neuropathy and narcolepsy?

[Guest guest]

Hi Debbie,

Peripheral neuropathy, continued:

I did a year on Neurontin therapy. Didn't do much for my pain, I was even up to 1800mg + a day... but it decreased my other neurological symptoms from the endocrine disease. But after a year, I noticed it was actually making me twitch

worse so I discontinued it. Now I take Elavil (Amiltryptaline) 100-150 mg every night, its an anti-depressant geared

for chronic pain, bladder spasms, and insomnia.

Helps a bit. My neuralgia is stubborn. Nothing seems to work consistently for very long so I rotate my therapies. Celebrex, Vioxx, Toradol, Naprosyn, etc. I hate most of those meds, they upset my stomach but I can't limp around all day long in pain either.

But I do swear by my B12 shots. I am almost tempted to start taking them once a week as a trial because I seem to get a lot of relief from the shot. (Placebo effect?) But it usually only lasts about a week to 10 days. I have less burning, cramping pain in my extremeties, calves, etc. Less stiffness in my hands in the a.m. and way more energy!

I will probably start my own clinical trial. :-)

To Tom-the-sleepy,

You might consider this too! I have noticed several posters saying the LDN caused them to feel more sleepy

for a few days to a few months. Boost your B vits for extra energy (but take them early in the day or they can keep you up at night) and add some high-dose C to bowel tolerance (liquid form such as Alacer Emergen-C is good brand)...and extra selenium. That is just my humble opinion, part of my regimen. I have certifications in wellness consultation in NY state- haven't practiced on anyone but myself in about 7 yrs. but if anyone has questions about supplements I will be happy to answer if I can.

Also consider adrenal function as a source of your fatigue. You could request a cortisol test or even an ACTH stim test

to check for Hypoadrenia but most endocrinologists will scoff at you if you suggest you have a sub-clinical (borderline)

case. A good primary care doc might test you if you have a good relationship.

I have found a product called Moducare to be very effective. In general it is the one supplement

that seems to be fairly consistent at increasing my energy. It can be purchased at Whole Foods or another

well-stocked supplement shop. Or you can look it up on the web to see if anyone is selling it.

Its made by Thorne Research Laboratories. Product name: Moducare Sterinol Complex.

It is hypoallergenic, comes in a bottle of 90 caps which is a 30 day supply.

The dose is 1 capsule on an empty stomach 3 times a day. Usually about an hour before a meal is the best time to take it.

And it is a product of Canada! :-)

If you have trouble locating it then email personally. I have a cousin who is a pharmacologist and he orders some of

my supplements for me and my mom (who is a cancer patient) to help lower our costs. We just pay wholesale plus shipping. I have three extra bottle of Moducare. If you want to give it a try contact me and we can arrange a paypal trans. and I'll ship it to you. I do this for my Thyroid support group- there are about 6 of us on this product. I don't make a cent off

the transaction. The Moducare retails here in Washington around $34-35 a bottle. I can offer it for $19.50 a bottle.