On the one hand, we have conducted a crusade to ask doctors to stop kidding themselves that opiates stop central pain. On the other hand, we are poised on the threshold of new drugs for nerve injury pain which block the N-type Calcium channels, with prices at around $3000.00 per dose (eg. Prialt or Ziconotide), which do appear able to treat burning dysesthesia. (see below for dysesthesias which may not be burning).
Since the government has not invested the funds to find cures for severe nerve injury pain, a case can be made for a special grant to help cover the costs of the new drugs, since all the recipients are severely disabled. Central Pain always involves an accompanying injury to the central nervous system, which by itself would usually be considered disabling. All (one hundred percent) in the survey agree that severe central pain which includes burning dysesthesia is MORE disabling than any paralysis. The prior sentence bears reflection.
By comparison to the victims of Katrina, frankly, nearly all the flood victims remained able bodied, even if homeless or displaced. There are more in pain than were made homeless by Katrina, which has received about 80 billion in aid. In pain is a geniune need. Estimates of the displaced by Katrina range around 1.5 million. Permanently homeless estimates have been placed at around 200,000. The amount of fraud in FEMA grants ranges around 1.5 billion. One and a half billion is more money than NIH/NIDCR could ever hope for to fund their studies into basic pain mechanisms. That amount almost surely would have produced many cures. More than one million people suffer from nerve injury pain, with the figure reaching five million, if we include diabetic neuropathy. The severe cases are as disabled as anyone can be, with nearly all suffering both motor and sensory impairment.
Cut off my arms and legs and I can still think. Sever my cord and a machine can still breathe for me, even if it has to be run by a motor. However, destroy my mind with severe pain, and there is nothing to be done. Heavy sedation heavily sedates, but that is NOT pain relief. Although thankfully, the pains which run in the posterior columns, also known as lemniscal pains, are usually able to be treated, severe burning dysesthesia almost never responds.
The National Institutes of Health has confirmed that there is NO satisfactory treatment for dysesthetic burning, and has suggested the only approach is to keep life as free of stress as possible. Realistically, that should involve some help. Anyone watching the films of Christopher Reeve on maintenance knows there was massive expense, which would, for the normal person, be impossible to achieve. Generously, Reeve funded research into central pain, although he himself did not have it. This is almost beyond the word generous, and makes us think of godly attributes. He was a Superman for caring. We include a special tribute to his wife Dana, for sticking with him. She was his right arm, and they made a difference. His doctor, Wise Young, at Rutgers, helped raise consciousness in the entire nation about the needs of the spinal cord injured.
There are, happily, sporadic reports of people with “burning pain” who have found an effective medication. We have investigated some of these and are not convinced these cases had burning dysesthesia, although they surely had dysesthesia. How can this be? Those who found an effective remedy in conventional medication describe their burning in terms more akin to lancinating pain. For example, they may speak of “electric burning”, “tingling burning”, “buzzing burning” or even, simply, “heat”. Those with burning dysesthesia of the type carried in the anterior cord use terms more bizarre, and always as if there is acid or a chemical agent burning their flesh. We know our vocabulary is imprecise and deficient but will have to wait until blocking agents help us sort it out. Even ion channels are sometimes differentiated simply by which medication is capable of blocking them, as well as by their location.
We are not sure about the distinction of course (we have only verbal descriptors to go on), and the sorting out will probably be done eventually by the response to medication. If we know one medicine attacks at one spot and another at a different spot, that MAY be the best way to classify, more or less similar to the way ion channels are classified, observationally.
The new N-type calcium channel blockers are so expensive, and appear able to treat burning dysesthesia if the manufacturer’s claims hold up. The problem is cost. Each dose is 3000 dollars and the pump to administer it may run from fifty thousand for installation up to one hundred thousand. Troubling reports of vanishing efficacy after about three years make it uncertain how long the medication will work. Pumps clog and may have a lifespan of about six months to four years. All of this makes the treatment very expensive.
Surely the government can find as much real need among the million or so who suffer severe nerve injury pain, whether central (about 100,000 according to Bonica) or peripheral (about five million) to consider helping out with the expense. The real help would be to fund NIH adequately so oral N-type blockers begin to be made. That would be much cheaper. But in the face of their neglect, on an interim basis, the government should be willing to measure the most severe need, and administer help accordingly.