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  1. #1


    Anyone heard of this medication for neuropathic pain? I'm not even sure I have neuropathic pain anyways. My pain is some buring in my back and increased tone in my back and legs. What type of symptoms do some of you have that are on neuropathic pain?
    Last edited by bdvaneven; 11-28-2008 at 05:38 PM.

    "God grant us the serenity to accept the things we cannot change, The courage to change the things we can, And the wisdom to know the difference."

    Serenity Prayer

  2. #2
    It is an anti epileptic medication and many of them work for neuropatic pain
    TH 12, 43 years post

  3. #3
    Quote Originally Posted by bdvaneven View Post
    Anyone heard of this medication for neuropathic pain? I'm not even sure I have neuropathic pain anyways. My pain is some buring in my back and increased tone in my back and legs. What type of symptoms do some of you have that are on neuropathic pain?

    "Someone is sticking my big toe in a 20 amp electric socket"
    " my feet are in scalding hot water"
    " I just walked across burning hot coals"
    "someone is driving a red hot 12 inch railroad spike up my a** with a hammer and I can't think straight"

    That is how I would describe it! Pretty darn fun all around.

  4. #4
    "My feet are on fire"
    "I feel like my legs have been roasting over an open fire all day long"
    "I feel like my legs are dangling in a pool of ice water"
    "I have an electrical current crawling randomly around my legs"
    "Someone's stabbing me in the gut with an ice pick"
    "I feel like I'm walking on prickly rocks"
    "I have a permanent wedgie"
    Quote Originally Posted by arndog View Post
    "someone is driving a red hot 12 inch railroad spike up my a** with a hammer and I can't think straight" Jon
    "The truth will set you free. But first, it will piss you off." -Gloria Steinem

  5. #5
    If you snocker senile people, they are less likely to get in trouble (see below),

    Arndog and Danine,

    Congratulations on your descriptions of some of the central pains. I especially liked the ones about "I just walked on hot coals" (although having bathed in coals would be equally applicable except for the fact that "walking" better indicates the DISTAL worsening of central pain) and "electric shock crawling around in my body" Your choice of words is as good as anyone is going to get, very accurate, and will likely be ignored by anyone who thinks pain only comes in the flavor (wavelength and frequency) of ordinary pains.

    Still, I appreciate your repeating it, as there is always the small chance someone will credit it. I know exactly what you are referring to, and you are almost as bad as I am in choosing verbal descriptors your family, your doctor, and those with normal pain will believe. We just as well speak of spirit possession in the New Guinea highlands as to explain CP to people. There is of course the little syringe of capsaicin to provide clues, but it is PhD's, not M.D.s who are foolish enough to try out capsaicin, just to get the idea of novel burning. So far I am not aware of any PhD candidate who chose the anus (to understand the hot poker comment in a prior post) as the injection site, or more particularly, they are not going to inject their entire body, but I suspect they can extrapolate from a millimeter or two on their arm or back. Or can they? If one feels a bit hungry just before mealtime, does that inform of what starvation feels like?


    To cockeyed optimists: Certain pains are easy to identify as neuropathic. The distal burning, and the lancinating (shooting electric pains) have NEVER been felt before, are creepy, and are classic neuropathic pains.

    The dysesthetic burning is utterly novel because it combines other noxious sensations with it, including something like cold, so one cannot describe dysesthesia by saying "if you mix these two pains together, this is what you get". This is possible with colors seen by the eye, and possible with ordinary pains felt by the ordinary body, but it is NOT POSSIBLE to find words of shared human experience for the chemical burn of central pain. It is otherwordly and even the brain knows it is sick, unwell, alien, and associated with damage and disorder.

    Pain normally has meaning, but central pain is about the individual, inside, and is not the result of a disturbance detected by the testing apparatus for pain, but is a substitute pain testing generator which we recognize as never before having been in our bodies. It is, as it were, a crude "bionic" pain testing apparatus, where we cannot make sense of most of it and are creeped out by this THING in our pain system. Do not repeat this to your friends. They will be LESS comprehending, not more. Central pain is to ordinary pain, as fingernails on the blackboard are to music.

    This is not the threshold inquiry however. Peripheral versus Central is the all important consideration. Clinicians have been very slow to get this message when choosing therapeutic regimens. There may be a front door and a back door to the house, but the key to open one lock may have no effect on the other.

    The beginning must be, is this pain of central origin or of peripheral origin. The reason is that medications which treat PERIPHERAL neuropathic pain, are not to be assumed to have ANY effect on pain of CENTRAL origin. Therefore, the beginning should be to determine whether the pain is central or peripheral. As to the burning, Weir Mitchell's test is helpful. In burning pain from touch of peripheral nerve injury, evocation of the pain is IMMEDIATE on being touched. REMEMBER, MITCHELL'S DELAY ONLY TESTS RESPONSE TO LIGHT TOUCH. Light touch is not supposed to hurt. However, light touch is the Devil's goad in central pain. Mitchell's test has no application to testing response to cold, nor to degrees of sharpness. In these two latter sensations, those with CP may respond MORE quickly than those with PNI. If you have sunburn, touch hurts immediately because it is an injury processed by PERIPHERAL nerves. Sunburn is not actually neuropathic, but in conditions like reflex sympathetic dystrophy (which is not any of those three words and so is now called CRPS), the subject does have neuropathic pain in peripheral nerves. Similarly, somone with PNI from total body irradation or even diabetic neuropathy, the category of PNI is usually applied. The problem comes because peripheral injury induces central change (Patrick Wall's principle) so it has become common to refer to this as centralization of pain, which is something different from central pain.

    By comparison, in pain of central origin, there is a 20-30 second DELAY before the burning is evoked or heightened by LIGHT TOUCH. To repeat, Mitchell's delay is a test of response to LIGHT TOUCH. It is a helpful test to differentiate PNI from pain of central origin. The light touch is best done by a piece of newspaper laid on the skin, or by occlusive wrap with anything.

    When it comes to COLD, the latent delay in evocation (eliciting the heightened pain) can be markedly shortened, disappear, or even go the other way, so that neuropathic burning from a blast of cold air, or water on the skin, can be instantaneous and severe. Paradoxically, cold water and cold air may be LESS likely to evoke pain in PNI than in CP.

    It must be born in mind that CRPS can be a very severe disabling condition. Its limitation in area nevertheless makes it second to the suffering experienced in broadly placed central pain. CRPS tends to have fewer types of pain than central pain. For example, not many with CRPS have severe isometric or isotonic pain in muscles (ie. what is termed "kinesthetic dysesthesia"), although what they do have may contribute to shrinkage or atrophy of muscles through reluctance to use the affected part. They are also much less likely to complain of atopoesthesia, while failure to locate the skin surface in central pain is nearly universal.

    The other central pains can be much harder to identify as neuropathic. These may include muscle cramps, pins and needles, pseudo claudication, etc.

    Since most SCI patients have significant mechanical problems, with injury resulting in fusions, operations etc. there is likely to be a great deal of ordinary pain associated. Having central pain does NOT isolate one from having ordinary pain, although there is virtually always some diminution in superficial sensibility, such as response to touch, pressure, sharpness etc. Garden variety pain may be lowered or eliminated in an area which is "ON FIRE" from neuropathic pain. This burning corresponds to neuroinflammation in the dorsal root ganglia occasioned by inflammatory cytokines related to Nerve Growth Factor, Tumor Necrosis Factor, and various concomittants of the pERK group or mitogen activated protein kinase cascade. Anything which gets the TRPV-1 ion channel going. Since PNI also can cause hypersensitization of the dorsal root ganglia, there is a crossover between symptoms of PNI and CP. However, PNI behaves like an injury to a nerve or nerves. CP tends to blanket the body over very wide areas. Hence the severe CP case is likely to be driven nuts by the pain, not that PNI is any picnic.

    Anti epileptics have been used with some success in both types of pain, but when we say "some success", it is probably not stretching it to say that ANYTHING which quiets the central nervous system may help, but it is far from a cure. Even drenched and saturated with anti epileptics, the severe CP case is in hell. He/she just functions better. I remember when the experts were trying things out on me and they had this support team handy and decided to take me as far down with opiates as they could to see at what point the pain relief kicked in. It never did, although I passed out. If IV opiates aren't able to do it, an antiepileptic is not going to do it. Pain meds may help the mechanical type pains of ordinary variety but there is NO well controlled study showing they help fully elaborated central pain.

    I am sorry if my post seems contrary or stubborn, but having damaged my body with huge doses of medicines that JUST HAD to work, I wonder when people will admit that many of these meds do not help and are dangerous when taken at supramaximal doses for long periods of time.

    Another problem with studies is that they talk in unacceptably vague terms. Perhaps this cannot be avoided, but it is almost impossible to find ANY study where the proposed drug did not "benefit" the neuropathic pain. If someone can find a study which failed to show some benefit, would they please post it here. I am thinking that voting for Obama, or McCain, or even praying to the the mystical thing Donald Trump wears on his head will "benefit" neuropathic pain.

    I can also imagine seeing in print a study which indicated "benefit" from any herb sold profitably in health food stores, no matter the type, so long as there was sufficient conviction on the part of the salesperson. The noni plant, usana, xango, asio berry juice, or any antioxidant or any stimulator of the immune system--all of these have not been ruled out as curing central pain. You get the point. If it has not been ruled out, you really ought to give it a try, since a rational person in severe pain, as you claim to have, would not rule out ANYTHING. Maybe at the top of Everest is some subsoil extremophile which contains a helpful substance. What have you got to lose by going for it. Same goes for archaea at the bottom of the Mariannas Trench. or slime in the sewers of Sardinia. Nature, you see, is magical. Since there must be a cure somewhere, there must be a cure everywhere. Yoga, pilates, Tae bo, thighmaster, and other well known diversions of quadriplegics need only be embraced to display their healing power. Pain, you see, is such a trifling matter that it is actually among the easiest of things to treat. Why do people foolishly tolerate CP when any neighbor, family member or inlaw, schoolteacher, minister, massage expert with magic fingers, counselor, crystal seller, magnet marketer, or injector of hypertonic glucose into the joints can puff it away. This whole site is just so redundant. As to those little mice who chew off their legs (autotomy) when given Central Pain, just to try to get rid of the agony, every one knows that what is true for mice is not necessarily true for humans.

    However, what does that term "benefit" mean? Nothing. "Benefit" is not a number and never will be. If you can't graph it, stuff it.

    These studies are absolutely pathetic in their failure to establish that the pain was actually neuropathic (ie the critera used), which type of neuropathic pain, and HOW MUCH benefit was conferred in WHICH pain. This is not science, it is the antithesis of it. I am disappointed editors allow the stuff in print. The mere fact someone has CP does NOT mean a given pain is necessarily neuropathic nor that the pain which was "benefitted" was a neuropathic pain. One must be specific before publishing.

    I don't care if the trial drug is alfalfa, orange julius, limburger cheese, or fermented decomposed 1040 forms, the study will almost certainly show "benefit". It will also fail to show what the word "benefit" means, nor how the "analog pain scale" was explained, controlled for, not who did it and how. I have seen a stream of literature of people's brains being shocked, stimulated, extirpated, each of which in turn have shown benefit without even a paeon to what proof they had the pain was neuropathic , nor explaining how they concluded that the pain they "relieved" or "benefitted" was indeed neuropathic pain, nor how long the pain relief lasted. They do not indicate how much brain was removed, how much current was applied, how they knew where they were in the correct nucleus of the thalamus nor anything resembling a proper report. The word "benefit" should be banned from pain therapy studies and some sort of functional test substituted, for example, "prior to removing part of the parietal cortex, the patient could not wear clothing below the ankles, nor tolerate shoes. After the surgery, shoes and socks could be worn for two hours." The absence of such functional correlates makes me suspect the clinicians simply do not understand what they are treating.

    Some pharmacologic expositions on the topic do not even indicate the route of administration, the length of follow up, and they also lack functional comments. "Benefit" is an all purpose, all size fits one result, currently acceptable in the literature without dimension or quantification of any kind.

    For those of us who have taken enough antiepileptics to crystallize out chunks in our urine, only find NO BENEFIT for the burning, we have to sort of get edgy if claims are made without DATA.

    Treatment of central pain is anecdotal. Anecdotal is not scientific. I am waiting for NIH or the Cochrane database to show that anything works. Neurontin has been shown to help peripheral nerve injury pain. This says NOTHING about CENTRAL pain. I have probably taken as high of doses of neurontin as anyone in the country, and I regret my gullibility. Lamictal is once again enjoying an explosion in prescription for everything from ADHD to Autism to any number of other diseases. Let's not get misled by sloppy work, poorly reported, tainted by lack of imagination (lack of capsaicin).

    Oxycarbazapine was shown in a pilot study to benefit hypersexuality in Alzheimer's. Why am I thinking it isn't the final frontier for central pain? On the other hand, it shows oxycarbazepine is a "helping" drug, and help is what we need, so why not show our good faith by buying a lot of anything that helps anything. It can't hurt to try.

    The world is so logical. The typical person with a serious disease bypasses the medical experts and goes right to the neighbors, especially the ones with no background in the biological sciences. And as my neighbor said, "Have you tried......" This neighbor does not give advice for cancer, gallbladder, diabetes, pregnancy, but she knows all about central pain without even knowing what it is.

    My male neighbor, a religious figure, is worse, "Hey, you talk about pain. Let me tell you about pain. Have you ever passed a stone? Now THERE is pain. I think you should try praying.... (I casually slip out a vial of capsaicin) Hey, What is that stuff you are injecting into my arm? OW, are you nuts? That really hurts!" I answer, "I know CP is not a theological disease, but I pray God to help the NIH researchers, every day. Will you pray with me?" "Not while my arm is hurting like this!!"
    Last edited by dejerine; 11-30-2008 at 06:39 PM.

  6. #6
    I don't think I have neuropathic pain. Maybe I've been doing a piss pour job explaining my symptoms to my doctor. I don't have any electrical shocks, no buring legs, or any symptoms mentioned. I do occasionally have some burning in my back but it's pretty much extreme muscle stiffness/tone in my lower extremities and cold feet. Tone in my pectorals and neck stiffness. I do have a Metronic baclofin/morphine pump that I think helps out the tone/spasicity. I've put on all the neuropathic pain medications like Neurotin and Lyrica but none have helped. Why would my doctor think I have neuropathic pain? I just don't get it!
    Last edited by bdvaneven; 11-29-2008 at 09:44 AM.

    "God grant us the serenity to accept the things we cannot change, The courage to change the things we can, And the wisdom to know the difference."

    Serenity Prayer

  7. #7
    Senior Member alan's Avatar
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    Jul 2001
    Baltimore, MD
    I have most of the sensations of central pain, plus others (like scapulas and vertebrae sticking way out through skin) i haven't read about.

    Proofread carefully to see if you any words out.

  8. #8
    Quote Originally Posted by bdvaneven View Post
    I don't think I have neuropathic pain.
    Neuro pain is weird, there's no simple and concise way to either determine if you have it or, if you have it, to describe it to someone else.

    Try reading these pages on my website to see if you find anything that sounds familiar.

  9. #9
    David Berg - I just went to your website. Wow, what a great explanation you have there. The description page is vividly chilling - great descriptions.
    It is so true that an able bodied MD can have no concept of the magnitude of this NP and CP unless they really good listeners.
    thanks for such a good website...

  10. #10
    Quote Originally Posted by arndog View Post
    "Someone is sticking my big toe in a 20 amp electric socket"
    " my feet are in scalding hot water"
    " I just walked across burning hot coals"
    "someone is driving a red hot 12 inch railroad spike up my a** with a hammer and I can't think straight"

    That is how I would describe it! Pretty darn fun all around.
    Am I wrong in saying you are physician? I thought I saw that on a tread. Just curious, what type of physician are you, if you are?

    "God grant us the serenity to accept the things we cannot change, The courage to change the things we can, And the wisdom to know the difference."

    Serenity Prayer

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