Neurontin

[Guest guest]

Initially, it was prescribed to help her sleep. It doesn't really do the trick

for her as far as getting her to fall asleep, but she says it is better than

nothing. She used to have these weird little seizure-like episodes (temporary

paralysis) since she has had cfids, and the Neurontin seems to have stopped

those, so she wants to stay on it.

The doc has her take 600mg about 7pm and 1800 at bedtime (9pm). It's advised to

take with protein.

Beth

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

[Guest guest]

I'm on 4800 mg of Neurontin/day, split into 4 doses. I don't have any

problems with it, but take my daytime doses with protein, as it keeps the

side effects down (made me kind of spacey/tired - more so than my usual

state of spacey/tiredness - early on). I have often taken it w/o protein

with no problems, but have been on it for a while now.

I was originally put on it in hopes of reducing my MCS. My EI doc put me on

it, but was not comfortable going above 3200 mg/day. At that level, it

helped, but did not totally relieve my burning skin and other neuropathies,

but did nothing for my MCS.

In the fall of 2001, I was found to have a coagulation defect which causes a

deficiency in an enzyme necessary for maintenance of the myelin sheath, so

my CFIDS doc upped my dose to 4800 mg/day. It has helped my burning skin,

some of my headaches, and most of my neuropathies. It has not done wonders

for my MCS, although as I think about it, there have been small improvements

in my tolerance to certain substances. I can't really explain well, but it

seems that there are times when I can maintain more of my cognitive

abilities for a little longer (like I might make it cognitively through a

rare church service), but my legs will still give way pretty quickly. Have

you seen Dr. Seastrunk's work on Neurontin for MCS? I don't remember his

statistics, but he said there was a group that responded right away, a group

that could take up to two years or so to respond, and then there were

nonresponders. He did, on occasion, go up to 6400 mg/day, but I'm not

willing to go that high, unless perhaps I became totally healthy and the

only thing that kept me from a life was MCS! LOL!

Donna in NC

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.

[Guest guest]

Hi Donna,

> I'm on 4800 mg of Neurontin/day, split into 4 doses. I don't have any

> problems with it, but take my daytime doses with protein, as it keeps the

> side effects down (made me kind of spacey/tired - more so than my usual

> state of spacey/tiredness - early on). I have often taken it w/o protein

> with no problems, but have been on it for a while now.

Thanks for your response. Yes, I've seen Dr. Seastrunk's info. My doc

gave my stuff to read, and I did my own research. I think I'm going to

pass on this drug. From all I've read, it has a large number of common

side effects, and since I got CFIDS, I get every side effect a drug has.

Nothing ever agrees with me.

Thanks again and to everyone else who responded.

Teewinot

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

Teewinot13@...

[Guest guest]

Hi All,

I would like to know the reason(s) that people with CFS are

taking

Neurontin and if it is helping them.

Thanks,

Mike

[Guest guest]

Hi Mike,

I' ve got no experience with using neurontin but

http://home.tampabay.rr.com/lymecfs/index.html covers a lot of information about

neurontin. I found this one in my bookmarks. Hope it is of any use for you.

Dennis

Re: Neurontin

Hi All,

I would like to know the reason(s) that people with CFS are

taking

Neurontin and if it is helping them.

Thanks,

Mike

[Guest guest]

You are very welcome, Kathe. I thought it was very important for people

that are taking this medication to have the full facts. I know I

certainly would like to.

Hugs,

Joan

Kathe Sabetzadeh wrote:

> Joan:

>

> Thanks so much for sending this information on - it is

> very much appreciated.

>

> Kathe in CA

>

[Guest guest]

My mother was given that but it didn't help her I can't remember what the

side affect was right now but the reason we took her off of it was because of

side affects. This was one of the drugs she was given before we found out she

had cancer. Her original doctor was treating her for pain only and never

diagnosed the cancer when I changed doctors the second doctor listened and

diagnosed

her cancer to late to do anything for her. The reason some drugs did not

work for her is that they were not treating the cancer which was the cause of

the

pain in her case. So you may want to try it for a trial period if your

doctor thinks it will help and if it doesn't then tell him.

S.

Bagwell Funny Farm

Paducah, KY

<A HREF= " mailto:bagwellf@... " >bagwellf@...</A>

<A

HREF= " http://bagwell-kids.tripod.com/BagwellFunnyFarm/ " >http://bagwell-kids.trip\

od.com/BagwellFunnyFarm/</A>

We're Praying for Our Troops

The Presidential Prayer Team

<A

HREF= " http://www.presidentialprayerteam.org/ " >www.presidentialprayerteam.org</A>

[Guest guest]

Thanks for the information. I'll probably give it a try for a few

weeks to see if it helps. So sorry about your mother, it doesn't seem

right that a doctor doesn't pursue the cause of the pain.

[Guest guest]

I have been taking Neurontin for a few years now. It was prescribed

to alleviate my back pain. I took it through the whole course of my

TX, without any problems. It is an anti spasmodic [for us spazes]

(sp?) I was given it in conjunction with Elavil. I have had no sides

from either and even though neither are specifically for pain, they

are prescribed for it routinely. About the sides thing......I had no

sides from the Peg Reba either, so I may not be the perfect person

to advise you on how they are. They just knock my @$$ out and I wake

up rested and alert. It's nice to make it through a whole night.

> Do any of ya'll take neurontin for the pain associated with HepC?

My doc

> prescribed it, can't tell yet if it is going to help or not. I had

> never heard of it before and don't recall any heppers talking

about it.

> Thanks,

> Anne

[Guest guest]

On or around Friday, October 24, 2003 1:16 PM [GMT+1=CET],

LymePrincess70@... <LymePrincess70@...> sprinkled letters onto the

page, saying:

> In a message dated 10/23/2003 7:36:29 PM Eastern Standard Time,

> timibug2@... writes:

> Robyn,

> I am wondering if you got my e mail asking about where you are in

> South Carolina and who the doc is. I am moving there next week.

> I too have neuropathy in my face especially and they tried neurontin

> on me and I have had wild side effects even just taking 200 mgs.

> I know a lot of people are on it for that but I know I cannot take it.

Hi,

I was on carbamazepine (Tegretol) for many years and changed to neurontin

(Gabapentin) for a break. Didn't do the job for me. Am now back on the

carbamazepine and a happier bunny.

Regards,

Kezzi. . .

[Guest guest]

In a message dated 10/24/2003 11:10:57 AM Central Daylight Time,

amsan@... writes:

> Am now back on the

> carbamazepine and a happier bunny.

>

Neurontin's effects wore off on me over time. I can only take it at night to

relieve restless leg. When I was at the beginning doses, I had strange

visual patterns when I closed my eyes. In time those effects went away. For

some

years in the '90s people in S. Calif. were taking high dose neurontin with

really some terrible effects..some with weight gain and others with assorted odd

symptoms.. Now I understand there is a class action against the manufacturer

of neurontin. I wonder if GABA supplement would work just as well as neurontin

and without the side effects?

Donna

[Guest guest]

On or around Friday, October 24, 2003 11:19 PM [GMT+1=CET],

alopeztcr@... <alopeztcr@...> sprinkled letters onto the page,

saying:

> Neurontin's effects wore off on me over time. I can

> only take it at night to relieve restless leg. When I was

> at the beginning doses, I had strange visual patterns when

> I closed my eyes. In time those effects went away. For

> some years in the '90s people in S. Calif. were taking high

> dose neurontin with really some terrible effects..some with

> weight gain and others with assorted odd symptoms.. Now

> I understand there is a class action against the manufacturer

> of neurontin. I wonder if GABA supplement would work

> just as well as neurontin and without the side effects?

> Donna

Hi,

many people on my Guillain-Barré syndrome group take neurontin, some in high

doses. There is a weight problem for some that I'd never put down to

neurontin - more to the immobility of some GBS patients. Then again, I'm

more mobile than others and I did experience a sudden weight gain some time

back in the '90s. It would be interesting to see of this fits in with the

time I was taking neurontin which was around '98-'99. Some of the

side-effects of neurontin read like fibromyalgia!! I don't know anything

about the GABA supplement. I am sure the effects of all drugs will wear off

eventually as we become more tolerant towards them. Besides the

carbamazepine and neurontin, I tried a spell on amantadine hydrochloride

(Symmetrel) but this gave me severe gastro-intestinal disturbances. Shame,

'cos this pill really did the trick on the paraesthesias for a while.

For restless legs I take 2-4mg of clonazepam (Rivotril, Klonopin, Clonex,

Iktorivil) only at night.

Take care,

Kezzi. . . UK

http://gbs.ukweb.nu/

[Guest guest]

As for the Neurontin, I am also on it (300 mg morn and evening) but was

initially given it NOT for seizures or nerve pain, but for migraines I

developed while undergoing a year of interferon therapy for Hepatitis C.

I tried to wean myself off it several times after my treatment ended

but the migraines returned. I then realized that the drug is probably

killing (or saving) 2 birds for me - the headaches and nerve pain, so I

remain on it.

scolioly2@... wrote:

> Laurie,

> I did take Neurontin for quite a long period of time. It is toted as a

> wonder drug for nerve pain. I seem to get toxic awfully easy. I am

> on a lot of

> other medications for other things. However, Neurontin did, at one

> point, allow

> me to get back on my feet. I have heard of lots of people for whom it

> has

> been a Godsend! So, good luck to you. You may even be told to go up

> on the

> dosage at some point. I hope and pray that it is very good for you!

> Carole

>

>

>

[Guest guest]

Neurontin was something that was considered for my husband

as he healed from GBS. Only because of the pain and

'abnormal spikes' he was having (as the nerves remyelinated

themselves).

In all the GBS items, I've never heard of it being used for

a child.

I might stand corrected, but I don't think I've heard of

it being given to anyone not diagnosed with a (demyelinating)

neurological disorder

doris

MD

Message: 4

Date: Mon, 12 Jan 2004 04:18:36 -0000

From: " Sacara " <sacararoses@...>

Subject: Neurontin anyone?

I haven't spoken much in the group but I'm wondering if anyone else

has had Neurontin given to thier child ? My son is 4 years old has

brain damage, mildly retarded, and mostly non verbal with a PDD-NOS

as well as a violent temper problem also possible bi polar and I am

bi polar myself. Worse he's 3ft 11inches and weighs 78lbs and he has

broken a nurses wrist, and given plenty of bruises to anyone who gets

in his way. He is also very loving alot and gives kisses often...he's

not very autisic. He is overweight, caused by Pedisure for

starters...it saved my son but he started eating solild foods 18

months ago and getting the weight off has proven difficult. He is on

Seroquel 200mg daily. They put him on Neurontin and after doing some

research on it we are not happy about it. I'd like to know if anyone

has been on it and how it worked for them. Feedback would be welcomed

____

[Guest guest]

I saw a post on the me-list from a family who's daughter was prescribed it for a

lot of the same reason your son was. Maybe you want to try posting there to

talk to this person. I believe she said her daughter was helped by it in

combination with another drug (don't know name of). Kathy

Neurontin anyone?

I haven't spoken much in the group but I'm wondering if anyone else

has had Neurontin given to thier child ? My son is 4 years old has

brain damage, mildly retarded, and mostly non verbal with a PDD-NOS

as well as a violent temper problem also possible bi polar and I am

bi polar myself. Worse he's 3ft 11inches and weighs 78lbs and he has

broken a nurses wrist, and given plenty of bruises to anyone who gets

in his way. He is also very loving alot and gives kisses often...he's

not very autisic. He is overweight, caused by Pedisure for

starters...it saved my son but he started eating solild foods 18

months ago and getting the weight off has proven difficult. He is on

Seroquel 200mg daily. They put him on Neurontin and after doing some

research on it we are not happy about it. I'd like to know if anyone

has been on it and how it worked for them. Feedback would be welcomed

____

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

i am not going to start this medication. i was on it sept 2002. but it was

never listed or mentioned again. kathy in il

[Guest guest]

Kathy,

I was on Neurontin early this year, and it didn't help much for the

nerve pain, plus it made me gain weight! They switched me to

Topamax, and it has helped with the nerve pain plus I lost weight.

Only problem with that is that I tend to forget common ordinary words!

Judi

> i am not going to start this medication. i was on it sept 2002. but

it was

> never listed or mentioned again. kathy in il

>

>

>

[Guest guest]

it just doesn't sound like a good one for me. my feet have really been

tingling and painful this weekend with tfhe lovely weather we are having here. i

can't believe we are due for more rain until thursday!!! hope everyone is

having

a safe and happy memorial day weekend. kathy in il

[Guest guest]

Hi, :

I have had CFIDS for many, many years. I DO take Neurontin, but not

for CFIDS. I use it for OCD issues, with which it helps. For me,

it does not help with my CFIDS symptoms ... but I know it has for

others. I only take 100 mg/3x per day. I have had no problems with

this dosage ... which is considered a very small dosage by regular

Rx'ing standards. However, it has helped greatly with some very

specific aspects of the OCD.

HTH,

Cyn McL

Los Angeles

_________________

> Has anyone whose tried Neurontin had problems with it? Did it help

from the start, or did you have to get used to it? Did it cause side

effects?

[Guest guest]

I take neurontin, but not all the time -- only when my sleep problems get

worse. Initially, I did have side effects -- it made me feel drunk, and I could

hardly walk straight. Then someone suggested taking it with protein and that

completely halted the side effects. I don't need to take it with protein now

-- it no longer causes side effects for me. However, I habituate to it

quickly when it comes to sleep, and seem to have a rebound the next night. I

didn't

find it helpful for other symptoms (i.e. cognitive problems), so I elected

not to take it all the time.

Best, Peggy M.

[Guest guest]

Dear Tess,

I use Neurontin for nerve pain, it took awhile to get used to, but it really

is one of those drugs I wish I had stock in! The Dr. reduced my anti

depressant meds, once I got up to speed with the Neurontin. It is amazing, I

did

not realize that I was in so much pain until it was gone. I agree with you

about if it ain't broke don't fix it, but our body gets used to meds and they

don't work as well, and we don't realize it until a change is made. I would

give it a try, you can always go back. BUT remember it does take time to get

used to Neurontin, it can make you loopy.

Hope this helps,

Carol M. in CA

[Guest guest]

Dear Tess,

I use Neurontin for nerve pain, it took awhile to get used to, but it really

is one of those drugs I wish I had stock in! The Dr. reduced my anti

depressant meds, once I got up to speed with the Neurontin. It is amazing, I

did

not realize that I was in so much pain until it was gone. I agree with you

about if it ain't broke don't fix it, but our body gets used to meds and they

don't work as well, and we don't realize it until a change is made. I would

give it a try, you can always go back. BUT remember it does take time to get

used to Neurontin, it can make you loopy.

Hope this helps,

Carol M. in CA

[Guest guest]

Tess,

You've already been on Klonopin long term and it could be a problem to

discontinue it. Long term usage is addicting and you must wean off of

Klonopin. Abruptly stopping it can cause seizures.

http://www.druginfonet.com/index.php?pageID=klonopin.htm

I hope your doctor has plans to gradually discontinue the Klonopin.

I'd feel the same way, if it ain't broke don't fix it. There MUST be room

for negotiation since this drug can't abruptly be discontinued.

a

>

> My Pdoc retired, and I am looking for a new one to follow my

> depression/anxiety meds. Right now I'm on 40mg Paxil 1 x day, 150mg

> Wellbutrin 2 x day, and .5mg Klonopin prn a day.

>

> I saw a new Pdoc yesterday. He said he will not rx Klonopin as he thnks

> it's long-term use is dangerous (I've been on it 14 years). He wants me

> to go on neurontin for the anxiety. This would be " off-label " use.

>

> I'm pretty perplexed. The combination of Paxil, Wellbutrin and Klonopin

> has been so helpful. I feel like " If it ain't broke, don't fix it. "

> There is no room for negotiation with this Dr. Does anyone know about

> using neurontin for anxiety? Any experience with it?

>

> Love & hugs...

>

> Tess

>

>

>

>

>

[Guest guest]

Tess,

You've already been on Klonopin long term and it could be a problem to

discontinue it. Long term usage is addicting and you must wean off of

Klonopin. Abruptly stopping it can cause seizures.

http://www.druginfonet.com/index.php?pageID=klonopin.htm

I hope your doctor has plans to gradually discontinue the Klonopin.

I'd feel the same way, if it ain't broke don't fix it. There MUST be room

for negotiation since this drug can't abruptly be discontinued.

a

>

> My Pdoc retired, and I am looking for a new one to follow my

> depression/anxiety meds. Right now I'm on 40mg Paxil 1 x day, 150mg

> Wellbutrin 2 x day, and .5mg Klonopin prn a day.

>

> I saw a new Pdoc yesterday. He said he will not rx Klonopin as he thnks

> it's long-term use is dangerous (I've been on it 14 years). He wants me

> to go on neurontin for the anxiety. This would be " off-label " use.

>

> I'm pretty perplexed. The combination of Paxil, Wellbutrin and Klonopin

> has been so helpful. I feel like " If it ain't broke, don't fix it. "

> There is no room for negotiation with this Dr. Does anyone know about

> using neurontin for anxiety? Any experience with it?

>

> Love & hugs...

>

> Tess

>

>

>

>

>

[Guest guest]

Tess, Please do not let him prescribe Neurontin for you. There is a

huge class action suit against the company for pushing this drug for

things it was not approved by the FDA for. I received a letter in

the mail about it as it was prescribed for me 8 years ago. It is

only supposed to be used for grand mal seizure patients. That is

the only thing it was approved for.

If this doctor continues to push this drug I would advise you to

have him contact the FDA about this drug. It is dangerous for

anyone but someone who is having daily seizures to take.

I would find another doctor if he won't listen to you. If what you

were taking was working then he should stick with the program and

not muddy up the waters.

God bless,

Althea

> My Pdoc retired, and I am looking for a new one to follow my

> depression/anxiety meds. Right now I'm on 40mg Paxil 1 x day,

150mg

> Wellbutrin 2 x day, and .5mg Klonopin prn a day.

>

> I saw a new Pdoc yesterday. He said he will not rx Klonopin as he

thnks

> it's long-term use is dangerous (I've been on it 14 years). He

wants me

> to go on neurontin for the anxiety. This would be " off-label " use.

>

> I'm pretty perplexed. The combination of Paxil, Wellbutrin and

Klonopin

> has been so helpful. I feel like " If it ain't broke, don't fix

it. "

> There is no room for negotiation with this Dr. Does anyone know

about

> using neurontin for anxiety? Any experience with it?

>

> Love & hugs...

>

> Tess