RE: MEDS---Question re: Neurontin

[Guest guest]

Dear ann,

Neurontin helped me greatly in the area of cognitive function. Also, it

has been discovered since Dr. Seastrunk started it for CFIDS/EI that it

helps pain (like neuropathy, in general). My father takes 300mg. (a very

small dose compared to my CFIDS' amount) for leg pain (he is 81), i.e.

for neuropathy.

Regards,

Sara

[Guest guest]

Dear ann,

Neurontin and Lamictal are two very commonly used anti-convulsants which are

used together. Dr. Seastrunk has given both to CFIDS/EI persons, at the same

time. If Neurontin works by itself (as in my case), that's fine. If it needs a

" boost " , Lamictal can be added on to therapy. Actually, I believe Neurontin is

considered " adjunct therapy " to Lamictal (that is, Lamictal is tried first by

other physicians; Dr. Jay uses Neurontin first because it has less serious

consequences).

Neurontin is rated as the #1 anti-convulsant on market (there is a list

somewhere on a Website... out there in cyberspace that lists the 15 top

anti-convulsants). The last time I read it, Neurontin was #1.

Hope your physician warned you about the " rash " that can occur with Lamictal. It

can be life threatening (can become an anaphylactic reaction), and as soon as

you see it, you must stop Lamictal immediately. That is what Dr. Seastrunk told

his patients who tried it. That is why, Neurontin is generally given first; it

has less serious side effects. I was lucky in that Neurontin somehow started the

neurotransmitters to start working, and I got my brain back (it's sharper now

than it was in my pre-CFIDS' days). So, Dr. Seastrunk did not add Lamictal. I

did try it one time (with Neurontin), and stopped it right away: I just laid

around, like a zombie. I think that it was to much with the Neurontin.

By the way, Parkes- (who makes Gabapentin, chemical name for Neurontin) has

stated that it is not understood how Neurontin works in the brain (they do not

understand the bio-chemical mechanisms which make it effective; in fact, they do

not even think that it works on the GABA receptors in the brain,

GABA=Gamma Aamino Butryic Acid which is a major INHIBITORY neurotransmittor in

the brain that stops it from " seizuring " or " misfiring " , Neurontin is synthetic

GABA, also I tried the " Health Food brand of GABA for yrs. and it did nothing

for me). It is basically a very safe drug: is not metabolized in the liver as

are most drugs, and is filtered out through the kidneys (if you have compromised

kidney function, you might not be able to take a high dose). It passes through

the body in about 2-3 hours, and that is why I have to dose frequently: 4 times

a day: (800mg), 5am, noon, 5pm, and bedtime or earlier. I have gotton so used to

my dosing, I don't even think about it, when it is time. I simply do it. Dr.

Seastrunk told me that was the " one drawback " to Neurontin (as if that's a

drawback), is the frequent dosing; I replied: " It sure is better than having to

inject oneself 2 times a day, as with diabetes " .

Hope it helps you,

Sara

P.S. I have been on it for 3 yrs. and should really get a SPECT scan to see if

any of the brain lesions in the left frontotemporal lobes have improved. The

ultimate question is: " Could the Neurontin possibly get rid of the brain

lesions? " I rather doubt it and do not care. If one is asymptomatic from a drug,

what does it matter. At some future date, I will get a SPECT scan to see what my

brain looks like after 3 yrs. on Neurontin. I have heard that the SPECT scan or

MRS, not MRI (at Dr. Seastrunk's) give the finest brain imaging.

Also, are you having your blood drawn by your physician? I had to do it at first

for several months to measure the " blood therapeutic level " . Neurontin,

according to Dr. Jay, does not work until it reaches a certain number (11 or

up...I don't remember). Ask you doctor to measure this amount in your blood to

see what your number is. Good Luck.

In my own case, I believe that I will have to take Neurontin for the rest of my

life, as I also have " demyelination " , along with the brain lesions. That means

that because of some unknown pathogen that entered my brain, the nerve sheath

that protects the nerve ending has been striped off, and that fatty tissue

protects the nerve ending. In MS, demyelination occurs throughout the brain (MS

was ruled out in my Dx while in the hospital).

My gut feeling is that

[Guest guest]

> I'm wondering of those of you on Neurontin out

> there have noticed it helping w/your cognitive

> function.

Since taking Neurontin I've started to get some of my vocabulary

back. All those wonderful little (and big) words that I couldn't

find for years are making a return. I've also noticed that I don't

have as much of a word retrieval problem as I used to. I don't go

blank in the middle of a conversation as often as before Neurontin.

Marleen

[Guest guest]

Dear Sara,

Could you please repost Dr. Seastrunk's address and phone # again? I

thought I pput it in my DR folder and now cannot find it. His protocal

really sounds promising. Does your local DR follow with you?

thanks,

Christie

At 08:02 AM 9/4/99 -0000, you wrote:

>From: corner <cornerlamps@...>

>

>Dear ann,

>Neurontin and Lamictal are two very commonly used anti-convulsants which

are used together. Dr. Seastrunk has given both to CFIDS/EI persons, at the

same time. If Neurontin works by itself (as in my case), that's fine. If it

needs a " boost " , Lamictal can be added on to therapy. Actually, I believe

Neurontin is considered " adjunct therapy " to Lamictal (that is, Lamictal is

tried first by other physicians; Dr. Jay uses Neurontin first because it

has less serious consequences).

>Neurontin is rated as the #1 anti-convulsant on market (there is a list

somewhere on a Website... out there in cyberspace that lists the 15 top

anti-convulsants). The last time I read it, Neurontin was #1.

>Hope your physician warned you about the " rash " that can occur with

Lamictal. It can be life threatening (can become an anaphylactic reaction),

and as soon as you see it, you must stop Lamictal immediately. That is what

Dr. Seastrunk told his patients who tried it. That is why, Neurontin is

generally given first; it has less serious side effects. I was lucky in

that Neurontin somehow started the neurotransmitters to start working, and

I got my brain back (it's sharper now than it was in my pre-CFIDS' days).

So, Dr. Seastrunk did not add Lamictal. I did try it one time (with

Neurontin), and stopped it right away: I just laid around, like a zombie. I

think that it was to much with the Neurontin.

>By the way, Parkes- (who makes Gabapentin, chemical name

for Neurontin) has stated that it is not understood how Neurontin works in

the brain (they do not understand the bio-chemical mechanisms which make it

effective; in fact, they do not even think that it works on the GABA

receptors in the brain, GABA=Gamma Aamino Butryic Acid which is a major

INHIBITORY neurotransmittor in the brain that stops it from " seizuring " or

" misfiring " , Neurontin is synthetic GABA, also I tried the " Health Food

brand of GABA for yrs. and it did nothing for me). It is basically a very

safe drug: is not metabolized in the liver as are most drugs, and is

filtered out through the kidneys (if you have compromised kidney function,

you might not be able to take a high dose). It passes through the body in

about 2-3 hours, and that is why I have to dose frequently: 4 times a day:

(800mg), 5am, noon, 5pm, and bedtime or earlier. I have gotton so used to

my dosing, I don't even think about it, when it is time. I simply do it.

Dr. Seastrunk told me that was the " one drawback " to Neurontin (as if

that's a drawback), is the frequent dosing; I replied: " It sure is better

than having to inject oneself 2 times a day, as with diabetes " .

>Hope it helps you,

>Sara

>P.S. I have been on it for 3 yrs. and should really get a SPECT scan to

see if any of the brain lesions in the left frontotemporal lobes have

improved. The ultimate question is: " Could the Neurontin possibly get rid

of the brain lesions? " I rather doubt it and do not care. If one is

asymptomatic from a drug, what does it matter. At some future date, I will

get a SPECT scan to see what my brain looks like after 3 yrs. on Neurontin.

I have heard that the SPECT scan or MRS, not MRI (at Dr. Seastrunk's) give

the finest brain imaging.

>Also, are you having your blood drawn by your physician? I had to do it at

first for several months to measure the " blood therapeutic level " .

Neurontin, according to Dr. Jay, does not work until it reaches a certain

number (11 or up...I don't remember). Ask you doctor to measure this amount

in your blood to see what your number is. Good Luck.

>In my own case, I believe that I will have to take Neurontin for the rest

of my life, as I also have " demyelination " , along with the brain lesions.

That means that because of some unknown pathogen that entered my brain, the

nerve sheath that protects the nerve ending has been striped off, and that

fatty tissue protects the nerve ending. In MS, demyelination occurs

throughout the brain (MS was ruled out in my Dx while in the hospital).

>My gut feeling is that

>

>---------------------------

[Guest guest]

hi!

i don't know that much about neurontin, have only heard that it's

helpful for severe MCS and FM symptoms (which doesn't make me a

candidate). and that there can be side effects that go away after your

body adjusts to it (like headaches, or difficulty with motor control).

also, that some people don't tolerate it. and i've seen mention on

cfs-l a couple times of an alternative for those folks (sorry, i don't

remember what it was :-\)

i only mention this so that all of you thinking of trying it can be as

informed as possible. i've never even read marilyn k's neurontin list,

but i'm sure there's answers there to any question/s you may have.

debbie s. - dlsherman@...

[Guest guest]

Dr.Seastrunk, Jay

(972) 709-4834

102 East Freeman St.

Duncanville, TX

75116-4809

Regards,

Re: MEDS---Question re: Neurontin

> From: " C.Tab. " <tab@...>

>

>

> Dear Sara,

>

> Could you please repost Dr. Seastrunk's address and phone # again? I

> thought I pput it in my DR folder and now cannot find it. His protocal

> really sounds promising. Does your local DR follow with you?

>

> thanks,

>

> Christie

>

>

>

>

>

>

>

>

>

> At 08:02 AM 9/4/99 -0000, you wrote:

> >From: corner <cornerlamps@...>

> >

> >Dear ann,

> >Neurontin and Lamictal are two very commonly used anti-convulsants which

> are used together. Dr. Seastrunk has given both to CFIDS/EI persons, at

the

> same time. If Neurontin works by itself (as in my case), that's fine. If

it

> needs a " boost " , Lamictal can be added on to therapy. Actually, I believe

> Neurontin is considered " adjunct therapy " to Lamictal (that is, Lamictal

is

> tried first by other physicians; Dr. Jay uses Neurontin first because it

> has less serious consequences).

> >Neurontin is rated as the #1 anti-convulsant on market (there is a list

> somewhere on a Website... out there in cyberspace that lists the 15 top

> anti-convulsants). The last time I read it, Neurontin was #1.

> >Hope your physician warned you about the " rash " that can occur with

> Lamictal. It can be life threatening (can become an anaphylactic

reaction),

> and as soon as you see it, you must stop Lamictal immediately. That is

what

> Dr. Seastrunk told his patients who tried it. That is why, Neurontin is

> generally given first; it has less serious side effects. I was lucky in

> that Neurontin somehow started the neurotransmitters to start working, and

> I got my brain back (it's sharper now than it was in my pre-CFIDS' days).

> So, Dr. Seastrunk did not add Lamictal. I did try it one time (with

> Neurontin), and stopped it right away: I just laid around, like a zombie.

I

> think that it was to much with the Neurontin.

> >By the way, Parkes- (who makes Gabapentin, chemical name

> for Neurontin) has stated that it is not understood how Neurontin works in

> the brain (they do not understand the bio-chemical mechanisms which make

it

> effective; in fact, they do not even think that it works on the GABA

> receptors in the brain, GABA=Gamma Aamino Butryic Acid which is a major

> INHIBITORY neurotransmittor in the brain that stops it from " seizuring " or

> " misfiring " , Neurontin is synthetic GABA, also I tried the " Health Food

> brand of GABA for yrs. and it did nothing for me). It is basically a very

> safe drug: is not metabolized in the liver as are most drugs, and is

> filtered out through the kidneys (if you have compromised kidney function,

> you might not be able to take a high dose). It passes through the body in

> about 2-3 hours, and that is why I have to dose frequently: 4 times a day:

> (800mg), 5am, noon, 5pm, and bedtime or earlier. I have gotton so used to

> my dosing, I don't even think about it, when it is time. I simply do it.

> Dr. Seastrunk told me that was the " one drawback " to Neurontin (as if

> that's a drawback), is the frequent dosing; I replied: " It sure is better

> than having to inject oneself 2 times a day, as with diabetes " .

> >Hope it helps you,

> >Sara

> >P.S. I have been on it for 3 yrs. and should really get a SPECT scan to

> see if any of the brain lesions in the left frontotemporal lobes have

> improved. The ultimate question is: " Could the Neurontin possibly get rid

> of the brain lesions? " I rather doubt it and do not care. If one is

> asymptomatic from a drug, what does it matter. At some future date, I will

> get a SPECT scan to see what my brain looks like after 3 yrs. on

Neurontin.

> I have heard that the SPECT scan or MRS, not MRI (at Dr. Seastrunk's) give

> the finest brain imaging.

> >Also, are you having your blood drawn by your physician? I had to do it

at

> first for several months to measure the " blood therapeutic level " .

> Neurontin, according to Dr. Jay, does not work until it reaches a certain

> number (11 or up...I don't remember). Ask you doctor to measure this

amount

> in your blood to see what your number is. Good Luck.

> >In my own case, I believe that I will have to take Neurontin for the rest

> of my life, as I also have " demyelination " , along with the brain lesions.

> That means that because of some unknown pathogen that entered my brain,

the

> nerve sheath that protects the nerve ending has been striped off, and that

> fatty tissue protects the nerve ending. In MS, demyelination occurs

> throughout the brain (MS was ruled out in my Dx while in the hospital).

> >My gut feeling is that

> >

> >---------------------------

[Guest guest]

I found your post to maryann very interesting. what other drugs are use to

potentiate neurontin? Also do the smart drugs help neurotin to work better?

Sorry to keep asking so many questions, but I am curious if anyone on this

list is taking piracetam. I have heard that this drug is like super-charged

gingko. It get more blood to the brain. I ordered some but I have not gotten

it yet, I would be very interested if anyone is taking this drug or any

other of the so called " smart drugs " ... What about some of the new drug

that are coming out for MS patients or Alzzzzzzzzzzzzzzhiemers disease.

thank in advance for your feed back.

Steve

Re: MEDS---Question re: Neurontin

From: corner <cornerlamps@...>

Dear ann,