Treatment Research (Part 2)

(Apologies for the gap in posting… an unfortunate family event that required Andrew’s time)

In 1997 I learned about the research that was being done to produce Provigil (Modafinil) and I wrote to the Center for Narcolepsy Research, Chicago and the Center for Narcolepsy, Stanford University, setting out my experience up to that time. I received a reply from the center in Chicago congratulating me on how well I appeared to be coping and informing me that it was expected that Modafinil (Provigil) would be approved for prescription use in April 1998. No further communication was encouraged. Stanford University did not reply.

In around the year 1999 the comment of Stanford University’s leaflet on medication in regard to Desoxyn (Methamphetamine-HC1) in relation to EDS caught my attention. It stated “Better distribution in the brain vs. the periphery, more potent and effective than amphetamine, used in the U.S.”). The words “used in the U.S.” stood out. This couldn’t be correct, I thought. Isn’t Methamphetamine the dreaded drug that the DEA calls “Ecstasy” and millions of US $ is being spent daily to stamp it out? Still, I could hardly ignore the very positive affirmation in the Stanford website and I set out to find out how Desoxyn may be obtained. My initial experience was a blank wall; no one in Jamaica had ever heard of Desoxyn and even though one would occasionally see newspaper articles of arrests for possession of “Ecstasy” I was not interested in using a drug that was on the market illegally especially as I had learned that “Ecstasy” was easily homemade and might contain substances which were not in the recognized production by Abbott Labs.

My next step was to enlist the support of my doctor and write the Chief Medical Officer to grant me a permit to import limited amounts of Desoxyn and I was told to go through one the main importing companies. I made contact with the chief pharmacist of this company and after making enquiries she came back with news that the US government will not allow the exportation of Desoxyn to Jamaica as it was listed as Schedule II drug , thereby having “a high potential for abuse” which may lead to “leading to severe psychological or physical dependence”.

Despite this discouragement I solicited some assistance from friends and made contact with a doctor in the US who was prepared to act on the strength of the prescription of the local doctor, and by these means I obtained supplies of Desoxyn which provided me with moderate use of it for a three month period. My experience with Desoxyn I can say with complete certainty bore out Stanford University’s description that it was “more potent and effective than amphetamine”, and then some. In my case, it was significantly more effective than either Dexedrine or Ritalin for EDS, and I had no adverse reaction to its use. I especially had no ‘severe psychological or physical dependence’ at all, nor any high. Of course, it may be that, as a narcoleptic, I am immune from becoming dependent, but if this is so one would expect to see an acknowledgement of this somewhere and I haven’t. In fact, in my research on the Internet I have seen in the publication by Wikipedia that Abbott Labs applied for the approval of Desoxyn for various uses, including narcolepsy, since 1944 but after initial approval this was eventually withdrawn for all but ADHD and obesity “although the drug is clinically established as effective in the treatment of narcolepsy”. The article by Wikipedia further goes on to say, “There is no evidence to suggest that dextromethamphetamine (Desoxyn) possesses greater liability of abuse, addiction or tolerance than other amphetamines.” Incidentally, after the second receipt of Desoxyn from the doctor in the US he frankly informed me that he could not provide me with more because he might be subjected to investigation. Thus ended my brief sojourn with Desoxyn. I am, however, left to wonder whether a doctor with narcoleptic patient in the USA would allow the most efficacious treatment to be denied his patient, especially as a leading authority such as Stanford University, despite its disclaimer has virtually recommended it in very powerful terms. I rather suspect that a there is an escape clause which allows for the filling of prescriptions if it emanates from an accepted quarter despite the fact that the NIDA on its home page on methamphetamine, states, contrary to Wikipedia, that because of its extreme addictiveness and potential for abuse it is available “only through a prescription that cannot be refilled”. (Hence the trepidation of the doctor who wrote my initial and only prescription for Desoxyn ).

I have not tried Modafinil (Provigil). For one thing the pharmacies in Jamaica at which I have made enquiries have never heard of it. (As I have stated, I know of only one Neurologist in Jamaica who has any familiarity with narcolepsy). For another, a number of the reports I have seen on the internet have made references to its expense and although I have not been able to compare its cost with those of the amphetamines I confess that my natural cynicism tends in a certain direction, especially as the methamphetamine which appears on the streets seems to be fairly cheap. Perhaps, the main reason I have not gone all out at my age to experience Modafinil is that the Stanford web site describes it as having a lower potency than amphetamines which have sustained me for nearly sixty years with virtually no ill effects. I can’t help pondering, though, as to what the possibilities might have been for me if Desoxyn had been made available for me at an early stage in the onset of the disease.