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Eds/fatigue And The Quality Of Their Treatment: Has Sleep Medicine Gone Astray?


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#1 doinmdarndest

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Posted 26 January 2013 - 03:55 AM

dear freinds-

 

i have recently obtained and read medical publications by dr. robert yoss of the mayo clinic about narcolepsy and it's treatment w/stimulants.

 

they were written in the '50's.  it seems the conclusions of dr. yoss regarding n. tx/dx have little, if any, impact upon the practice of sleep medicine today.

 

i wish i could find a rx'er today whose practice still is conducted w/the "obsolete" paremeters of medical practice regarding the rx of amphetamines when treating EDS/fatigue, particularly in reference to determining what mg/d amt. to rx a given patient when these meds are indicated.  i do not respond to nuvigil.  i do respond to adderall ir, but only if i take in mg/d amts. far in excess of my md's instructions which=wakeful today, w/o any wakefulness at all on another day soon to come. 

 

the med is well tolerated in me, both when i follow rx instructions (and am only half wakeful at best) and when survival/responsibility/avoiding homelessness/extreme perdition via employment absolutely mandates (via the wakefulness it requires)my not following rx instructions, and taking about twice the rx'ed amt. to that end.*

 

 

this i wish as the straightforward, down-to-earth writings of dr yoss make far more sense to me than the entirety of the many, many medical publications about n. symptoms/tx from his present day counterparts i have studied .

 

'narcolepsy treatment' is one of these publications.  

 

anyone else familiar w/the work of this great man?

 

 

-doinmdarndest

 

*i cannot advise other pwn strongly enough not to exceed rx'ed amts of stimulants.  my having done so=playing w/fire.  my symtoms ought to be fully treated they are not even w/the massive amt. (by comparison to reccomended max. doseaging guidelines, to which i do not respond even in the slightest, even w/3 mo. washout) i am fortunate/grateful to be rx'ed.   no dr. wants to again be mr./mrs./miss, i truly respect this.  i wish the medical examiners could see and respect my case, perhaps then md's could treat me and others like me (if they exist-450mg/d adderall is indicated) w/o fear of this.

 

the dawn of a better tomorrow, then.  (for little old me at least)  best wishes, all.    

 

 

 

 

     

 



#2 Katty0

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Posted 14 February 2013 - 09:33 AM

I havent read the article but I am in the same boat as you.  I get a normal ADD dose of adderall (20mg) and after begging for months was given a 5mg pill to take twice a day.  If I wasn't narcoleptic I'm sure this would give me energy.  However I am sitting here washing adderall down with Redbull and wishing I was still in bed :(

 

I am exhausted ALL the time unless I double the dose but adderall is a substance that you can develope a tolerance to very quickly so I know that won't help long. 

 

I just dont understand why my Dr. is so against trying ANY other drug at a higher dose.  I can't live like this, no one can. 



#3 doinmdarndest

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Posted 14 February 2013 - 08:25 PM

your rx has your mg/d @ just 30 mg.  this is 1/2 the manufacturer's reccomended maximum mg/d for adderall.  unless you have contraindications such as heart trouble your md ought not to have a problem w/granting a higher dose.

 

you might need a new dr.



#4 Rainbow

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Posted 25 February 2013 - 03:10 PM

I am not sure what to do about the medication.  I am taking modafinil.  To do the sleep study I was asked to go off of it but the study was postponed twice so then I was off for 6 weeks.

 

My counsellor told me that while I am of the medication I am clear and settled and appear able to go to work.  Off the medication it is painful to wake up before 10 am, I can't consolidate my sleep and every second day is a write off, where I have to have a 2-3 hour nap.  Carefully I can organize my appointments so that I am able to attend most appointments.  She suggested that I try living medication free.  She like my real me but there are very few functioning hours and it adversly affects my relationships.

 

Then I go back onto the Modafinil and I am not feeling great.  It helps me get out of bed and start the day but then I am anxious and my thoughts racing and feel pressured to do things. Then I crash, starving and find myself on a medicated rollar coaster. This would be a state that I could get some work done but I see so much I feel like doing, I end up not doing much.  I am awake all day, I can drive.  I can't relax but I can probably have a career again.  People think I am a bit off.  A bit hypomanic.

 

I hate it... what a problem? To take or not take.  I just don't know... what do I do?



#5 lkl

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Posted 26 February 2013 - 03:51 AM

Neither of those options seem doable long term. Have you tried any other medications for your narcolepsy? Or has your doctor tried combining an anti-anxiety antidepressant medication in combination with the modanfinil? Or a lower dose of the modafinil? There is also a post, that has some suggests to improve wakefulness without stimulants (amongst other things): http://narcolepsynet...oing#entry22345



#6 doinmdarndest

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Posted 26 February 2013 - 11:22 PM

severely limited awareness now happens to exsist as to how true or false the beleif that titrating up in succeeding doses so as to ramp up the doseaging  to counteract a diminishing response and keep its prescence consistent over the long term is impossible as happens now to be held as true nevertheless remains as unknown as the objective quantification of this is not had by medical science.   

 

the factual basis now exists for this to be disproven, insofar if it is but truth be told here both by me and accurate in my conclusions thereof that by simply having the ability to be granted the dose i see fit happens to be possible as if i were writing the rx. 

 

therefore, i can in fact be living proof that an asymptomatic status may be possible over the course of a lifetime.  or at least to the age of 51 (52 4/28). 

 

just as if i wrote the rx myself i will further explain later no, i'm not a simulant abuser mslt=2.18 min. onset lat., 7 min REM. GOT 2 GO 4 NOW. any ?'s



#7 doinmdarndest

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Posted 27 February 2013 - 02:03 AM

o.k. folks i'm back.  (in f/u to previous posting)  simply put, any doseage increase asked for denied us by our md's, or, as in my case, not possible to expect be granted, is a thing that we ourselves are easily able to do ourselves if/when any given one of us pwn are if willing to choose this MOST STRONGLY INADVISABLE and IN NO WAY SUGGESTED NOR CONDONED in this post treatment option just as i have been for years. what it amounts to is simply titrating up to therapeutic levels by using the equivalent in methamphetamine our md does not provide for whatever reason. 

 

this has my mg/d adderall+ gen.desoxyn NUSP @ approx. 450-500 mg.  after the most thoughrough possible attempt to learn in anonymized forums of the other pwn with a 300mg/d adderal rx or anything in that range has left me to find that in all probability my own case is unique in terms of a successfully maintained response for about a decade in consistenly maintained doses most difficult to derive mg/d amt. @  the beginning a ballpark figure mg/d amt 250-300, ramped up to the amt. as of    some time in the near future it is likely, or perhaps only remotely, possible research in terms of a case study may be conducted.  this factor can expire altogether at any time and, in fact, will. (al least according to murphy.)  and insofar as his law in the aftermath (of my illegal meth supplier getting 'busted") leaves medical research at such a horrible loss. 

 

That is, in fact, if the only known POSSIBLE case of a human tx w/meds in question as may happen to exsist so as to have, as of now, w/asymptomatic status of eds/fatigue as possible to maintain as proven on an objectively quantifiable basis IF HIS DOSEAGING WERE POSSIBLE TO HAVE BEEN GIVEN 9 YEARS AGO IN A CLINICAL SETTING. THOSE OF YOU HERE w/access to this feild or happen to be in it i request a "stat" initiation of this for the next nine as soon as possible.

 

and lastly, i might discourage anyone from attempting this w/STANFORD.  as it happens, i already have and also am aware the cessation of n. w/o c. research there has been as dormant for quite some time,  perhaps in terms of a more rigorous subjective dx porcedural guidlinig standard of their own (no objective dx exists for n w/o c) and simple most clearly worded encouragments for this to be undertaken there.  and the office of the director condemmned my dx in an evaluation w/ "we would not advocate using stimulants in the amts. you are prescribed" as my reply to a request sent to dr emannuel mignot, an evaluation ordered to determine the medically sbstantive aspect of an increase to adderall 450 mg/d i requested of my rxer, not the 300 in exsistence.  i invite all to consider this and to draw your own conclusions, and as you do had the 300 sufficed i would still yet have as all i know of stanford.......was they play the bears in the big game OMG im a bears fan, now.  i'm going to the next big game!! if i can.  rooting against any player w s on jersey then shall appear to all there as school spirit in the extreme, and can only be most therapeutic 4 me/wife stanford did not acheive normal standards of excellence.  not even close.