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kc

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Jan 22, 2004, 12:29:54 AM1/22/04
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has anyone tried Gabatril for sleep and/or pain control? i just started it
in place of Nortryptaline (which works fine but makes me fat). it seems
that this medication really affects my concentration and memory (as if they
weren't bad enough already). has anyone else experienced this? i know it's
a common side effect, but i was wondering if it would pass, or if i'm stuck
with it. if so, i'm going back to the nortryptaline. i'd rather be fat
than this foggy...

-kelly


Mark London

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Jan 22, 2004, 5:19:14 PM1/22/04
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This is an experimental drug with very little use for fibromyalgia. There's
no evidence that it helps fibromyalgia.

Why not try neurontin?

In a previous article, "kc" <kelly_mars...@msn.com> wrote:
->has anyone tried Gabatril for sleep and/or pain control? i just started it
->in place of Nortryptaline (which works fine but makes me fat). it seems
->that this medication really affects my concentration and memory (as if they
->weren't bad enough already). has anyone else experienced this? i know it's
->a common side effect, but i was wondering if it would pass, or if i'm stuck
->with it. if so, i'm going back to the nortryptaline. i'd rather be fat
->than this foggy...
->
->-kelly
->
->

kc

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Jan 22, 2004, 5:25:39 PM1/22/04
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"Mark London" <m...@psfc.mit.edu> wrote in message
news:22JAN04....@psfc.mit.edu...

> This is an experimental drug with very little use for fibromyalgia.
There's
> no evidence that it helps fibromyalgia.
>
> Why not try neurontin?

they have very similar effect in the brain, but neurontin has more side
effects, in my doctor's experience. she finds Gabatril to be as effective
as Neurontin in most patients.

well, i guess i'll be the guinea pig and post my results. :-)

-kelly


Karen Peterson

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Jan 22, 2004, 10:06:01 PM1/22/04
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Kelly,

I've been on both for migraine prevention and fibro. I don't think I
was taking enough of the Neurontin (800 mg) for getting a handle on the
fibro. I had to stop the Gabitril when I got to 6 mgs because of
nausea, anxiety and depression. My NP said she had one other patient
react to it this way. I am willing to try Neurontin again, but at a
much higher dose. I've been in a bad flare for two weeks and have been
using heating blanket and hot baths for relief.

Karen in San Diego

kc

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Jan 22, 2004, 10:55:02 PM1/22/04
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"Karen Peterson" <kpet...@pacbell.net> wrote in message
news:tc0Qb.14800$Ne3....@newssvr27.news.prodigy.com...

> Kelly,
>
> I've been on both for migraine prevention and fibro. I don't think I
> was taking enough of the Neurontin (800 mg) for getting a handle on the
> fibro. I had to stop the Gabitril when I got to 6 mgs because of
> nausea, anxiety and depression.

hey, maybe that's why my stomach is bothering me. since i got to 6 mg. it
didn't even occur to me. it's funny, i get so used to being in pain all the
time that i forget it might be caused by something other than the fibro.

well, i'm going to give it a week at this dose to see if it goes away. if
not, i guess it's back to the nortryptaline. on the plus side, my back
isn't bothering me... :-)

-kelly


Mark London

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Jan 22, 2004, 10:56:46 PM1/22/04
to
In a previous article, "kc" <kelly_mars...@msn.com> wrote:
->"Mark London" <m...@psfc.mit.edu> wrote in message
->news:22JAN04....@psfc.mit.edu...
->they have very similar effect in the brain, but neurontin has more side
->effects, in my doctor's experience. she finds Gabitril to be as effective
->as Neurontin in most patients.

Neurontin has totally different effects from gabitril. While both have the
ability to increase gaba levels in the pain, which affects convulsions, this
effect is not very useful for fibromyalgia. Gaba levels are not seen as being
relevant in fibromyalgia. However, neurontin actually doesn't directly
interact with gaba receptors, and is now seen as being a novel drug (although
pregabalin, a derivative of neurontin, will be on the market soon). There are
very few studies or papers regarding gabitril and pain. For example, search
pubmed through the following link, and put in the words gabitril and pain,
and you'll find only 10 such articles:

http://www.ncbi.nlm.nih.gov/PubMed/

On the other hand, put in neurontin and pain, and you'll get 273 articles. :)

One of the problems with neurontin is that sometimes some of the worse side
effects can occur at the lower doses. You need to get to the high doses in
order to keep the neurontin serum levels high enough to be effective. Many
doctors will put people on neurontin, the people will complain about the side
effects at the lower doses, so the doctors will then stop it, rather than
trying to get the level high enough to be effective. Plus, a study has also
shown that fast ramping to a high dose is often tolerated just as well as
slowly increasing the dose. This runs opposite to the advise for most other
drugs, where the dose is slowly increased. Plus, sometimes neurontin requires
very high doses, which some doctors are wary of trying.

There are also other ways to avoid side effects. Taking the dose with a
protein snack, and drinking lots of water, can help also. Because of all
these issues, but because neurontin can be so effective in some people,
there's a mailing list neurontin-l just for being able to discuss these and
other related issues (like what drugs go well in combination with neurontin).

kc

unread,
Jan 22, 2004, 11:33:02 PM1/22/04
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"Mark London" <m...@psfc.mit.edu> wrote in message
news:23JAN04....@psfc.mit.edu...

> Neurontin has totally different effects from gabitril. While both have
the
> ability to increase gaba levels in the pain, which affects convulsions,
this
> effect is not very useful for fibromyalgia. Gaba levels are not seen as
being
> relevant in fibromyalgia.

according to who? GABA is the neurotransmitter that allows you to relax.
don't you think that would be important in FMS? GABA is believed to be
related to pain control in the body. that sounds promising to me. and as a
GABA reuptake inhibitor, Gabitril enhances delta sleep (among other things),
which is crucial in treating FMS.


> However, neurontin actually doesn't directly
> interact with gaba receptors, and is now seen as being a novel drug
(although
> pregabalin, a derivative of neurontin, will be on the market soon). There
are
> very few studies or papers regarding gabitril and pain. For example,
search
> pubmed through the following link, and put in the words gabitril and pain,
> and you'll find only 10 such articles:
>
> http://www.ncbi.nlm.nih.gov/PubMed/
>
> On the other hand, put in neurontin and pain, and you'll get 273 articles.

all this shows is that Neurontin has a much better marketing team than
Gabitril. if you do some research on Neurontin, you'll see it's been pushed
as a miracle cure for everything from Bipolar disorder to Migraines, even
without the studies to back it up. i don't think the number of studies done
has much to do with a medication's worth.

http://www.burningneuropathy.com/interior/neurontin.html
http://www.npr.org/display_pages/features/feature_920362.html
http://www.legalnewswatch.com/news_207.html

i can find more if you're not satisfied with these sources. needless to
say, i'm hesitant to use Neurontin for off label uses after reading this.

-kelly


Tessie B.

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Jan 23, 2004, 3:40:39 AM1/23/04
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i liked the med, but only got to try a sample. it's expensive so i
opted not to have dr. RX it for me.
then he's having me try catapres/clonidine and i think i sleep
better with it. i tried the brand, because i do better with them. but
it's $2 a pill too, so i'll try the generic. i hope i can tolerate
it--generics usu. give me more sideFX.
i couldn't tolerate neurontin (and so many other meds, oral, i
can't list them all). tess

"kc" <kelly_mars...@msn.com> wrote in message news:<bunn4i$jvsbh$1...@ID-58739.news.uni-berlin.de>...

Mark London

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Jan 23, 2004, 10:48:55 AM1/23/04
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In a previous article, "kc" <kelly_mars...@msn.com> wrote:
->according to who?

Look in PUBMED, and try to find any study or articles which refers to GABA and
fibromyalgia.

->GABA is believed to be related to pain control in the body.

Many meds for pain for other chronic pain problems, don't help fibromyalgia.
So just because something is related to pain, doesn't mean it can help
fibromyalgia.

->GABA reuptake inhibitor, Gabitril enhances delta sleep (among other things),
->which is crucial in treating FMS.

Actually, it may not be that crucial in terms of pain. It's obviously
important to get good sleep, but whether any lack of a specific stage of sleep
is response for fibromyalgia pain has often been questioned. See:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12505558&dopt=Abstract

The sleep disruption pattern, which has often been quoted with relation to
fibromyalgia, is seen in many chronic pain conditions, not just fibromyalgia.
So is the pain itself responsible for the sleep pattern, and not the other way
around? Additionally, this study and others have noted that not everyone with
fibromyalgia has such a sleep problem, plus some people have this sleep
disruption, without having pain.

For example, from a recent study I just read (about to be published):

"Pain, psychological variables, sleep quality, and natural killer cell
activity in midlife women with and without fibromyalgia: Brain, Behavior,
and Immunity, In Press, Corrected Proof, Available online 11 December 2003

Similar total sleep time and percentages of SWS and REM sleep between women
with and without FM, as observed in this study has been documented in other
studies of FM patients with moderate to high levels of pain ( [Carette et al.,
1995]; [Leventhal et al., 1995]).

Patients with FM consistently report poor and unrefreshing sleep that is out
of proportion to modest changes in PSG-derived sleep quality. This
nonrestorative sleep pattern has been attributed to an EEG arousal pattern of
increased small alpha, Greek activity in NREM sleep ([Moldofsky, 1989]), but
this pattern is not specific to FM or correlated with pain severity ( [Carette
et al., 1995]; [Mahowald and Mahowald, 2002])."

If you look at all the meds, like elavil, being used for fibromyalgia, there's
little proof that any of them directly increases slow wave sleep. Many of
them may make you drowsy, and sleepy overall, and that may be of help alone,
rather than specifically helping a specific stage of sleep (and also many drugs,
like elavil, affect many different neuron receptors, so they all have multiple
effects, and it's not necessarily the sleep effect which helps people).

->all this shows is that Neurontin has a much better marketing team than
->Gabitril. if you do some research on Neurontin, you'll see it's been pushed
->as a miracle cure for everything from Bipolar disorder to Migraines, even
->without the studies to back it up. i don't think the number of studies done
->has much to do with a medication's worth.

Studies continue to be done on drugs like elavil, even though it's patent has
long run out. Studies continue to be done on neurontin, even though it's
patent is soon to run out, and Pfizer is really pushing pregabalin at this
point. Gabitril has been out since 1997, and it has a patent that will be
around for many years to come, yet only 10 published articles? Gabitril may
have been slow to push off label use, but apparently they are catching on,
which perhaps why suddenly doctors are recommending it? Read this from an
article from the web:

"At the annual conference of the American Academy of Pain Management this
summer at the Adam's Mark hotel in downtown Denver, 75 makers of drugs,
medical devices and dietary supplements staffed sales booths, beckoning
doctors with trinkets, slick promotional brochures, medical journal
articles, even stopwatches.

One of the biggest booths was for Cephalon Inc., based outside
Philadelphia. Two big signs pitched Gabitril, a drug approved only to treat
seizures. Four sales representatives in blue blazers answered questions.

From 2000 to 2003, 60 percent of Cephalon's sales were of Gabitril or
Provigil, two drugs for which the majority of the written prescriptions
are off-label. According to the prescription data that Knight Ridder analyzed,
88 percent of Gabitril's retail sales were off-label over the last year.

Cephalon has told the Securities and Exchange Commission the "market for
the approved indications of two of our three largest products is relatively
small."

Even as the company begins to study whether Gabitril works for pain, tens
of thousands of prescriptions for that use were filled in the last year,
Knight Ridder's analysis showed.

Michael Fielder of Kansas City, Mo., said he'd taken Gabitril for the last
18 months to curb the pain of sickle cell anemia, a debilitating blood
disorder. He got relief only after his doctor added morphine to the mix.

When asked for evidence their drug may be useful for pain, Cephalon
officials cited five studies, including four with 10 or fewer patients."

->i can find more if you're not satisfied with these sources. needless to
->say, i'm hesitant to use Neurontin for off label uses after reading this.

I don't go by what drug companies or doctors say as the final word about a
drug. I go by people's experience. I've read tons of good stories about
neurontin over the last 5 years or so, including my own mother, who was able
to get off her narcotics and switch over to a high dose of neurontin (+
effexor). Heck, the basic fibromyalgia drug elavil, which so many doctor
recommend for fibromyalgia, has been the source of many horrible side effects
in some people, yet doctors continue to prescribe it (many stupidly give 25mg
pills, when some people need to go up slowly by 10mg pills, and in some case
they should go up by 1/2 pills).

On the other hand, some doctors avoid giving people klonopin, based on the
belief that benzos disrupt sleep. Yet many doctors who actually use klonopin
with fibromyalgia and CFS patients find it to be of great help, and that it
doesn't intefere with sleep. There's so much misinformation from doctors and
from the web, it's really pretty pathetic. I doubt that doctors really bother
keeping up with the studies that appear in places like PUBMED.

kc

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Jan 23, 2004, 5:34:05 PM1/23/04
to

"Mark London" <m...@psfc.mit.edu> wrote in message
news:23JAN04....@psfc.mit.edu...
>. There's so much misinformation from doctors and
> from the web, it's really pretty pathetic. I doubt that doctors really
bother
> keeping up with the studies that appear in places like PUBMED.

and yet i should trust some random person on usenet? what are your
credentials anyway?

-kelly


Mark London

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Jan 23, 2004, 9:35:19 PM1/23/04
to
In a previous article, "kc" <kelly_mars...@msn.com> wrote:
->"Mark London" <m...@psfc.mit.edu> wrote in message
->news:23JAN04....@psfc.mit.edu...
->>. There's so much misinformation from doctors and
->> from the web, it's really pretty pathetic. I doubt that doctors really
->bother
->> keeping up with the studies that appear in places like PUBMED.
->and yet i should trust some random person on usenet? what are your
->credentials anyway?

I've been discussing fibromyalgia on the internet since 1992, when the first
fibromyalgia discussion group was formed, the FIBROM-L mailing list. When
FIBROM-L needed to find a new home, I sponsored it here at MIT, and even made
the mistake of managing it for a while. Now I only sponsor it in name only.
When people wanted news group access to it, I learned how to create a news
group, and to have messages exchanged between it and the mailing list.
Eventually, though, too many spam messages were coming from the news group, so
we dropped the connection. But the news group lives on, on it's own. The
name of that news group is alt.med.fibromyalgia

FWIW, large studies for the use of pregabalin for fibromyalgia are ongoing,
and so far appear to be promising. Whether it will be any better than
neurontin is unknown yet. However, since pregabalin is very similar to
neurontin, the off label use of neurontin for fibromyalgia is not really that
much off label. The use of gabitril for fibromyalgia is much more off label,
given that not only is there very little anecdotal information about it's
benefit for fibromyalgia, but there aren't even any speculative articles in
PUBMED that theorize it could be useful.

On the other hand, people with fibromyalgia have been using neurontin as far
back as 1996. It's far from being the first drug to try for fibromyalgia,
but is been found to help people who were not helped by the normally
recommended meds.

kc

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Jan 23, 2004, 10:41:32 PM1/23/04
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"Mark London" <m...@psfc.mit.edu> wrote in message
news:24JAN04....@psfc.mit.edu...

>
> I've been discussing fibromyalgia on the internet since 1992, when the
first
> fibromyalgia discussion group was formed, the FIBROM-L mailing list. When
> FIBROM-L needed to find a new home, I sponsored it here at MIT, and even
made
> the mistake of managing it for a while. Now I only sponsor it in name
only.
> When people wanted news group access to it, I learned how to create a news
> group, and to have messages exchanged between it and the mailing list.
> Eventually, though, too many spam messages were coming from the news
group, so
> we dropped the connection. But the news group lives on, on it's own. The
> name of that news group is alt.med.fibromyalgia

ok, so are you a health care professional? a fibro sufferer? why the
interest?

just curious, as you present yourself as though you know everything there is
to know about this syndrome.

-key


kc

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Jan 23, 2004, 10:46:36 PM1/23/04
to

"kc" <kelly_mars...@msn.com> wrote in message
news:busphf$lb21l$1...@ID-58739.news.uni-berlin.de...

>
> ok, so are you a health care professional? a fibro sufferer? why the
> interest?
>
> just curious, as you present yourself as though you know everything there
is
> to know about this syndrome.
>

look, i'm sorry if that sounded rude, it's just that i'm a bit taken aback
that you believe to know more about this than my doctor. FMS is an area of
great interest to her. she treats many fibro patients, attends regular
seminars, reads studies, she's hardly a slacker when it comes to learning
about new therapies. in her experience, Gabitril produces similar results
as Neurontin without as many side effects, and without the constant blood
monitoring. i trust her opinion very much. i just found it pretty odd that
you'd presume to know more about this disorder than she does, without
knowing anything at all about her.

-kelly


lauren

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Jan 23, 2004, 10:48:06 PM1/23/04
to

And thank you for that, Mark.

Sincerely.
lauren

---------------------------
"Mark London" <m...@psfc.mit.edu> wrote I've been discussing fibromyalgia

lauren

unread,
Jan 23, 2004, 11:06:10 PM1/23/04
to

Mark is one of the (few) people, presently, on this NG who not only has
read the studies but also understands and recalls them. He also presents
valid links.

Why don't you 'google' him and read his history here.

lauren
---------------------------
kelly_mars...@msn.com (kc)

kc

unread,
Jan 23, 2004, 11:39:02 PM1/23/04
to

"lauren" <L-litt...@webtv.net> wrote in message
news:9599-401...@storefull-3112.bay.webtv.net...

>
> Mark is one of the (few) people, presently, on this NG who not only has
> read the studies but also understands and recalls them. He also presents
> valid links.
>
> Why don't you 'google' him and read his history here.

i figured it was easier just to ask. it's wonderful that he's such a great
resource. but i'm not going to start ignoring my doctor's advice just
because he disagrees with her.

thanks for the input though.

-kelly


kc

unread,
Jan 24, 2004, 12:04:14 AM1/24/04
to

"lauren" <L-litt...@webtv.net> wrote in message
news:9599-401...@storefull-3112.bay.webtv.net...
>
> Mark is one of the (few) people, presently, on this NG who not only has
> read the studies but also understands and recalls them. He also presents
> valid links.
>
> Why don't you 'google' him and read his history here.


wow, well, i took your advice, and he certainly is prolific. with more than
5000 posts, there's no way i'm going to read through them all just to find
out why he's dedicated his life to fibromyalgia newsgroups.

maybe someone can let me in on the secret?

-kelly


lauren

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Jan 24, 2004, 2:29:35 AM1/24/04
to

I know, google(ing) is so time consuming.

IMO since they do not know enough about FMS yet- that all anyone can
give is an opinion (educated or not). Ultimately, it's always trial and
error with all meds and FM patients.

Maybe you can print what Mark had to say and ask your Doc about it.

lauren

--------------------------
kelly_mars...@msn.com (kc)

kc

unread,
Jan 24, 2004, 5:04:34 PM1/24/04
to

"lauren" <L-litt...@webtv.net> wrote in message
news:20605-401...@storefull-3115.bay.webtv.net...

>
> I know, google(ing) is so time consuming.
>
> IMO since they do not know enough about FMS yet- that all anyone can
> give is an opinion (educated or not). Ultimately, it's always trial and
> error with all meds and FM patients.
>
> Maybe you can print what Mark had to say and ask your Doc about it.
>

no thanks, he seems to be pushing Neurontin and i'm not particularly
interested in taking it. there are a lot of things out there that help
FMS, so i see no reason to take a medication i don't want to take.

-kelly


Eq

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Jan 26, 2004, 6:21:56 AM1/26/04
to

"kc" <kelly_mars...@msn.com> wrote in message
news:busuck$lscsf$1...@ID-58739.news.uni-berlin.de...

One good reason might be that he has fibromyalgia.

Mary


kc

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Jan 26, 2004, 6:50:22 PM1/26/04
to

"Eq" <not...@to.harvest> wrote in message
news:oL6Rb.123$tP6.11...@newssvr11.news.prodigy.com...

>
> One good reason might be that he has fibromyalgia.

thanks! i have it too, so i guess i'm also qualified to read the studies
and make decisions for myself. :-)

-kelly


Archer

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Jan 27, 2004, 7:35:55 PM1/27/04
to
Hi Kelly,

Mark mentioned that pregabalin will be receiving FDA approval soon.

Leslie Crofford, M.D. has been researching fibromyalgia here in Ann
Arbor, MI for longer than I can remember. She devotes most of her time
to research thus has a very small clinical practice, just 11 patients at
the moment I think.

I've been trying to become her patient since I was finally given a dx of
FMS and CFIDS in 1995 w/o success since each time I call, she is not
taking new patients. Someone has to move or die for an opening to be
created. I've seen 3 different rheumys and an internist who *all* have
said, "You need to see Leslie Crofford, but there's nothing I can do to
get you in."

A conference on FMS was held locally in the '90's (can remember exact
date), she was one of the speakers explained her research/slides, etc.
most above my head discussing hypothalmus, adrenal glands. I was in so
much pain I could barely move but joined others who went to speak
w/her. She was very empathic telling me she was not currently taking
new patients. At that time clinically she saw 15 to 20 people. I will
not be surprised if her clinical practice is eventually phased out to
devote all her time to research.

Anyway, FMily member Maureen in Mukilteo (published nutritionist) had
posted an article on pregabalin helping FMS awhile back in which Leslie
Crofford is mentioned. I'm sure you'll find articles of interest at
this google search:

http://www.google.com/search?hl=en&lr=&ie=ISO-8859-1&q=Leslie+Crofford%2BPregabalin

While awaiting results of gabatril and/or FDA approval of pregabalin,
you may want to reconsider neurontin. Many on this NG take it
successfully, a few had adverse reactions - Mare comes to mind - others
had doctors IMO who did not know how to dose it properly. Mark knows
what he is talking about.

In Spring 2000 I started at 300mgs bedtime, when as rx'd 3 days later I
increased to 300mgs a.m. and p.m. I did get dizzy/drunky side effects.
My doc was one of 'those' docs. Before posting here I googled
'neurontin' and found FMily member (not currently posting) Marilyn Kerr,
R.N.'s site, Neurontin FAQ's.

Marilyn Kerr's
http://web.tampabay.rr.com/lymecfs/nfaq.htm

I ended up taking 3200mgs. The way I got to that dose with 'no' side
effects was each time I increased a dose if it made me dizzy, the next
day I skipped that dose but then the next day immediately took it again
- zero problems. It's somnolence effect also stopped insomnia so I
slept even if I was missing stage 4.

It consistently helped reduce pain and insomnia for almost 3 years.
Since running out of estrogen, my body reacts or doesn't differently to
some meds, pain, sleep, cholesterol levels, etc. I've no idea if
menopause has anything to do with why it seemed neurontin didn't help as
much anymore. It does, however, control my hot flashes which were
intense over 50/day.

I had stopped taking neurontin believing it to be of no use any longer.
The intense hot flashes started within 24 hrs of last dose. I won't
take ERT/HRT and over a 10 day period of feeling in hell, I finally
found this info on the net, immediately took neurontin, hot flashes
stopped:

Dr. Thomas Guttuso Jr., a senior instructor in neurology at the
University of Rochester was the article I found first as he'd rx'd
gabapentin/neurontin for a menopausal woman's migraines. She reported
that it did not stop her headaches but drastically reduced hot flashes.
Studies then started.
http://www.urmc.rochester.edu/pr/News/archive/common.html

Mayo Clinic.
http://www.mayoclinic.org/news2003-mchi/1710.html

WEBMD
http://my.webmd.com/content/article/60/66969.htm

My gyn approves my continuing w/neurontin since I now average less than
one tolerable 'flash' a day. My current dose of neurontin is 800mg
2x/day. The restart also is providing reduced pain mostly in my legs
but some in my back too.

Ironically, my neighbor is battling breast cancer and during tx
w/tamoxifen the 'flushes' were controlled with gabapentin. Another
irony, she is a researcher at Pfizer here in Ann Arbor.

I hope gabatril will work for you. It's good to know there are some
viable options since what works for one of us may not work for another.
If pregabalin is chemically similar enough to neurontin, I'll try it for
FMS as long as it works for hot flashes.

I also hope you are satisfied with Mark's credentials. Without him, we
wouldn't be here, hardly a random usenet person. Since you found AMF in
Fall '03, you just didn't know who he was/*is*.<g>

TMI here but hope some of it helps.

;o)'s, Jo

Mare

unread,
Jan 27, 2004, 9:32:15 PM1/27/04
to
Hi, Jo. Out of curiousity, was it difficult to go off the neurontin when
you did? Thinking back, my doctor didn't monitor me after he rx'd 300 mgs a
day for the first few days, then 300 mgs twice a day, and I was out of town
when I started taking it. My problems began when I doubled my dose. He
also started me on Remeron at the same time so that might have been a
factor. I know that a lot of people have had great results on it. On the
one hand, I'd like to give it another try, yet on the other, after what I
went through, I'm apprehensive although it may not have been solely the
neurontin that caused my problems. I'm glad it's helping you with
menopausal symptoms especially. My FM was in overdrive during menopause.
Once I came out of it, my FM symptoms eased. So hang in there. Hugs, Mare


"Archer" <jabber...@comcast.net> wrote in message
news:401703EB...@comcast.net...
(snipped)

Archer

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Jan 28, 2004, 12:44:12 AM1/28/04
to
Hi {{{{ Mare }}}}

Not difficult at all no side effects related to neurontin. It was a
gradual reduction from 3200mg to 2400mg for two days to 1600 for two
days to 800mg for two days to zero.

All that was horrendous were severe hot flashes every 10 minutes. At
first I didn't realize they were hot flashes - I thought I was really
sick with temps of 104+ then freezing. I called doc who rx'd neurontin
and he never heard of that reaction. Called my gyn/doc's nurse who said
it was hot flashes and I needed ERT, i.e. Gynodiol but don't expect it
to work for 4 weeks!!

When I found the info online & took a dose of Neurontin with success, I
printed the info for docs so they'd know. My gyn/doc was annoyed
w/nurse for not speaking w/him because he was aware of the connection
and that I was not going to take ERT. I thought I was sailing thru
menopause but neurontin evidently kept those symptoms in check.

I can't say whether you'd have problems but those I know who 'ramped' up
quickly, and by backing off a dose for one day the immediately
increasing again the next have not had problems with feeling drunk,
staggering, dizzy, etc.

The doc that rx'd it for me didn't know to tell me that, I learned it
from M.Kerr's site. Nor did he tell me to avoid taking magnesium
(including antacids) within 2 hrs of neurontin, Nancy (acoftil) told me
posted on this NG.

I'm always leery of staring two meds at the same time and my docs know
it. My current primary care doc never does, won't actually, even told
me since all meds have side effects and may interact that if a patient
experiences anything, it's easier to solve the puzzle.

Whatever you decide, let me know.

Hugs, Jo

kc

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Jan 28, 2004, 5:00:29 PM1/28/04
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"Archer" <jabber...@comcast.net> wrote in message
news:401703EB...@comcast.net...
> Hi Kelly,
>
> Mark mentioned that pregabalin will be receiving FDA approval soon.

> I hope gabatril will work for you. It's good to know there are some


> viable options since what works for one of us may not work for another.
> If pregabalin is chemically similar enough to neurontin, I'll try it for
> FMS as long as it works for hot flashes.

hi, and thanks for the info. i think i'm going back to nortryptaline, since
it worked so well for me before. the only reason i stopped taking it was
the increased craving for sugar, but i'm just going to stick with a low carb
diet to battle that. gabatril helps with my sleep, helps moderately with
pain, and makes me feel tired and have trouble concentrating. as if i
didn't already have that problem from the fibro! the nortryptaline worked
wonders, helping me sleep, helping me concentrate, and making a big dent in
my pain. i guess i was looking for the perfect med, but i forgot that every
med has some side effects.

thanks again for the info, i appreciate you taking the time to post it.

-kelly


kc

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Jan 28, 2004, 10:58:13 PM1/28/04
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"kc" <kelly_mars...@msn.com> wrote in message
news:bv9bed$ptg2k$1...@ID-58739.news.uni-berlin.de...

> hi, and thanks for the info. i think i'm going back to nortryptaline,
since
> it worked so well for me before. the only reason i stopped taking it was
> the increased craving for sugar, but i'm just going to stick with a low
carb
> diet to battle that. gabatril helps with my sleep, helps moderately with
> pain, and makes me feel tired and have trouble concentrating. as if i
> didn't already have that problem from the fibro! the nortryptaline worked
> wonders, helping me sleep, helping me concentrate, and making a big dent
in
> my pain. i guess i was looking for the perfect med, but i forgot that
every
> med has some side effects.

i should add that i have ADD, mild OCD, and anxiety, and the nortryptaline
helped more than i realized with each of these issues. so it's not just
about how a med helps fibro for me, it'a also how it helps my other issues.

-kelly


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