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?

Dear Julie
I do hope you found some relief from the pain and were able to sleep

Cheri

Julie:

Since I can't advocate drugs for anyone (oh what the hell, that's exactly what I'm going to do, you can take it or not), here's what Alan does.

He has neuropathy that worsens when he lies down. His doctor (our beloved Dr. Fred) prescribed Xanax (he takes the generic form, which is alprazolam).

He takes one pill before retiring. He also takes Melatonin. For some reason, the melatonin lets him sleep THROUGH THE NIGHT!!! The alprazolam relaxes him enough so he falls asleep. And the fact that I give him a full body massage (which I believe allows the endorphins to kick in, and that can't hurt right?) Well, all this, and especially if the weather cooperates, well Alan gets up and says "wow, I am well rested".

So check with your doctor, maybe he can prescribe something to sleep, whether it's what Alan takes or perhaps an Ambien. I do not know your nervous system, or what you can tolerate.

This is only a suggestion, okay? But people need to sleep, or they can't function properly the next day. I gave up trying to sleep on my own years ago. Too much stress in my life, so I take an alprazolam at night and I have sweet dreams and I apologize to no one. We need to do what we need to do.

I also have diabetic neuropathy, but it's no where near what Alan goes through. And I can lie down without the burning.

But as soon as lies down, he starts shaking his legs because that's when the feet start burning, but then the alprazolam kicks in and shortly after, he's in dreamland.

I wish you well.

Melody

Julie K - there are dozens of meds that are being used to help with PN pain. It takes time to find one or a combination of meds that might help. The biggest problem is finding a physician that knows what the heck s/he is doing AND one that is willing to work with you. Most doctors simply do not want to deal with patients in chronic moderate to severe pain.

Having said that - they are out there. More and more physicians are recognizing that chronic pain is a legitimate medical condition and that the patient suffering from this malady is entitled to the best the medical profession has to offer. If you are not pleased with your present doctor ask him for a referrel to an experienced pain specialist - preferably one that deals with neuropathic pain. Check out whatever resources you have in your local area - the chances are good that if you live in or near a metropolitan area that you will be able to find help. And, here is a site that may be useful:
http://www.clevelandclinic.org/healt...12079&src=news

Another problem is the fact there have been doctors arrested and convicted of overprescriping pain meds, or.....whatever. This has scared the bejeebers out of most physicians and as a result they don't even want to see a patient with pain. Despite this, there are doctors who will care for you and will do so while obeying all the rules...including the best of all rules: common sense!

Good treatment IS available though it may take some effort on your part. I realize what I have said is general rather than specific but I hope it will encourage you to seek out a good physician and not settle for mediocrity....and NEVER, EVER give up! Good luck and keep us informed.

Before this issue I could never sleep and have been on every med for that. Now I'm not taking cause I want to focus on the nerve meds. I have been on trazedone and that did the best for me but after awhile I needed so much and then had side effects. My mom is on I think ativan and she has a hard time sleeping. I have tried ambien which did nothing. I know a lot of people have good luck with xanax or other anxiety meds. They obviously don't take the pain away but maybe a combo.Even when I was on zoloft/remeron one helped in the past.Can you talk to your docs again and ask about other possibles?The thing with meds is and its so frustrating is what works for one may not for another. Good luck and I hope you got to sleep or a nap.

Thank you people. I was having a moment. I have a really good doctor. I just have to give this medication time to work. It's only been three weeks. The risk for developing a rash is high for me. That is why we have to go slow with it to give my body time to adjust. All I can say is it better be worth it.

My pain and burning is in my legs, knees, feet, hands and arms. Yesterday was severe enough to put me in bed in the afternoon. But never could go to sleep. Sometimes sleeping can help you escape for a while.

Dan, Thanks for telling me to never give up. Sometimes I feel like it, but I am strong-willed when I put my mind to it. I know you all understand. Thanks for being there and I am so glad Bob B. told me about this site.

I've been using them lately through our heat wave here in California and it's getting me through the burning so I can at least concentrate on a movie for a while.

I put the ice packs on a pillow, a dishtowel on top of the ice packs, and my feet on the ice packs. It numbs the nerves enough to give me some temporary relief. At least it works for naps and short term relaxation! If you don't have ice packs, bags of frozen vegetables, or whatever is in your freezer will work!

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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WOW David. Great stuff. I read the other tread too. I will see what I can do to put some of this into action. Some of it I already do. Thanks for the information.

Currently, when my feet do keep me awake I take a 50mg Tramadol and a 10mg Atarax. That's on top of 4 regular Ibuprofen which is prescription strength. I've also found if I go to bed before my feet begin to bother me I don't need any meds at all. For me that means going to bed around 11:00 at the latest. Once I'm asleep my feet are fine and I have no pain if I wake in the middle of the night and in the morning.

I have no idea why it hurts only at night. I so wish I did.