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From: " A " <davidevans@...>

> > Neurontin. What was the dose?

> - 600mg 2/day

This probably won't work for RLS/PLMD. All of it has to be taken at

bedtime. Neurontin has a very short half life, and anything you take

in the daytime will be flushed out of your system by night time.

600 mg isn't a big enough dose if you're a big guy. I'm taking about

1500 mg (~15 mg/kg) and it more or less works. I've found a bit of a

tolerance to it, though I do not know if that is typical or not. I

intend to ask to go up to 1800 mg, because that definitely works. If

I take that about 1 hour before bed time, I sleep like a

stone--literally do not move for at least 6 hours.

There is probably *no* upper limit on safe dosage of Neurontin. There

was one reported overdose of something like 80 grams of it, and it

didn't kill them. I know a woman who takes upwards of 5g/day for

reflex sympathetic distrophy and related problems. I can't imagine

any case of PLMD requiring more than 5g. Basically, find the dosage

that works, and increase slowly if needed. The chief concern is

cost, of course.

Neurontin should not interact with any medication. It is not

metabolized by the body at all and is directly excreted via the

kidneys. The MTX might put a little extra load, but I haven't noticed

any problems at all (I'm on 20 mg/week MTX). However, I would not

combine it with alcohol because of the possibility of depressing your

CNS system too much.

Don't take my report too seriously, but it may help to find a better

neurologist who knows how to treat PLMD and related disorders.

Klonopin is overkill, but it is definitely cheaper. However,

Neurontin may not be enough for psoriasis-related neuropathy.

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  • 2 weeks later...

I take 200 every 4 hours. This required extremely slow beginning tho...100

at night to start. Then another 100 in day, slowly up to a 3rd dose of 100. Then

eventually adding each 2nd 100 til 200 every 4 hours.Hope that makes sense. It's

to avoid the " drunk " and other side effects.

After I began, I noticed it helped with nerve pain and a certain type of

thinking...like what was required to be on-line. It might help with mood....

It also helped with my Dystonia and tremor.

Have not noticed it helping with MCS.

I have not followed any lists on Neurontin, so in that way, am no

expert.

At this point I am so wrecked neurologically, I am not sure what

anything is doing. Taking more might be a good idea but I am hesitent to alter

any neuro meds til I get evaluated either by UCSF or Mayo...whichever comes

first.

Katrina

P.S. I recall the dose people take or tolerate of Neurontin vary more than any

med I have seen

> What dose of neurontin

are most people taking? I know several years ago some > patients of Dr. Jay

Seastrunk were taking very high doses (up to 2700 mg/day > or so) and having

positive results from this, but I think I remember reading > that Cheney was

discouraging this. What have others found to be the optimum > dose, and what

benefits have people had (sleep, cognitive problems, MCS, > etc.)? Is anyone

still experimenting with ultra-high doses? I know this has > been discussed

before but I wanted a current perspective since I just got a > prescription.> >

Peggy > > *********************************> web page:

www.angelfire.com/ri/strickenbk

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In a message dated 12/1/2002 4:35:52 AM Eastern Standard Time,

Peggomatic@... writes:

> What dose of neurontin are most people taking? I know several years ago

> some

> patients of Dr. Jay Seastrunk were taking very high doses (up to 2700

> mg/day

> or so) and having positive results from this, but I think I remember

> reading

> that Cheney was discouraging this. What have others found to be the

> optimum

> dose, and what benefits have people had (sleep, cognitive problems, MCS,

> etc.)? Is anyone still experimenting with ultra-high doses? I know this

> has

> been discussed before but I wanted a current perspective since I just got a

>

> prescription.

Peggy,

I take 2400mg a day and what it does is calm down my irritable nerves...

physically speaking, not emotionally.

When I don't take it, my skin gets itchy and irritable, my neuralgia gets

worse and my neuropathic pain intensifies.

Whatever you do, don't stop taking it abruptly, it could lead to seizures.

Shelle in on, Michigan

GBS in 99, triggered by food poisoning

" He who trades liberty for safety, deserves to have neither. " Ben lin

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Peggy,

I take 4800 mg/day. I'm not sure I could survive w/o it. I was on a lower

dose, which was not enough to control my neuropathic pain, but Dr. Cheney

was uncomfortable increasing the dose. Then my specialty coag tests came

back (not from Hemex), which revealed that I have a genetic defect in the

enzyme that is necessary to produce myelin, the protective covering over the

nerves. I am homozygous for this defect, meaning I got it from both of my

parents, therefore issue of dominant vs recessive trait does not come into

play here. It needs to be treated for the rest of my life. My oral surgeon

wrote a letter to Dr. Cheney explaining that the reason he was having a

difficult time controlling my pain (by trying stuff like Vicodin in varying

strengths, flexeril...) was that the pain was neuro in origin. Without

hesitation Cheney cranked up the Neurontin to its present dosage. If I take

it spaced properly, 98% of the neuro pain is relieved. When I go past 6

hours, my body lets me know. I ramped up slowly, and eat protein with every

dose except the bedtime dose, and don't have the woozy, drugged feelings

some describe.

I take N as well as klonopin and doxepin for sleep, so sleep well (but am

like you in that my sleep period is 3 am to 10 am). I awake as exhausted and

fatigued as ever, but do not feel drugged. I don't think it has helped my

cognitive problems, which are steadily declining, but then perhaps it is

slowing the cognitive loss down? Who knows. It has done nothing for my

severe MCS, however. Dr. Seastrunk wrote that some patients needed to be on

high dose for 2 years or more before it helped these types of problems, and

I have not been on the high dose more than one year, so perhaps time will

tell. It has cut out use of other pain meds except for Toradol which seems

to be the only thing that helps bring my headaches back to a tolerable level

once they reach the stage of intolerance.

At this stage in my life, I am willing and happy to make the trade between

Neurontin and Vicodin/Demerol any day.

Donna in NC

neurontin

> What dose of neurontin are most people taking? I know several years ago

some patients of Dr. Jay Seastrunk were taking very high doses (up to 2700

mg/day or so) and having positive results from this, but I think I remember

reading that Cheney was discouraging this. What have others found to be the

optimum dose, and what benefits have people had (sleep, cognitive problems,

MCS, etc.)? Is anyone still experimenting with ultra-high doses?

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Has anyone found that Neurontin helped their physical fatigue and muscle

weakness?

Has anyone found that it helped brain fatigue (I am not thinking about cognitive

problems but the fact that the brain gets exhausted from just a short chat with

a friend)?

Thanks, Lene

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Hi Chris:

Just sent Nick a note about Neurontin/Gabapentin and realized I should have

hit " reply all " instead of reply. I took Neurontin/Gabapentin for my RSD in

1997. I gained something like 40lbs in the first month or two, which is very

common side effect, although I do have a (male) friend who's never gained a

pound. It was listed on the printout (the one you get from the pharmacy when

you get a prescription for the first time) as being a side effect. I think it

even listed " craving greasy foods " as the first or second side effect--lol

(seriously though). I eventually took the weight off then went on to gain it

back plus another 20-30lbs. I've now lost all but 25lbs. (I'm 5'9 and was

pretty thin to start with--I live in Los Angeles--a pretty weight conscious

town---but that's another neurotic conversation for another time--LOL).

Ok, so here's my advice. I suggest that you ask your doctor and pharmacist

about potentially changing your medication. There's a newer (and I'm told an

even more effective) medication that's in the same family called Topamax

which actually has a side effect of weight loss. I've been taking it now for

a few months (a friend of mine says I'm the only one she knows who hasn't

lost weight as a result of just taking it--I mean, I'm doing old fashion

dieting--that's how I'm losing weight). It was prescribed for me for

numbness, tingling (down my leg) and pain. It took the tingling and numbess

away. I don't think it's done all that much for my back pain (Neurontin never

did either) but it's helped my spasms (no one said it would) immensly. My

pharmacist told me that a lot of doctors are prescribing Topamax now instead

of Neurontin. So....you might want to ask your doctor what he/she thinks. Let

me know. Hope that helps.

Robin

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Kirsten,

I have been on Neurontin for quite some time and yes it helps. I find that if I

run out and the doctor hasn't called in my prescription yet I definitely feel

the difference. I have no side effects from it at all either. JMHO

Robin, Penny, Chance, Heidi, and Hope (Florida)

http://www.geocities.com/goldens4life2000/index.html

Messenger: goldens4life2000

[ ] Neurontin

Ron-

So glad you mentioned neurontin in regards to the TMJ.

I've been wondering if anyone here has used it succesfully for pain

management in here?.

I've worked with several patients who have been put on it for pain

control and the side effects seem to be less that the narcotic based

drugs.

Apparently, the neurontin is actually an anti-spasmodic medication-

which seems to be right up our alley when we're experiencing pain

related to inflammation.

Just wondering!

Kirsten

Please visit our Psoriatic Arthritis Group's informational web page at:

http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

In August 2001 list member Jack aka(Cornishpro@...) began to

conduct extensive research which he publishes as the Psoriatic Arthritic

Research Newsletter monthly in our emails and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage.

Also remember that the list archives comprise a tremendous amount of

information (Over two years of messages and answers).Feel free to browse them at

your convenience.

Let's hear from some of you lurkers out there! If you have a comment or

question chances are there is a person who has been around a while who can help

you out with an educated guess for an answer. If not we can at least steer you

in the right direction with a good website to go to for the answers.

Blessings and Peace,

Atwood-Stack, Founder

Alan , Web & List Editor

Jack , Newsletter Editor

Pat Bias, List Editor

Ron Dotson, List Editor

and many others who help moderate (thank you!)

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I am being successfully treated with neurontin for neuropathy contributing to

TMJ, myofacial pain and eye pain/migraine--all on the right side of my face and

head. I also experience a disproportionate amount of pain in my feet compared

to rest of my body. My neurologist had my feet tested for neuropathy. He

suspected it was not the cause of my pain because I was already on the neurontin

which is often effective in the treatment of pain in the feet (I.a. diabetics).

Sure enough tests revealed no neuropathy in feet so all of pain is attributed to

arthritis and I have been referred to orthopedist who's specialty is feet for

evaluation for possible surgical intervention.

I remember neurontin was discussed extensively by this group sometime during

past year. Quite a few of us have been prescribed neurontin at some point, but

my memory is that the side effects for some have made its use prohibitive.

[ ] Neurontin

Ron-

So glad you mentioned neurontin in regards to the TMJ.

I've been wondering if anyone here has used it succesfully for pain

management in here?.

I've worked with several patients who have been put on it for pain

control and the side effects seem to be less that the narcotic based

drugs.

Apparently, the neurontin is actually an anti-spasmodic medication-

which seems to be right up our alley when we're experiencing pain

related to inflammation.

Just wondering!

Kirsten

Please visit our Psoriatic Arthritis Group's informational web page at:

http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

In August 2001 list member Jack aka(Cornishpro@...) began to

conduct extensive research which he publishes as the Psoriatic Arthritic

Research Newsletter monthly in our emails and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage.

Also remember that the list archives comprise a tremendous amount of

information (Over two years of messages and answers).Feel free to browse them at

your convenience.

Let's hear from some of you lurkers out there! If you have a comment or

question chances are there is a person who has been around a while who can help

you out with an educated guess for an answer. If not we can at least steer you

in the right direction with a good website to go to for the answers.

Blessings and Peace,

Atwood-Stack, Founder

Alan , Web & List Editor

Jack , Newsletter Editor

Pat Bias, List Editor

Ron Dotson, List Editor

and many others who help moderate (thank you!)

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Hi - I take Neurontin for pain in my feet - I can't walk for very

long - maybe 30 minutes - Dr said it was because I drank a lot when I

was in my 20's. It has stopped the pain - I only take one of the

three per day because that works but go ahead and get the

prescription for 3 per day so if I need them I have them.

lj

> Ron-

> So glad you mentioned neurontin in regards to the TMJ.

> I've been wondering if anyone here has used it succesfully for pain

> management in here?.

> I've worked with several patients who have been put on it for pain

> control and the side effects seem to be less that the narcotic

based

> drugs.

> Apparently, the neurontin is actually an anti-spasmodic medication-

> which seems to be right up our alley when we're experiencing pain

> related to inflammation.

> Just wondering!

> Kirsten

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I take one neurontin twice a day. It does help but I still ache all over

....mostly my back and legs though.

[ ] Re: Neurontin

Hi - I take Neurontin for pain in my feet - I can't walk for very

long - maybe 30 minutes - Dr said it was because I drank a lot when I

was in my 20's. It has stopped the pain - I only take one of the

three per day because that works but go ahead and get the

prescription for 3 per day so if I need them I have them.

lj

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I don't get it. Did I miss something? The pain in my feet is excruciating

and I didn't drink alchohol. Why would your doctor say that your feet hurt

because of your drinking. Does he think you have gout, then?

[ ] Re: Neurontin

> Hi - I take Neurontin for pain in my feet - I can't walk for very

> long - maybe 30 minutes - Dr said it was because I drank a lot when I

> was in my 20's. It has stopped the pain - I only take one of the

> three per day because that works but go ahead and get the

> prescription for 3 per day so if I need them I have them.

>

> lj

>

>

> > Ron-

> > So glad you mentioned neurontin in regards to the TMJ.

> > I've been wondering if anyone here has used it succesfully for pain

> > management in here?.

> > I've worked with several patients who have been put on it for pain

> > control and the side effects seem to be less that the narcotic

> based

> > drugs.

> > Apparently, the neurontin is actually an anti-spasmodic medication-

> > which seems to be right up our alley when we're experiencing pain

> > related to inflammation.

> > Just wondering!

> > Kirsten

>

>

>

> Please visit our Psoriatic Arthritis Group's informational web page at:

> http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

>

> In August 2001 list member Jack aka(Cornishpro@...) began to

conduct extensive research which he publishes as the Psoriatic Arthritic

Research Newsletter monthly in our emails and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage.

>

> Also remember that the list archives comprise a tremendous amount of

information (Over two years of messages and answers).Feel free to browse

them at your convenience.

>

> Let's hear from some of you lurkers out there! If you have a comment or

question chances are there is a person who has been around a while who can

help you out with an educated guess for an answer. If not we can at least

steer you in the right direction with a good website to go to for the

answers.

>

> Blessings and Peace,

>

> Atwood-Stack, Founder

> Alan , Web & List Editor

> Jack , Newsletter Editor

> Pat Bias, List Editor

> Ron Dotson, List Editor

> and many others who help moderate (thank you!)

>

>

>

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Cheryl - when I complained about my feet burning and the pain, he sent me to a

neurologist who did tests to see if there was any nerve damage. He had a long

questionnaire and one of the questions dealt with drinking. He said this was

neuropathy; not arthritis and deals with the nerves in my feet constricting to

the point of not enough circulation and the death of those nerves. When I joined

this group I was surprised to find arthritics taking neurontin for arthritis.

Now that I know neurontin is prescribed for arthritis, I intend to increase my

intake of it and see if it helps my arthritis also.

Actually, my feet have been better since I stopped working until today. I just

got back from a long shopping trip and could hardly drive home because I

couldn't put my foot down on the gas pedal. My husband had to bring everything

in and put it away and the pain in just now starting to subside after 1 1/2

hours. No gout. J

[ ] Re: Neurontin

> Hi - I take Neurontin for pain in my feet - I can't walk for very

> long - maybe 30 minutes - Dr said it was because I drank a lot when I

> was in my 20's. It has stopped the pain - I only take one of the

> three per day because that works but go ahead and get the

> prescription for 3 per day so if I need them I have them.

>

> lj

>

>

> > Ron-

> > So glad you mentioned neurontin in regards to the TMJ.

> > I've been wondering if anyone here has used it succesfully for pain

> > management in here?.

> > I've worked with several patients who have been put on it for pain

> > control and the side effects seem to be less that the narcotic

> based

> > drugs.

> > Apparently, the neurontin is actually an anti-spasmodic medication-

> > which seems to be right up our alley when we're experiencing pain

> > related to inflammation.

> > Just wondering!

> > Kirsten

>

>

>

> Please visit our Psoriatic Arthritis Group's informational web page at:

> http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

>

> In August 2001 list member Jack aka(Cornishpro@...) began to

conduct extensive research which he publishes as the Psoriatic Arthritic

Research Newsletter monthly in our emails and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage.

>

> Also remember that the list archives comprise a tremendous amount of

information (Over two years of messages and answers).Feel free to browse

them at your convenience.

>

> Let's hear from some of you lurkers out there! If you have a comment or

question chances are there is a person who has been around a while who can

help you out with an educated guess for an answer. If not we can at least

steer you in the right direction with a good website to go to for the

answers.

>

> Blessings and Peace,

>

> Atwood-Stack, Founder

> Alan , Web & List Editor

> Jack , Newsletter Editor

> Pat Bias, List Editor

> Ron Dotson, List Editor

> and many others who help moderate (thank you!)

>

>

>

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  • 4 weeks later...

Alley,

I have been on neurontin for about 4 weeks. The first 10 days I had

virtually no headaches. Then they started coming back, very bad ones. I

increased from 300 mg. twice a day to 300 three times, then 4 times. The

headaches continue. I have other side effects, and tomorrow, I will start to

wean myself of this drug. It doesn't seem to be helping. I think you are

right. I read the articles. Meghan

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  • 5 weeks later...

Yes it's prescribed for pain although in my case it didn't help much.

Elavil is an anti-depressant that is prescribed for pain and it is

effective in very low doses and very inexpensive (under 10.00 CND).

You could ask the doctor to try that one as it will add to the anti-

depressants you already have plus relieve pain. Two effects for the

price of one drug. Anyway I found Elavil to be effective in my case.

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In a message dated 2/11/03 4:35:13 PM Central Standard Time,

legerpj@... writes:

> Yes it's prescribed for pain although in my case it didn't help much.

> Elavil is an anti-depressant that is prescribed for pain and it is

> effective in very low doses and very inexpensive (under 10.00 CND).

>

Anyway I found Elavil to be effective in my case.

>

>

> I was prescribed Neurontin also and didn't find any relief on it either. I

did find that the Elavil helped my pain level quite a bit--better than

anything that I have ever tried. Has anyone else had problems with Elavil

causing mood swings? I have been sooo moody and depressed since taking this

drug. I am having issues at work because of the moodiness. I feel like I am

having to choose pain relief for another set of problems. Has anyone else had

this problem?

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  • 2 weeks later...

Bob,

Can you tell me how you space out your neurontin doses throughout the day,

and what dose you started with? At one point, I corresponded a one woman who

had severe CFIDS, and had experienced a complete remission on Seastrunk's

protocol after being on it for 2 years, so I'm still very interested in

people's positive results. Can you elaborate on your experience with this

protocol? Thanks.

Peggy

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

Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome:

http://www.angelfire.com/ri/strickenbk

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  • 4 weeks later...
Guest guest

Dear Joalle,

I have two friends who completely gave up their psych meds when they used my

protocol. You can restore the proper cellular communication in the brain,

and balance your entire system, from your immune system to nervous system.

The toxemia caused by a malfunctioning liver is often mistreated with psych

meds, which ultimately cause many more problems then they solve. You can

eliminate the toxemia, and the brain fog, the depression, anxiety and mood

swings by simply providing your body the right nutritional tools....and

allow it to correct the conditions, and heal itself.

If you read the contra-indications or safety precautions on your meds you

will discover they are not safe at all, and may be doing your liver, and

your entire body harm. There is no drug for which Nature cannot provide a

better remedy.

Peace, Jeanine

http://hepchelp.homestead.com

First they ignore you,

then they laugh at you,

then they fight you,

then you win.

Mahatma Ghandi

_________________________________________________________________

Add photos to your messages with MSN 8. Get 2 months FREE*.

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  • 2 weeks later...
Guest guest

--- " sathomas55 " <sathomas55@y...> wrote:

> Okay gang, tell me what you have experienced with this drug.

> Thanks, Savannah

The only thing I've found Neurontin useful for is a peculiar

condition I sometimes get that I think is related to psoriasis. I

should point out that my worst spot of psoriasis is on my right

ankle, and pretty much covers my entire lower leg below the knee.

While I was on Remicade, it turned out that for some reason when the

Remicade started to wear off (about midway between infusions) I would

experience the most intense itching of the Ps on my ankle that I have

ever experienced. We've all experienced Ps itching, but this was on a

whole new level - almost bordering on pain. It was so bad it would

cause my right foot to tremble. It felt as though there was an

electric wire running down through the center of my foot shocking me.

The itching was literally irresistible and I scraped off so much of

the skin that my whole ankle was blood red and bled. My rheumy

prescribed Neurontin and a topical anesthetic for me. The topical

anesthetic was worthless (that's how bad the itching was), but the

Neurontin did help a bit. The next time I saw my dermatologist I

described the condition to him and he prescribed a high-potency

cortisone ointment called Ultravate. The Ultravate finally quieted

down the itching, and I subsequently switched from Remicade to

Humira.

I also tried another somewhat related anti-convulsant called Topamax.

It works pretty well - probably better than Neurontin to stop the

nervous twitch related to psoriasis itching (and the itching itself)

but the side effects are very unpleasant. The first time I took an

entire 200 mg Topamax pill, I felt like I was being electrocuted -

literally. It felt like my extremities were actually " buzzing. " Even

worst, the effect lasted for several days, although the worst of it

wore off in a couple of days. I would have been concerned except that

the PDR says there is no known overdose of Topamax. Since then, I've

tried breaking the Topamax pills up into approximately 50 mg pieces

and taking those, and the undesirable side effect is lessened but

still noticeable. I've since given up on Topamax altogether and now

take a 300 mg Neurontin capsule in addition to the Ultravate ointment

for itching whenever it gets bad. I haven't noticed any undesirable

side effects of Neurontin at all.

-- Ron

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In a message dated 4/6/2003 8:31:32 PM Eastern Daylight Time,

salo99@... writes:

> I've been taking Neurontin for about a month. I'm not sure it's all that

> great for me. My regular doc asked me if it made me sleepy [maybe the

> power of suggestion, but I think it may]. The neurologist said it is

> " promising " for psoriasis & pa, but I am not sure. She suggested that I

> stop taking it for a month & try it again to see if it makes a

> difference...so that's what I'm doing. Sylvia [p.s. reg. doc said it's

> for " nerve pain " neurologist says that's not the case]

I was on neurontin for about a year. I have Restless Leg Syndrome and took

100 mg 3x a day for it. It helped, but the medication played havoc with my

moods. I also have PMDD and get very very down for a couple of weeks a month.

I found if I missed a dose of the Neurontin it made me very very crabby and

my boss at work make comment about me being 'spacey'. *sigh* Off that and on

simet now and *sigh* prozak to counteract what that does to my moods and

buspar to counteract the shaking from the prozak.

My dad is on about 1200 mg a day of Neurontin for pain...he has ostioarthrtis

in his spine and it is helping with that. He doesn't seem to have the cranky

or spacey effect that it had on me, but I do tend to be very sensitive to

side effects from meds.

Sorry about the lousy spelling...I'm dylexic. I try, but sometimes I even

confuse the spell check. ;-)

Smile,

Becky

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Guest guest

I've been taking Neurontin for about a month. I'm not sure it's all that great

for me. My regular doc asked me if it made me sleepy [maybe the power of

suggestion, but I think it may]. The neurologist said it is " promising " for

psoriasis & pa, but I am not sure. She suggested that I stop taking it for a

month & try it again to see if it makes a difference...so that's what I'm doing.

Sylvia [p.s. reg. doc said it's for " nerve pain " neurologist says that's not

the case]

Editor's Note:

There is a good deal of debate, both among patients and medical

professionals, regarding the uses for, and efficacy of, Neurontin (gabapentin).

For those interested in learning more--from both pro, and con, points of

view--please see message #27095 ( " Neurontin " ) and the appended Editor's Note and

web link, and also Elfstrom's message (#27097, I believe) entitled " Good

Medical Article about PA " . Personal opinion: This drug is not the one I'd start

with for treating pain associated with PsA, but given its relatively innocuous

side effect and interactions profiles, if my doc thought it worth trying, I'd

probably give it a shot. However, the maker's alleged shenanigans in puffing up

its off-label utility (in PsA and other conditions as well), make me uneasy

about it.

D.]

ron_s_dotson <PA@...> wrote:--- " sathomas55 " <sathomas55@y...> wrote:

> Okay gang, tell me what you have experienced with this drug.

> Thanks, Savannah

The only thing I've found Neurontin useful for is a peculiar

condition I sometimes get that I think is related to psoriasis. I

should point out that my worst spot of psoriasis is on my right

ankle, and pretty much covers my entire lower leg below the knee.

While I was on Remicade, it turned out that for some reason when the

Remicade started to wear off (about midway between infusions) I would

experience the most intense itching of the Ps on my ankle that I have

ever experienced. We've all experienced Ps itching, but this was on a

whole new level - almost bordering on pain. It was so bad it would

cause my right foot to tremble. It felt as though there was an

electric wire running down through the center of my foot shocking me.

The itching was literally irresistible and I scraped off so much of

the skin that my whole ankle was blood red and bled. My rheumy

prescribed Neurontin and a topical anesthetic for me. The topical

anesthetic was worthless (that's how bad the itching was), but the

Neurontin did help a bit. The next time I saw my dermatologist I

described the condition to him and he prescribed a high-potency

cortisone ointment called Ultravate. The Ultravate finally quieted

down the itching, and I subsequently switched from Remicade to

Humira.

I also tried another somewhat related anti-convulsant called Topamax.

It works pretty well - probably better than Neurontin to stop the

nervous twitch related to psoriasis itching (and the itching itself)

but the side effects are very unpleasant. The first time I took an

entire 200 mg Topamax pill, I felt like I was being electrocuted -

literally. It felt like my extremities were actually " buzzing. " Even

worst, the effect lasted for several days, although the worst of it

wore off in a couple of days. I would have been concerned except that

the PDR says there is no known overdose of Topamax. Since then, I've

tried breaking the Topamax pills up into approximately 50 mg pieces

and taking those, and the undesirable side effect is lessened but

still noticeable. I've since given up on Topamax altogether and now

take a 300 mg Neurontin capsule in addition to the Ultravate ointment

for itching whenever it gets bad. I haven't noticed any undesirable

side effects of Neurontin at all.

-- Ron

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Guest guest

My daughter has been on 2400 mg. nightly for over a year. Her doctor says it is

a very safe drug, not processed through the liver. She doesn't seem to have any

side effects. Her MCS doesn't seem improved though.

Beth

Neurontin

Has anyone ever used Neurontin? Would you be willing to tell me about

your experience with it, particularly any side effects/adverse reactions

you had? My doctor mentioned it to me as a possible treatment for my

MCS. He's had great success with quite of few of his patients. Some

are now leading normal lives. That would be wonderful if I could stop

avoiding scented products and fragrances in public, but I am concerned

about the side effects, which are many. (The other CFIDS stuff I can

handle okay. The MCS has really curtailed my activities.)

Thanks in advance.

Teewinot

@>--}-- * --{--<@

Teewinot13@...

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Hi Beth and All.

Beth how has Neurontin helped your daughter, as

you said that

she has been on it for over a year and it has not helped her MCS?

Mike

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Beth O'Donnell wrote:

> My daughter has been on 2400 mg. nightly for over a year. Her doctor says it

is a very safe drug, not processed through the liver. She doesn't seem to have

any side effects. Her MCS doesn't seem improved > though.

Thanks, Beth.

Teewinot

@>--}-- * --{--<@

Teewinot13@...

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