Tuesday, August 18, 2009

Treatment Research (Part 3)

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.

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.

Sunday, July 19, 2009

Treatment Research (Part 1)

To return to this matter of medication I had stated that the switch to Ritalin from Dexedrine was unremarkable in relation to EDS. On the other hand the effect on my Cataplexy of the switch to Imipramine was largely negative, in that it was far less effective in this regard than Dexedrine with the result that my cataplectic attacks continued unabated, if not worse. The significance of this will be appreciated when I explain that the cataplectic attacks are by far the most frightening aspect of Narcolepsy and even up to now the symptom I dread most. To elaborate; a cataplexy is a reaction to any emotion - anger, amusement or some other vague, undefined emotional response - which causes all the voluntary muscles of the body to go limp, including even the eyelids, so that the narcoleptic is unable to stand or hold anything and if there is no one around or something to lean on he is in danger of falling in an uncontrolled way and seriously hurting himself, especially his or her head. On many occasions I have had attacks when there is no one around and I have had to spend the next 10 or 20 minutes desperately trying to hang on to a counter or a wall to prevent my knees from buckling or to retain my balance. In such situations the tension has at times been so great that I will develop searing headaches, causing my head to feel as if my brain was on fire. The fear in all of these situations is that of hitting my head when I fall, and although I have managed to avoid the dreaded circumstance coming to pass for most of my life, within the last 5 or 6 years I have had on two occasions fallen and struck my forehead and had to receive stitches. I should also point out that, frequently, during my cataplexy I hallucinate that I am in a situation in which my life is being threatened and I am calling for help to someone who is not really where he seems to be in my hallucination, nor is my voice making the sound which I think it is. However, as I have grown older the life-threatening situations have gradually come to be replaced though not entirely, by socially embarrassing situations, such as the fact that I may hallucinate that there is a massive crowd present when I am experiencing my cataplexy although there is no one present. On the other hand, I have had an attack while out at a public occasion and although fortunate to be in a seated position, I had an hallucination of being attacked and, as a result, kicked wildly at concerned friends who approached me to enquire as to my well-being.

Not knowing any better, I was forced to endure Imipramine (75mg daily) for the next 12-15 years until, becoming somewhat computer literate in the late 90s, I came across Stanford University’s Website Center for Narcolepsy and in particular, its brief analysis of Narcolepsy medications. In there I saw that the website described Anafranil (Clomipramine) in relation to the treatment of Cataplexy as “Very effective, mostly used in Europe”, whereas, of Imipramine, it simply stated “Anticholinergic effects”(which I gathered suggested dry mouths and blurred vision). Thereupon, I resolved that I was going to try using Anafranil instead of Imipramine and set about persuading my doctor to switch to Anafranil. No doubt with a little research of his own, he realized that there was some point to my efforts and he switched me to three x 25mg tablets of Anafranil daily. The difference in the frequency and severity of cataplectic attacks was dramatic and ever since then, I have been on Anafranil together with Ritalin. A word of caution, however, is called for in the use of Anafranil. One of the effects of this drug is to prolong the erection of the male. I am not aware that it assists in enabling an erection but I know that it retards the advent of a climax in a man and I imagine that an overdose could cause very painful and embarrassing circumstances if not worse. Indeed, I am convinced that many men in pornographic movies use Anafranil to enable them to perform in those movies. My very moderate lifestyle has never created any situation in which I was tempted to take an overdose of Anafranil.

Saturday, July 11, 2009

Professional Life (Part 1)

Upon my return to Jamaica in 1961 my family doctor who administered the medication insisted that I go to see the head of the Neurological Department of the University Hospital but the only direction I was given was to continue with the medication(Dexedrine) I was taking, which I did. Nothing changed in respect of my medication for more than twenty years until the early eighties when the then acting head of the department looked in a text book and advised that the current medication which was being used for EDS was Ritalin (Methylphenidate) and the medication for Cataplexy was Imipramine (Tofranil). As a result my doctor, on his instructions, switched my medication to Ritalin (5 x 10 mg tablets daily) and Imipramine (3 x 25 mgs tablets daily). Quite frankly, there was hardly a noticeable difference between the effect on my EDS of Ritalin and Dexedrine and I simply continued the use of Ritalin because it was the recommended medication, and I had been hearing rumblings about the abuse of dextroamphetamine tablets especially by college students. In fact, even the “Prescribing Information” put out by the manufacturers (SK&F) contained phrases like “Amphetamines have been extensively abused", "Tolerance, extreme psychological dependence, and severe social disability have occurred", "Manifestations of chronic intoxication with amphetamines include severe dermatoses, marked insomnia, irritability, hyperactivity and personality changes.”

As I have said before, in the more than twenty years that I have used Dexedrine, literally every day, there has not been the slightest hint of any psychological dependence nor has there been any urge at all to increase the prescribed dosages of medication. Of course I am not in a position to say whether the fact that I am a narcoleptic makes me less liable to forming a dependence on amphetamines than normal persons and in fact I have heard it suggested that narcoleptics have a “paradoxical” reaction to such drugs but I cannot say with what authority such a suggestion is made. What I can say without any doubt is that I was, and still am, liable to forget to take my medication every day if I did not work out a system to ensure that I always had some spare tablets on my person in case I had forgotten to take the prescribed medication when I should.

In regard to my profession, I established private “digs” and went into private practice as a criminal defense attorney from time to time in association with other attorneys, without revealing, except in the case of close friends. I managed to make adjustments in relation to my napping practices and intake of medication so as to be able to practice in the Courts reasonably successfully. One thing that I had become aware of from I was in high school but which came home to me very sharply early in my practice was the fact of my poor memory for details and that it required that I put in twice as much work in order to master the facts and the law in each case. It also meant that where the citing of authorities were necessary in any case I could not depend upon my previously acquired knowledge of these authorities except as to the fact of their existence and I had to repeat earlier research in order to rely on it again.

In addition to my private practice I, and a number of other persons, especially lawyers, who were aware of a tremendous amount of social and economic injustice in the Jamaican society which led to exceptional civil and human rights abuses especially by the police, got together in 1968 and formed the Jamaican Council for Human Rights, dedicated to fighting against the growing civil rights abuses which were being practiced. Along with the creation of the JCHR I initiated the practiced of filing civil actions against not only against the security personnel who had committed the civil or human rights abuse but also against the state itself, on the principle that the policeman was, at the time acting as the servant or agent of the state. The JCHR has had some significant success in raising public awareness of the prevalence of civil rights abuses by the police, it has also succeeded in getting legislation introduced to curb the practice of wanton police abuses and has by its militance succeeded in preventing the exercise of capital punishment since 1983 until the date hereof. However, further elaboration of my legal practice and related matters must be reserved for another time and subject matter.

Friday, June 26, 2009

My School Years - College (Part 2)

Studying was, of course, a special problem. Thanks to the medication I was able to establish a regime in which I would nap for, say twenty minutes, and then put in about an hour of study. I must emphasize that this was only possible because of the Dexedrine I was taking, not necessarily in accordance with the prescribed amounts. Nevertheless no amount of medication could get me to remember the names of cases and I had to depend on my ability to recall and recite the related principle. This is still the case and during my active practice I had it posed a particular problem especially when I appeared before the Court of Appeal. Going to lectures was pretty much a waste of time as I couldn’t keep my eyes open for longer than five or ten minutes during each lecture. In truth the lectures themselves were not very helpful as they were often behind where the student needed to be and before long I abandoned them. Fortunately, I was in a group of Jamaicans most of whom were excellent scholars and who appreciated my difficulties in studying and extended themselves to help me to keep up.

During the exams I managed to keep awake for most of the time by taking additional medication before each paper and to my surprise, obtained five “good third class” passes, two “second class” passes, and two ordinary passes, without any failures, although I thought I was certainly going to fail the last paper, Conveyancing, as I fell asleep for at least 10 minutes and was unable to complete the paper.

I should at this stage say something more about EDS which means “Excessive Daytime Sleepiness”. Without medication EDS can come on at any time without warning, as I have said, during light conversation with friends or serious arguments or debates, when attempting to read, although very noticeably , it is more likely to occur where the subject matter is the object of study as opposed to ‘light reading’ such as exciting fiction or comics. As I have also pointed out it may occur when walking or riding a bicycle but on those occasions one feels the temporary loss of balance immediately with all senses alert so that one is able to take compensating action to maintain one’s balance. Similarly, when one is driving a car. At other times, however, the sleep that occurs seems more like a short circuit in the brain and on getting awake it may take quite a few seconds for one to get one’s bearings.One of the important effects which both Dexedrine and Ritalin had on my EDS is that they both caused me to be warned of an impending attack of EDS so that I could take appropriate counter- action, such as taking a short nap before driving or riding, or letting someone else drive, although such evasive action would not always be available where the proposed action would be attending a class or reading although it did help me to establish a regime of study by knowing when I was prone to falling asleep, as it did later in my legal practice.

Saturday, June 20, 2009

My School Years - College (Part 1)

Having completed high-school in 1954 the question arose – what was going to do with myself? Despite the weakness of the results in the Higher School’s exams I had spent two years in preparing for them (though I suspect it was contrived by my parents to keep me in school as long as possible) and it seemed it would be a shame if I did not use the experience to acquire a profession. But what? Without going into the objective and subjective factors in any detail which were taken into account, I decided to study law, a decision which illustrates that even then I had no real appreciation of the effect of my narcolepsy on my capacity for study. What is certain is that because of my left/liberal views I felt it was necessary to adopt an occupation/profession that would make me independent of the will of established society and it seemed to me that Law would best provide me with that independence.

The first thing it meant is that I would eventually have to go to England to take the Bar finals exam. The first part of the Bar Exams I would be able to take at home once I was accepted by the Inns of Court in London. I sought and obtained a job as an assistant clerk in a Resident Magistrate’s Court and acting upon the advice of more experienced heads in view of my somewhat limited qualifications I proceeded to apply to all the Inns for admission. Upon acceptance at Lincoln’s Inn I jumped at it started taking the subjects in Part 1 one at a time. When I managed to pass each subject with only one hiccup my confidence increased that I could succeed in passing the Bar exams.

To cut a long story short, upon completing all but one of the subjects in Part 1, I quit the civil service when I was not granted leave as many others had been to go abroad to complete the Bar exams and with some assistance from my parents I travelled to England to do so. I remained in England for two years and while there I was able to obtain electroencephalograph (EEC) tests and confirmed not only that I was in fact suffering from Narcolepsy but also that there was nothing else wrong with my brain. Another happy result of studying in England was that I was able to take advantage of their National Health Service and obtain my Narcolepsy medication free of cost. In fact, based on the advice of my doctors in England I continued to take approximately between 30 -40 mgs of Dexedrine daily for the entire time I was abroad and indeed for the next twenty – odd years after my return home, without any noticeably adverse side-effects. In fact it is worth commenting that the entire time I was in the UK no doctor ever warned me that the medication I was taking for Narcolepsy was a dangerous drug and that as an amphetamine ( and ,in the USA, a Schedule II controlled substance) it was extensively abused and was capable of creating “ extreme psychological dependence”. I wish to state categorically that at no time have I ever felt that I had become or was becoming psychologically dependent on Dexedrine. Nor have I ever felt an irresistible need to increase the prescribed medication and, remarkably, I frequently forgot to take the medication despite the fact that it is so important for my well –being. So much so that I have had to take special precautions to ensure that I always had a spare tablet or two on my person in case I forgot to take it. Incidentally, as you can imagine, while I was in England, many were the times that I would pass my ‘Tube’ stop and have to come off at the next or a later stop. I have even on a few occasions when I was particularly tired, travelled to the end of the line.

Tuesday, June 16, 2009

The Onset

My intention in creating this blog was so that persons who have acquired the disease can find some guidance and maybe even some comfort in the knowledge that, as difficult as it may seem, it is possible to have reasonably full life notwithstanding the undoubted handicap that they will suffer. Another primary reason is to provide narcoleptics with facts from which they may arrive at an independent judgment as to whether the drug enforcement agencies, particularly those in the United States are serving them as well as they could.

I am a citizen of and live in Jamaica, a small island in the Caribbean and at the commencement of this intended Blog I was three weeks short of my 74th birthday. I am now 74. Over the last nine years I have been suffering from increasingly severe rheumatoid arthritis and apparently mild prostate cancer, the effect of which has so far only served to deprive me of sexual pleasures. I have been suffering from Narcolepsy from my 15th year, and I mean the Whole Works - EDS, full blown cataplexy, hypnagogic hallucinations with all the terror that goes with it, and sleep paralysis etc.

I remember the first day Narcolepsy struck. The first symptom I became aware of was the cataplexy. I was at home in my garden with my older brother and some friends and I nearly fell on my face a few times as my knees went limp whenever I was amused. Alarmed, I ran to report my experience to my mother. I was in High School at the time and expected to sit for Senior Cambridge exams in my 16th year as I was considered to be bright. Not after I began to experience EDS in school, however, as I was kept down when I could not keep up with the class anymore due to what was regarded as my indolence. In fact there was an element of indolence in my approach to school, but up till then I had always managed to be in the first 4 or 5 in my class. Still it hurt to be so regarded by teachers whom I respected. All I had to do was to open a book to fall asleep before completing the first paragraph; and, of course I could not keep my eyes open for five minutes during classes.

This was in about 1951 to 1952 and my parents took me to doctor after doctor, most of who suggested that I was just a terribly spoilt child. After about a year we had some luck. The Neurology Department of the University Hospital was being established by an English professor named Cruikshank and my parents succeeded in getting an appointment for him to see me. It took the professor little time in diagnosing my condition as Narcolepsy. (Interestingly, he also told my mother and I that Winston Churchill also suffered from Narcolepsy. I don’t vouch for the truth of this but this is what I was told). Professor Cruikshank also pointed out that I might have to live with Narcolepsy for the rest of my life but that its effect could be modified by drugs and he prescribed 6 - 8 x 5mg tablets of Dextroamphetamine (Dexedrine) daily. I can’t recall all the specific details of the prescription but I know that I always started out the day with two x 5 mg tablets. The administering of the medication would be done by my family physician, who knew nothing about Narcolepsy and I doubt that I saw Professor Cruikshank more than once or twice after that.

I do not quote the professor in using the word “modified”, but only state the effect of what he said. The reality was in fact a moderation of his instructions. One would have to be very familiar with my condition over the year before I started the medication to appreciate its effect on me. None of the symptoms described earlier were eliminated, though their onset must have been reduced somewhat, for as a result of the faithful intake of the medication I was able, with herculean effort, to obtain Credits and Passes in the Cambridge Overseas Exam, the next year and then two years later, to sit for and “scrape through” the Higher Schools’ Certificate. Every narcoleptic who reads this will understand what I mean when I say “herculean effort” - the effort to focus on a word, a sentence, as you go off for a millisecond and have retrace your reading two, three, four times to make any sense of what you are reading - all this and more continued to be present despite the medication I was taking, but I was somehow able to concentrate for longer periods of time. Almost as important, I suppose, is that I was able to give some legitimacy to the condition I had although I am sure that there remained a great deal of skepticism about its existence among my teachers. Whatever they may have thought, however, there was no longer any indolence in my attitude as it took everything I had just to keep up. One of the immediate effects which the onset of Narcolepsy had on me was in altering my personality. Whereas I had been aggressive, unselfconscious and daring, I became introspective, shy and indecisive thereafter.

The limited effect that Dexedrine had on my EDS did not mean the I no longer fell asleep while walking, or riding my bicycle or while talking, in the middle of a sentence. These remained as commonplace events, and will probably remain a mystery to anyone but a narcoleptic how I could ride a bicycle to school every day and not fall off or run into someone or something. However, it never happened. It seems to me, in recollection, though this is very largely guesswork, that the medication I was taking then, had a greater effect on my EDS than on my cataplexy, or my hypnagogic hallucinations or the other symptoms which I had. Cataplectic attacks in particular have been the bane of my existence and are often combined with the hypnagogic hallucinations. So far as I knew back in the fifties, Dexedrine was the “only game in town”.