Re:After a nap... IWhy Neurontin

[Guest guest]

I'm on Neurontin for HA. It started to help after a few weeks. I may be having

some side effects that have been talked about recently so I need to call my MD.

Hard to know what to do sometimes. Here's some info about Neurontin

NEURONTIN-L FAQ

http://home.tampabay.rr.com/lymecfs/nfaq.htm

©Marilyn Kerr RN 1998-2001

Updated October 27, 2001

Neurontin has been studied since 1983 and was approved by the FDA for the

control of epilepsy in 1994. Parke- has been successfully conducting

long-term clinical trials in doses at 2400-3600mg a day.

In 1996, research for other purposes began appearing and there has been a

quiet revolution of patients and doctors finding that Neurontin is helpful in

illnesses other than epilepsy. Neurontin being prescribed for disorders other

than epilepsy is called " off-label " use.

Neurontin has a growing multitude of medical studies showing it effective for

off-label illnesses such as:

Reflex Sympathetic Dystrophy (RSD),

brain injury,

essential tremors,

sleep dysfunction,

Interstitial Cystitis,

refractory GU tract pain,

agitation secondary to dementia,

muscle cramps,

inflammatory injuries,

tinnitus

phantom limb pain

cocaine dependence

TMJ,

neuropathic pain,

Shoulder-Hand Syndrome,

hemifacial spasms,

peripheral neuropathy,

the pain, nystagmus, and spasticity of Multiple Sclerosis (MS),

trigeminal neuralgia,

prophylaxis and for acute migraines,

for pain secondary to epidural fibrosis,

acute and postherpetic neuralgia (Shingles),

acute pain from Herpes Simplex,

post-operative pain,

myofascial pain (MPS),

radiation myelopathy,

cancer pain

Restless Leg Syndrome (RLS),

Lou Gehrig's Disease (ALS) (but not its progression),

Periodic Leg Movement (PLM),

chronic pain not already mentioned here,

Bipolar Disorder,

social phobias,

somatiform pain with depression,

mood disorders,

both situational and clinical depression,

and it was concluded in one study that gabapentin (Neurontin) " represents a

novel class of antihyperalgesic agents " (pain medications) and millions of us

have proven that.

Dr. Seastrunk, a psychiatrist from Texas, was one of the first doctors who

found Neurontin helpful in CFS and FMS and he theorized that is because there is

a focal brain injury that Neurontin can minimize. Off-label research now points

to the probability that Neurontin decreases Substance P activity and its

mechanism may involve activation of the neuronal GABAg1,g2 receptors negatively

coupled to voltage-dependent calcium channels, thereby lessening pain signals to

the brain.

The following web pages are recommended reading:

Dr. Seastrunk's lecture from June 1997

Seastrunk's Patient Handout

1997 & 1998 research abstracts on Neurontin

1999 Neurontin Research Abstracts on Neurontin

Year 2000 Neurontin Research Abstracts on Neurontin

2001 Neurontin Research on Neurontin

The newest Parke- drug insert (identical to your doctor's PDR

information)

Another person's transcript from Seastrunk's 6/97 lecture

Introductions posted to Neurontin-L with permission of the authors

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Neurontin-L:

Since 1998, Neurontin-L, a private email list, has been in operation

specifically for folks using Neurontin for " off-label " purposes. To join, please

write to neurontin-l-request@... with a short explanation of

your interest in joining the group. Please include your first and last name (or

initial).

RESPONSE

If a patient is going to be helped by this drug, there appears to be two types

of " responders. " (1) Some people have an immediate improvement in stamina and a

marked reduction of pain starting Neurontin. (2) Other folks will not obtain

similar results until they reach higher doses. And, unfortunately, there are

people who will not receive any benefit from Neurontin.

KIDNEYS

It is important, since Neurontin is excreted through the kidneys, that your

creatinine level is normal. This is a routine blood level that would have been

drawn along with your usual yearly blood work. Neurontin is not metabolized by

the liver.

Many users have found that hydration is vitally important while using this

drug. A small amount of water retention is normal, especially when ramping up

(increasing) doses. If you find that your rings are tight and/or your toes are

swollen, AND you are drinking less than four quarts (approximately four liters)

of water a day, you may find that increasing your intake of water will help

eliminate any excess fluid unless your doctor has placed you on a water

restriction. However, if you gain over 5-10 pounds, you may temporarily need an

occasional diuretic to help flush out the excess water.

If you find that you are continuing to have worsening water retention, your

doctor needs to be consulted as soon as possible to insure your kidney and

cardiac functions are normal.

BLOOD LEVELS

Over the years, the need for obtaining gabapentin levels have become less

important.

After about two weeks on round-the-clock doses, Neurontin is totally excreted

from the body within 8-9 hours (if there are no kidney problems).

If one is not on round-the-clock doses, Neurontin is totally excreted from the

body in approximately 4 hours.

For optimal dosing, Neurontin should be divided into a four (or more) times a

day frequency to keep a constant blood level. If one is taking Neurontin on a

three (or less) times a day and is experiencing break-through pain, the easiest

experiment (with the doctor's permission) would be to divide the daily dose into

four equal doses to see if that solves the problem.

POTENTIAL DRUG INTERACTIONS

The official Parke- drug insert states that there are no adverse drug

interactions, and, over the years, the members of the Neurontin-L email list

agree with that.

MAGNESIUM

Dr. Seastrunk says that magnesium should not be taken with Neurontin at all

because it competes for the receptors in the brain that Neurontin is attempting

to reach.

However, Parke- and CFS specialists prescribing Neurontin suggest only

that the two drugs be separated by two hours.

Since magnesium does have antacid properties, taking the two together may

immediately interfere with Neurontin being correctly absorbed in the stomach.

This also applies to prescription medication that lessens gastric motility and

acidity as well as all other antacids.

Because magnesium levels are often low in people with CFS and FMS, many of us

feel that it is very important to continue taking magnesium. By scheduling the

magnesium between doses of Neurontin (preferably once a day and as far apart as

possible), hopefully there will be minimum interference with Neurontin.

DOSAGE RAMPING and SIDE EFFECTS

" Ramping up " (increasing the drug) will be an adventure of its own. Dr.

Seastrunk stated that he used twelve different dosing schedules, and you and

your doctor will decide how often and how much your doses will be increased.

Seastrunk's usual ramping up doses were one extra capsule every 1-3 days. Many

of us on Neurontin-L feel that this is the best way to do it. By quickly ramping

up, one will feel the transitory side effects for a shorter period of time.>

There is a new medical study that compared a " slow " increase taking 300mg the

first day, 600mg the second day, and 900mg the third day with a " fast " increase

of starting with 900mg the first day. Their finding was that only dizziness was

more pronounced than those who used the " slow " initiation. That study can be

found in the 2001 Neurontin studies.

Some people have been able to ramp up with little or none of the normal side

effects of dizziness, brainfog, ataxia, or visual problems. However, most of us

have experienced these side effects at various dosages. Some occur over a very

brief time, but others are incapacitated by their severity and by how long they

last. Unfortunately, we can find no way to predict if, when, or how long those

side effects will occur. But we do know that poor hydration and not eating some

protein with your daytime doses will make them worse.

Seastrunk stated that if one feels " drunk " after a dose, then you've taken too

much. He also stated that the side effects will probably not be any worse than

you've already suffered with your CFS/FMS.

If the side effects are troublesome for more than a week or two, some of us

have had success by dropping down the doses (at not more than 400mg a day) to a

point where the side effects disappear. After stabilizing at that lower dose,

some have found that ramping up again will not reproduce those side effects.

Troublesome side effects are probably the main reason for patients and doctors

deciding to greatly decrease or wean off Neurontin. However, encountering

brainfog, the staggering effect, and the sleepiness are now considered to

positive for showing that the doses are appropriate. (In other words, if one

doesn't encounter these side effects when first starting out, the dosage is too

low.)

If you can convince your doctor to allow you to use a rapid increase (one

capsule every 2-3 days) until the ultimate dose intended is reached, you will

find that the side effects will disappear faster. Staying at lower doses (such

as lower than 200mg daily) for weeks at a time and then increasing to higher

doses, leaves the patient at the most problematic doses and increase the

incidence of stopping it because of the side effects seemingly never decrease.

PATIENT ASSISTANCE PROGRAM

Parke- has two Patient Assistance Programs for US citizens who have no

insurance to help with the expenses of this very expensive drug.

Since the criteria for their Patient Assistance Program occasionally changes,

call (908) 725-1247 and select the option to talk directly to a Service

Representative. (Bypass the automated selections!) Among other questions, you

will be asked for the name and address of your doctor. They will mail or fax the

forms that need to be completed to your doctor.

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