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I Got Adderolled Today


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#1 Chemist

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Posted 19 December 2013 - 01:47 AM

So I'm coining a new phrase today: To get Adderolled

Definition: To be treated by medical staff with a heightened amount of skepticism or taken less seriously due to preconceived notions about Adderall or its users.

Example: "Man, I really got Adderolled by that doctor today! What a waste of time!"

 

Today I saw a physician for some health concerns that were significant enough to merit a referral. After discussing my situation and being quickly looked over I was told there probably wasn't anything clinically significant going on. Fine, I'm willing to accept that as a possibility, even if the conclusion seemed to be reached unusually quickly. But after asking a couple of questions it became readily apparent the person in question had simply attributed the issues to Adderall usage or dismissed them out of hand as something an Adderall user would likely exaggerate for some reason, perhaps to get more drugs, who knows.

 

The real kicker came when I was told that I should try quitting Adderall and just exercise more, and that I would feel much better then and these issues I'm having might simply go away. Now that's a riot.

 

To their credit, they admitted they didn't know much about narcolepsy or Adderall, and as a specialist they probably aren't interested in anything that isn't directly related to their area of practice anyhow. That being said, it takes less than two minutes to get enough information on narcolepsy to know it isn't curable through exercise, nor does being off medication help matters considering I was "living" that way for many years previously.

 

Needless to say I wasn't in the best mood walking out of that office. Particularly because it seems that more often than not I've been treated differently, and not in a positive way, ever since I was slapped with a diagnosis of narcolepsy and handed a bottle of Adderall. One recurring theme has been physicians telling me I might have a psychological issue contributing to my symptoms, and psychologists/psychiatrists telling me that's absolutely not the case and telling me my symptoms are due to a medical issue and that I should consult a physician. I'm like a human ping-pong ball. Maybe one day I'll find someone who isn't interested in simply knocking me into someone else's court, but today was not that day. Bummer.



#2 Hank

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Posted 19 December 2013 - 11:15 AM

Thank you for writing this- If I had to ask someone to write the perfect post for me to read today this would have been it.

 

I am fine with physicians not knowing about Narcolepsy or Cataplexy- I am not fine with being treated dismissively because it is not worthy of their understanding.

 

The neurologist who misdiagnosed and treated me continually told me to get more exercise, even though I was already a runner. So, it trained for and completed a triathlon and still felt like &%!#.

 

I have been accused of being a drug seeker because I "self reported" an improvement in symptoms with Adderall, but did not meet the criteria for ADHD.

 

My Cataplexy has been questioned as a "conversion disorder" or "emotional reaction".

 

One specialist says depression and anxiety  are co-morbid conditions. Other specialty says they are side effects of medications and the struggle of bearing up under symptoms of N and C.

 

It is a challenge having an illness that has symptoms which overlap with so many others. It feels like a game of pin the tail on the symptom with everyone latching on to what is most familiar to them. "Why don't you just" is my red flag that the person I am speaking with is dangerously clueless.

 

"If all you have is a hammer, everything is a nail"



#3 sk8aplexy

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Posted 19 December 2013 - 01:23 PM

Can totally relate, although in an odd way. 

Being treated like "a human ping-pong ball" especially after receiving the diagnosis, I can completely relate to.

What is a bit odd in my case, is that for the most part (90%) of the time I actually have gone in 'not seeking' meds what-so-ever.

Instead of not wanting to give me meds, they tend to try an practically force them on me, and in not light manners.

 

I loved being cut off (by the neurologist I describe below) while explaining how the severe Cataplexy I experience has influenced me to be very much anti-social and cautious, as such is necessary in many interaction/al circumstances; with "do you have much anxiety."

 

A somewhat related, rough, story.?

At first, when I sought confirmations of my having Narcolepsy with Cataplexy (knowing Cataplexy was what I had, due to the obvious and thanks to the internet), was when I got spun in a deep ringer, for a long while.

It was a neurologist who 'fronted' as though she knew so much, when she knew near to nothing about Narcolepsy.

Each visit, I explained I'm only seeking confirmations and am uncomfortable with the medications for reasons of side effects and my previous negative reactions/experiences with the meds. 

She finally says "come back in 6 weeks ready to take the meds or we'll have to discuss further actions..." (that was my last visit with her before going to Mayo Clinic - 16 hours away). 

At that appointment, I decided I'd ask her about Hypocretin/Orexin (I like knowing to some extent, what I'm dealing with, and being able to have a back and forth in depth with doctors, to some minimal extent if possible). 

Specifically I asked;  how with, the severe Cataplexy I'd been having, a lack of Hypocretin (a.k.a Orexin) must directly relate..? 

Her response of "what is Hypocretin, you should not read on the internet, it is more often wrong than right"; resulted in my jaw dropping along with a giant sigh/gasp of air, while staring at her quite blankly.

 

The entire 6-8 months with her, she'd been on the, it must be related to Sleep Apnea kick, since my first Polysomnography showed a 'minimal' Obstructive Sleep Apnea matter (eliminating the next day scheduled MSLT), which within a month of the first Polysomnography, two more were done along with me having 2 breathing machines and finally a Central Sleep Apnea diagnosis was given (changed from the original Obstructive Sleep Apnea). 

The entire time I'd been questioning both her and the sleep lab to, "why do I have -0- Obstructive Apneas and only what appear to be Central Apneas." 

The worst part, was my Cataplexy had escalated in a way I'd never experienced in my life, over the 9 months I used the CPAP, BiPAP and mostly a VPAP ASV, prior to I'd collapse 5 times maybe a month, but by month 3 of the 9 months I was collapsing 5-20 times each day; the neurologist was not 'hearing nor listening to me'... 
Upon Mayo Clinic confirming that I had Narcolespy (which was the only thing I sought from the beginning), they agreed that I was not benefiting from the machine, and I got off of it (which I'd of done regardless of opinions at that point, it was causing many other ENT and migraine ordeals for me).  Within a few months my Cataplexy regressed to around 5 times a month. 

Now, a few years later and between, a year and a half to two years, of being Gluten and Dairy Free my Cataplexy has basically disappeared (besides for occasionaly 'minimal' occurrences, like a slight droop of the head).

I'm thankful that is over, and quite content now, yet I'm still very much a hermit / anti social fellow.



#4 Ferret

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Posted 19 December 2013 - 03:02 PM

I truly sympathize. The three of you are GUYS...now imagine being female and being told all of your life that it's "all in your head". That's why I haven't been to a Doctor in 25 years. You can only take so much.
More later...it's nap time.

#5 IdiopathicHypersomniac

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Posted 19 December 2013 - 03:03 PM

Hard to say because you haven't really said what those medical issues are, or what kind of doctor you saw.  If he/she is just a GP and has never seen you before, they may come to the wrong conclusion.  Put yourself in their shoes -- they see tons of patients.



#6 Hank

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Posted 19 December 2013 - 03:58 PM

I truly sympathize. The three of you are GUYS...now imagine being female and being told all of your life that it's "all in your head". That's why I haven't been to a Doctor in 25 years. You can only take so much.
More later...it's nap time.

Well I guess it would be more accurate to say "it's all from your brain" not "all in your head. Especially 25 years ago, the female/histrionic assumption must have clouded opinions.

 

I think you have a very good head on your shoulders to have not believed what was said. At least you avoided wrong treatments and wrong diagnoses. I wish I could say that.



#7 IdiopathicHypersomniac

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Posted 19 December 2013 - 05:41 PM

I think there's too much doctor bashing here to be honest.  We criticize others for not understanding us, but at the same time we don't try to understand their point of view.  Put yourself in their shoes for a moment -- hundreds of diseases with overlapping symptoms, and strict protocols/decision trees that must be followed.  Tests that aren't really all that accurate.  Then they see hundreds of patients.  True, most may not really understand what narcolepsy feels like, but we don't understand how difficult it is to be a doctor.  It's impossible for them to diagnose everyone 100% accurately on a single visit, or even across multiple visits.



#8 sk8aplexy

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Posted 19 December 2013 - 06:18 PM

Can't even begin to try an imagine 'being a doctor'; at least in this day and age.

100 years ago, there's no comparing, even 20 years ago is hard to compare to though.

The systemics and underlying madness within it all, that seems to go in near endless directions, is entirely out of hand.

Understanding their point of view doesn't necessarily do a thing, to make me feel better about it; I do hear what you're saying though and agree to a point.

Pharma, patient quotas, drug quotas, time limits/restraints, plethora of bad research and/or conflicting information, endless similarities or directions and endless labels/diagnosis, law/court guidelines, insurance/money/profit madness, limited quality assurance but overwhelming regulations/guidelines...

I've had some good and some Bad doctors.  I've got nothing but Thanks and Respect for the good ones, then frustration and bad taste from the bad ones...

I'd not be here if it weren't for the few good ones that I've had, but I'd also be in a much much deeper hole if I'd not kept my head up when in some seriously dirty waters (offices).

Honestly, in ways I feel that having had Narcolepsy with Cataplexy has, through years of having to familiarize/recognize/adjust and learn how to gauge/cope/deal with so much, it has brought me closer (than perhaps without ever dealing with such) to my own; call it gut, instinct, subconscious, whatever. 

I definitely don't have the solutions for the masses, I'll say this though; there is no rule book and there is no book nor paper that fits all, it's too bad the entire system of each one individual/ly is not more appealing and looked at rather than all these so called specialist/ies...

 

-hope I've not dug into any ones skin here, not my intent nor desire-



#9 IdiopathicHypersomniac

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Posted 19 December 2013 - 07:35 PM

Doctors should also read ... A Taste Of My Own Medicine: When The Doctor Is The Patient.

 

Doctors have told me they realized what jerks they were when they got sick and were on the receiving end of that same treatment they dished out.  My own sleep specialist and his receptionist both have sleep issues.  My own doctor refuses to use sleep meds and instead opts for cognitive behavioral therapy.  So I said to him, what kind of message are you sending to me when you yourself will not take the medications you prescribe?  Sometimes a patient can earn a doctor's respect by turning the tables.

 

But they have to become emotionally detached or they wouldn't be able to function and do their jobs otherwise.  They're taught that in medical school.  I know it doesn't make us feel better, but it helps to try and understand the other person's point of view.



#10 Ferret

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Posted 20 December 2013 - 12:23 AM

There are good Doctors, exceptional Doctors, really mediocre Doctors and a few bad apples. On this board, I calls 'em as I reads 'em...good, bad and ugly.

I want a Doctor who can say "I don't know but I'll find out", who will be up front about medicines and their side effects, who knows what happens when drugs interact and, more importantly, when you stop them. I would like a Doctor who, even though they can't see it or feel it or have it shown to them on an x-ray (or whatever) will acknowledge that it's not "in my head".

That last sentence would be referring to..

1) The Dentist who told me I was imagining the toothache until the root abscessed and I lost the tooth (age 10)

2) The family Doctor who told me that the chronic lower back pain was all in my head (age 12)...and I still have it but now know why.

3) The same family Doctor who told me that I was overreacting to menstrual pain every month (age 14)...needless to say, I LOVE menopause.

4) The three years I suffered with chronic appendicitis (age 24)...according to the surgeon it ranked as the most rotten intact appendix he'd ever seen and, for all I know, may still be floating in its jar at Scarborough General Hospital Morgue as a shining testament to that.

5) The three years I suffered with chronic frozen shoulders and pain until the shoulder blades started winging out...that got the Doctor's attention because he had dismissed my pain as in my head. A Naturopath suggested Magnesium supplements...that worked in less than two months to eliminate the problem.

 

So, you see, I haven't had great results with Doctors...and I haven't even gotten to the Narcolepsy and Cataplexy fiasco yet.

I have a very high tolerance to pain and I don't have a normal immune reaction (eg. normal but upper limit white count with appendicitis) to most things. I am not histrionic and probably too stoic.

The next Doctor I see will probably be writing my death certificate...

BTW, after 25 years, my hubby finally bugged me to have a whole series of blood work done. Everything (and I do mean everything) is smack dab in the middle of normal.

Pass the cheesecake.



#11 doinmdirndest

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Posted 20 December 2013 - 01:38 AM

the amphetamine isomers are misunderstood.  they aren't nearly as harmful for most people as their reputation, which most always precedes them, tells us they are.

 

and if you have medical need of them in order to function,  this reputation may become the bane of your existence.   particularly if you require higher doses to benefit from them.

 

...........I know, they don't have the indications/medical need and therefore they shouldn't, but most all doctors and medical researchers have never once experienced the effects of these drugs.   how can they have true insight into what they can and cannot do, or in what amount they are effective?

 

it is unfortunate we who benefit from Adderall and other such drugs have no representation to speak of. 

 

maybe we should somehow organize.

 

and an excellent change for us to pursue, that would only have a positive impact for us as a group, might be the reclassification of the amphetamines from their present status as schedule II drugs to schedule III, perhaps IV. 

 

any problem this may create, if indeed a problem would be created, is not ours.  as we know, we do not have the propensities of drug addicts.  we only stand to benefit, and benefit greatly, I might add, from such a reclassification, were it to take place.

 

I have no experience with politics and have no idea how this can be made to happen.

 

maybe somebody here does?



#12 Chemist

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Posted 21 December 2013 - 04:54 AM

I hope my post didn't come across as "doctor bashing" as that's not how it was intended nor did I hope to inspire any such thing. I was merely frustrated by the experience, as I'm sure any normal person would be. You would think that being able to understand relevant medical literature, know how medications work, etc. would pose some advantage since it allows me to have a conversation that approaches what two physicians might be able to discuss, but I've found the opposite is more often true. There have been three people involved in my healthcare at one point or another who have been an absolute delight to work with and are more than happy to engage me in "big boy" dialogue. In every other situation it's been detrimental and it always comes down to attitudes and egos. Some individuals who are used to the flow of information being very much one-way become staunchly defensive if too many questions are asked or too much information is contributed for consideration. I did actually put my foot down at one point and stopped seeing one individual in particular after I was told politely but in no uncertain terms that I was very intelligent and I had all sorts of wonderful information but that I was far too concerned with my own health and should seek counseling. I politely nodded and said I understood what they were saying and waited for the conversation to end without making any further remarks even though it was probably the angriest I had ever been in my entire life. I just kept thinking to myself how if I hadn't started paying more attention to my health, I never would have been diagnosed with narcolepsy, allergies, anything. I'd still be sleeping my days away assuming I was just a lazy excuse for a human being. Talk about depressing.

 

I don't recall who it was but someone on this forum was mentioning how narcolepsy taught them sympathy and kindness towards others. It definitely has for me too and that's one of the things I can be thankful for. I don't intend to be a physician, although I will likely be counseling patients at one point or another, as well as consulting with physicians (hah!) You can be sure I won't be bringing an uptight or higher-than-thou attitude to the workplace. I'm upfront and far from having a "bubbly" personality, but I'm also exceptionally cooperative, friendly, and most importantly I'm willing to accept that I'm wrong. From all the physician horror stories I've read, the main issue doesn't appear to be incompetence, the issue is attitude. Unfortunately, medical school can't really teach you to be a better person. A person with a bad attitude entering med school will probably have the same bad attitude upon graduating. That's my opinion, anyway.



#13 Hank

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Posted 21 December 2013 - 10:12 AM

I very much agree with you.

 

I come from the perspective that people always do what they believe is right. Even a guy robbing a gas station believes he deserves the money.

 

I think our experiences and unique challenges leave us wide open to misinterpretation. Here is an example:

 

- In 2012 I was on 13 different medications. Side effects and interactions were being treated with more medication and I became a mess.

- I sought out second opinions with new doctors in order to start fresh with less medication.

- Suddenly, I had become a "doctor shopper". Doctor shoppers go from doctor to doctor looking for the answers they want to hear and asking for the medications they want to take. They tend to be people on a lot of medication.

- My intentions were actually the opposite of a "doctor shopper" but my actions (out of context) fit the profile of a doctor shopper.

- I am now on only 2 medications with a good medical team, so I no longer fit the doctor shopper profile.

 

I think doctors are in an unfortunate position of having to make an assessment of each patient quickly. They have great confidence in the accuracy of their assessment. Mix that with an "I've seen it all" attitude and you get arrogance.

 

- Doctors want to see patients who believe what they are told and do what they are told. Patients who do not are called "non-compliant".

- Many of us have learned through bad experiences that we cannot trust everything we are told and are cautious with new medications. We can easily appear to be "non-compliant".

 

I think it is a big challenge for all of us find a way to get the right labels and avoid the wrong ones. We are going to be labeled - that is an unfortunate fact of life.



#14 Ferret

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Posted 21 December 2013 - 12:18 PM

Be true to yourselves guys. Neither of you is lacking in intelligence but ;) you don't always have to colour inside the lines either.
I like to think outside the box 'cuz I'm claustrophobic...or at the very least, I find the current conventional medical thoughts stifling and the shovelling of pharmaceutical drugs terrifying....mho of course. YMMV.

#15 sk8aplexy

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Posted 21 December 2013 - 01:55 PM

I feel that a closed mind is unconscious and an open mind is conscious...



#16 engineerman9337

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Posted 23 December 2013 - 06:25 PM

I don't consider it MD bashing. It's actually a by-product of the paranoia instilled by the DEA (with help from the media) within the community of Pharmacists, MD's and health care in general.

   These communities of professionals became erstwhile posse for Law Enforcement in the 1970's, which led me to an over-the-counter alternative from 1980 - 2006, ephedrine. Ephedrine, as I understand the chemistry, has one more oxygen atom than desoxyephedrine aka, methamphetamine. ...long story short, I discovered the efficacy of ephedrine and kissed the doctors, the DEA, the Pharmacists - that whole genre of aggravation - good-bye.

   For 26 years. I paid a price, probably (Long story for another day). It was a trade off. I'm 64 now, but in pretty good health, been back on prescription N meds 6 years. ...got immensely frustrated last year with a Parm Tech at a Walmart who assumed I was one of the drug addicts he'd been warned about. I'm sure many of you can identify...they give you the look over the top of the glasses, "I'll see if we have this in stock...", then like Santa laying "his finger aside of his nose" he walks way, but is back in less than time than the Jolly old guy takes to get up the chimney. "No,we don't carry this!" Yeah, right. His boss just told me the month before, after a similar scenario that this would never happen again.

    You know, after all the other bull, passed over for promotion, lay-offs, firings (and of course it can't be proved they are discriminating)...jobs I can't even apply for, not being able to stay awake to do homework and giving up on education; I don't fraternize because, well people think I'm a joke. Stigma. They read about the meds, they see PWN as the butt of a joke in the media...I had 2 Resident MD's in a teaching hospital (in the 60's) suggest that I tell them about my experience having sex (Which I hadn't had because I was afraid to date after falling asleep on my first date) you know - do I go cataplectic when I ....  and smirking.

    Universally, it is a truism - "it takes all kinds". Doctors, cops, PWN - collectively, all are amalgams. From capable, through adequate and to the inept. ...and, from my observation, no one is a permanent resident at any one stratum.

    No, I don't see this as MD bashing, it's just that for the sake of this string - it's their turn.

 

By the way, the Walmart Pharmacy - a few months after the event I reported, there was an interruption in the supply, but they arranged for me to be serviced by a competitor. Then they went out of their way to order the dextroamphetamine out of their normal supply chain, so that I would not be inconvenienced again (for now) :) . ...and phoned me to let me know that when I was ready, they had it put aside. 



#17 doinmdirndest

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Posted 24 December 2013 - 12:46 AM

I would like to address the group with a proposal in the matter of how our medications become available to us.  in the last analysis, pwn as individuals are most often powerless in this matter.  it's a non-issue if you are happy with how your doctor is handling the treatment of your symptoms.

 

if this is not the case, there is nothing you can do, except replace the doctor and this can take months, even years   IMHO, this is not as it should be.   

 

some here and elsewhere have the same sentiments.  we've heard suggestions regarding precisely what laws/rules should be different.

 

here are two:    

 

 one idea is ferret's proposal (found in other threads) that waiviers be made available which, once one of us signs it, allow our MD's to grant a patient an allegedly, or potentially unsafe (and these days, anything not 100% 'idiot-proof' = unsafe) stimulant regimen w/o any chance of a malpractice suit or other negative impact on their career if the rx has a negative result.

 

I've also made a proposal here.  it suggests the rules be changed to allow for a  'deputy MD' status our MD's could grant us.  passing an exam on the doseaging of stimulants and other relevant criteria could be a part of the process.  thereafter, the sole MD empowerment a patient thusly 'deputized' would have would be that of determining the correct dose of his or her stimulant med.  regular MD would nevertheless 'supervise', and 'veto' such a self prescribed regimen were contraindications to develop.

 

here's my assessment of the two, and of the overall status of the matter at hand:    

 

seems to me ferret's idea is a better one than mine as it is the simpler approach.  

 

i can't be certian which is the better proposal.  if anyone here believes they can, it would be good to have your perspective.

also, we need to hear more regarding how the goal of patient's having more control over their treatment may be reached.  the best proposals may be yet unheard here.

 

  we as individuals really could benefit from a bit more say over our own meds, could we not?  IMHO, we ought to stick up for ourselves as a group in the way minorities did, and the way women did, and did successfully. 

 

@chemist: thank you for the new term, on behalf of all who have been 'adderolled', including me.