Neurontin

[Guest guest]

Byron, Since you are so ecucated on alternative therapies I was wondering

what you though of Green Tea? Someone reccomended it and I was interested in

your opinion/ feel better -Val

[Guest guest]

In a message dated 6/23/99 11:59:09 AM, F.Byron@... writes:

<< Hi Val...Green tea has alot of goodies in it but it also has caffeine...if

used try and get it loose and not in bags( BAGS HAVE FORMALDEHYDE IN THEM) >>

WOW I did not know tha. do you use it?

[Guest guest]

In a message dated 6/23/99 11:59:27 AM Eastern Daylight Time,

F.Byron@... writes:

<< ..Green tea has alot of goodies in it but it also has caffeine >>

i get decaf green tea....b

[Guest guest]

Hi Byron,

Thanks for the info. I didn't take the Neurontin this morning...thought

I'd back off a bit...I did get foggy about 1 hr. after taking the

Biaxin, but not as severely as yesterday. I will take the Neurontin

tonight and see what happens... then, at least, I can space-out in bed.

Take care, Joan

[Guest guest]

Hi Mimianne (?),

I didn't take the Neurontin this morning, but will take one tonight.

Maybe my system couldn't handle 600 mg. a day (I'm a wimp!). I can tell

you this, though, it was really helping the numbness and nerve pain in

my face because boy does it hurt today! You are right, I should call the

pharmacist. Thanks, Joan

[Guest guest]

Hi Marta,

As always, it was great to hear from you. Your experiences are very

helpful and have a calming effect on me when I am freaking out. I am

REALLY HOPING that this is a Herx, and that possibly the Neurontin also

made the fog worse...it was so bad yesterday that I was walking around

the house in a daze with the TV remote in my hand...the thing is, I

THOUGHT IT WAS THE PORTABLE PHONE! Take Care, Joan

[Guest guest]

Hi Joan,

Glad to be of help, but remember we are all different, so if you have any

further problems talk to your doctor about them. I have to laugh at your

remote story....did you try to make a phone call?

I have done some really odd things myself, we all have funny stories.....I

have to share this one about my spouse who does not have Lyme, he would kill

me if he knew I told this, but yesterday he put his boxer shorts on

backward, the opening/slit was in the back, and all day at work he had an

awful time when he went to the Men's room. I laughed so hard when he told

me about it, it was so great to really have a good laugh like that....can't

remember the last time that happened.

Hugs,

Marta

From: Namkrats3@... ( Starkman)

Hi Marta,

As always, it was great to hear from you. Your experiences are very

helpful and have a calming effect on me when I am freaking out. I am

REALLY HOPING that this is a Herx, and that possibly the Neurontin also

made the fog worse...it was so bad yesterday that I was walking around

the house in a daze with the TV remote in my hand...the thing is, I

THOUGHT IT WAS THE PORTABLE PHONE! Take Care, Joan

[Guest guest]

Hi Marta...wouldn't that have been funny if I had tried to make a call

by pressing the channels?! (LOL)...I'm not that bad yet. Enjoyed your

husband's underwear story!!! Take Care, Joan

[Guest guest]

Thanks Byron,

I took the Neurontin about an hour before my husband came home from work

last night, and was " plastered " by the time he got home! I'm not sure,

but I think the side effects of the Neurontin have gotten worse as my

Herx symptoms have gotten worse... Tonight, I will take it right before

bed as it helps me sleep better. Take care, Joan

[Guest guest]

Hi Byron,

OK, now I understand my " reaction " .....

Take care, Joan

[Guest guest]

bags also contain a lesser " off the concrete floor scraps " grade of tea.

only in america do we stoop to such a low level! we're in a hurry, gotta

have it fast, gotta have it now, i have to drink it this second, give it too

me quick, takes to much time, a bag is cheap and easy ... AHHHHH

also chlorine white bleached " filters " or anything for that matter that has

been bleached contains toxins. i use a reusable filter. many types are

available. also don't forget that caffeine hides in many of our favorite foods!

>From: " Byron White " <F.Byron@...>

>

>Hi Val...Green tea has alot of goodies in it but it also has caffeine...if

>used try and get it loose and not in bags( BAGS HAVE FORMALDEHYDE IN THEM)

>...

>

>TAKE CARE...BYRON

> Re: [Lyme-aid] Neurontin

>

>

>>From: ValP74@...

>>

>>Byron, Since you are so ecucated on alternative therapies I was wondering

>>what you though of Green Tea? Someone reccomended it and I was interested

>in

>>your opinion/ feel better -Val

>>

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

[Guest guest]

Even though I am asymptompatic (90-90%), I recently had the fourth most

cited immunologist in the world (Dr. H. Hugh Fudenberg) order thousands

of dollars worth of immunological tests (Fudenberg Panels) on me. As he

has always said and I agree 100%, at the base of CFIDS is " an abnormal

immune system response " which results in an up-regulated or down

regulated " immune system.

I was astounded when we went over the immunological abnormalities that

showed up after having the test done. What that means is that the

GABApentin, Klonopin and MEGADOSE 200mg. C0 Q-10 are allowing me to

" function " normally everyday and feel very good; however, my immune

system is still deregulated. I had several viral IgG tests done on the

Fudenberg panels, and my IgM was very elevated for Herpes I (I distinctly

remember the night after getting CFIDS', the very next morning, my mouth

was covered with cold sores, i.e. reactivated of Herpes Simplex Virus I).

At my physician's suggestion, after reviewing the elevated IgM for HSV I,

I decided to go back on antigen-specific TF for Herpes Simplex Virus I,

so as to try and straighten out to some degree a very up-regulated immune

system.

My " magic bullet " so far has been the following 3200mg. Neurontin,

0.05mg. Klonopin, 200mg. COQ-10 (I mean MEGADOSES! I tried 30 mg. for

several months and noticed nothing; yet, when I increased it to 200mg.

dose, I noticed much more energy within one week. CoQ-10 can be ordered

fairly cheaply from the Vitamin Shoppe (1-800-223-1216) out east. They

are the only co. I know of that sells them in 200mg. capsules and at a

very fair price.

One theory about CFIDS' is that when the immune system is broken down,

the Herpes' family viruses become reactivated. I believe this may have

happened to me, in the case of Herpes I.

Also, Herpes Simplex I, if you read the Merck Manual states that Herpes

Simplex I (secondary to a primary infection) may cause secondary

encephalitis as evidenced by " demyelination and brain lesions to the left

frontotemporal lobes " . Those were the EXACT words describing the MRS

results I had done while in Dallas 3 yrs. ago, by Dr. Jay Seastrunk, who

started me on high dose Neurontin.

Sincerely,

Sara Brasket

[Guest guest]

I haven't read the article in the Cfids journal yet about the person who had

problems with Neurontin but I'd heard of cases like that before. Some people

have horrible effects trying to come off the drug.

In the PDR is an astonishing entire page of side effects for Neurontin, a good

number of which are very life threatening.

In looking at the doctors site sent , he has a list of other drugs recommended

to take with

Neurontin, and this is basically to treat the side effects of this drug. For

instance he mentions an

anti-depressant, because Neurontin can cause psychosis and suicide. Another are

migraine headaches for which he suggests Depakote. Still another are diurectics

for fluid retention, and he fails to mention that this could be due to

malfuction of the kidneys.

All in all, as usual, it sounds like one mans meat is another mans poison. This

could be a miracle cure for some, but not without serious risks just as Florinef

and other powerful drugs to treat the effects of this illness.

Marcia

[Guest guest]

It is great for pain...hasn't done anything for brain-fog

At 01:18 AM 12/1/99 -0500, you wrote:

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

>

>Hi,

>

>Does anyone use neurontin and if so what has been cost/benefit? I

>understand it does help pain but also brain fog! Yes! This is my newest

>addition and hopes it helps the sore joints and mucky brain.

>

>Also LLMD(lyme literate doc) wanted me to try dilantin for brain fog and

>elavil for pain. I haven't because Psych, who deals with these meds more,

>says they are older, less effective and have more side effects - esp, the

>elavil causing weight gain and hangover effect. Docs never agree though -

>LLMD thinks deseryl has more of a hangover effect. I simply assume

>individuals will react in their unique ways, however. - Except for weight

>gain on the tricylics - they REALLY do cause weight gain and I'm simply too

>vain to carry anymore weight and that is that! <G>

>

>Take care,

>

>Christie

>

>>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]

Christie,,

I just re-started Neurontin. My first go-around was at a very high dose

(though not as high as some). It was 3600 mgs per day. It really helped

with pain. But the drug can cause balance disorders in some. And it did

in me. Because it was helping my pain I denied it. But a fall and a

chpped bone and a cast made denial impossible. Especially because the

fall was clearly when I was in a Neurontin off-balance sway.

I went off it completely.

That was over a year or two ago.

Since pain is such a disabling symptom for me, my doc asked me to

consider trying it again, but increasing slowly and stopping much lower

than 3600.

I'm at l200. No balance problems. Some but not the grand pain relief.

But it does help me with quality of sleep,w hich I very much need. And it

does something good which is subtler. I feel more even-keeled, have

more equanimity, even in the face of enormous difficulties. It is really

amazing the difference. It is physiological and it's in the brain. I

know it. I don't think I've gone thru a huge emotional shift via working

on myself. I am quite sure it's the Neurontin.

I need more pain help. I'm still afraid to go higher. Maybe you could

without problems. Maybe I will VERY slowly. Right now I'm staying where

I am.

Judith

personal addie: wisdomjf@...

On Wed, 01 Dec 1999 01:18:38 -0500 " C.Tab. " <tab@...> writes:

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

>

> Hi,

>

> Does anyone use neurontin and if so what has been cost/benefit? I

> understand it does help pain but also brain fog! Yes! This is my

> newest

> a

___________________________________________________________________

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[Guest guest]

For a very comprehensive look at Neurontin; research, FAQ, package insert

etc. there is a web site of a CFS sufferer, MarilynK:

http://www.geocities.com/HotSprings/6028/nfaq.htm

That is the FAQ address. You can link to the other parts of the web site

from there.

MarilynK runs an email newsgroup for people taking Neurontin. I suggest that

if you are starting out with Neurontin that you check out the newsgroup too.

I'm sure that directions to sign up can be found on her web site.

My own experience with Neurontin was that it saved my life when pain was at

its worst. I took 3200mg/day for over a year. Pain was managed but not

absent.

I became so ataxic that I had to walk with a cane when I left the house, had

to hang onto walls to navigate around in the house. As I was building up to

the 3200mg/day which took about six months, I went from 1200mg/day to

2400mg/day then to 3200mg/day. At each level it took a good month or so

before I could safely drive. Since I was pretty much bedbound before

starting Neurontin driving was the least of my worries, but it may be more of

a concern for other people starting out on Neurontin. When I started taking

Neurontin I felt like I could do more than was actually possible. I learned

after trial and error, several episodes that landed me back in bed for a day

or a week, that easy does it and pacing myself was key. Stairs were a real

hazard and I had to pay very close attention navigating them so that I didn't

take a bad tumble.

Ultram and Neurontin potentiate each other and for really good pain control I

took them together. Ultram and Neurontin are both medications that once your

body is used to them, you can't just stop them. I tapered off Ultram about

the time my Neurontin dose reached 3200mg/day. The Neurontin alone was

giving enough pain control. I was on a regular schedule of Aspirin

throughout. In my year and a half of taking Neurontin I gained 30 pounds.

Although Neurontin helps give a more restful sleep, at the higher doses I was

a slave to taking it every six hours or I began to have a dip in my Neurontin

level and pain and nausea would rebound horribly. I learned quickly not to

be late for a dose. Not sleeping for more than six hours at a time was

unpleasant for me, but the trade off was worth it.

Based on lab tests and my clinical picture, my doc started me on antibiotics

last winter, my pain has all but cleared up! Fatigue and NMH are not

improved (yet).

I tapered off Neurontin this summer. 22 of the 30 pounds I gained while

taking Neurontin melted away without any effort. My pain level didn't

increase and I can now sleep for ten hours without having to wake up and take

some pills. I don't even think about needing my cane anymore. It took over

two months to completely get off Neurontin and much of that time was

uncomfortable.

Neurontin is wonderful for what it does, but there are some real drawbacks to

deal with while taking it. If my pain returns I would take it again.

Barb

[Guest guest]

At 12:04 PM 12/1/99 EST, you wrote:

>From: KB46@...

>

>For a very comprehensive look at Neurontin; research, FAQ, package insert

>etc. there is a web site of a CFS sufferer, MarilynK:

>

>http://www.geocities.com/HotSprings/6028/nfaq.htm

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

HI!

Thank you for this site - I've been to it. The weight gain and respiratory

problems associated with it have me a little spooked, but I am only at 200

mg/day, so perhaps these things won't be a problem.

It sounds like it put you into a remission even tho you had to experience

the ataxia! Yes I can see the drawbacks too, so this will be another

experiment for me!

Thanks,

Christie

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

>My own experience with Neurontin was that it saved my life when pain was at

>its worst. I took 3200mg/day for over a year. Pain was managed but not

>absent.

>I became so ataxic that I had to walk with a cane when I left the house, had

>to hang onto walls to navigate around in the house. As I was building up to

>the 3200mg/day which took about six months, I went from 1200mg/day to

>2400mg/day then to 3200mg/day. At each level it took a good month or so

>before I could safely drive. Since I was pretty much bedbound before

>starting Neurontin driving was the least of my worries, but it may be more

of

>a concern for other people starting out on Neurontin.

>throughout. In my year and a half of taking Neurontin I gained 30 pounds.

>Although Neurontin helps give a more restful sleep, at the higher doses I

was

>a slave to taking it every six hours or I began to have a dip in my

Neurontin

>level and pain and nausea would rebound horribly.

>

>Based on lab tests and my clinical picture, my doc started me on antibiotics

>last winter, my pain has all but cleared up! Fatigue and NMH are not

>improved (yet).

>

>I tapered off Neurontin this summer. 22 of the 30 pounds I gained while

>taking Neurontin melted away without any effort. My pain level didn't

>increase and I can now sleep for ten hours without having to wake up and

take

>some pills. I don't even think about needing my cane anymore. It took over

>two months to completely get off Neurontin and much of that time was

>uncomfortable.

>

>Neurontin is wonderful for what it does, but there are some real drawbacks

to

>deal with while taking it. If my pain returns I would take it again.

>

>Barb

>

>>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]

Dear Judith,

Thanks for the info! I am on a very small dose and hope it helps sleep. I

have had balance problems while having breathing difficulties and sure

don't need that, but I'm glad to know of this effect. Did it cause weight

gain in you? This is another thing I don't need, lol!! But, I would love

to feel more even keeled, so I'm giving this a chance.

Take care,

Christie

>From: Judith F Wisdom <judithwisdom@...>

>

>Christie,,

>

>I just re-started Neurontin. My first go-around was at a very high dose

>(though not as high as some). It was 3600 mgs per day. It really helped

>with pain. But the drug can cause balance disorders in some. And it did

>in me. (SNIP) >I'm at l200. No balance problems. Some but not the grand

pain relief.

>But it does help me with quality of sleep,w hich I very much need. And it

>does something good which is subtler. I feel more even-keeled, have

>more equanimity, even in the face of enormous difficulties. It is really

>amazing the difference. It is physiological and it's in the brain. I

>know it. I don't think I've gone thru a huge emotional shift via working

>on myself. I am quite sure it's the Neurontin.

>

>Judith

>

>personal addie: wisdomjf@...

[Guest guest]

Christie,

I didn't gain but 5 pounds when on 3600 mgs. Now, at l200 mgs (and

definitely not increasing for fear of the ataxia, which I am noticing but

only VERY occasionally, like when I am at rest and start moving) I've not

noticed a weight gain. But when I first started and was on the Neurontin

list (Marilyn K's) most people not only spoke of weight gain but water

retention and sometimes terrible edema , which I thought should be reason

to decrease, as that is not healthy.

I had no breathing problems. You might call the manufacturer. If you

ask to talk to a pharmacist there, as I did on two occasions, they are

(or were) extremely helpful.

Please don't be willing to put up with the ataxia. My opinion. You

could really hurt yourself quite badly. I suffer enormous pain, and even

with the codeine and Neurontin it often, if I don't give myself enough

rest days in between active days, I suffer terribly. But ataxia could

make you really hurt yourself, causing not just pain but months of rehab.

I don't wanna sound negative, but even if you're careful/watchful, it

can beat you to the punch.

I haven't yet read Carol's thing that's relevant to codeine and am

looking forward to it immensely. Though codeine does present a challenge

since it cannot be used for pain if used too often and your not getting

physically dependent, as some have claimed. I did, and it was horrid

getting off it.

Now I use it with great care., even though it not only helps me with pain

I know it helps with other cfs symptoms. To me it's a brain fixer, but

one that isn't safe to use enough to get the relief I long for. And, for

me, the same is the case with Neurontin.

But at l200 I'm getting some reduction in pain, I think faster rebounding

from crashes, a wonderful physiological " unhyperness, " which I've called

" equanimity " (I don't get discombombulated from external stimulation when

it comes in too fast or from too many different sources). But, while

tempting, I am holding at this dose for a goodly while since I've had not

ataxia.

I am gonna see a new (and the last one I'll ever see) pain specialist. I

want to hear his take on the use of these meds and the best protocol for

avoiding physical dependence on codeine (which I think I've figured out

for myself). And learn about one or two new things I've heard about but

don't yet know enuf about. I am also curious as to whether hypnosis

could help me. I dunno. I shall ask him. I never got any help from

biofeedback. Though when pain starts if I'm able to (e.g., not carrying

stuff) I try to let my body go as limp as possible while still holding me

upright, and that helps a little.

But, please, if the ataxia continues at the level you describe, consider

cutting back a little and see if it goes away but the pain relief isn't

diminished much.

Sometimes we do go up too fast on drugs that help, and we don't therefore

get to evaluate the value of lower doses.

I know I'm talking out of what's best for me and that you have to judge

based on your life. So I give these opinions knowing that.

Good luck, and if the pain specialist, who I'm seeing in a week or two,

has anything interesting or new, I surely will post it.

Judith

But back to the N

On Thu, 02 Dec 1999 00:18:41 -0500 " C.Tab. " <tab@...> writes:

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

>

> Dear Judith,

>

> Thanks for the info! I am on a very small dose and hope it helps

> sleep. I

> have had balance problems while having breathing difficulties and

> sure

> don't need that, but I'm glad to know of this effect. Did it cause

> weight

> gain in you? This is another thing I don't need, lol!! But, I

> would love

> to feel more even keeled, so I'm giving this a chance.

>

> Take care,

>

> Christie

>

>

>

>

>

>

> >From: Judith F Wisdom <judithwisdom@...>

> >

> >Christie,,

> >

> >I just re-started Neurontin. My first go-around was at a very high

> dose

> >(though not as high as some). It was 3600 mgs per day. It really

> helped

> >with pain. But the drug can cause balance disorders in some. And

> it did

> >in me. (SNIP) >I'm at l200. No balance problems. Some but not the

> grand

> pain relief.

> >But it does help me with quality of sleep,w hich I very much need.

> And it

> >does something good which is subtler. I feel more even-keeled,

> have

> >more equanimity, even in the face of enormous difficulties. It is

> really

> >amazing the difference. It is physiological and it's in the brain.

> I

> >know it. I don't think I've gone thru a huge emotional shift via

> working

> >on myself. I am quite sure it's the Neurontin.

> >

> >Judith

> >

> >personal addie: wisdomjf@...

>

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

[Guest guest]

Christie,

On neurontin. I began taking it about 2 months ago, only 200 mgs a day.

Within 10 days I had gained 5 pounds but I went up two sizes and my

clothes didn't fit. I've gained 20 to 60 pounds on other meds. Will NOT

do that again. So I have stopped the neurontin after a 4 week trial.

It did make me feel better. I could sleep and roll over in the night

without pain. And I really got a good night's sleep, but the weight gain

was quite apparent. Now thatI stopped for 2 weeks and shrunk back to my

former size!

sheriC

[Guest guest]

Regarding Neurontin and weight gain. My physical therapist said that I had

lymphedema which was causing me to hold fluid. The fluid was trapped in the

lymphatic system instead of the blood circulatory system. She worked like

heck on me for months to drain my lymphatic system, this helped keep my pain

down (lymph was so backed up in my right arm I would have cut it off to get

rid of the pain.) I was hard all over, which is different from pitting edema

which is associated with regular old edema. When I went off Neurontin the

problem went away and I dropped 22 pounds in less than two months.

Just wanted to mention this as lymphedema may be the culprit for others on

Neurontin. This is not regular old holding on to fluid, and I don't think

that diuretics help this type of edema. For some reason this is a topic that

I don't know a lot about. Like a hole in my knowledge base. Any other

nurses or medically knowledgeable people out there who might know something

useful about lymphedema?

Barb

[Guest guest]

KB46@... wrote:

> From: KB46@...

>

> Regarding Neurontin and weight gain. My physical therapist said that I had

> lymphedema which was causing me to hold fluid. The fluid was trapped in the

> lymphatic system instead of the blood circulatory system. She worked like

> heck on me for months to drain my lymphatic system, this helped keep my pain

> down (lymph was so backed up in my right arm I would have cut it off to get

> rid of the pain.) I was hard all over, which is different from pitting edema

> which is associated with regular old edema. When I went off Neurontin the

> problem went away and I dropped 22 pounds in less than two months.

>

> Thank YOU BARB! I knew it had to be some form of edema for me to get so big

so fast with few pounds gained! Sheri

[Guest guest]

Neurontin studies in ALS

http://www.wfnals.org/Trials/gabapentin1999b.htm

[Guest guest]

I never had seizures that I know of, but I am currently taking 1800 mg daily

of Neurontin in order to help with nerve pain, awhile back I stopped it to

see if it was really working and to my dismay found out it was helping and

quickly returned to it, and even upped my dosage after awhile. I believe

maximum dosage is 2700mg daily, some people complain of drunken feeling or

severe fatigue from the meds, it never affected me that way.

Marta

From: timibug2@... <timibug2@...>

>Neurontin is an anti-convulsant used to treat seizure disoredrs. I think

some

>are trying this and it seems the brain can seizure from the Lyme and this

>helps. KIM

[Guest guest]

Hi

My neurologist recently started me on a low dose of Neurontin. She hopes it

will reduce the numbness, tingling, and burning sensations I experience from

both spinal cord damage and the Lyme Disease. Neurontin is a second line

anti seizure medication, however it is being found to have many other uses

including reduction of nerve pain and sensory issues. I know if a few

neurologists that are using it for the treatment of adults with Attention

Deficit Disorder. I do experience that " drunken " feeling after taking just

300 mg of neurontin, so I take it when I get in bed. I certainly can't

afford any more falls....

Take care,

Jane

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Marta wrote:

I never had seizures that I know of, but I am currently taking 1800 mg daily

of Neurontin in order to help with nerve pain, awhile back I stopped it to

see if it was really working and to my dismay found out it was helping and

quickly returned to it, and even upped my dosage after a while. I believe

maximum dosage is 2700mg daily, some people complain of drunken feeling or

severe fatigue from the meds, it never affected me that way.

Marta

From: timibug2@... <timibug2@...>

>Neurontin is an anti-convulsant used to treat seizure disoredrs. I think

some

>are trying this and it seems the brain can seizure from the Lyme and this

>helps. KIM