Jump to content


Photo

Getting Research Done: One Of You Might Succeed Where I Failed.

pwn can be fully asymtomatic?

  • Please log in to reply
12 replies to this topic

#1 doinmdirndest

doinmdirndest

    Member

  • Members
  • 378 posts
  • Gender:Male
  • Location:sf bay area, CA
  • Interests:Staying alive and wakeful, having fun doing it. Pursuit of the truth.

    Being w/the woman I love, and looking out for the both of us (and our little dog, too).

Posted 23 October 2013 - 06:03 PM

dear friends:

 

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)



#2 ironhands

ironhands

    Member

  • Members
  • 356 posts
  • Gender:Male
  • Location:toronto
  • Interests:things and stuff, video games, not feeling like bum

Posted 23 October 2013 - 07:37 PM

that high dosage IS bad medicine technically speaking, but then so are most, if not all treatments, for the EDS associated with N or IH, because they don't treat the disease so much as mask the symptoms; in simple terms, they are a crutch.

 

Many people could quite likely handle a high dosage of amphetamine, but most opt not to, and most doctors feel the addictive nature, tolerance build-up, and long term damage outweigh the benefits, especially when many find alternative medications just a suitable.  No two cases of N are the same, so no single treatment can work.

 

Basically, think of it like this.  Why would doctors, especially at a recognized research center, keep trying to improve upon the crutch, when they can look into ways to find out why the leg is going bad, and find ways to heal it?  

 

Amphetamine doesn't help with HH, cataplexy, or sleep paralysis, so why would they keep looking?  It's a dead end.  Might work for you, and that's awesome, but there are several members here that wouldn't benefit from the high-dosage therapy.

 

For me, and I know I in no way represent anyone but myself, but I would much rather work on the underlying cause, than simply work with fixing the EDS issue.  I'm tired, and all I want is a stimulant from my doctor, because I know there's nothing out there that'll stop me from waking up every 2 hours that is right for me, nor will it fix the appetite or mood issues I'm experiencing.



#3 doinmdirndest

doinmdirndest

    Member

  • Members
  • 378 posts
  • Gender:Male
  • Location:sf bay area, CA
  • Interests:Staying alive and wakeful, having fun doing it. Pursuit of the truth.

    Being w/the woman I love, and looking out for the both of us (and our little dog, too).

Posted 23 October 2013 - 10:06 PM

there are several here that wouldn't benefit from high dose amphetamines-and there are several that would...

 

little is known about high dose amphetamines.  more should be discovered.



#4 ironhands

ironhands

    Member

  • Members
  • 356 posts
  • Gender:Male
  • Location:toronto
  • Interests:things and stuff, video games, not feeling like bum

Posted 24 October 2013 - 10:35 AM

benefit, yeah, but there could be something right around the corner that would work better without the side effects, primarily, the orexin agonist direction for those who still have orexin producing neurons, and that's really where the main research dollars should be spent, since it has the potential to treat most PWN.



#5 doinmdirndest

doinmdirndest

    Member

  • Members
  • 378 posts
  • Gender:Male
  • Location:sf bay area, CA
  • Interests:Staying alive and wakeful, having fun doing it. Pursuit of the truth.

    Being w/the woman I love, and looking out for the both of us (and our little dog, too).

Posted 25 October 2013 - 12:25 AM

maybe so. i'd have to try it once it's available.

 

if the reputation of the amphetamines did not precede them (making you/many tend to fear these drugs), and a way could be found to have them as well tolerated at higher doses as they are in me,  likely you'd find their effects quite a blessing, particularly at work.

 

trust me. 

 

other men on the construction sites sometimes made jokes about my sluggish/sleepy behavior.  I never held a job more than a few weeks.   today, i'm employed w/same firm 10 years, and am regarded as an asset to the company.  one or two other men on site have told me i'm the hardest working man they ever saw in their life.

 

that's the impact these drugs had on my life.  I concede there are pros and cons.  the amphetamines are far from perfect, took me years to adjust to tendencies they bring such as paranioa and hypervigilance.

 

it is absolutely worth it today, i'm performing well as anyone at work, along w/ the ability to hack chores at home on my days off (a thing not possible when I held a full time job untreated, just getting to work and getting through the day was literally all I could do.  didn't have the energy to so much take off my clothes at night/bathe some days. woke up drove to work in the same clothes as the day before.)

 

I know others could have similar benefit.  w/ much lower doses than i'm getting, but more than they have access to today.  these forums are replete w/descriptions of dire straits similar to my own, before treatment.

 

some convey desperate need for a solution w/all options known to patients/their md's explored w/o effective results.

 

for an indeterminate # of these, those for whom research could perhaps discover a means by which to lessen the undesireable effects of high dose amphetamines, the same potentially offers

an effective solution indeed.

 

 .



#6 steaks

steaks

    Member

  • Members
  • 20 posts

Posted 25 October 2013 - 10:22 PM

About 70% of the US population is probably chronically dehydrated, and I'm willing to be that you are too.  I bet that your blood is chronically acid.  I know what it feels like after a super intense workout.

 

 

A lot of the negative side effects from stimulants aren't directly caused by the actual stimulants, but by the corresponding active lifestyle,  coupled with a lack of healthy food, hydration, and ample rest.  When someone is really active, they need much more water, fresh green vegetable juice, and rest than an inactive person.  A marathon runner's health would go to crap if he never rested and ate crap, and it is the same way with stimulant users.  For example, a lot of amphetamine users lose their teeth, not because of the drug so much, but because their blood and saliva is hopelessly acified with lactic acid from poor nutrition and hydration.  Acid saliva=tooth loss.  It's easy to test, spit on a ph strip, and if it is consisitently acidic, it wont be good for your teeth.

 

This being said, you will probably have way less side effects if you keep your blood really alkaline with plenty of water.  It flushes all the lactic acid, and other crap out of your bloodstream.  It makes a HUGE difference, both psychologically and physically.  Less paranoia, less anxiety, less sluggishness, and less of an edge.  A lot of the crash that people experience isn't from the drug as much as it is from the overexertion and dehydration.  Drink a lot of green leafy juice, not with fruit, and drink a lot of alkaline water, and you will have a much much better experience.  You probably will need a gallon or two or more a day, and not of tap water.  You will feel much less sluggish.

 

Fruit tastes nice, but if you want high stamina, spend about three months of drinking dark leafy juice fresh from the juicer every morning on an empty stomach.  The key is consistency, it doesn't help that much if you aren't really consistent.



#7 doinmdirndest

doinmdirndest

    Member

  • Members
  • 378 posts
  • Gender:Male
  • Location:sf bay area, CA
  • Interests:Staying alive and wakeful, having fun doing it. Pursuit of the truth.

    Being w/the woman I love, and looking out for the both of us (and our little dog, too).

Posted 26 October 2013 - 12:46 AM

this is good information.  long ago, in the time of a component of my stimulant history i'm not allowed to discuss here, I became possessed w/the notion that I would design behavioral strategies allowing me as a human to adapt to the stimulants as they were an ever present part of my environment.  I surmised that the objective of this as becoming a mutant, like from Charles Darwin.

 

the dehydration I observed in myself and others I defined as a 'keystone impairment', from which most all bad things that happen when we take stimulants either directly result from, or are excacerbated by.   the sensation of thirst is blocked out of your bodily awareness when amphetamine is present in your system.

 

therefore, I became obsessed w/constant hydration; others noted on a few occasions the ever-present water bottle I carried or had in my vehicle (refilled from tap) this continues to some degree at present.   

 

I think this may have saved my health, perhaps my life.

 

the 'becoming a mutant' thing was delusional of me.  that was over 20 years ago.  i'm far more down to earth today, yet maybe it will get a laugh to learn the latin species name I came up with (genus? I dunno.)

 

I think it was homo habilans then homo Neanderthal and today we are homo sapiens.  well, it's not that I have anything against gay people but I couldn't put prefix 'homo' in so here's the latin name:  hetero amphetimans. 

 

sick puppy, wasn't I?



#8 drago

drago

    Member

  • Members
  • 230 posts

Posted 03 November 2013 - 11:19 PM

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.

 

In regards to your difficulty find researchers and winning their attention/response, the likely problem is that your interest in research is, for lack of a better expression, self-serving. You are trying to challenge a medical standard because you benefit medically from it. From a researcher's standpoint, this is problematic. For example, if you develop issues/problems from your medical treatment sometime in the future, would you openly admit it? Or would you, as a patient, be so invested in the treatment that you would deny it or try to hide the newly problematic development? It's a valid question -- especially when dealing with medical problems, which rely heavily on patient reporting. They need to know that you will be direct and honest -- and if you seem like you're coming from an angle, they might resist working with you  because that angle can become a problem. (NOTE: I'm not trying to say you would be a problem for research, just trying to identify reservations of a researcher.)

The trouble is that neurochemistry is still a field with much to be discovered. You may tolerate the amphetamines well because of the specific neurochemistry from your genetic and environmental makeup. Current research shows that the neurochemical orexin/hypocretin is linked to addiction -- that is, people who have an excess of orexin/hypocretin tend to have addiction. This is the chemical that people with narcolepsy lack, and research has also shown that people with narcolepsy are less likely to be addicted. "Although narcoleptics were sometimes treated with potent amphetamines to help them stay awake, they never became addicted to the drugs." [<a href='http://www.scientifi...ion to Bed</a>]

"...that patients with narcolepsy, in general, have a lower chance of addiction due to a deficiency in hypocretin (orexin), a hypothalamic neuropeptide that regulates sleep-wake cycle, feeding behaviors, and energy homeostasis, and was recently implicated in reward systems." [<a href='http://www.ncbi.nlm....Narcolepsy</a>]

People with narcolepsy have less hypocretin/orexin, but also tend to have higher levels of another neurochemical, histamine. [<a href='http://www.ncbi.nlm....ses alertness.)

If you want to get researcher's attention, you will need to give them a bigger picture than one prescription. Have you ever had a heart rate monitor continuously attached to you? If you did, and showed your resting heart rate to be low/strong (60-80 bpm) and your active heart rate to be good (140-160bpm) over many days, then that might be something researchers would be interested in -- it's a major issue with most stimulants AND your body is well-adjusted even when working out -- then that might be a consideration for them.

I'm guessing the biggest interest would be in neurochemical balance, which can only be analyzed accurately through spinal tap/lumbar puncture, I believe, though studies in functional MRIs and such might be valuable for research. I'm guessing, in your case, medical resources will prove that your neurochemical balance is closer to "normal" than most people with narcolepsy. For some reason, the high dosage of stimulants has re-balanced your system. That would be my best guess, given what I know.

Anyway, the resistance in the medical community is that they are largely hypothesis-based. i.e. they start with a hypothesis and develop an experiment around that. You might be better served by looking at Doctoral candidates doing research -- people who are coming up in the field, not already in it -- or recently graduated doctors who did research in narcolepsy or stimulants.

The big thing here would be spreading a wide net for research -- look for research/researchers who focus on narcolepsy, EDS symptomology, and/or stimulant research. Find as many as possible -- doctors, students, medical researchers, whoever -- and look at what they're researching. People who are new to the field, like recent graduates, might be more interested in an individual with unique presentation/symptoms for study that people who have been in the field for a long time and already cultivated hypotheses and research avenues.

Note that I am speaking from my work in research in scientific research via computational science/multidisciplinary mathematics and computer engineering, which admittedly is completely different from doctor's research/medical research, but it has similarities in structure.

 

Basically, think of it like this.  Why would doctors, especially at a recognized research center, keep trying to improve upon the crutch, when they can look into ways to find out why the leg is going bad, and find ways to heal it?  

 

Having worked in research in a multidisciplinary field, I can tell you one basic fact: Research is not linear. Working on a "crutch" as you call it could possibly reveal an underlying fact that other research would never uncover. (i.e. Consider how research on narcolepsy/the low incidence of addiction for people with narcolepsy despite being prescribed many medications considered 'highly addictive' has shed light on orexin's influence on addiction.) Research from one thing often will open doors on another.

That's the reason doctors (especially at a recognized research center) would keep improving the crutch -- or study the crutch as closely as possible.

 

drago



#9 ironhands

ironhands

    Member

  • Members
  • 356 posts
  • Gender:Male
  • Location:toronto
  • Interests:things and stuff, video games, not feeling like bum

Posted 04 November 2013 - 09:21 AM

Having worked in research in a multidisciplinary field, I can tell you one basic fact: Research is not linear. Working on a "crutch" as you call it could possibly reveal an underlying fact that other research would never uncover. (i.e. Consider how research on narcolepsy/the low incidence of addiction for people with narcolepsy despite being prescribed many medications considered 'highly addictive' has shed light on orexin's influence on addiction.) Research from one thing often will open doors on another.

That's the reason doctors (especially at a recognized research center) would keep improving the crutch -- or study the crutch as closely as possible.

 

I was speaking more in regards to the concept of a crutch in the general sense.  Sure, there's information to be gained, but in your example above it may not provide any advancement in the treatment of narcolepsy, but could certainly be helpful to other fields as you say.  The uses of orexin as an appetitite suppressant, anti-depressant, or addiction control could be quite useful. 



#10 doinmdirndest

doinmdirndest

    Member

  • Members
  • 378 posts
  • Gender:Male
  • Location:sf bay area, CA
  • Interests:Staying alive and wakeful, having fun doing it. Pursuit of the truth.

    Being w/the woman I love, and looking out for the both of us (and our little dog, too).

Posted 05 November 2013 - 02:17 AM

thanks, drago.

 

I don't know what to do though.  sit patiently at the medical school with a sign explaining things so doctoral candidates may consider it as they pass by?  guess i'll need pamphlets.  and a bag lunch.  UCSF is nearby.  thank goodness my gal is an RNNP, I was clueless as to what a doctoral candidate was.

 

 

I am intrigued by the research towards a cure for n. and will be eager to try it.  but I wonder if it offers, in place of being the man on the jobsite that's a little sluggish that the construction firm keeps on board for a little while because he's a nice guy, the experience of being instead an 'ace hand' that the firm considers an asset?  my boss actually-please don't think i'm into tooting my own horn, I am loathe to- gave me a pickup truck from the co. fleet when my original truck died.  just so I could keep working.   i'm that 'good'.  

 

this is what high dose amphetamines did for me.  they had negative consequences as well, such as leaving me all but toothless.  they are far from a perfect solution.

 

but it's great to be robust after a lifetime of not even knowing what it feels like.  will the cure also bring this?  I hope so, and at the same time I am certain high dose amphetamines could and can for numerous pwn. 

 

but they are so feared, both by pwn and their md's, that they go untried.  I believe they are misunderstood as well, to some degree.

 

  I hope the new cure is covered by my insurance, when it comes.



#11 doinmdirndest

doinmdirndest

    Member

  • Members
  • 378 posts
  • Gender:Male
  • Location:sf bay area, CA
  • Interests:Staying alive and wakeful, having fun doing it. Pursuit of the truth.

    Being w/the woman I love, and looking out for the both of us (and our little dog, too).

Posted 05 December 2013 - 08:02 AM

4 am.  wakeful w/o medicine.  w/fill date for 270mg/d Adderall rx less than 48 hours away, I prepare to ensure my place at the front of the clinic's drop in same day appointment line, so as to optimize the chance the new md at the clinic replacing the rx'er of my Adderall regimen of 3 years.  this man's career takes a new turn; the doctor I meet today holds in his hand the very fate of my wife and myself.  his willingness to continue my treatment, or lack thereof is the dictate of whether or not my 'program' -you know, how I make a living.  holding my job and so forth-lives beyond that fill date or dies. 

 

'like a lead balloon' one could say, before testing by mythbusters proved possible flight of a balloon of lead, is how my program shall fare sans this rx.  even showing up for work will become a thing I cannot do.

 

even were it my first workday as one of the mythbusters.

 

no man's job ever had me envious of it.   except for those lucky stiffs, and I'd in reality probably manage timely arrival on my first workday as a tv mythbuster.  just as I or anyone can if the incentive is bountiful enough. 

 

but the producers of the show, not altogetrher likely to be as tough to 'cut the mustard' w/as my present bosses,  would as of morning break have 'let me go.'  (by far, the most commonly used phrasing advisement of terminated employment when at first the newly jobless employee hears the bad news.  before I was treated, I was fired as many times as can be.  of the 50-100 or so telling me, but one had the straight up honesty to say to me "you are fired" instead of choosing a 'clean up phrase' in telling me this, the general manager of the service auto glass shop on garland road in dallas, tx.  there, my 9 month tenure as a job holder, dwarfing all other jobs' length of time I held them w/o the wonderful - for - me amphetamines ended due to tardiness I was not able to desist in.  I was 18.  I lost my place in an employment family that day.  at 52, roughly that man's age at the time, the reflecting on in brings this lump in my throat.  I wonder if the unusual spelling of lee pruiett leads via someone here the materializing of a remote probability of a very old man hearing of the kid he trained as a installer back in '79.   or maybe the chain's regional boss, sven jelinek.  'pity' in the south African accent this Caucasian had.  or maybe the non-Caucasian downtown store installer w/name long forgotten that gave 'jelly belly' his nickname in the firm, as well as my own, 'shakey'.  was not so comfortable w/my handle, but it fit....I was a fragile, timid new member of the American workforce.  maybe he will hear of the kid from the garland road store in the twilight of his journey.  or maybe ed burns, an assistant of sven's, who implored of me regarding the results of my untreated workplace performance, "doug, why so much damage to so many vehicles?" in his try at salvaging the firm's ability to keep me on board.  good men, each and every one.

 

I never would have dreamed, then, w/untreated EDS I yet did not know existed, that I could ever anything like the worker I am today.  NO MAN scoffs my place on site.  I'm an 'ace hand' you might say.  very unlike before. so long ago.

 

and neither would some of you. perhaps many.  but for reasons I find mythical your doctors are unwilling to grant the request for a high dose amphetamine regimen you would otherwise ask of them, ......

 

were you yourselves today from the same myths not too afraid of the amphetamines to consider beginning any such wakefulness promoting regimen that may be the gateway to the same freedom I have found,  if it does not turn out to be the gateway to some sort of undesireable, unpleasant result.   it has been for some here, deathrabbit, whose posts never failed to be worth looking forward to reading, was one.  you still here, dude?  so many come and go silent after a time here on nn.)  

 

I yet retain the ability to replace most any car's glass.  thanks, lee.

 

the memory of you helps me be strong in this morning of impending news from this new doctor like a capital murder suspect watching the jury filing back into the courtroom.  it is certainly not so less profound for me, awaiting the 'verdict'.       



#12 Jennell

Jennell

    Member

  • Members
  • 19 posts

Posted 05 December 2013 - 04:55 PM

I am curious ot how you take the Adderall-i.e. how many milligrams at what times of the day? Do you use something to assist with sleep? Do you get sleepy?

 

Thanks - I'm on 15mg morning and 15 mg lunch and hoping to increase (also on two provigil at the same times).



#13 doinmdirndest

doinmdirndest

    Member

  • Members
  • 378 posts
  • Gender:Male
  • Location:sf bay area, CA
  • Interests:Staying alive and wakeful, having fun doing it. Pursuit of the truth.

    Being w/the woman I love, and looking out for the both of us (and our little dog, too).

Posted 06 December 2013 - 02:16 PM

90mg 3x a day.  usually set the alarm 2 times for a workday, 2nd time for reawakening, 1st dose/back to sleep 1hr before.   'not guilty'/new md continued my adderall, by the way.  details in other post.