Neurontin

[Guest guest]

Christiane,

See http://www.immunesupport.com/chat/forums/message.cfm?id=731825 & B=FM for

a discussion by users and former users.

Ellen

[Guest guest]

Katrina,

Thank you very much for your reply, the information and advice you

gave me on this drug will sure help me deciding weather to take it or

not. thank you so much again.

Take care, and hope you feel better.

Christiane

[Guest guest]

Ellen,

Thank u so much for replying and for this site, i checked it out and i

find it very useful and interesting to consult.

Thanks

Christiane

[Guest guest]

Hi I' ve been taking neurontin for 10 years, now at 1500 mg/day, but

much higher in the past. Before taking it, I had such bad vertigo and

photo-hypersensitivity I wore a mask over my eyes at all times. After two

wks of neurontin at a relatively low dose, I was able to take the mask from

my eyes and start looking at the world again. Currently, I am bedridden and

my eyes generally hurt, but I wdnt stop taking the neurontin since I wd

expect all my old symptoms to return.

Good luck.

Naomi Weisstein

Neurontin

> hi everyone,

>

> My doctor prescribed me Neurontin today, and i was reading the

> previous posts on this medication, it does not seems very

> encouraging to start it. My doctor said it is not a dangerous drug

> since he prescribed me a low dose 100 mg a day for a week and

> increasde gradually to 300 mg a day.

>

> I am mainley CFS from 11 years, and a bit of fibromialgie means i

> struggle more with tiredness, low energy etc. than muscle pain.

>

> Would love to hear from some of you who have some experience with

> this drug

>

> - The reason why your doctor has prescribed it for you?

> - Was it benefit for you?

> - Would you encourage somebody to start taking this drug or is it

> better not to take it at all?

>

> Please any advice would be very appreciated. I am not very

> enthusiasm to start this medication, espacially that I can tolerate

> the muscle pain since i do not have them every day and i take

> tylenols for it even that tylenol does not really help me much, but

> may be it is preferable to tolerate some pain than taking something

> that would just make things worse later. any thoughts?

>

> thank you so much for repling.

> Christiane

>

>

>

>

>

>

>

>

> 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]

Naomi

did you also have severe sound sensitivity when you had photo sensitivity

problems?

thanks

nil

Re: Neurontin

> Hi I' ve been taking neurontin for 10 years, now at 1500 mg/day,

> but

> much higher in the past. Before taking it, I had such bad vertigo and

> photo-hypersensitivity I wore a mask over my eyes at all times. After two

> wks of neurontin at a relatively low dose, I was able to take the mask

> from

> my eyes and start looking at the world again. Currently, I am bedridden

> and

> my eyes generally hurt, but I wdnt stop taking the neurontin since I wd

[Guest guest]

Naomi

Did you try to increase the neurotransmitter GABA before your started

Neurontin? If so, what did you do and what were the results?

thanks

mjh

In a message dated 2/4/2006 6:56:48 PM Eastern Standard Time,

utopia1@... writes:

Hi Nil:

Yes, I had severe sound sensitivity when I had the photosensitivity

problems. I couldn't listen to the radio for more than 5 minutes a day. It's

improved now, with the neurontin, but not all that much.

Naomi Weisstein

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

[Guest guest]

Hi Nil:

Yes, I had severe sound sensitivity when I had the photosensitivity

problems. I couldn't listen to the radio for more than 5 minutes a day. It's

improved now, with the neurontin, but not all that much.

Naomi Weisstein

Re: Neurontin

>

>

> > Hi I' ve been taking neurontin for 10 years, now at 1500 mg/day,

> > but

> > much higher in the past. Before taking it, I had such bad vertigo and

> > photo-hypersensitivity I wore a mask over my eyes at all times. After

two

> > wks of neurontin at a relatively low dose, I was able to take the mask

> > from

> > my eyes and start looking at the world again. Currently, I am bedridden

> > and

> > my eyes generally hurt, but I wdnt stop taking the neurontin since I wd

>

>

>

> 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]

Hi mjh and everybody:

No, I didn't try increasing the neuro-transmitter GABA before I started on

the neurontin. HOw is that done?

Naomi Weisstein

Re: Neurontin

>

>

>

> Naomi

>

> Did you try to increase the neurotransmitter GABA before your started

> Neurontin? If so, what did you do and what were the results?

>

> thanks

> mjh

>

> In a message dated 2/4/2006 6:56:48 PM Eastern Standard Time,

> utopia1@... writes:

>

> Hi Nil:

>

> Yes, I had severe sound sensitivity when I had the photosensitivity

> problems. I couldn't listen to the radio for more than 5 minutes a day.

It's

> improved now, with the neurontin, but not all that much.

>

> Naomi Weisstein

>

>

>

>

> mjh

> " The Basil Book "

> http://foxhillfarm.us/FireBasil/

>

>

>

[Guest guest]

Kathy,

Thanks for sharing your experience too. if I am understanding you

correctly, you think you are building up a tolerance. I will keep

that in mind. Do you wake up groggy? Ann

> >

> > > , Guess what? Rand just prescribed neurontin for my

burning

> leg

> > > pain. Good call!! I will take it at bed time and see how it

> goes. You

> > > wrote that you couldn't take it, may I ask why?

> >

>

[Guest guest]

Hi Jennefer,

Ihave been taking Nerontin 3X a day and it has been very helpful in

taking the pain away in my feet.

As far as my Neurologist is concerned it is quite safe , and can be

increased without major side affects. Again each person is different. But for me

it has been a God send for the pain in my feet. Now if I could just get

something to take care of the arthritic pain in my knee, hip and ankle I would

feel even better.

Barb C

[Guest guest]

,

I take 800mg Neurontin: 2 tabs 3x a day. So I take 4800mg daily. And yes there

are side effects. I get tics, sleepy, and there were more when I first started

them. After a year the side effects have lessened.

[Guest guest]

I take Neurontin 400 mg 3 times a day. At first I had a problem with falling

asleep but that does not happen anymore.

Barb C

[Guest guest]

I took Neurontin for 2 years and never could get up to a therapeutic

dose. I have (had) a very quick mind, but under the influence of

Neurontin it took me days -- really -- to remember Lithgow's name

or the name of the tool I had to rent to cut off a padlock was a bolt

cutter.

I left Neurontin and moved to Lyrica. As it was me, I immediately got

into a shouting match with Anthem Blue Cross, but they finally caved

after 2 months. Lyrica appears to be a metabolite of Neurontin without

the mind numbing side effects. My neuropathic pain is managed better

and my mind seems to work better.

-- Larry

>

> I take Neurontin 400 mg 3 times a day. At first I had a problem

with falling asleep but that does not happen anymore.

>

> Barb C

>

[Guest guest]

Hi victoria i looked this up for you.Hope this helps God bless michele

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[Guest guest]

Hi Missy,

I took Neurontin at 900 mg daily for a year. Everything was fine with

it for 6 months at that dose, until I noticed I was having really bad

tremor surges in the mornings. First I thought this might be from

coffee and Neurontin, so I quit drinking coffee. Still had bad tremor

surges following the morning dose. So, I cut the dose down to 600 mg,

1 in the afternoon, 1 at night. This was OK until about 9 months when

I started experiencing the tremor surges after the first dose in the

afternoon. I had pretty much reached the conclusion the Neurontin was

causing this, and backed down to 300mg 1 time a day for the remainder

of the year. By the time I saw my doctor and he asked how my year of

Neurontin had been I had quite a full report.

Of course he suggested I stick with it - ahem, " those tremors aren't

so bad " ... I flat out said " It did help with the electrical type

pain but that is gone now and these tremors DO irritate me and I am

not taking it anymore! He wrote the script anyway, handed it to me, I

took it and tore it in little pieces and replied " you really need to

improve your listening skills! "

Like I said, initially, I found Neurontin very helpful, but as time

went on, it just kind of 'wired' the rest of my nerves too much. Not

at all what I wanted or want.

Since you are on such a low dose, it won't be too hard to back

yourself down off of it. Did you start at 300? Or less? If you

started at 100, then back yourself off by 100 mg to 200 mg for a week

or two, then 100 for the two weeks after that. I would also suggest

you contact your doc expressing your findings and wishes, and if you

need something else for pain, start that new med (example, Lyrica)

before you are completely off Neurontin.

~ Gretchen

[Guest guest]

Gretchen,

Thank you so much for your help. Now I do not feel like it is just in my head

or something. Neurontin is causing theses weird things to happen. Thank you

very much for the advice, I will take it. I just can not stand the way that it

is making me feel anymore. Thanks again:)

Missy

gfijig <fijiwigged@...> wrote: Hi Missy,

I took Neurontin at 900 mg daily for a year. Everything was fine with

it for 6 months at that dose, until I noticed I was having really bad

tremor surges in the mornings. First I thought this might be from

coffee and Neurontin, so I quit drinking coffee. Still had bad tremor

surges following the morning dose. So, I cut the dose down to 600 mg,

1 in the afternoon, 1 at night. This was OK until about 9 months when

I started experiencing the tremor surges after the first dose in the

afternoon. I had pretty much reached the conclusion the Neurontin was

causing this, and backed down to 300mg 1 time a day for the remainder

of the year. By the time I saw my doctor and he asked how my year of

Neurontin had been I had quite a full report.

Of course he suggested I stick with it - ahem, " those tremors aren't

so bad " ... I flat out said " It did help with the electrical type

pain but that is gone now and these tremors DO irritate me and I am

not taking it anymore! He wrote the script anyway, handed it to me, I

took it and tore it in little pieces and replied " you really need to

improve your listening skills! "

Like I said, initially, I found Neurontin very helpful, but as time

went on, it just kind of 'wired' the rest of my nerves too much. Not

at all what I wanted or want.

Since you are on such a low dose, it won't be too hard to back

yourself down off of it. Did you start at 300? Or less? If you

started at 100, then back yourself off by 100 mg to 200 mg for a week

or two, then 100 for the two weeks after that. I would also suggest

you contact your doc expressing your findings and wishes, and if you

need something else for pain, start that new med (example, Lyrica)

before you are completely off Neurontin.

~ Gretchen

---------------------------------

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[Guest guest]

Missy:

Have you tried Lyrica. Lyrica is a metabolite of gabapentin(Neurontin) and has

fewer side effects. I couldn't take a therapeutic dose of Neurontin and stay

awake teaching. I started on Lyrica in December, 2005 and am very happy with it.

Old Blue Cross/Blue Shield didn't want to cover it without making me

jump few a few hoops, but the hoops are very low. They wanted me to

try Elavil, an anti-depressant first. I told them I had taken it back

in the 70's and it didn't work. I was telling the truth, but as they

didn't check, I am sure you could say the same.

--Larry

[Guest guest]

I was on 3200 mgas of neurontin a day for my severe pain. it was good for a

while. then i noticed i would feel over whelmed or down in the dumps. well my

doctor gave me amitriptalyne he said it would help the blues... then i got

over anxious about every day things like buying groceries or going to town.. so

he gave me a anti anxiety pill then cam e the thought of suicide.. and other

antidepressnt. in january i weaned my self off all this stuff. i had three

weeks of hallicinations and nightmares but i got off all of it. i feel okay so

far no ther pain meds are working so we are trying a low doese of neurontin

again. i also take alpha lipoic acid, creatine, and a low dose of b complex..

recetly i noticed a comercial for a lawyer advertising if you or a family member

committed suicide or tried to commit suicide on neurontin call. sure makes me

wonder what the FDA is approving for us to take. the pains are worse than

ever but the side effects of neurontin were worse for me..oh did i mention

feeling fuzzy headed...oh well pain and a clear head is oksy for me right now.

cathleen in arkansas

[Guest guest]

Larry,

Thank you very much for the advice!

Missy

Larry Shield <shieldlp@...> wrote:

Missy:

Have you tried Lyrica. Lyrica is a metabolite of gabapentin(Neurontin) and has

fewer side effects. I couldn't take a therapeutic dose of Neurontin and stay

awake teaching. I started on Lyrica in December, 2005 and am very happy with it.

Old Blue Cross/Blue Shield didn't want to cover it without making me

jump few a few hoops, but the hoops are very low. They wanted me to

try Elavil, an anti-depressant first. I told them I had taken it back

in the 70's and it didn't work. I was telling the truth, but as they

didn't check, I am sure you could say the same.

--Larry

---------------------------------

See the all-new, redesigned .com. Check it out.

[Guest guest]

Cathleen,

Thank you for sharing. It helps me to know that I am not alone with my

problems. Thank you!

Missy

[Guest guest]

Cathleen,

Thank you for your post. My sister is taking Neurontin and has had

all of your same symptoms. I will let her know it could be her medication.

Thanks again

[Guest guest]

Hi Missy,

I have been without a computer for over a week so I'm trying to catch

up. As far as your question on Neurontin I think your dossage is

really small and you shouldn't have to wean off too much. There are

people put there taking 2000mg of the stuff. Tt is supposed to help

with nerve pain. It also helps with sleep which with CMT is something

I don't need more of.

O was on it and it made me feel worse. I found in a medical report

that CMT can be triggered by metal toxicity. Neurontin has Iron oxide

and titanium dioxide in it. i think that is why I was feeling worse.

I have had some really bad pain in the past year. I found out that it

is at it's worse when I over exert myself. My legs go into spasms and

I have trouble getting them out.

I have tried every neurological drug out there. None helped, only

made me tired and moody.

I now take supplements which have helped me 100%. All the supplements

I take you can get in the drug store or Health food stores. If you would like my

list e-mail me. I'm not a doctor and they might

not work for everyone but I have done two tests. Gone on them for 3

months, felt great . Took myself off and became symptomatic again. So

I rely on them instead of the constant " try this or that " the doctors

keep trying.

The last neurological drug they wanted me to go on was so hard on your liver

that they wanted me to have liver function test every 3 months. No thanks I

said. I will try an alternative method.

So far it is working. The bad part is the insurance doesn't cover it

so it an be expensive. But i feel it's worth it not to have the

intense pain.

Good luck,

Briget

[Guest guest]

Missy and Briget:

I am 53 and have been taking Neurontin for 11 yrs. 4200 mg was my high but now

on 2400. It gives me great relief and zero side effects, certianly not

drowsiness. Guess it affects all differently. The way it helps with sleep is to

control the pins and needles and all the other jumping from spot to spot pains

that come with CMT. Neurontin also makes it where I can stay on my feet longer

so I am more active, it does not help with the balance, falling, or wooden lower

legs, feet forearms or hands. Regretfully I smoke so I do not know when I drop

my cigarette which means I'll probably burn myself up.

Good Luck

Mike in Texas

[Guest guest]

Dennis.

A friend told me about Aussie pharmacy. I have not checked it out and maybe

you already know about them but here is the URL:

http://tinyurl.com/pp584

2601

" il faut d'abord durer " Hemingway

[ ] Neurontin

> My wife had tests done last week because of problems and pain with her

> feet

> and legs. Her doc wants her to take Neurontin, but it's a little

> expensive.

> Where can we get it affordably? I've looked at a few programs on line but

> have no luck yet.

>

> Dennis in Eastexas

> " It's not Rocket Surgery "

>

>

>

[Guest guest]

That's what I was hoping for, but have no luck finding it. I had a big

bottle of it but got rid of it since " I'll never need it again " . Sure....

Now it's for the wife and with no insurance coverage, they will cost almost

$2 per pill! That's hard to afford.

Dennis in Eastexas

" It's not Rocket Surgery "

Re: [ ] Neurontin

> Hi Dennis,

>

> Perhaps the pharmaceutical company that manufactures Neurotin has an

> assistance program where they will provide free of charge. Its worth a

> try. Hugs

>

> betnden@... wrote:

> My wife had tests done last week because of problems and pain

> with her feet

> and legs. Her doc wants her to take Neurontin, but it's a little

> expensive.

> Where can we get it affordably? I've looked at a few programs on line but

> have no luck yet.

>

> Dennis in Eastexas

> " It's not Rocket Surgery "