Neurontin

[Guest guest]

Are you all weaning off the Neurontin just because of the weight gain

side effect? Or is it because of other side effects? My dose is up

there at 3000 mg a day. 900 am , 900 at noon, and 1200 at bedtime.

I have been on neurontin for almost 4 years now actually. My dosage

was not increased though until I started with my back problems. I

would rather deal with being a little tired than having the severe

pain myself. I have heard about all of the lawsuits over Neurontin

now-a-days. Are you all thinking that you do better pain wise of the

drug?

Pia

[Guest guest]

pia, yes i am unhappy about the weight gain which i assume is from the

neurontin

but i am also miserable about the quality of my life right now. the

overwhelming fatigue and isolation from being too tired to do much. today was

the

first day

without any neurontin (so far) i am feeling pretty good. some electricity

going down the legs all day but not enough for me to pick up the neurontin.

i started the day with the gym. i will see how tomorrow goes. marsha

[Guest guest]

pia, yes i am unhappy about the weight gain which i assume is from the

neurontin

but i am also miserable about the quality of my life right now. the

overwhelming fatigue and isolation from being too tired to do much. today was

the

first day

without any neurontin (so far) i am feeling pretty good. some electricity

going down the legs all day but not enough for me to pick up the neurontin.

i started the day with the gym. i will see how tomorrow goes. marsha

[Guest guest]

I understand the point of feeling very tired with it, but at the

moment , I am kind of stuck with the intense pain that I am in. I am

at the maximum of the Duragesic patch that I am on right now and am

alright fatique wise, until I sit down!! Then I could fall asleep in

a heart beat. As long as I am active, I can do what I need to. I am

still very bitchy though.

I am having another side effect this week and I am not sure what to

make of it. I am having a bunch of swelling in my left hand, but now

it is in my left foot as well. I had started thinking that it was a

Lupus flare, but now I am not as sure. I am going to ask PT to look

at things this morning. I have an appointment with the nuerosurgeon

that did my back surgery in August, then I have an appointment with

the attorney today at 2pm. I need to get my medical records to go

over my hosiptal records in a clear state. I was on so much morphine

when I was in the hospital that my memory could be different than it

is. I'll see what the attorney says.

Pia

[Guest guest]

I understand the point of feeling very tired with it, but at the

moment , I am kind of stuck with the intense pain that I am in. I am

at the maximum of the Duragesic patch that I am on right now and am

alright fatique wise, until I sit down!! Then I could fall asleep in

a heart beat. As long as I am active, I can do what I need to. I am

still very bitchy though.

I am having another side effect this week and I am not sure what to

make of it. I am having a bunch of swelling in my left hand, but now

it is in my left foot as well. I had started thinking that it was a

Lupus flare, but now I am not as sure. I am going to ask PT to look

at things this morning. I have an appointment with the nuerosurgeon

that did my back surgery in August, then I have an appointment with

the attorney today at 2pm. I need to get my medical records to go

over my hosiptal records in a clear state. I was on so much morphine

when I was in the hospital that my memory could be different than it

is. I'll see what the attorney says.

Pia

[Guest guest]

pia, good luck with everything. that is a lot to be going thru. marsha

[Guest guest]

pia, good luck with everything. that is a lot to be going thru. marsha

[Guest guest]

nancy, i'm with you. i am on 4 medications for my asthma and none of them

is an inhaler that you walk with. i was also wondering if the neurontin was

interfering with my breathing. sometimes that is a struggle. anyway, today

is day 2 off the neurontin and i am feeling pretty terrific. i am back weight

training. then i went to work. then i went to a movie, the i went to

barnes and nobel to buy books. i have not been able to do this level of

activity

in months. and i don't know if i will be able to do it tomorrow. i had a

little bit of the electricity in my hip and down the back of my legs. and my

back hurt for a little bit for about maybe an hour.

but i weight trained for just under 1-1/2 hours this morning and i was

feeling very strong today. my therapist and my neurosurgeon but feel that if i

can strengthen my abs and butt, i might be able to avoid surgery. that is a

good thing. i don't believe in daily narcotic therapy. i believe the cure is

in physical therapy and weight strenghtening in the gym. what i have is

stenosis and spondylolethesis (level 1) in the lumbar region i think l4 & l5.

i

also have other issues. 2 herniated discs in my neck and avascular necrosis

in my knees and hips as a result of taking oral steroids. good health or at

least better health to all of us. marsha

[Guest guest]

nancy, i'm with you. i am on 4 medications for my asthma and none of them

is an inhaler that you walk with. i was also wondering if the neurontin was

interfering with my breathing. sometimes that is a struggle. anyway, today

is day 2 off the neurontin and i am feeling pretty terrific. i am back weight

training. then i went to work. then i went to a movie, the i went to

barnes and nobel to buy books. i have not been able to do this level of

activity

in months. and i don't know if i will be able to do it tomorrow. i had a

little bit of the electricity in my hip and down the back of my legs. and my

back hurt for a little bit for about maybe an hour.

but i weight trained for just under 1-1/2 hours this morning and i was

feeling very strong today. my therapist and my neurosurgeon but feel that if i

can strengthen my abs and butt, i might be able to avoid surgery. that is a

good thing. i don't believe in daily narcotic therapy. i believe the cure is

in physical therapy and weight strenghtening in the gym. what i have is

stenosis and spondylolethesis (level 1) in the lumbar region i think l4 & l5.

i

also have other issues. 2 herniated discs in my neck and avascular necrosis

in my knees and hips as a result of taking oral steroids. good health or at

least better health to all of us. marsha

[Guest guest]

>

> > Hi, to those on nuerontin, please be careful of the side effects! I was

on

> nuerontin and had a horrible time, anyone wants to email me seperately i

> will go into more detail..eve

To those that had problems w/it. Did you go up to a specified dose or

only up to what helped you? Did you go up gradually, like adding only

100mgs every 4-5 days? Did you go off it just as gradual?

[Guest guest]

Please e-mail me about the side effects you

suffered.Thanks

--- /Rodney <rod@...> wrote:

>

>

>

> >

> > > Hi, to those on nuerontin, please be careful of

> the side effects! I was

> on

> > nuerontin and had a horrible time, anyone wants to

> email me seperately i

> > will go into more detail..eve

>

>

>

> To those that had problems w/it. Did you go up to

> a specified dose or

> only up to what helped you? Did you go up

> gradually, like adding only

> 100mgs every 4-5 days? Did you go off it just as

> gradual?

>

>

[Guest guest]

> I take a 800mg tab 2 2x day.

Would that be 3200 a day? I was on 4000 at one time, but went down to

3200 then after 6 months, 2400. Have heard of people in the 5000+ range.

Not fun!

> That is 1600 mg 4 x day and a total of 8 Neurontin tabs that are 800

> mg.

OK , you lost me LOL but that isnt hard to do LOL do you take 800 4xs a

day, or 1600 4 times a day?

[Guest guest]

--

I take 1600 mg 4 times a day. I have been trying to cut back and not

take over 5 of the 800 mg tabe a day. That would be 4000 mg.

My prescription says 2 tabs 4 times a day and they are the 800 mg

tab. So thats 1600 at a time.

I know I can't explain but most people don't know that there is a 800

mg neurontin tablet.

Neurontin makes me feel better but I do get the edema.

When you say not fun what happened?

I don't know if being on this for as long as I have and the dosage is

harmful. My Dr doesn't think so and I worry about it but like I said

earlier it's the only thing that helps my brain not to be spacey.

Sandy

- In , " /Rodney " <rod@g...> wrote:

> > I take a 800mg tab 2 2x day.

>

> Would that be 3200 a day? I was on 4000 at one time, but went

down to

> 3200 then after 6 months, 2400. Have heard of people in the 5000+

range.

> Not fun!

>

>

> > That is 1600 mg 4 x day and a total of 8 Neurontin tabs that are

800

> > mg.

>

>

> OK , you lost me LOL but that isnt hard to do LOL do you take

800 4xs a

> day, or 1600 4 times a day?

[Guest guest]

When I started taking neurontin I had really bad side effects, then I had it

made without the titanium dioxide....which is a filler that they use. I am

taking 300mg 3X per day and find I have no side effects at all. It really

helps with muscle spasm pain. I am unable to take any other pain killers

because of my liver. I would really recommend trying it without the

titanium dixoide if you have a bad reaction.

Re: [ ] Neurontin

>

>> I take a 800mg tab 2 2x day.

>

> Would that be 3200 a day? I was on 4000 at one time, but went down to

> 3200 then after 6 months, 2400. Have heard of people in the 5000+ range.

> Not fun!

>

>

>> That is 1600 mg 4 x day and a total of 8 Neurontin tabs that are 800

>> mg.

>

>

> OK , you lost me LOL but that isnt hard to do LOL do you take 800 4xs a

> day, or 1600 4 times a day?

>

[Guest guest]

> I know I can't explain but most people don't know that there is a 800

> mg neurontin tablet.

>

> Neurontin makes me feel better but I do get the edema.

> When you say not fun what happened?

I was on the 800, I liked the 400 better since it was a capsule not

caplet, seemed to work better. Usually people on the higher doses were

sleepy/loopy all the time. I took mine at night and felt fine after about 12

hours. Dr wanted me on a high dose but I had relief at far less so backed

off the rx to that. Was on it for almost 4 years. When I went off all Lyme

tx I went off the pain meds too.

[Guest guest]

Hi Kirsten. Neurontin is prescribed for nerve pain. Originally an

anti-seizure medication, neurontin is prescribed for nerve pain which

can be a result from RA or FM. It is prescribed for FM quite a bit.

http://www.drugs.com/neurontin.html

a

On Apr 13, 2005, at 7:33 AM, SoulfoodAlpacas@... wrote:

>

> Good morning,

>

> At my last rheumatologist appointment my doctor prescribed neurontin.

> (I 

> have RA and fibromyalgia). We covered so much in a short time, I'm

> having 

> difficulty remembering what purpose this drug serves. I have a call

> in to her  for

> clarification, but am curious if anyone else with either RA or

> fibromyalgia 

> has used this drug, and to what end.

>

> Thanks in advance for sharing your knowledge and experience,

>

> Kirsten Kraushaar, MN

>

>

>

[Guest guest]

Hi Kirsten. Neurontin is prescribed for nerve pain. Originally an

anti-seizure medication, neurontin is prescribed for nerve pain which

can be a result from RA or FM. It is prescribed for FM quite a bit.

http://www.drugs.com/neurontin.html

a

On Apr 13, 2005, at 7:33 AM, SoulfoodAlpacas@... wrote:

>

> Good morning,

>

> At my last rheumatologist appointment my doctor prescribed neurontin.

> (I 

> have RA and fibromyalgia). We covered so much in a short time, I'm

> having 

> difficulty remembering what purpose this drug serves. I have a call

> in to her  for

> clarification, but am curious if anyone else with either RA or

> fibromyalgia 

> has used this drug, and to what end.

>

> Thanks in advance for sharing your knowledge and experience,

>

> Kirsten Kraushaar, MN

>

>

>

[Guest guest]

Kirsten,

I know there are pros and cons on Neurontin, but as far as I am concerned, I

wish I owned stock in the manufacturer. My Dr. Rx'd it for me for paid due to

Rheumatic Neuropathy. He explained that it was pain from frayed nerve

endings due to the RA. At first I was a zombie, could not drive, etc. but as

we

built up to a dosage of 400 mg 4 times per day, I really am able to do things

.. I am alert to drive, able to work out, and last time we went to Reno I

stayed up with the grown ups and actually wore heels (low...but heels all the

same). When my pain is more than I can handle, I am able to take an extra

100mg once per day. It has some side affects, weight gain, but I have been one

if for over 1-1/2 years and am evening out and starting to normalize my

weight.

I hope this helps.

Gentle Hugs,

Carol M. in CA

[Guest guest]

Kirsten,

I know there are pros and cons on Neurontin, but as far as I am concerned, I

wish I owned stock in the manufacturer. My Dr. Rx'd it for me for paid due to

Rheumatic Neuropathy. He explained that it was pain from frayed nerve

endings due to the RA. At first I was a zombie, could not drive, etc. but as

we

built up to a dosage of 400 mg 4 times per day, I really am able to do things

.. I am alert to drive, able to work out, and last time we went to Reno I

stayed up with the grown ups and actually wore heels (low...but heels all the

same). When my pain is more than I can handle, I am able to take an extra

100mg once per day. It has some side affects, weight gain, but I have been one

if for over 1-1/2 years and am evening out and starting to normalize my

weight.

I hope this helps.

Gentle Hugs,

Carol M. in CA

[Guest guest]

hello, Kirstin. My doc prescribed Neurotin for me, as well. He

gave it to me for pain and to help me sleep. I also have RA and

FM....Marina

>

> Good morning,

>

> At my last rheumatologist appointment my doctor prescribed

neurontin. (I

> have RA and fibromyalgia). We covered so much in a short time, I'm

having

> difficulty remembering what purpose this drug serves. I have a

call in to her for

> clarification, but am curious if anyone else with either RA or

fibromyalgia

> has used this drug, and to what end.

>

> Thanks in advance for sharing your knowledge and experience,

>

> Kirsten Kraushaar, MN

>

>

>

[Guest guest]

hello, Kirstin. My doc prescribed Neurotin for me, as well. He

gave it to me for pain and to help me sleep. I also have RA and

FM....Marina

>

> Good morning,

>

> At my last rheumatologist appointment my doctor prescribed

neurontin. (I

> have RA and fibromyalgia). We covered so much in a short time, I'm

having

> difficulty remembering what purpose this drug serves. I have a

call in to her for

> clarification, but am curious if anyone else with either RA or

fibromyalgia

> has used this drug, and to what end.

>

> Thanks in advance for sharing your knowledge and experience,

>

> Kirsten Kraushaar, MN

>

>

>

[Guest guest]

--- In , Ron <rhbailey@d...> >

I'm wondering if anyone here became suicidal while taking Neurontin, or

was

> anyone helped by it?

>

> Sue ,

> Upstate New York

Sue, for 22 years I had feelings of out-of-body experiences, feelings

of disassociation with my surroundings. I learned to live with these

feelings but they were horrible. I went to the pyschiatist in Texas who

prescribed high doses and neurontin cured those feelings and I have not

had them since. I was at 4,800mg per day and have reduced that to

1,200mg. I started taking neurontin about 8 years ago and had no

suicidal thoughts until about a year ago but these are because my

migraines are almost all the time now and getting harder to bear. I am

thinking of slowing going back up to higher doses to see if migraines

go away.

Bob

[Guest guest]

Sue,

Back the early years of my illness, 1995 to 1996 my neurologist tried

Neurontin with me for my severe migraine headaches and sensory overloads (a

seizure like event). After tittering up to e very high dose we saw no

improvement and stopped it. I did not have any increased suicidal feelings

while on it. I was at that time under the care of a very psychologist for

my concurrence depression and need to develop a coping mode for the

tremendous changes that this illness had taken on my life, health, career

and financial situation. If a medication would take me over the edge this

was the time in my experience with CFS/FMS et al that it most likely would

have happened.

Shalom, W

-----Original Message-----

Hi all,

There was a brief article in yesterday's Times that mentioned neurontin.

http://www.nytimes.com/2005/04/22/business/22fda.html

The article says the Food and Drug Administration has begun a preliminary

inquiry into whether epilepsy drugs may increase the risk of suicidal

behavior in some patients, particularly those who use them for psychiatric

illnesses.

The " inquiry was prompted in part by a lawyer's claims against a leading

anticonvulsant, Neurontin... "

It seems to me that Lapp was recommending Neurontin for CFS in the

'90s, and there was a fellow in Texas who was using extremely high doses.

And I think there was a nurse who had a website or listserve, and said that

Neurontin had cured her.

And here's a quote from Carol Sieverling's Cheney report, part II:

" Klonopin/Neurontin

" Patient asks: 'Klonopin only upregulates the GABA receptor, is that

right?'

" Dr. Cheney responds: 'Yes. But that has an indirect effect on the NMDA

receptor, through the GABA receptor. By upregulating [increase a response to

a stimulus] GABA, you downregulate NMDA and reduce nitric oxide.' [Thus,

Klonopin and Neurontin can help reduce nitric oxide.] "

I'm wondering if anyone here became suicidal while taking Neurontin, or was

anyone helped by it?

Sue ,

Upstate New York

[Guest guest]

In a message dated 4/22/2005 5:50:58 AM Pacific Daylight Time,

rhbailey@... writes:

I'm wondering if anyone here became suicidal while taking Neurontin, or was

anyone helped by it?

not suicidal, but it definitely made me very depressed the next day and

others I know who took it say the same thing. There's a class action law suit

about neurontin and suicide that I saw advertised on t.v.

Neurontin will raise the threshold for neuronal firing and thus make

those of us subject to " stimulus overload " feel better, but it has a rebound

effect when you don't take it.

Also, it is extremely fatiguing (all we need, right?).

[Guest guest]

I love neurontin -- it's the only medication that gives me a good night's

sleep. I don't take it daily though -- I take it in spurts when I'm having a

bad bout of insomnia. I don't have a drug hangover the next day at all. In

fact, I wake up sometimes with this lucidity that reminds me of how my brain

used to be, and then it almost immediately dissipates and I'm back to my

cognitively impaired self. If I take it more often, it simply doesn't work and

in

fact seems to make things worse.

I do think it might be blunting my emotions a little bit though. I don't

feel more depressed after taking it, just more numb.

Peggy