Anyone using Neurontin for Lhermittes?

[Maureen]

I'm newly diagnosed, and I just found this group. I hope someone here
can help me climb this rather steep learning curve...

My neurologist has prescribed Neurontin for Lhermittes. I'm doing the
graduated dosing, and I'm up to 900mg a day. I've been weathering
some inconsistent loopiness (whee!) but I don't really detect any
changes in my Lhermittes. I have no other painful symptoms.

Has anyone here taken Neurontin specifically for Lhermittes? I'd be
grateful if you could share your experiences.

Thanks!

-- Maureen

[bobD]

hi maureen!!!

i used neurontin not just for the neck-trocution!!! as i call it,, but also
for other nerve pain issues i have,,

like you i started at 900mgs a day,, and my final dose was 3600mgs per day,,
it worked ok,, but not for my major nerve pain issue,,

you might ask your doctor to put you on a higher more effective dose!!!

i took 900mgs 4 times a day!!!! it was very tolerable,, for me,,

but it was also used in conjunction with high doses of morphine,, baclofen
, etc etc etc,,

so i cant say for sure if just neurontin alone will help you,, ,, i would
suggest asking about higher dose,, my doctor told me that 3600mgs per day
was about tops for treating MS,, in BC Canada, anywayz!!! not much higher
dose is rxed for MS,,


sorry you had to look for this group , that sucks but we are here to offer
help, in anything you ask about,, whatever you need to know about MS
someone here will have an answer of at least point you somewhere you can
find it,,

bobD :^)

Post by Maureen
I'm newly diagnosed, and I just found this group. I hope someone here
can help me climb this rather steep learning curve...
My neurologist has prescribed Neurontin for Lhermittes. I'm doing the
graduated dosing, and I'm up to 900mg a day. I've been weathering
some inconsistent loopiness (whee!) but I don't really detect any
changes in my Lhermittes. I have no other painful symptoms.
Has anyone here taken Neurontin specifically for Lhermittes? I'd be
grateful if you could share your experiences.
Thanks!
-- Maureen

[Maureen]

Thanks bobD!

Thanks for your thoughts! Sorry, I should've been clearer about my
dosage. Over several weeks, on the advice of my neurologist, I have
worked my way up from a starting dose of 300 mg, to 600mg, and now to
900 mg. I will hold at this dosage for two weeks and if I can
tolerate it, I will progress gradually up to 1800mg. The neurologist
will then make a judgement about whether it's working, whether I
should go higher, or what...

This is based on a chart she gave me with the Neurontin logo on it
(and a nice comforting photo of an older gentleman, perhaps James
Whitmore). She told me that with Neurontin, it's a good idea to
start with the lowest dose and then work higher. It helps you build
up tolerance for the side effects, or something like that.

That's quite a painkiller cocktail you describe, bob. Are you still
on all those?

Neck-trocution! I love that....

Thanks again.

-- Maureen

[SalivaryResearch]

I've had Lhermittes for twenty years. Neurontin, Elavil, and many other drugs
did nothing for me.
Lehermittes was nothing compared to other pain that I've had from MS. Now, I
use Methadone. 10 mgs, three times a day.I don't think that your doctor is
going to give you Methadone for Lhermittes.
Does it bother you so much?
Good luck.

[Laura]

I was wondering the same thing - I never considered Lhermites to be
painful, just an odd MS thing that happens to my 'MS body. Is pain
associated with Lhermites for some or is the original posters doctor
erroneously attributing pain to Lhermites possibly? If he is,
management of whatever this pain is from may not be being handled
correctly maybe?

I just worry because once I was diagnosed with ms, for a period I had
difficulty getting doctors to consider any health problem NOT being
caused by MS. Finally found a doctor who while considering MS, still
is open to there being other causes (and surprise surprise..other
causes found for some problems..)

[bobD]

Post by Laura
I was wondering the same thing - I never considered Lhermites to be
painful, just an odd MS thing that happens to my 'MS body. Is pain
associated with Lhermites for some or is the original posters doctor
erroneously attributing pain to Lhermites possibly? If he is,
management of whatever this pain is from may not be being handled
correctly maybe?
I just worry because once I was diagnosed with ms, for a period I had
difficulty getting doctors to consider any health problem NOT being
caused by MS. Finally found a doctor who while considering MS, still
is open to there being other causes (and surprise surprise..other
causes found for some problems..)
--
Laura

my doctor checked to see if my left arm nerve pain was due to ms attack,, as
it looked like it was,,or something else,,like maybe i pulled a disc or
somthing in my neck when i was coughing from pneumionia?? pinched a nerve
in my neck???

my arm hurts 10000x more than anything else i have had,, even the lumps in
my guts are not as bad as how my left arm/hand feels,, to me its like
someone cut oa hole in my elbow and hooked up jumper cables to the nerves
inside,, it feels like it is being zapped with 30 amps!!! or when you do the
electrocution tests for evoked potential tests,,

at times i wish i was taking lots of opium again so i could just get some
sleep,, and rest from this intense pain problem,, i need a pill with an
ounce of pot worth of thc in it!!!! concentrated!!!!!! to help!!!!!

bobd

Post by Laura
I don't think that your doctor is

Post by SalivaryResearch
going to give you Methadone for Lhermittes.
Does it bother you so much?
Good luck.

[Maureen]

Hi Salivary, Laura, and Bobd --

Thanks for answering.

Post by SalivaryResearch
Does it bother you so much?

No, the lhermittes doesn't bother me so much. It's annoying rather
than painful. Stops me for a moment, but isn't debilitating -- it
might be a problem if I made my living as a tightrope walker, but I
don't. Currently I have no other symptoms, other than fatigue and
heat sensitivity. No pain.

I didn't ask the neurologist for drugs to help with the lhermittes;
she just suggested Neurontin, saying it might help. I did some basic
research on it, checked the listed side effects, and decided to give
it a try. I am on a graduated dosage, which means I am supposed to
work my way up to 1800mg a day.

So far it's not making any difference for the lhermittes, and it does
make me feel a bit loopy, which is not necessarily a bad thing, but I
thought I would check in here and see if anyone was using Neurontin
specifically for lhermittes. I will stay on it if it helps.

Post by SalivaryResearch
I don't think that your doctor is going to give you Methadone for

Lhermittes.

No, I don't think so either! But ya never know. I got the Neurontin
without asking for it, so who knows what I could get if I started
asking! :) As Laura delicately suggested --

Post by SalivaryResearch
is the original posters doctor erroneously attributing pain
to Lhermites possibly? If he is, management of whatever
this pain is from may not be being handled correctly maybe?

Exactly my thoughts, Laura. I am never shy about questioning my
health management. I told the doctor I'm not in pain. Should I
wonder about the Neurontin? Really, that's why I came here, to see if
I could find anyone else who is on Neurotin specifically for
lhermittes.

No luck so far, but I'm young yet... :)

-- Maureen

[Rob Duncan]

Describe your symptoms. Was a pharmacy rep there during any of your doctors
appointments? Neurontin doesnt work for MS. They faked all there studies.
Theyve been sued for millions. I dont think Neurontin would work for
Lhermittes either. Doctors are pushed very hard by drug companies to push
neurontin. If they get enough of there patients to take it they get free
gifts and vacations. True. Watch out for whatever drugs they try and get
you to take. If youre not experiencing pain you shouldnt be taking a drug
that could potentially be bad for you.


Rob

Post by Maureen
Hi Salivary, Laura, and Bobd --
Thanks for answering.

Post by SalivaryResearch
Does it bother you so much?

No, the lhermittes doesn't bother me so much. It's annoying rather
than painful. Stops me for a moment, but isn't debilitating -- it
might be a problem if I made my living as a tightrope walker, but I
don't. Currently I have no other symptoms, other than fatigue and
heat sensitivity. No pain.
I didn't ask the neurologist for drugs to help with the lhermittes;
she just suggested Neurontin, saying it might help. I did some basic
research on it, checked the listed side effects, and decided to give
it a try. I am on a graduated dosage, which means I am supposed to
work my way up to 1800mg a day.
So far it's not making any difference for the lhermittes, and it does
make me feel a bit loopy, which is not necessarily a bad thing, but I
thought I would check in here and see if anyone was using Neurontin
specifically for lhermittes. I will stay on it if it helps.

Post by SalivaryResearch
I don't think that your doctor is going to give you Methadone for

Lhermittes.
No, I don't think so either! But ya never know. I got the Neurontin
without asking for it, so who knows what I could get if I started
asking! :) As Laura delicately suggested --

Post by SalivaryResearch
is the original posters doctor erroneously attributing pain
to Lhermites possibly? If he is, management of whatever
this pain is from may not be being handled correctly maybe?

Exactly my thoughts, Laura. I am never shy about questioning my
health management. I told the doctor I'm not in pain. Should I
wonder about the Neurontin? Really, that's why I came here, to see if
I could find anyone else who is on Neurotin specifically for
lhermittes.
No luck so far, but I'm young yet... :)
-- Maureen

[bobD]

at the time i was working in landscaping ,, and spent all day looking down
weed eating, or running my John Deere, looking down,, so i noticed it
bothered me during my work,, unless we were cutting down sick trees,, then i
looked up all day,,

bobD

Post by Maureen
Hi Salivary, Laura, and Bobd --
Thanks for answering.

Post by SalivaryResearch
Does it bother you so much?

No, the lhermittes doesn't bother me so much. It's annoying rather
than painful. Stops me for a moment, but isn't debilitating -- it
might be a problem if I made my living as a tightrope walker, but I
don't. Currently I have no other symptoms, other than fatigue and
heat sensitivity. No pain.
I didn't ask the neurologist for drugs to help with the lhermittes;
she just suggested Neurontin, saying it might help. I did some basic
research on it, checked the listed side effects, and decided to give
it a try. I am on a graduated dosage, which means I am supposed to
work my way up to 1800mg a day.
So far it's not making any difference for the lhermittes, and it does
make me feel a bit loopy, which is not necessarily a bad thing, but I
thought I would check in here and see if anyone was using Neurontin
specifically for lhermittes. I will stay on it if it helps.

Post by SalivaryResearch
I don't think that your doctor is going to give you Methadone for

Lhermittes.
No, I don't think so either! But ya never know. I got the Neurontin
without asking for it, so who knows what I could get if I started
asking! :) As Laura delicately suggested --

Post by SalivaryResearch
is the original posters doctor erroneously attributing pain
to Lhermites possibly? If he is, management of whatever
this pain is from may not be being handled correctly maybe?

Exactly my thoughts, Laura. I am never shy about questioning my
health management. I told the doctor I'm not in pain. Should I
wonder about the Neurontin? Really, that's why I came here, to see if
I could find anyone else who is on Neurotin specifically for
lhermittes.
No luck so far, but I'm young yet... :)
-- Maureen

[bobD]

Post by Maureen
Thanks bobD!
Thanks for your thoughts! Sorry, I should've been clearer about my
dosage. Over several weeks, on the advice of my neurologist, I have
worked my way up from a starting dose of 300 mg, to 600mg, and now to
900 mg. I will hold at this dosage for two weeks and if I can
tolerate it, I will progress gradually up to 1800mg. The neurologist
will then make a judgement about whether it's working, whether I
should go higher, or what...

i started at 900mgs a day only because i was already taking tegretol, and
before that dilantin,, similar effect drugs for epileptic seizures,, so i
was use to a harsher side effect.

then i went up to the full dose of 3600mgs a day,,

Post by Maureen
This is based on a chart she gave me with the Neurontin logo on it
(and a nice comforting photo of an older gentleman, perhaps James
Whitmore). She told me that with Neurontin, it's a good idea to
start with the lowest dose and then work higher. It helps you build
up tolerance for the side effects, or something like that.

this is similar to many drugs you will take,, start low dose ,, learn how
you react and how it makes you feel,, over time,,

Post by Maureen
That's quite a painkiller cocktail you describe, bob. Are you still
on all those?

Nope,, i got sick of the side effects especially from morphine,, the
addiction factor, the damage to my body etc etc,,

not on advice from my doc or neuro i chucked it all in the garbage,, every
last thing,, not all at once i did it over 1 years time going off all meds
!!!

last demeber was when i went cold turkey off morphine,,, and i felt glad to
do it,, i got severe withdrawls but i stuck with smoking marijuana only ,,
and it helped me big time get off the narcs!!!

i now use only Marijuana to deal with my disease,, i tried Topamax for
severe nerve pain in left hand,, but it is totally useless waste of money,
for me .

if you try Neurontin,, ask your doctor about Topamax,, it is new for
treating MS,, and is supposed to be a step higher than Neurontin for doing
the exact same thing,, and i was told less side effects as neurontin.

again its a drug used for epilepsy that now is rxed for MS nerve pain, like
neurontin/tegretol/dilantin

so now i am back to only using marijuana ,, i gave this new stuff a try,,
and it did not work for me,,, i am willing to try anything,, Once!!!

Post by Maureen
Neck-trocution! I love that....
Thanks again.
-- Maureen

that describes what it feels like to me best!!! i have touched live wires
while in new home construction,, electricians didnt push them into wall
area,, i got zapped,, feels like being zapped,, but 24/7 not less than 1
second!!!

bobD

[Erik]

I have used Neurontin (300mg) to treat some tingling in my hands during
my "first" exacerbation. It helped a lot with that so based on how
Lhermittes has felt for me it would work great. Lhermittes has been
pretty mild for me though so I have never wanted anything for it.

--Erik
http://home.comcast.net/~eriksmithtx/blog/

[Maureen]

Two days ago I decided to stop taking the Neurontin, since I could
find NO instances on the internet of it being useful for just
lhermittes. I found lots of instances of Neurontin being prescribed
for disorders for which it was not originally intended. I wouldn't
have any problem with that IF the Neurontin seemed to be working, but
it wasn't. And since my hair was falling out and my skin was breaking
out and I felt dizzy and drunk much of the day, I decided to just deal
with the lhermittes.

Thanks, everyone, for your input. It was very helpful!

-- Maureen

[Rob Duncan]

Post by Maureen
Two days ago I decided to stop taking the Neurontin, since I could
find NO instances on the internet of it being useful for just
lhermittes. I found lots of instances of Neurontin being prescribed
for disorders for which it was not originally intended. I wouldn't
have any problem with that IF the Neurontin seemed to be working, but
it wasn't. And since my hair was falling out and my skin was breaking
out and I felt dizzy and drunk much of the day, I decided to just deal
with the lhermittes.
Thanks, everyone, for your input. It was very helpful!
-- Maureen

Sucks though doesnt it? My neck "thing" eventually went away on its own
time.


Rob

[Laura]

Hail Maureen. First step in taking control of your health care has
been taken by you! or at least *A* step.
--
Laura

Post by Maureen
Two days ago I decided to stop taking the Neurontin, since I could
find NO instances on the internet of it being useful for just
lhermittes. I found lots of instances of Neurontin being

prescribed

Post by Maureen
for disorders for which it was not originally intended. I wouldn't
have any problem with that IF the Neurontin seemed to be working, but
it wasn't. And since my hair was falling out and my skin was

breaking

Post by Maureen
out and I felt dizzy and drunk much of the day, I decided to just deal
with the lhermittes.
Thanks, everyone, for your input. It was very helpful!
-- Maureen

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