Neurontin

[Guest guest]

HI Joan...

Either of them could be causing the brain fog. Neurontin is an

anti-epileptic med. and takes a while form body to adjust. When I take it I

get drowsy and foggy...use it for sleep. Your reaction could also be a

detox. Some people find that 300mcg of molbdenum helps 3x aday. Also

antioxidants...help a great deal.

Take care :-) Byron

Re: [ ] Neurontin

From: Namkrats3@... ( Starkman)

Hi Marta,

I was just wondering what you or anyone else think...this terrible fog

that came over me today...could it possibly be a Herx and not the

Neurontin? I'm on my 9th day of Biaxin after being misdiagnosed for 10

years and being bitten for 14. My other symptoms have worsened too. If

this fog doesn't lift, I am going to go nuts! Any replies would be

greatly appreciated. Thanks, Joan

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

[Guest guest]

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]

On Green Tea... I use a extract of it off and on...its an antioxidant. I

switch them every now and then...from one antioxidant to another...Byron

Re: [Lyme-aid] Neurontin

>From: ValP74@...

>

>

>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]

Hi Joan...Hope you feel better today :-) Neurontin takes time for the

body to adjust...usually given in progressive dosages...maybe going to a

lower level for awhile would help...best wishes...Byron

Re: [Lyme-aid] Neurontin

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]

Joan...

Your welcome...I hope that the side affects diminish over time...Neurontin

is a GABA site drug( GABA creates calmness in the nervous system )...100 mg

helps me sleep at night. At higher dosages( some peolpe take it in the

thousands of milligrams ! ) I am sure it would put me in a coma., :-)

Take care...Byron

Re: [ ] Neurontin

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]

Steve, you asked about Neurontin. There is at least one that reply to you on

this list with her own personal experiences and hope she will. Neurontin is

gabapentin and Dr. Jay Seatrunk first began using it on CFIDS patients that

he viewed as being brain damaged. It has been a very positive drug for many

and other physicians have added it to thier agendas. However, he often went

up so high in the dosages, that bad side-effects were seen and other

physicians felt he had gone too far. Dr. Jay Goldstein uses it for patients,

Dr. Cheney, and many, many more specialists. It can be wonderful for

reducing pain when used correctly.

Gail

[Guest guest]

Dear Steve and all,

I have written reams about how Neurontin saved my life, so I won't go into it

again...

I've been on a " high " dose for fifteen months and haven't had any serious

problems. There were unpleasant side effects at first, but they all passed.

Neurontin ISN'T METABOLIZED, and passes into the urine, so it doesn't

interact with anything else in a negative way. The Neurontin web site is

your best bet for info, here's the address for the Neurontin FAQ, and you can

access the rest of the site from there:

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

I hope that any of you who try Neurontin have as good a response to it as I

have had. My response isn't unusual, and there are some people on the

Neurontin users email list that I belong to, that have done even better than

I have.

Barb

PS Steve if you are really interested in more details on my story, email me

backchannel. I only get the digest form of CFSMExperimental, and I can't

read it on line, have to download to briefcase and read it there, then I

can't see the posts when I want to reply. It's all very frustrating. That's

why I can answer specific questions most easily backchannel.

[Guest guest]

Dear Dave,

Thank you for the fill in on the Neurotonin. I am asking for it from my

neurologist next week. My SPECT scan results showed that all evidence of the

CNS Lyme is gone. However, it did show evidence of the stroke I had 28

months ago--also showed evidence of the depression I have been battling for

the last nine years since the PA really took hold. My rheumatologist feels

that the numbness and tingling in the shoulders-hands -- wrist now could be

due to nerve compression in the C-Spine from degeneration over the years from

the PA

constantly flaring. The fatigue is definitely related to flares for me. I

even get narcoleptic-like episodes while driving more than 30 minutes out of

town

when I am flaring. Those times I now pay someone to drive me to NYC!

Anyhow,

That is my news for the day.

Thanks for the compliments, they are appreciated. I have always been a

" closet "

writer, so I guess I am getting my fun in

editing the list! Who knows, maybe it will lead me to write nonfictional

articles on health related topics or patients rights -- my two favorite areas

of interest.

[Guest guest]

Dr. Jay Seastrunk has closed his California office (his Texas office is still

open). There is word that several patients are suing him for endangering

their lives by putting them on too high doses of Neurontin. Some were

hospitalized. I've only verified this via one patient who is one that is

suing, but another source (a doctor) has said there were several. Just a

warning that going too, too high may be dangerous.

Gail

[Guest guest]

Wow this is very interesting I just started taking Neurontin but I am only

taking about 600 mg a day. It does seem to help the old brain. Does anyone

know what a good safe does would be?

thanks

Steve

> Re: Neurontin

>

> From: GAILRONDA@...

>

> Dr. Jay Seastrunk has closed his California office (his Texas office is

> still

> open). There is word that several patients are suing him for endangering

> their lives by putting them on too high doses of Neurontin. Some were

> hospitalized. I've only verified this via one patient who is one that is

> suing, but another source (a doctor) has said there were several. Just a

> warning that going too, too high may be dangerous.

> Gail

>

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

> How has ONElist changed your life?

> Share your story with us at

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

> 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]

Steve, I don't have any personal experience with Neurontin, but know that

conservative doctors feel 12 to 1400 should be the maximum.

Gail

[Guest guest]

thanks I am going to work up to 1200 in the course of a month. I seems to

help with mental energy and reading comprehension & a little bit with

physical energy. Does not (yet) do much for short term memory--what was I

saying.

take care

Steve

> Re: Neurontin

>

>

> From: GAILRONDA@...

>

> Steve, I don't have any personal experience with Neurontin, but know that

> conservative doctors feel 12 to 1400 should be the maximum.

> Gail

>

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

> ONElist: where real people with real interests get connected.

>

> Join a new list today!

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

> This list is intended for patients to share personal experiences with each

> other, not to give medical advice. If you are interested in any treatment

> discussed here, please consult your doctor.

[Guest guest]

Hi,

Does neurontin ease brainfog??

CHristie

tab@...

At 02:12 PM 6/10/99 -0500, you wrote:

>From: " , T. " <S@...>

>

>Wow this is very interesting I just started taking Neurontin but I am only

>taking about 600 mg a day. It does seem to help the old brain.

[Guest guest]

I have just started but I can say that it seems to. I will gradually

increase my dose over the next month & I will keep you informed.

take care

Steve

> Re: Neurontin

>

>

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

>

>

> Hi,

>

> Does neurontin ease brainfog??

>

> CHristie

> tab@...

>

>

>

>

>

> At 02:12 PM 6/10/99 -0500, you wrote:

> >From: " , T. " <S@...>

> >

> >Wow this is very interesting I just started taking Neurontin but I am

> only

> >taking about 600 mg a day. It does seem to help the old brain.

>

>

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

> ONElist: the best source for group communications.

>

> Join a new list today!

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

> 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]

I'd like to add a word on the topic of what I think is wise concern about

the Seastrunk-high doses of Neurontin.

I went up to 3600 mgs. I REALLY helped one of my main disabiling symptoms

(muscle pain) in a way nothing else has, making me, of course, love it.

HOWEVER, though I did get beyond the rather long initial problem of falling

asleep during the day VERY DEEPLY for long periods, as I increased the dose

I noticed I was having some balance problems. Not dizziness. Just a

reduction of steadiness.

I utterly ignored it and was fully prepared to tolerate it in exchange for

the wondrous pain relief. Until I fell and chipped a bone badly enough

that I had to be casted for eight weeks!

I did not fool myself any longer; no more maintainting the belief that I

could handle the balance problem (ataxia), which IS one of Neurontin's

possible side effects. I reduced it slowly. I spoke to some folks at

Vanderbilt (apparently some of the docs out there had been very positive

about Neurontin and in touch with Seastrunk. They were souring on it big

time, having seen too many resultant disorders from it, given at Seastrunk

doses.

Though it hasn't been tested for CFS, the testing that it has been

subjected to suggests that l600 mgs is the max safe dose (for seizures).

And, let's be honest: even THOSE tests should be looked at as preliminary.

For until a drug has had a chance to be used long term there is NO way to

test it for long term effects.

The other side effect that some other Neurontin people reported (I didn't

get) was edema, especially in the feet. In some cases resulting in gross

swelling. I am not a dr but that is not a symptom I think one should be

casual about. The inefficient ridding of fluids can be related to cardiac

function, and if that symptom occurred to me I'd see a cardiologist tout de

suite.

Anyway. this is not a Neurontin bashing post. I have just come to worry

about doses beyond l600 and/or ones that produce side effects of the sort

that can be impairing or suggestive of physiological and serious impairment.

WE all, with this illness, or, many of us, have to adopt an empirical

approach to treatment. That puts a huge burden on us and our docs. Or

we'd have NO treatment. But it makes it ever more important to be vigilent

because we don't have large-scale scientifically guided studies to give us

some data. Not that they are the be-all and end-all. But they, if done

well, do help.

Each time I try something new and untested I worry and also have great

hope. I pass lots up that maybe I shouldn't. It is all a bit of a

crap-shoot. But once you develop side effects that could undermine your

health, even if you're being helped, as I was with Neurontin, I do urge you

to be wary and watchful as hell. I wasn't, and I paid. I ignored my

common sense because of my love of relief of pain and the greater

life-freedom it gave me, at my peril.

I expect what I've said most of you feel too, but I think sometimes a post

maybe provokes in one of us (here, me) a need to reiterate it. It is a

burden , among so many, we're all up against big time.

Judith

, you wrote:

>From: GAILRONDA@...

>

>Dr. Jay Seastrunk has closed his California office (his Texas office is

still

>open). There is word that several patients are suing him for endangering

>their lives by putting them on too high doses of Neurontin. Some were

>hospitalized. I've only verified this via one patient who is one that is

>suing, but another source (a doctor) has said there were several. Just a

>warning that going too, too high may be dangerous.

>Gail

>

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

>How has ONElist changed your life?

>Share your story with us at

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

>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]

Judith thanks for you very wise (no pun intended post) at this point I am

taking only 600 mg of neurontin and it seems to be helping me cognitively. I

do not have much pain so that is not an issue. I plan to try to take it up

to 1200 mg. In the past I have taken Ritalin to try to get my brain going

but I found it only to help on days when I was feeling pretty good.

So far the only problem I have with neurontin is that my mind wants to push

my body faster than my body can go. But at least I can read a book. It seems

to help more with mental concentration more than short term memory. In other

words I can focus on my book but I forget where I put it down.

I will watch carefully for side-effects and I would be interested in hearing

about the experience of others.

thanks

Steve

PS I heard on another sight the Neurontin is not that good for muscle pain

but is more effective for nerve pain.

[Guest guest]

Hi Everyone,

I'm Judy and I have probably only posted to this list once even though I've

been a member for several months. Lately, because of time constraints, I

haven't been reading all the posts. I apologize if I'm coming on in the

middle of a thread.

I read what Judith Wisdom and Gailronda had to say about Neurontin. I have

been on it for over two years, but only at 900mg a day. It does help with my

pain by relaxing the muscles so they don't hurt as much and also I do manage

a deeper, more restful level of sleep since I've been on it since I have

Restless Legs Syndrome and Periodic Limb Movement Disorder. The Neurontin

calms these down so that I can acheive a deeper level of sleep.

Recently, since my pain levels have increased greatly, my doc decided to up

the dosage of Neurontin to 1500mg a day. I was to increase it by adding a

100mg capsule to the 300mg I already take. When I adjusted to this, I was to

then increase it again by another 100mg for a total of 500mg. I think I was

(maybe) to add a third one later if this worked out. When I first began

Neurontin, I ramped up the dosage much slower than anyone I've known who's on

it. I took 300mg for nearly six months as opposed to one day (manufacturer's

recommendations), then took 600mg for another year and finally reached 900mg

after a year and a half. Luckily, the wonderful Neurologist who started me

on these was of the mind that if you achieve relief at a lower dose of any

med, then stay there as long as you can. By doing this, I was able to avoid

many of the side effects I've heard others talk about. However, when I tried

to up the dosage even 100mg added onto my 300mg (3xday), my feet and ankles

began to swell. I have foot pain in the soles of my feet all the time

anyway and this increased until I could hardly stand to walk. I immediately

dropped back down to my usual 900mg a day. I was ramping up by only adding

100mg a day anyway and had only just reached the extra of taking 400mg

instead of 300 (3xday), so ramping down was a pretty fast process. The

swelling went away. I again tried to ramp back up with the same result. I

ramped back down and again, the swelling went away. I have also noticed a

very draggy feeling in my right arm and leg since I've been on the Neurontin.

I have no idea if this is due to N. But, I noticed it was worse when I

began to ramp the dosage up.

I guess the point I'm trying to make is that I agree with Gail and Judith

that even though this drug does have " some " benefits for " some " sufferers,

there are also side possible side effects. It is a drug that works in the

central nervous system and I believe that any drug that does that must be

used with caution. You should always pay attention to what your body is

telling you even it medical " wisdom " says otherwise.

My Restless Legs Syndrome is severe. After the onset (following surgery), I

was only able to sleep maybe two hours of broken sleep out of 24 hrs. This

went on for months and almost broke me mentally and physically. The

Neurontin provides blessed relief from that nightmare. I have tried to go

down even from 900mg a day, but the RLS symptoms come back. Believe me, if I

didn't need this drug to be able to lead half a life, I would not be on it.

CNS drugs are to be approached with caution, in my humble opinion. Still,

sometimes......ya do whatcha gotta do. LOL

Gentle Hugs,

Judy

[Guest guest]

This is in response to Judy's (Jak1220@...) post describing her

experience with Neurontin, but going beyond it to comment on the issue of

CNS drugs. I have to say my experience has led me to the very same

conclusion as voiced in your words:

>

>I guess the point I'm trying to make is that I agree with Gail and Judith

>that even though this drug does have " some " benefits for " some " sufferers,

>there are also side possible side effects. It is a drug that works in the

>central nervous system and I believe that any drug that does that must be

>used with caution. You should always pay attention to what your body is

>telling you even it medical " wisdom " says otherwise.

>

>. Believe me, if I

>didn't need this drug to be able to lead half a life, I would not be on it.

>CNS drugs are to be approached with caution, in my humble opinion. Still,

>sometimes......ya do whatcha gotta do. LOL

>

>

>

>

For example, I'm now on a pain drug called ZanaFlex. And it too affects

the brain (it's an alpha-2 adrenoceptor agonist!). It's pain control is

only moderately good, sometimes lousy. But if I increase the dosage the

side effects are horrible/intolerable, and even at the lowest effective

dosage (moderate pain relief) there are distinct undesirable ones (many of

which I can tolerate) and some vague ones that I THINK very much are the

result of the drug (since I don't feel them when I get off the drug). I

don't like them but they are almost impossible to describe.

I believe that difficulty in describing them is because of how complicated

the brain is and how various the ways, and how subtley, it affects the way

we feel.

I have concluded also that there is virtually no brain drug that doesn't

have undesirable side effects, and that, with Judy, the LOWEST, effective

dose should be taken if the side effects increase to a

worrisome/painful/disabling degree. " They " just still don't know enuf

about the brain and about CFS and how these drugs affect both.

It's a bummer. Pain is such a major disabling factor in my life. It is

iatrogenic too, because the inactivity it causes has major health

implications, as well as social and financial ones, all of which negatively

affect our health.

I just did some MEDLINE research on codeine, which helps me the most and

gives me virtually no side effects that I cannot deal with, and really,

really kills the pain. But there is no way that I've found so far to get

any expert to say you won't get physically dependent on it. There is much

disagreement. My neurologist says no more than ten 30mg tabs per month.

Another doc in this city, very reputable, says you can take much, much more

AS LONG AS YOU SKIP DAYS IN BETWEEN, which makes a kind of sense. The

abstracts (I didn't get articles) don't reveal enough, though one said that

physical dependence cannot be avoided in chronic usage (I want to see the

article to see if he speaks of dosage).

But it doesn't seem to be something where there is enough certainty. So if

you want to avoid dependence the most conservative approach (like my " damn "

neurologist's advice) is probably best.

And some people can't tolerate codeine.

We've gotta find a cure for CFS unless they come up with wondrous drugs for

fatigue and for pain (my biggies), and for the other big symptoms people

with CFS suffer.

Judith

[Guest guest]

I am glad to hear the discussion on Neurontin. I have been taking it --

ramped up rather quickly to 1200 mg --but I am a fairly big person (200Lbs).

I started taking it not for pain but to try to improve cognitive

functioning. I have only been on it for about two weeks. I a little worried

about it but I am not sure what to do. No side effects yet but I have not

seen any benefit either. I hope folks will keep track of this issue.

thanks

Steve

[Guest guest]

Hi Everybody,

I was wondering if anyone else had this happen...after taking my 1st

Neurontin (300 mg.), I got foggy for about 2 hrs., but the next few days

it didn't seem to affect me that much.

Today, after taking it, I got TOTALLY spaced out...everything looked

surreal ...I felt as if I was sleepwalking. It's been 3hrs. since I took

it and I am finally snapping out of it...weird.

I would hate to stop taking it-it's helped with my headaches and nerve

pain. I just don't know how long this happens or if it goes away after

taking it for a while. Anybody know? Sorry if this doesn't make any

sense...Joan

[Guest guest]

Hi Joan,

I am up to 900mg of Neurontin daily, I gradually increased the dosage,

and never noticed the fogginess. If I had it, I attributed it to Lyme

disease.....I do have a tendency to blame everything on this disease. I

have noticed a marked improvement in all my pain and some of my tingling

too. I would suggest you keep at it to see if the fogginess goes away, and

discuss it with your doctor next appointment,

Hugs,

Marta

From: Namkrats3@... ( Starkman)

Hi Everybody,

I was wondering if anyone else had this happen...after taking my 1st

Neurontin (300 mg.), I got foggy for about 2 hrs., but the next few days

it didn't seem to affect me that much.

Today, after taking it, I got TOTALLY spaced out...everything looked

surreal ...I felt as if I was sleepwalking. It's been 3hrs. since I took

it and I am finally snapping out of it...weird.

I would hate to stop taking it-it's helped with my headaches and nerve

pain. I just don't know how long this happens or if it goes away after

taking it for a while. Anybody know? Sorry if this doesn't make any

sense...Joan

[Guest guest]

Thanks Marta..I will try to stick with it.

Hope you're feeling better today...Joan

[Guest guest]

Hi Marta,

I was just wondering what you or anyone else think...this terrible fog

that came over me today...could it possibly be a Herx and not the

Neurontin? I'm on my 9th day of Biaxin after being misdiagnosed for 10

years and being bitten for 14. My other symptoms have worsened too. If

this fog doesn't lift, I am going to go nuts! Any replies would be

greatly appreciated. Thanks, Joan

[Guest guest]

that happened to me on paxil, they had given me too high a dosage (dble what

i could handle). i was a BASKET CASE, couldn't move totally fogged over!

someone just posted something about " building up " to a certain level. may

be you need to back off on dosage and gradually increase? call pharmicist.

>From: Namkrats3@... ( Starkman)

>

>Hi Everybody,

>

>I was wondering if anyone else had this happen...after taking my 1st

>Neurontin (300 mg.), I got foggy for about 2 hrs., but the next few days

>it didn't seem to affect me that much.

>Today, after taking it, I got TOTALLY spaced out...everything looked

>surreal ...I felt as if I was sleepwalking. It's been 3hrs. since I took

>it and I am finally snapping out of it...weird.

>I would hate to stop taking it-it's helped with my headaches and nerve

>pain. I just don't know how long this happens or if it goes away after

>taking it for a while. Anybody know? Sorry if this doesn't make any

>sense...Joan

>

>

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

[Guest guest]

Joan,

I just don't know for sure, since we are all different, we suffer from

this disease differently and our reaction to meds is different. I do recall

in my own past experience, once I was on Amoxicillin and Probenecid in large

doses, very early in my Lyme treatment. I was a blithering idiot, I did not

know left from right, it was the worst case of fog ever.....very scary. I

could not have typed a thing on the computer, let alone read anything. This

passed as did lots of symptoms, I have found my fog is worst on some days,

but mostly at it's very worst when I am herxing....but this is just me and

we are all different, so please, check with your doctor....I doubt that

continuing the medicine will hurt you, so gauge the difference as you

continue to take it.

Hugs,

Marta

From: Namkrats3@... ( Starkman)

Hi Marta,

I was just wondering what you or anyone else think...this terrible fog

that came over me today...could it possibly be a Herx and not the

Neurontin? I'm on my 9th day of Biaxin after being misdiagnosed for 10

years and being bitten for 14. My other symptoms have worsened too. If

this fog doesn't lift, I am going to go nuts! Any replies would be

greatly appreciated. Thanks, Joan

---