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Old 06-18-2007, 01:52 PM
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Join Date: Aug 2006
Location: San Diego
Posts: 365
15 yr Member
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Originally Posted by Julie K View Post
It's 3am and the pain just won't calm down. I wish my doctor's would stop playing around with my medications and just give me something that really works. I am on a low dosage of Lamictal working on tirating up and I have tylanol 3 to help. But it's not working right now. I have been on Neurontin and Tegretol and they didn't work either. What works for all of you?
I don't think that there are any medications or combinations that give total pain relief, and you have to consider side effects. The longer you take a drug or drugs and the higher the dosage, the worse the side effects.

Here's what has worked for me. First, I follow the program on page 2 of the Stickies section (items #18-20 at http://neurotalk.psychcentral.com/sh...p?t=177&page=2 ). But years ago before putting together a program like that, some people in the old, old Massachusetts General Hospital forum had good relief with an electrical stimulation unit, the Rebuilder ( www.rebuildermedical.com ). The unit is overpriced by a lot, but it really works. I have the expensive one, which cost $300 about 8 years ago. It has been dependable since then. The company gives a 30 day satisfaction guarantee, which they honored promptly for several people over the years. That's the only reason I tried it, i.e. nothing to loose but some time and hassle.

When I started with the Rebuilder, severe aching and stabbing pains and severe skin oversensitivity kept me up nights. I started out using the Rebuilder twice a day, and started getting pain relief and sleeping most of the night after about three weeks. I kept the unit, and switched to once a day for couple of years. Now I use it once a week or so, except on vacations where I use it daily because of all the walking. The pain relief for me is dramatic now that some healing has taken place.

Both animal and clinical research supports healing and pain relief from nerve pain (such as PN) through the use of any low level electrical therapy. Other pulsed electrical units are available on the internet at a much lower price ( ex. Dynatronics STS, http://www.medicalproductsonline.org...ential-if.html , http://www.source1medical.com/s.nl/it.A/id.1513/.f ). This google search will get you started if you care to research the subject: http://www.google.com/search?hl=en&s...y+&btnG=Search and google scholor at http://scholar.google.com/scholar?um...0neuropathy%20 .

If you try other than the Rebuilder, look for a unit that allows you to set the pulse rate at between 7 and 8 / second. Interferential units are better than TENS (transdermal electro nerve stimulation) or EMS (electro muscular stimulation) because the interferential pulse gets much deeper than TENS or EMS.

Whatever unit you try, follow these procedures. 1) Use a divided water bath with Epsom salts rather than contact pads on the skin. That gives better contact, stimulation of a wide area, and the Epsom salts (magnesium sulphate) directly calm the nerves. You can get the footbath from Rebuilder Medical (click on icon below). On vacation, I just buy two plastic shoe boxes and put electrolyte solution in both. 2) Set the level to where you can feel the pulse but it doesn't hurt. If foot or leg muscles twitch, lower the level. 3) If you buy the Rebuilder, get electrode pad replacements, electrode paste, electrolyte (Epsom salts), skin cream, supplements on the web or elsewhere. Rebuilder supplies are very expensive. 4) Water should be from cool to warm, NOT HOT. Heat usually makes our PN worse, cool is soothing. I usually use warm water, but used to use cool water when my feet were on fire.

The pulsed stimulation helps restore nerve synapses and establishes an orderly response in the spinal cord and brain to the goofy stimuli from your feet. The process takes a few weeks up to a couple of months to progress where you notice the difference, so be patient. Once the electrostimulation starts working, improvement and pain relief becomes more rapid.

Doctors are trained to use medicine and surgery. Surgery isn't appropriate for PN, so doctors prescribe drugs, even though they only work so-so. Doctors aren't very successful with chronic diseases like PN, that's why the disease are chronic ( duh!). Dr. Andrew Weil in "Spontaneous Healing" said that there were some shared characteristics of people who healed from "incurable" chronic diseases like PN. 1. They kept looking for a cure and things that helped and never gave up. 2. They were willing to try different things, and keep trying. 3. They never accepted negativity from medical personal or other people.

Along these lines, I urge you to don't stop with what any doctor tells you but to keep on looking and learning, keep trying different things, have faith that relief and healing is possible, and never give up.
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The pain is so bad I can't sleep.-footbath-jpg  
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David - Idiopathic polyneuropathy since 1993
"If you trust Google more than your doctor, than maybe it's time to switch doctors" Jadelr and Cristina Cordova, "Chasing Windmills"
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