably have me see a group who do bio-feedback and acupuncture.

> Anyone with experience in either of these should please write in to

> let us all know their experiences.

>

> But my main concern right off is the new medication he has ordered up

> for me. It is called Neurontin, and it is not a painkiller; rather,

> it was originally for people with seizures. I just searched through

> the archives and saw that Fred at erinananda (does that mean " Blessed

> Ireland, " Fred?) and Wood have both used Neurontin -- is there

> anything you guys can tell me? How about the rest of you -- any

> other Neurontin users like to ring in?

>

> Thanks --

> RA , North Jersey Highlands

> http://www.wpunj.edu/pa/

>

>

>

>

>

>

[Guest guest]

It is called Neurontin, and it is not a painkiller; rather,

> it was originally for people with seizures. I just searched through

> the archives and saw that Fred at erinananda (does that mean " Blessed

> Ireland, " Fred?) and Wood have both used Neurontin -- is there

> anything you guys can tell me? How about the rest of you -- any

> other Neurontin users like to ring in?

>

> Thanks --

> RA , North Jersey Highlands

Hi,

My rhumy put me on nerutontin for 'restless leg syndrome'. My legs and various

other parts of me jerk for no reason when I start to relax. I've even had my

legs jerk me awake at night. I scared the deal out of my friend of mine when

they did it one night we were watching tv. My dr put me on the nerutontin for

that a few months ago and I don't know if it is the PA or that that is making me

absolutely exhausted all the time. It helped with the 'restless leg syndrome.'

Smile,

Becky

[Guest guest]

, I always read your messages with interest--neurontin is just one more

thing we have in common! Haven't forgotten about writing you about my VA

family history--life has just gotten in way--if you or anyone out there has

had a kidney x-ray with intravenous dye, please share why you were required

to have it and what experience was like. I had one yesterday due to blood

in urine ever since going back on Methotrexate--not taking now because of

this problem. I have been poked and prodded for so long I thought it

couldn't get worse--well, now I know it can (of course, all of you already

knew that!). After being awake for 36 hours with all the prep 'work' in

preparation for x-ray and being so weak because only allowed liquids for

that period of time and then of course the constant trips to bathroom, I get

to the hospital, laid out on x-ray table and needle poised for insertion of

dye into I.V. when technician casually asks " you don't have any food

allergies, do you? " When I asked 'like what?' she retorted, " you eat

shellfish, don't you? " When I replied 'no' she turned on her heel walking

out the door mumbling in frustration, " you will have to be rescheduled. "

Well, I was laying down but my mouth still worked! I was so angry and so

frustrated I first ranted and raved until she went for radiologist which

gave me a chance to get my thoughts somewhat together. Come to find out the

fact that I do not eat shellfish because of my being convinced it triggers

migraine counts as a food allergy! Radiologist explained that any reaction

to shell fish is indicator dye might cause my heart to stop. Wonderful. To

avoid this I will need to be pre-medicated always when dye used. When I

asked what medication they give you to premedicate he stated prednisone and

benadryl. I went off again on a tangent because I am already on 10 mg.

prednisone a day now because am off of methotrexate and taking benadryl is

not a problem for me. After some fast talking and quick questions on my

part, it was decided I would be administered 100 mg. shot of cortizone

(turns out many less side effects for me because going up to required dosage

of prednisone would take 5-7 days and then there is always the longer

tapering off process while meanwhile I blow up like a balloon and get even

more depressed than usual) and a 50 mg. shot of benadryl. I would have done

anything at that moment to avoid rescheduling and going through the whole

36-hour prep thing again right away.

Twice during all of this back and forth with technician, R.N. and

radiologist I had to be led through the hospital to a handicapped accessible

bathroom and twice I got lost getting back to x-ray--in a hospital gown no

less--I was sat back out in waiting room in my hospital gown at one point to

wait to begin again. When procedure was about to begin again I asked for

little pillow wedges they use to keep you comfortable on table so arthritis

pain doesn't get worse from stress of holding yourself in awkward positions.

After a long sigh and a quick look around she had no idea where they

were--the look on her face by that time was one of utter disgust. All of

this in a supposedly thoroughly modern 2002 hospital--and after seeing a

urologist with 30 years experience, spending all of this time with R.N. in

his office going over everything and then going all through everything again

with R.N. pre-registering the day before. If I wasn't convinced before, I

sure am now--psoriatic arthritis is definitely 'invisible' and therefore

non-existent to a lot of folks out there. If I had come in limping or

leaning on my cane or requiring a wheel chair (all of which have happened in

past) at least I might have gotten a little respect. Oh well--enough

whining--I'm sure it could have been a lot worse.

, hope you or one of other PA'ers can shed some light on this

situation. Do I list shell fish now with medications I am allergic to or

what? Do any of you know of a good resource to use to learn more about

patient advocacy, etc.? Thanks again for everyone's help!

[Guest guest]

HI

I do take Neurontin, as the neuorologist felt it might help with some nerve

pain, and often will help with myofascial pain. I'm not sure whether it

really does or not, at this point. I take it anyway, for fear of stopping

<G>. I'm afraid I'll feel worse if I stop at this point.

I see no side effects from taking it such as dizziness or sleepiness. Then

again, I'm so fatigued all the time, who could tell <G>. I also take vioxx

at the same time as well as about 13 other medications between the PA and

the MS. It is listed as an antiseizure medication, but many docs and pain

management centers are using it for pain control as well.

At this point, I cannot take Ultram, Vicodin and a number of others, as they

make me so nauseated it's not worth it. The neurotin helps with other pain,

such as headache and some muscle pain, but so far, nothing is stopping this

burning pain, mostly muscle or fascial, I think. It's not joint pain. This

is more like feeling like I've got 2nd degree burns over 75% of my body, and

nothing seems to slow it down when it starts. It comes when it wants to, and

seems to stop now and then, without explanation. Wierd

In any case, give it a try. I haven't had any problems with it.

[ ] Neurontin

> Hi all --

>

> I've been on the list quite a while and I am a moderator and

> administer the list webpage I rarely write in --

>

> Now I am seeing a new doctor, a specialist in pain management. In

> addition to a full spine MRI I''' be taking in a few days he will

> probably have me see a group who do bio-feedback and acupuncture.

> Anyone with experience in either of these should please write in to

> let us all know their experiences.

>

> But my main concern right off is the new medication he has ordered up

> for me. It is called Neurontin, and it is not a painkiller; rather,

> it was originally for people with seizures. I just searched through

> the archives and saw that Fred at erinananda (does that mean " Blessed

> Ireland, " Fred?) and Wood have both used Neurontin -- is there

> anything you guys can tell me? How about the rest of you -- any

> other Neurontin users like to ring in?

>

> Thanks --

> RA , North Jersey Highlands

> http://www.wpunj.edu/pa/

>

>

>

>

>

>

[Guest guest]

At 09:33 PM 1/30/02 +0000, you wrote:

>Hi all --hi, my dad was given neurontin for the continued pain he suffers

>long after a bout of shingles. mo

>

>

><http://www.wpunj.edu/pa/>http://www.wpunj.edu/pa/

>

>

>

>

>

[Guest guest]

To RA and Others,

I, too, have been prescribed neurontin by a pain management (orthopedist)

specialist, and it helps a great deal with sound sleep. I've been through

the MRI and three rounds of epidural injections (L5/S1 vertebrae) for severe

sciatica. I've also gone to physical therapy, only to have it aggravate my

sciatic nerve injury. Now the doctor is talking surgery (the " s " word). My

father died from this procedure on a cervical disk (infection in the spinal

fluid and brain), so this is a very traumatic choice for me.

Accupuncture helped for a couple of years before the epidurals, until the

sciatic and numbness in the left leg became intractable. I would encourage

anyone to try accupuncture first. The epidurals (cortisone shots) might

help if accupuncture doesn't, unless the nerve is too traumatized (as mine

seems to be).

I am also taking 1500 mg of Relafen daily (it works fairly well) as well as

minocycline (antibiotic protocol) which hasn't really worked after a year --

but I'm still hopeful. I am taking 200 mg of Zoloft (which isn't enough!)

to manage my depression, and I am going through a divorce at 52.

I do recommend that anyone try accupuncture. Neurontin has been good for

sleep, too.

Marcia Cohee

lagunapoets@...

> From: " raharris " <raharris@...>

> Reply-

> Date: Wed, 30 Jan 2002 21:33:51 -0000

>

> Subject: [ ] Neurontin

>

> Hi all --

>

>

>

> Now I am seeing a new doctor, a specialist in pain management. In

> addition to a full spine MRI I''' be taking in a few days he will

> probably have me see a group who do bio-feedback and acupuncture.

> Anyone with experience in either of these should please write in to

> let us all know their experiences.

>

> But my main concern right off is the new medication he has ordered up

> for me. It is called Neurontin, and it is not a painkiller; rather,

> it was originally for people with seizures. I just searched through

> the archives and saw that Fred at erinananda (does that mean " Blessed

> Ireland, " Fred?) and Wood have both used Neurontin -- is there

> anything you guys can tell me? How about the rest of you -- any

> other Neurontin users like to ring in?

>

> Thanks --

> RA , North Jersey Highlands

> http://www.wpunj.edu/pa/

>

>

>

>

>

[Guest guest]

Dear Mr. I have been on Neurontin for two months,for periphereal

neuropathy,and the pain in my feet has eased a great deal. But so far haven't

had much easing of the P.A. i take three hundred mg's three times a day.But I

sleep like a rock, so that is a plus. Good luck, from an old woman who is just

learning to use her computer. EM

raharris <raharris@...> wrote: Hi all --

I've been on the list quite a while and I am a moderator and

administer the list webpage I rarely write in --

Now I am seeing a new doctor, a specialist in pain management. In

addition to a full spine MRI I''' be taking in a few days he will

probably have me see a group who do bio-feedback and acupuncture.

Anyone with experience in either of these should please write in to

let us all know their experiences.

But my main concern right off is the new medication he has ordered up

for me. It is called Neurontin, and it is not a painkiller; rather,

it was originally for people with seizures. I just searched through

the archives and saw that Fred at erinananda (does that mean " Blessed

Ireland, " Fred?) and Wood have both used Neurontin -- is there

anything you guys can tell me? How about the rest of you -- any

other Neurontin users like to ring in?

Thanks --

RA , North Jersey Highlands

http://www.wpunj.edu/pa/

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[Guest guest]

In a message dated 03/22/2002 9:39:04 PM Eastern Standard Time, rod@...

writes:

> My Pain Dr has people start at 100 for a few days, then to 200 for a

> few days etc untill you reach the dose that works. Dont ever just start at

> a high dose, or go off, Neurontin withdrawels aint fun! *-)

>

>

I am now on 2000 of neurontin, I think it's starting to help but still am on

the percoset which the Dr wants me to wean off of now. Why do you say don't

increase or go off of it quickly? I don't recall the dr telling me this but I

do have lots to process. Do you take all in one dose? I've been having

problems sleeping and wonder if I should do this all at n ight also.

f Jody P

Beautiful young people are accidents of nature,

but beautiful old people are works of art

<A HREF= " http://hometown.aol.com/tarabencaitysmom/index.html " >Jeff & Jody's

Family</A> <A

HREF= " http://www.picturetrail.com/gallery/view?username=tarabencaitysmom " >Jody's

Photo Albums</A>

Happy easter

O

[Guest guest]

In a message dated 03/29/2002 1:14:49 AM Eastern Standard Time, rod@...

writes:

>

> Yes, 3200mgs in one dose at about 6pm so I can sleep. If I have a really

> bad

> day, I can take 400-600mgs more, for the PN.

>

I have been trouble sleeping so I'll have to try this and not space them out

throughout the day, will it work thru the next day and still help you? I

usually wake with a raging headache. So it will make you a little nutty huh?

Well that's nothing new lately LOL.

f Jody P

Beautiful young people are accidents of nature,

but beautiful old people are works of art

<A HREF= " http://hometown.aol.com/tarabencaitysmom/index.html " >Jeff & Jody's

Family</A> <A

HREF= " http://www.picturetrail.com/gallery/view?username=tarabencaitysmom " >Jody's

Photo Albums</A>

Happy easter

O

[Guest guest]

> I am now on 2000 of neurontin, I think it's starting to help but still am

on

> the percoset which the Dr wants me to wean off of now. Why do you say

don't

> increase or go off of it quickly?

Dont think you will have withdrawels per se , but close, it can 'make you

a little nutty' per my Pain Dr *-)

I don't recall the dr telling me this but I

> do have lots to process. Do you take all in one dose?

Yes, 3200mgs in one dose at about 6pm so I can sleep. If I have a really bad

day, I can take 400-600mgs more, for the PN.

I've been having

> problems sleeping and wonder if I should do this all at n ight also.

if it weren't for the Neurontin, I would not be sleeping at all, least not

in anything more than 2-3 hrs naps. Good Luck!!