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Physicians With Narcolepsy (And Cataplexy -/+ Accompanying Brief Episodes Of Cognitive Impairment Associated With Micro-Sleeps During The Day).

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#1 jpsmith8488

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Posted 06 May 2013 - 09:58 AM

I am interested in hearing from any medical doctors who have narcolepsy, with or without complicating factors as mentioned above). I have specific interest in how physicians manage to remain in active practice, how many have chosen to retire prematurely as a result of their diagnosis, and how long it took for them to recognize that their symptoms represented narcolepsy.  I am developing material for a paper I wish to write on this subject, for which I have found no relevant literature references. Thank you.



#2 DeathRabbit

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Posted 06 May 2013 - 11:22 AM

I've not heard of this before. I imagine, unless it develops later in life after a comfortable practice is already established, many PWNs simply couldn't put up with the rigorous med school stuff, as well as the internships where you pull 24+ shifts sometimes, are almost always on call, etc.I know there's a few RNs that have posted here, so perhaps they could give their perspective at least. It would be nice if some of the sleep docs were also PWNs. No matter how well educated they are on the subject, they just don't seem to "get it." I saw a sleep tech talking about how Narcoleptics can always fall asleep instantly on a comment thread one time, and I politely told her she was full of crap and posted a bunch of statistics on how N is often misdiagnosed as insomnia, because of disrupted or somrtimes even inverted circadian rhythms.



#3 doinmdarndest

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Posted 06 May 2013 - 02:10 PM

d. right, and if you meet them on their own turf and cite medical articles relevant to your dx/tx, md's have been known to just ask you not to bother them any further.

 

this happened to me when i brought up an article by dr mignot (director of stanford sleep in redwood city, ca)  that contradicted his office's (he never replied to my emailed inquiries directly, yet i'm sure he must've told his assistant* what to send) position on my 300mg/d adderall rgimen.  i was given no explanation and i was told to send nothing further.

 

as this is unnacceptable i have sent succeeding inquires.  most often they have been courteous, relevant and succinct.  as for the rest, there is but so much a man can take.  when my eds goes untreated, my wife is just despondent.  she's had 9 suicide attempts.  i had anyone @ stanford i met when i was there quite clear on this factor.  and on the fact that she is a fragile person.

 

only dr ruoff, who attended me, did right by me there.  he's a good md and a good person.

 

my wife and i had a very, very bad experience w/stanford sleep.  we're not so far from cal berkely, we're going to attend the next cal berkeley hosting of stanford in the big game, in '15.  this for us will be therapeutic particularly if stanford loses.

 

we will root awful hard for the bears.  or more specifically against stanford.  we normally have but a passing interest in football-although i find it truly great.  like chess w/full contact component.  most ingenious game ever played.

 

*i will tell the story in the 'this has nothing to do w/n...' section.  it might be good for a laugh.  poor mali einen.  she is a nice lady i regret the way i replied when at first she remitted to me dr mignot's position on my regimen.   both these people have done much good for pwn.  why they did so p. poor w/my case i am never to know.  it's not my fault.  i know that.  have put long thought to it, too.



#4 NetiNeti

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Posted 06 May 2013 - 10:45 PM

The guy in this article is a narcoleptic and a doctor. 

 

http://www.nytimes.c...ef=general&_r=0



#5 allisonG

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Posted 16 July 2013 - 12:17 PM

I am a doctor with narcolepsy. I am in my first year out of residency and finding life to be very difficult. You can ask me questions. I haven't found many other doctors to talk to figure out how they manage things.



#6 Hank

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Posted 16 July 2013 - 12:31 PM

I am a doctor with narcolepsy. I am in my first year out of residency and finding life to be very difficult. You can ask me questions. I haven't found many other doctors to talk to figure out how they manage things.


You deserve an enormous amount of credit for your accomplishements.

I knew a doctor (who later retired and is now deceased) who had N. I am still in touch with his nurse. He was a good doctor and relied heavily on good nurses who helped him manage his schedule. He maintained a solo FP practice for years and had a very loyal staff.

I am curious what specialty you have chosen and what type of practice you are in.

I am sorry that you are experiencing difficulty. Clearly, you have found some significant ways to manage your symptoms and compensate for them. If you are interested in sharing any of your strategies, they would certainly help others here.

#7 jpsmith8488

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Posted 16 July 2013 - 04:12 PM

I am a radiologist with narcolepsy and cataplexy, and admire your determination to pursue your goal of practicing medicine despite having narcolepsy. My condition developed once I had entered practice and was not a problem during my residencies. I think it would hard to find a workplace more hostile to a patient with narcolepsy and cataplexy than radiology. We sit in little offices by ourselves, in the dark with only the swoosh of the air conditioning as background, reading study after study from 8a.m. to at least 6 or 7p.m., while our productivity is monitored in real time by staff in our quality assurance department to be sure we are meeting our daily work quota, and frequently going for hours without interruption such as a knock on the door or a phone call.

 

As my disorder progressed, I would find myself developing the irresistible urge to sleep that if ignored would find me face down on my keyboard with the GHJKL keys indented into my face. As the disease worsened I found that I had to take longer and longer to complete my daily quota until I was taking 12 hours to do the work that I used to be able to do in 8 or 9 hours. All of this occurred before I knew that I had narcolepsy and cataplexy. I could go on but I would like to return to your situation. I would be glad to share any ideas or suggestions from my experience, if you would like to be a little more specific in how I (we) can help. I will be glad to provide you my office phone number if you wish to talk, and suggest that if you wish to pursue this option that you send me a direct message.

 

I too have found only one other MD with narcolepsy. I did a calculation based on the prevalence of narcolepsy in the US population and the number of licensed physicians in the US, and within a reasonable margin of error there are around 50 of us, even fewer if we ask how many actively practicing physicians rather than licensed physicians. If I estimate that if half of the physicians licensed are actively practicing, then there would be just 25, and that probably overestimates the true number because I suspect that some of these affected physicians would be too impaired by narcolepsy to be in full time practice.

 

One suggestion is to be sure that you discuss narcolepsy with your program director. I believe that residents are considered to be employees rather than students and as such you have a disability that puts you into a protected class of worker. This was my experience. As such, the employer must make reasonable accommodations for your disability. This is best done in conjunction with your sleep doctor or neurologist and the residency program director (and of course HR). I would definitely not try to keep your situation to yourself to avoid misperceptions and situations that set you up for failure.

 

With best regards and wishes for your continued study of medicine,



#8 NetiNeti

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Posted 16 July 2013 - 04:16 PM

I am a mental health counselor. My narcolepsy continusly got worse in college and graduate school. As everyone else has stated, reach out for help. You can do it.



#9 Ferret

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Posted 16 July 2013 - 10:09 PM

The guy in this article is a narcoleptic and a doctor. 

 

http://www.nytimes.c...ef=general&_r=0

 

Good article. He intimately understands the importance of sleep deprivation but didn't get into what could cause a lousy sleep other than the number of hours spent sleeping.

I really wish that sleep studies had been done on the children of The Southampton Study (published in The Lancet but I can't find it) both BEFORE and AFTER the administration of the drinks. A missed opportunity.

  

http://www.allergyki...-dyes-uk-style/

 

http://www.southampt...apr/08_65.shtml

 

As a former Registered Medical Laboratory Technologist who worked in Microbiology and Chemistry, I took myself out of that work force at age 35. Lack of concentration causes mistakes and mistakes cost lives. I was not ever going to put myself in that position.



#10 allisonG

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Posted 19 July 2013 - 09:09 PM

I am an attending in internal medicine. My practice has one other physician (who is retiring next month) and one PA. We are brining in a new grad August 1st. This means the PA now becomes "mine" so there will be more work than there already is. So I imagine that life is going to be worse before it gets better.

 

I was very up front about my diagnosis when I was hired. I see a sleep neurologist at an academic hospital, my first appointment was suppose to be my first day of work. They are aware my disease, just not how much it is affecting my life. They can see that charts are getting done, but they don't see me working all night still not accomplishing all the things I want to do.

 

My symptoms first started in college. I never even recognized that something was abnormal until after medical school. I figured everyone else was just as tired as I was. It wasn't until I started falling asleep eating or having sleep attacks that I was unaware that I was sleeping.

 

I'm tired of being tired.



#11 SleepyResearcher

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Posted 09 August 2013 - 11:10 PM

I am just starting my PhD in behavioral neuroscience studying sleep.  Needless to say, after going through a masters program absolutely tired as *BEEP* every day, finishing my PhD is going to be hard but I feel that I would only quit if they literally kick me out.



#12 ErDoc

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Posted 15 August 2013 - 11:45 AM

Hello,

I am a physician, board certified in emergency medicine for the past 25 years.  I have obstructive sleep apnea (OSA).  My diagnosis was delayed due to the early thinking that obstructive sleep apnea was confined to the obese.  I also training in the days when it was not unusual for interns and residents to arrive at 5am to review labs and other test results prior to surgery, clinics in the afternoon, and then on call all night in a busy trauma center.  This translated to 36 hours without much sleep every 3 days.   This actually leveled the playing field for me since everyone suffered from sleep deprivation in those days.  However, this also led to a delay in my diagnosis of OSA. My state of being was so improved after starting CPAP, the residual tiredness was thought to be due to not having completely normal sleep.  I was diagnosed recently with narcolepsy without cataplexy by MSLT. I had been having problems managing multiple patients over the past 6 years or so.   I would slow down my pace to avoid making mistakes and I was running out of work-arounds.  Neuropsychological testing four months ago revealed problems with cognitive set shifting (see Cognitive deficits in narcolepsy J sleep Res. (2006) 15, 329-338).  I look forward to starting Sodium Oxybate in the next week or two and getting back in the “Pit” as we call the emergency department.  If improvement is not great I will look for low paced clinic work. 

Looking through the retrospective scope, as we call it, I look back and see I had symptoms most of my adult life. I was able to compensate for years without treatment (though I always feel like I am putting forth 175% effort and it became my norm). Some studies indicate having high intelligence is helpful, probably by using other areas of strength (on a conscious and subconscious level) to compensate.  







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