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doinmdirndest, December 5, 2013
Posted December 5, 2013
all is well.
I'm VERY happy for you.
Relax for a bit please and take a deep breath.
Posted December 6, 2013
I am glad you are relieved
thanks, i'm on day 1 of 8 days in tahoe. i don't ski but might pop the c note for the heavenly pony slope 1rst time ski pkg., anyways it's going to let me unwind and let my body heal from 'GRDW' -acronym we have for 'gruelimg roman death work', my stock and trade. no GRDW light, supreme, or just regular grdw for 8 days.
interestingly, i am able to reduce my mg/d adderall if not working. never kept track excactly how much less i need. it's not much.
i think my fears were not well founded. the md's 1 ? 'how long have you been treated w/aderall? 'since '03, upwards titrations to 300mg/d as 0f 6/10, continued (wisely) by 2nd md @ 270mg/d beginning in'11' my answer.
looks to me the longer you get an extraordinary rx, the less extraordinary a decision it becomes is for a new md to continue it, and 1 had done so already.
Posted December 13, 2013
I'm so glad you found someone willing to work with what you KNOW works for YOU! Perhaps you can give me some tips...I got an appointment first thing Monday morning- hurray!However the dr who has been fairly reasonable over the years did leave a message today that I'm maxed on stimulants and he won't increase. Compared to your dose I've barely scratched the surface! I'm on 2 30 mg tablets a day. What advice do you (or anyone else who wants to chime in) have for what I can say to help persuade him to be more considerate of increasing dose ? I do have some ideas, but looking for input. Thanks!!!!
Posted December 14, 2013
obtain a copy of PHARMACOLOGICAL ASPECTS OF HUMAN AND CANINE NARCOLEPSY by dr Emmanuel mignot and seiji nishino. there is a section recognizing the need for high doses (of stimulants) in some EDS sufferers, on pg. 38 or so. it cites doseaging examples even higher than mine.
give a copy to your md; it may be helpful to highlight or underline the relevant info.
the article may be downloaded for free in full text form, on the Stanford website.
state your case in very few words.
adrenaline from 'crunch time' situation (your doctor visit) can closely resemble your being stimulated enough on your present regimen (causing your md to decline your request), you should appear tired if you can.
I really object to your last statement. I think you are crossing a line. It is unwise to be dishonest with your physicians in order to obtain higher doses of medication. Appearing tired when you are not? PWN have enough to deal with - undermining the veracity of our symptoms is not something that will benefit anyone.
"adrenaline from 'crunch time' situation (your doctor visit) can closely resemble your being stimulated enough on your present regimen (causing your md to decline your request), you should appear tired if you can."
I think you are a good hearted guy. I am glad for you that you have found a sympathetic MD.
I am in opposition to coaching tips for a less than honest approach to our healthcare.
picture this: in 1 month's time you shall be either granted or denied the ability to do you job, do your chores at home, even to converse with your spouse. this will be determined by 1 individual, over whom you have no leverage whatsoever; all you have is how well you can express the fact that you need access to, or greater access to, a simple, low tech compound that happens to be a schedule II drug. next thing you know, the 1 month has become 3 weeks until you must successfully negotiate for that on which all else depends. then 2 weeks. then 1.
in the interim you play out in your mind's eye the dialogue as hoped to transpire by yourself. perhaps you discuss with your spouse possible negotiating strategies. perhaps you find something here.
next, 3 days are left. then it's tomorrow. then today. all the while your EDS is with you, as always, impairing your thought and your performance in all things-the very reason you are out to obtain an upwards titration of your stimulant.
the waiting room: time slows to a crawl. "the doctor will see you now".... next thing you know, you aren't tired in the least as you are fully aware you must convey successfully, now or never, your request. there is no appeals court in health care.
all your well rehearsed points come out, you substantiate your claims well. but as you reflect upon it in the aftermath of your being denied your request you remember yourself just talking up a blue streak...NOT YOURSELF AT ALL, you normally don't have the energy to talk much at all.. and you realize, too late of course, that you have deceived your MD into believing your EDS is fully treated.
and it's not. nor will it be. because you f.'ed up, in this way.
so you see, I'm not advising how to deceive. I'm advising how not to deceive inadvertently.
it's actually a good idea to abstain as much as possible from your wakefulness promoting rx the day you discuss upwards titrations of same with your MD.
very importantly at the time of your visit and always, your blood pressure must not be high. hypertension is the most significant contraindication with stimulants. delay discussing increased doses until your next visit if you have high blood pressure now.
discuss your antihypertensive regimen instead. this paves the way for responsible upwards titrations of stimulants.
lisinopril works for me.
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