i was dx'ed 6/1/10. the md that ordered the mslt had been my rx'er for 7 years. in 03' he ordered a polysomnogram (spell/term check? overnight test) that was + for mild sleep apnea. based on this dx and adhd he had bee rx'ing me adderall since about my 3rd or 4th visit.
he was the first md to rx me a wakefulness promoting medication. in fact, he was my first md seen on a regular basis of any kind since age 12. i'm 51. around 25 years prior to my first visit w/this dr. i had begun a wakefulness promoting drug from sources not medically supervised, and i had no idea anything like the drug was available from md's and their rx's/the establishment/government whatever.
all i knew was that w/o this drug i couldn't hold a job or even put much effort into finding one, or take care of business in general. i grew up in the 70's. in junior high i started trying any drug i could get my hands on....mine was a misspent youth. sometime in my early 20's i came to percieve marijuana alcohol lsd and all other inebriants as being obstacles.
i could not go on placing these stumbling blocks in my own path, and having finnally come to know mind-altering chemichals for what they really were i was no longer interested in using them, and i left them behind for good..........
exept one. it gave me capability. prior to age 16 when i first used it i was so w/o energy that i bathed but once a month or so, and i didn't apply myself at school. my eds/fatigue was that severe. having found a lucrative self-emloyment delivering/installing waterbeds and bedroom furniture on a subcontract basis (customers paid me directly, usually in cash) my (w/o md/rx)access to this drug enabled me to out perform competitors.
it gave my self esteem of knwing i, too, can do well. i had 4 years of doing so well that i rarely bothered to count my money and having less than $100 on hand felt very wierd as but 1 or 2 times a yr. did this happen. after this, i left texas for the land of sex, drugs and rock and roll everybody knew was california.
around 15 years later i came into the employ as gardener/landscaper/handyman of the nurse practicioner, then w/a weath now all gone from her half of a marriage to a multimillionaire, who was to become the love of my life.
she, like all my employers then, was explained by me of the drug and of its cost, and of its being essential to my performing tasks for which i was hired.
none had much in the way of objections as i out work most anyone, if medicated of course. not a boast. just the truth.
after a time this rnnp told me she had been watching my behavior, and that i probably had a sleep disorder. she went on to tell me i could probably be prescribed medicine that did the same thing the costly drug i had been using for decades did. she said i should schedule a doctor vistit and tell the doctor everything i had told her.
sure enough, she was right. and i called her a silly goose, told her my take on authority and my drug.
"they have only 2 things they bring to us" (me and uthers using the same drug) "one is a program" (an inpatient one, w/cold turkey cessation of the drug's use, such as betty ford) "the other is the pogrom!" (like hitler did to jews only not as extreme. just insidiuos persecution and jail/prison stays. plus outrageous expense, due to subterannean industry/distribution providing the drug)
i was honest w/ the md. he seemed to know when he began my adderall @ 30 mg/d and i did not rspond that he needed to rx the usual maximum of 60 mg/d. he knew my past stimulant history likely had my tolerance at a level not normally encountered by md's rx'ing adderall. intuitive, insightful questions preceded each granting of my oft-stated requests for more adderall, until my rx = 150 mg/d.
all along he was aware i remained a customer to my prior resources for stimulants. it seemed he saw in me a man who could be a productive member of society were he able to get rx'ed medicine the need for which he could not help. his goal was apparently to wean me off of stimulants obtained outside of medical sources.
when my mslt was 'highly suggestive' of narcolepsy- just 1 sorem, but 2.18 min onset lat, + my inability to remain wakeful in any part of the intervals clearly proved hypersomnia strengthening his position to rx me adderall, he offered to raise my dose to however much i felt i needed, after first establishing a contract w/me. if he ever found out used wakefulness promoting medication he did not prescribe, i would get from him no more addreall rx.
when i told him 300mg/d-a wild guess on my part- he seemed to contain well a sense of shock/suprise i could barely perceive- then he steeled himself and went forward w/writing the rx. unfortunately i found it neccessary to email him (yes, he communicates w/ patients by email, replys promptly. imagine my suprise/dismay in learning, as part of my dealing w/other md since, that md's are not normally accessible in this way before the next sceduled visit)w/ a request for more adderall-450mg/d.
this md is an outstanding, amasing person. he runs marathons in his mid 60's, has climbed mount everest and has had dinner w/ the dali lama. he is a photographer he sell pictures from an online gallery. 6 of the 7 continents are featured, the summit of mt. everest is but one incredible subject of his photos.
due to circumstances i'll not explain in this reply, which must read like a short novel as it is, an evaluation ordered by him that he felt was a good idea to have done before granting me the rx for 450mg/d adderall, i found myself being given the most devastating medical opinion possible in reference to my adderall regimen. it was also devastating to my wife.
it came from md's at the stanford center for the treatment of narcolepsy in redwood city, ca. dr chad ruoff attended me there. i was sent there by dr jon sassin, a sleep specialist from whom my rx'er had ordered the evaluation. dr sassin wenmt on a long vacation after sending me to stanford for evaluation procedures.
dr. ruoff is a good dr. and a good person. he remained objective and thus proffessuional as he attended me. however, his attending me included a supervising md coming to our visit, of whom the attending dr. evidently needed approval for his dr work w/me before doing anything. i never knew dr.'s practiced in this way, w/a 'boss dr' involved.
anyways, supervising special md dr anstella robinson vehemently objected upon my first mention of high dose stimulant regimens as i explained my position. she interupted me in mid-sentence. she conceded under much duress that rare cases may exist w/indications for a stimulant regimen such as my own-the exsisting 300mg/d adderall, not the 450mg/d sought by me as had me before her to begin w/-only to prove most adamant in another stanford visit in her condemnation of my treatment.
this brought me to the office of the director in an email. it was a both courteous and resonable request for a different supervising md to be brought in. the email was sent to firstname.lastname@example.org a reply was sent to me. curiously, it came from email@example.com not the email address the request was sent to. another odd thing was that my email did not appear below the reply like all other replies since i first discovered email. these oddities were not relevant, and i had already emailed mali einen about research opportunities for the betterment of science i beleived i could offer by letting the researchers bring me in and figure out what makes me tolerate well 300mg/d adderall, and w/my response hold a job doing grueling, physically demanding construction labor full time for 8 yrs., despite eds/fatigue symptoms as severe as they get.
this person was the 'clinical research coordinator' obviously to me this was a doctor, one commanding the entire research team/apparatus at what then yet appeared the magnificent institution i had been sent to-stanford sleep. i got only silence from dr einen after emailing detailed considerations of why i beleived he could do wonderful things w/my desire to be for stanford narcolepsy research a 'guneia pig' whose adderall regimen was working very well.
"we would not advocate using stimulants in the amounts you are prescribed. if you wish to see dr mignot call (phone#) and schedule an appt." my wife and i were truly alarmed. having prior to this been of the impression that likely developments were under way were to be productive in the end so as to have my first adderall 450mg/d rx soon in hand, we found ouselves informed my dr was practicing bad medicine in his treatment of me. what else could this reply mean?
and guess what happened after my f/u email was sent asking for an explanation as to ther why and wherfore of the position taken w/ "we would not adfvocate for using stimulants in the amountys you are prescribed" was sent, to both firstname.lastname@example.org and email@example.com ?
first it was replies having no explanation nor apology of any sort, until as the fruit of thousands of hrs online seeking out things medical pertinent to my dx/tx/situation, i found PHARMACOLOGICAL ASPECTS OF HUMAN AND CANINE NARCOLEPSY' a medical paper written by none other than dr emanuel mignot. the article recognizes high doses of stimulants are neccesary to treat the symptoms of some pwn, and it specifies as exaples 250mg/d desoxyn and 525mg/d methlphynadate among other wakefulness promoting medications.
see for yourself. pg. 36 or so. my next reply will have the stanford link that downloads it for free. yesterday i included the link in another reply and it made computer jibberish only the geeks understand such as '<p>' and 'nsbp;' intersperse thoughout my words. it took about an hour to delete it all one charachter at a time, so look at my short reply i put it right after this one.
when i sent the email asserting the info. in this article i was asked to send nothing further. and i have been ignored since then although nothing i've sent has been inapropriate, discourteous or unreasonable in any way. i have sent dr mignot and dr seiji nishino, the co-author of this article, inquiries to learn details of their findings.
just dead silence.
for 6 months i was w/o a prescriber for my adderall. an internist at a clinic continues my adderall regimen @ 270mg/d since then. he has explained that under clinic policy he is only able to continue this 'specialty medication' after the clinic sought out and was given the approval od a sleep specialist outside the clinic where the internist sees me. it is the same md that dr picker had ordered my evaluation of, dr sassin, a true gentleman if ever i met one.
the internist wernt on to explain he cannot change my dose, and he cannot begin an rx for any other medication used to treat eds/fatigue. nevertheless, this good man who has also, from what i heard at least, attended people in poverty stricken places where little or no medical practice is available. i have to be ghrateful. yet i will always wonder about dr mignot choosing to first have his assistant convey to me a flat and unilateral declaration that my wakefulness promoting regimen amounted to bad medicine, as i later learned was what the "clinical research coordinator" was, a flunkie in her own words, then having nothing whatsoever to do w/me. surely he is able to expect such words potentially have devastating impact when given a patient pleased w/a treatment that has been working for years.
so, today i am getting more adderall thjan most anybody here. there is more to the story i cannot tell i have 1 warning point already for my full disclosure policy, although my stimulant intake is strictly of medicinal need. iv'e read numerous postings here and in other forums pwn are not given releif from eds/fatigue symptoms and when their regimens are disclosed along w/the heartbreaking in some cases accounts the fact is that for some reason none are given higher doses.
seems to me thisw ought to be tried especially if nothing yet has worked for a patient, and surely at least a few do not have contraindications. i recognize anonymized posting cannot have us aware of these as may exsist...........yet not even 1 has their rx'er simply titrating up their adderall when the initial response is gone. it worked for me and i can't be the only sleepy person in the world able to benefit from high dose stimulants.
it has become apparent to me my treatment is so highly unusual that even as it today is unknown and perhaps inexplicable to the few who have occasion to be informed of my regimen's existence it will one day be medically historic. such statements are normally of grandiose delusional impart, yet the internet likely shall outlive both myself and the intrepid dr robert picker, who saw fit in his intrepid to begin a tx that had dr ruoff at stanford sleep inquiring of senior md's there if ever any such massive (comparitively speaking alone-in reality the rx'ing norms reflect puny doseaging of my med and others like it in the practices in which other pwn are treated. i wish i could bring them to dr picker. he's in walnut creek, ca. and i'm highly remiss to bring his name into the open, public forum but he should finish what he started.
hje is blameless for dropping me though. i wasn't mentally ill in any way be it a manic event or otherwise. i did stupid things in my final interactions w/ the neurologist/psychiatrist i had tthe incredible good luck to begin the treatment of my eds/fatigue in his practice.
any other md would have my joke and my ridiculing my mate's original suggestion that i see an md correct. if you are in n. california and wish to seek out dr picker i advise you strongly not to mention me. my being anonymous here won't conceal who sent you if you give details of my story. his email i must refer to my yahoo acct. to recall, and it is provided in the next reply, along w/the link to the article by dr mignot. i'm very tired after keying in this i hunt and peck
so it takes a long time, and lots of effort. i cant be sure of the email adress of the good dr although normally i can you all surely understand.
best wishes all. i hope this was decent reading, it'd have to be or can't be read w/o being a lot like work. and its full of typos i cant muster the effort to fix them. surely this too you all understand. <whew.>
we determined that 'firing' stanford sleep and having dr sassin simply order procedures elsewhere was the thing to do. his being on vacation at the time unbeknownst to us looked quite a bit like his ignoring emailed requests we sentn him to that end. so i was so agitated/p'ed off as i then emailed my prescriber, who then was finding inapropriate to begin w/my going to him and not the evaluating md. that he thought i was having a 'manic event' as opposed to 'duly p'ssed under the circumstances he had no way to suspect i was in.
he dropped me. dr robert ian picker is a great man, but he has his moods. i wish he could have found appropriate some dialogue w/me before reching conclusions, but i can understand how he concluded it would useless to ask anything of me. after all, the world's best and brightest in the tx of n. was handling my procedures, stanford sleep.