I have been doing some reading in Wikipedia on Modafinil (which, we are told is approved by the FDA for the treatment of EDS in narcolepsy, as opposed to methamphetamine which is not, though we know it is very efficacious for the treatment of EDS) and there is no clear statement anywhere as to modafinal’s effectiveness. The closest one gets to an affirmation is in Stanford’s website which accords it with a “long duration of action”. However, from the blogs I have read by narcoleptics I have the distinct impression Modafinil is used mostly by persons who have not contracted narcolepsy in its most severe form, as I did. For instance, I recently read a blog in which the author who was fulsome in his praise of Modafinil suffered from only the mildest form of cataplexy lasting for seconds with only slight feelings of weakness and limp muscles but without the danger of total body collapse. It seems likely too in his case that the severity of his EDS was somewhat attenuated.
Interestingly, Wikipedia in its sub-article on narcolepsy lists for the treatment of EDS the amphetamines and methamphetamines before adding “or modafinil a new stimulant with a different pharmacological mechanism”. Why is the least efficacious treatment the one that is approved by the FDA for narcolepsy when the obviously most efficacious treatment is not only disapproved but given a scheduled II status and banned? Not that I doubt that amphetamines and methamphetamines are capable of providing highs to persons who do not suffer from narcolepsy and to which they may become addicted, as also to alcohol, cigarettes, and marijuana, but like marijuana I believe its alleged propensity for creating addiction is grossly exaggerated in the case of methamphetamine.
Having brought up the subject of marijuana let me step onto my soapbox and express my opinion on the subject as it relates to human rights. Let me first make it clear that except for one “experiment” during my youth I do not use Ganja (marijuana) in any form because its use and possession is illegal in Jamaica. Whatever steps a take to combat narcolepsy my legal practice and my acceptance of the legal system in which I practise, I have made it my self-imposed duty to abide by my country’ laws. That being said, as a human rights advocate it is my duty to speak out against laws whose obvious effects and possible intended design have an inequitable impact, especially on the poor.
Despite its illegality, marijuana, is freely consumed by the upper echelons of society in both England and the USA (ask any president) and I have been in very elite circles in England in which marijuana was consumed as a matter of course. It is only the poor and man on the street who suffer the harsh boot of the criminal law for its use. In the case of methamphetamine we begin see a similar pattern developing in which the FDA and other official anti-drug abuse agencies continue to wildly exaggerate the harmful effects of these drugs and bring the full force of the law down on the head of the man on the street on the pretext of saving him from himself. Leaving aside the so-called hard drugs, such as cocaine and heroin, which definitely appear to have the capacity to create powerful addiction with extreme withdrawal symptoms it is hard to resist the conclusion that the vicious assault by these official agencies on marijuana and methamphetamine stem from the fact that that they are cheap and therefore easily available to the common man; which raises the question. Why? If one cuts through the claptrap one is faced with the glaring question - why is officialdom so determined to stamp out a drug which it describes as “producing pleasurable effects, including an enhanced sense of self-confidence and energy… feelings of peacefulness, acceptance and empathy” and to the point of denying its availability to others for whom its use is not just beneficial but borders on the essential? It’s about time that society challenged the arbitrary and irrational use of their extraordinary powers by these bodies.
Tuesday, August 18, 2009
Sunday, August 2, 2009
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.
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.
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