3 years ago, at the Stanford center in redwood city I was told my EDS treatment, a well tolerated high dose 300mg/d Adderall regimen of years longstanding as of then, was bad medicine.
since then, and ending recently, I set out to find out why, learn the situations of other pwn and i.h. sufferers particularly ones w/similar EDS treatment, and to understand as well as possible what made dr mignot and the esteemed institution he commands (Stanford sleep) believe as it did regarding my treatment.
I have come to a conclusion that save for 3 other pwn, all anonymous from these forums, only I have this massive doseaging requirement. also, only a few do not suffer negative side effects same as me from amphetamines such as Adderall even at small doses.
also, the rest tend either to draw disability payments because of their n. or i.h. as it has them truly disabled, despite treatments and lifestyle changes, or they confine the type of work they take on as employees to less strenuous 'low impact' jobs.
I am not only asymptomatic (no EDS) but also am energetic and have held for 10 years a job as a construction laborer with some days, quite a few of them, doing work as physically hard as any.
PERHAPS many more pwn can have this benefit from higher doses of stimulants (not likely high as mine, but much higher that are now accessible for them) IF AND ONLY IF researchers will simply accept my offer to show up at their labs so they can find out why I tolerate stimulants so well, AND IF medical science can transfer this to others somehow.
I have no way of knowing if this is possible or impossible and neither do you.
what has proven impossible for me is getting researchers on board. my efforts have been extensive/exhaustive. to give myself credit where I find a tangible reason to here's the 1 thing I define as an accomplishment: the NIH office of the public laison sent a email reply several pages long. were it not for my limited online skills it likely is a 'game changer', w/links to databases of who is doing research as well as the forms researchers could submit to get $$$ to do the research with.
i have done all i can I can do nothing more. some here can do things I don't know how to online. others have a better idea how to go about successfully approaching the researchers. many, if not most, of you have better communication skills.
i have the rarest kind of treatment history. i'm the only 'gunea pig' in all likelihood from whom how the human body can sustain high dose stimulants for 3 decades, virtually w/o so much as 1 day w/o them save for a 2 week washout prior to my MSLT and 3 months i was locked up.
i would be happy to fwd the NIH reply, email me my contact info is in my profile and i will.
for the benefit of many, maybe one of you can succeed where i failed w research. get them to have a look at me (or somebody like me, a thing/person i have been unable to discover. based on mg/d amounts alone, 3 others exist 1)stimulatednarcoleptic from sleepconnect 2)arizonahugs from talkaboutsleep and 3)moshe turner from the linkedin narcolepsy open discussion)