Neurontin PS

[Guest guest]

Hi again Nita,

I forgot to say that I too quit taking Neurontin after 1 year. Reasons:

1) COST 2) to short a half life 3)electrical shock pain was gone 4) I

told my Dr. I would take it for 1 YEAR and re-evaluate, and 5) Elavil

does the same thing - plus more. Neurontin does not help everyone,

abobut 1/3 of persons taking it are 'instant responders' the second 1/3

it takes a few months to work and the last 1/3 doesn't work at all. I

think we still have info. on it somewhere in links, or elsewhere on the

CMTNeurontin list. I did a bit of research on it, but stopped my

research when I stopped taking it.

It is not FDA approved to my knowledge at this point for anything other

than epilepsy in the USA but is widely used in the CFS, Fibro and

Diabetic community, also it is being used more for mood disorders. I

know we have tons of past posts in our archives you might want to read

at your leisure also. I started it over 1 weekend, and I came off of it

over one weekend, a year later. With no problems. Those bad electrical

pains I was having either stopped or were 'quieted' since now I just

take a very small dose of Elavil for burning feet pain and tremor

control. Also, one thing Neurontin did for me with the morning dose,

which I did NOT like was that it upsurged my tremors ----

~ Gretchen

[Guest guest]

Hi everybody. This is my first message to this list.

I am an Italian physician (specialized in physical medicine and rehabilitation),

affected with severe CMT since the age of six (now I am 43) and I am in charge

of the department of diagnosis and rehabilitation of CMT disease in Ariccia

(Rome), that is probably the only place dedicated exclusively to treatment and

research on CMT.

Well, in my life and in my experience with several hundreds of CMT cases,

neuropathic pain is not frequent and troublesome to require medical treatment

for a long period.

I had shooting pain, like electric shocks, only 7-8 times in my life, when I had

skin abrasions in the feet due to tight shoes or AFOs. This pain happened in the

night when a sleep-induced vasoparalysis (= blood increase) increases

temperature in the extremities.

Now that I use proper shoes without AFOs and am careful not to hurt my feet, I

do not have this type of pain any more.

Other CMT people complaining the same symptom were found to have had nerve

biopsy or had minimal skin irritation or abrasions at their claw toes, or had

oedema in their legs due to AFOs or to poor walking. All of them have been

informed of the reason for this symptom and of the great importance of

prevention, and this was very successful (except in case of post-biopsy).

For example, a bedridden 76 y.o.woman with CMT woke up every night at 3 o'clock

because of shooting pain and cried. As I saw that her ankles and feet were

swollen due to inactivity and the skin was very thin, her daughter, who assisted

her, was taught to massage her mother's extremities twice a day, from the toes

to the thights and to take cure of her skin, avoiding even minimal irritations

against the sheets.

Since she started with this, she could rest all the night pain-free.

Of course, in CMT there is also metatarsal and joint pain (that is not

neuropathic pain), which too can be prevented or treated by a proper

comprehensive rehabilitation management without drugs.

Of course, a neuropathic pain can be a big problem, if another type of

neuropathy (e.g. diabetic neuropathy) is added to CMT, but this is a different

issue.

Have a happy Sunday.

Paolo Vinci

Paolo Vinci, M.D.

Specialist in Physical Medicine and Rehabilitation

Professor, School for Physiotherapists, University of Rome " La Sapienza "

Chief, Department of Diagnosis and Rehabilitation of CMT Disease and other

Neuromuscular Disorders - Specialized Rehabilitation Hospital " L. Spolverini " -

ASL RM H - via Chigi 64 - 00040 Ariccia (Rome) - Italy

Member of the European Charcot-Marie-Tooth Consortium

President of the Italian Charcot-Marie-Tooth Association (AICMT)

----- Original Message -----

From: Gretchen Glick <liliwigg@...>

< >

Sent: Saturday, July 28, 2001 6:53 PM

Subject: [] Neurontin PS

> Hi again Nita,

>

> I forgot to say that I too quit taking Neurontin after 1 year. Reasons:

> 1) COST 2) to short a half life 3)electrical shock pain was gone 4) I

> told my Dr. I would take it for 1 YEAR and re-evaluate, and 5) Elavil

> does the same thing - plus more. Neurontin does not help everyone,

> abobut 1/3 of persons taking it are 'instant responders' the second 1/3

> it takes a few months to work and the last 1/3 doesn't work at all. I

> think we still have info. on it somewhere in links, or elsewhere on the

> CMTNeurontin list. I did a bit of research on it, but stopped my

> research when I stopped taking it.

>

> It is not FDA approved to my knowledge at this point for anything other

> than epilepsy in the USA but is widely used in the CFS, Fibro and

> Diabetic community, also it is being used more for mood disorders. I

> know we have tons of past posts in our archives you might want to read

> at your leisure also. I started it over 1 weekend, and I came off of it

> over one weekend, a year later. With no problems. Those bad electrical

> pains I was having either stopped or were 'quieted' since now I just

> take a very small dose of Elavil for burning feet pain and tremor

> control. Also, one thing Neurontin did for me with the morning dose,

> which I did NOT like was that it upsurged my tremors ----

>

> ~ Gretchen

>

>

>