premednarc

Doctors With Narcolepsy??

44 posts in this topic

I have scoured the internet looking for physicians, surgeons in particular, with narcolepsy and have been unsuccessful. I've always wanted to become a surgeon and was recently diagnosed with narcolepsy. I am a very determined person and have been able to push past this condition since HS and am just now receiving treatment with Xyrem and Provigil. I'm just wondering if any doctors with narcolepsy could give me some insight on how they made it through residency and all.

Share this post


Link to post
Share on other sites

I am a medical doctor with narcolepsy and cataplexy and have been treated with Xyrem and Adderall for about one year. I believe that if your symptoms are reasonably well controlled on medical therapy, and you are able to take the occasional afternoon 20 minute nap, you should be able to do as well in medical school as if you did not have the disease.

 

Regarding a career in surgery, you can choose to pursue training in one of the subspecialties of surgery that has shorter operative times. By the time you are in a position to enter a surgery residency program (immediately following medical school) you will probably find that a substantial amount of surgery will be performed in regional centers of excellence using a combination of robotic techniques and micromanipulators as the surgeon watches the surgical field on a 3D video monitor.

 

You should keep in mind that when you graduate from medical school and enter a residency training program, you will be considered an employee and as such your narcolepsy will qualify you as an individual with a recognized disability for which your employer will be required by federal law (Americans with Disabilities Act) to make reasonable accommodations for your limitations. In this scenario you would first be accepted by a residency training program and then once you have your acceptance in hand, then you could choose to disclose your condition to the institution's human resources department. That department would work with your department to make the necessary arragements to create an environment that is most conducive to mitigating the symptoms of narcolepsy.

 

We all can hope that with continued research, there may be better treatments available for us by the time you are ready to enter a surgery residency, perhaps even a cure.

 

I have every belief that you should be able to hold your own in medical school and in a surgery residency program. Being determined is a great complement to effective medical therapy for those of us with narcolepsy and cataplexy.

 

Best of luck

Share this post


Link to post
Share on other sites

Hi, 

 

I was diagnosed with narcolepsy during my first year medical school (onset was probably 10-11yo age). I had briefly considered going into surgery during my 3rd year med school, but ended up concluding that it would not be the right choice for me or for the patients. 

 

Obviously there were a lot more factors that went into deciding against becoming a surgeon; but an episode of cataplexy (which ended up making a scene since I knee-buckled as usual and fell off of the surgical stepstool) in the OR was the last straw. 

 

Having said that, I am NOT writing this to prematurely discourage you. It would all depend on the severity of your symptoms, the presence/presentation of your cataplexy, and how well-controlled you would be while on medication. I have definitely met an amazing cardiothoracic surgeron who has significant narcolepsy symptoms when off-meds. 

 

As for myself, I am currently half-way in my residency, doing tolerably well. I did have to increase the dose of my meds and take an extra med for 24+hr calls, and I do spend a big chunk of my free time sleeping.. but what resident doesn't, right? In fact, everyone in residency is perpetually sleep-deprived, I blend right in! ;)

Joking aside, I think being narcoleptic actually helps me adjust to the day/night sleep schedule change. A lot of my co-resident have difficulty falling asleep after night shifts, but it's not a problem for us narcoleptics to fall asleep regardless of time of the day (especially with Xyrem). And Provigil/Nuvigil tend to keep your mood up and bright, which always helps.

 

So far I have not had any issue with falling asleep at inappropriate timing, nor have I slept through a pager. I have disclosed my diagnosis to a few people in my residency that I've worked most closely with, and no one believed that I am narcoleptic since my symptoms are so well controlled. 

 

Bottomline - retrospectively, I probably could have become a surgeon even with narcolepsy. I don't regret my decision since I am very happy in my specialty right now, but don't discourage yourself preemptively. You can (and will) pull through it. 

Share this post


Link to post
Share on other sites

Hello,

I would like to share my story that may help you in your decision.  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 one month ago 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.

Based on (my) current understanding of narcolepsy and OSA, I have had these issues for years and compensated without treatment (though I felt like I had to put forth 175% effort. Therefore, with treatment you should do well.  Some studies indicate having high intelligence is helpful, probably because of compensation using other areas of strength (on a conscious and subconscious level).  That being said, I think if you are currently being treated and your symptoms are well controlled you most likely can pursue a career as a surgeon with some adaptation.  I cannot recall if you have the cataplexy component.  If you have the resources you might want to seek an opinion from the Stanford’s narcolepsy clinic or other large center that most likely has expertise in this area. 

Share this post


Link to post
Share on other sites

I once wanted to be a surgeon. I now practice outpatient internal medicine.

 

I knew I couldn't pursue a surgical career because of the confusion I get when woken up during REM sleep. There are nights from internship where I do not recall entire conversations with nurses. I wasn't diagnosed until the end of residency because everyone is sleep deprived. I thought I was just tired. Then I started falling asleep eating, or not remembering falling asleep. 

 

Surgery is a hard life, narcolepsy is a hard life. Both of them together in my head was not a feasible option for me. I need regular sleep. I need a regular schedule or my automatic behaviors increase. 

 

Will you be able to take zyrem while in residency/fellowship. Call will be a required aspect of your job. If you miss it on those days, how is that going to affect you? 

Share this post


Link to post
Share on other sites

I'm a second year medical student with narc, I am considering specialties with would be best for me, any suggestions for narc friendly specialties?

Share this post


Link to post
Share on other sites

I'm a second year medical student with narc, I am considering specialties with would be best for me, any suggestions for narc friendly specialties?

How about dermatology- outpatient- no rounds- no interrupted nights

Share this post


Link to post
Share on other sites

That's a good option. How about radiology?

Share this post


Link to post
Share on other sites

Hi all,

 

I'm in the last rotation of MSIII year and just got diagnosed less than a week ago. I've been doing poorly on shelfs and step 1 due to falling asleep during the exams - hence the visit to a sleep doctor. I am hoping to become at least somewhat better controlled with medication over the next 2.5 months before I take step 2, however I am very concerned should that not happen. Did any of you apply for accommodations during yours step exams, if yes what accommodations, and if not how did you manage to make it through them? Until now I have been attempting to overload myself with caffeine, but it obviously hasn't done me much good.

 

Thanks for any help.

Share this post


Link to post
Share on other sites

Wow, OK, let me join the crowd here.  I'm also a physician.  I got diagnosed with inattentive ADHD in medical school because I couldn't concentrate in lectures or when trying to sit and memorize things.  Oh, yeah, I was falling asleep really often, too, but I actually thought I was falling asleep because it took too much mental energy to try to focus, and that this was why the Ritalin helped.  Duh.  I did know that I was "sensitive" to shift changes and jet lag, so I traded off my weeks of night float in my internship year with other interns, who were happy to do it but thought I was crazy -- night float is much easier than the day shift, things are quieter -- but it still never occurred to me I had a sleep disorder.  I've never had cataplexy.

 

I completely agree with everyone else who says you blend right in as an intern or resident, everyone is sleep deprived.  I think you can still be an excellent doctor with narcolepsy.  But I encourage you to think about the future as well.  I'm curious what others think, but I know that as a middle-aged person (whatever that means these days) I don't cope with sleepiness as well as I used to.  It makes sense, since as people get older even non-Ns are more sensitive to lack of sleep.  So you might want to pick a specialty that is as flexible as possible with regard to your career -- eg, can be done either inpatient or outpatient, has moonlighting and locum tenems possibilities, etc -- so that if the narcolepsy gets worse, you'll still be able to work.  Of course, if you're at the top of the food chain in any specialty you can always set your own schedule, and there's something to be said for picking a specialty in which you can make a lot of money early on, just in case.

 

Derm would certainly be a great choice, lots of money, no call.  So is ophthalmology.  (There's a reason those two specialities are so competitive.)  Psychiatry is also good, less call and life-threatening emergencies on-call are rare.  Would be hesitant to recommend anesthesiology given all that sitting around, or radiology, where you sit around in a dark room all day.  I would imagine that pathology would be a piece of cake.

 

And margeepoo, if you survived Step 1 without meds, you can do Step 2 without any problem!  I think you'll find that you'll be great once you start meds.

Share this post


Link to post
Share on other sites

Margeepoo

 

The most important aspect is to work with your doctor(s).  If your sleep doctor is a neurologist he or she most likely will manage all aspect of your narcolepsy.  Do you also have sleep apnea?  Do you have cataplexy? If you have sleep apnea that would be addressed most likely with CPAP.  Once than is controlled Sodium Oxybate most likely would be added to regulate sleep.  Then a Stimulant medication (like Adderal XR or Modafinil) during the day may alleviate the need for test accommodation.  However, if needed I would ask for it.  

 

I would eat an apple very slowly with testing.  I guess luckily I also had sleep apnea.  My snoring would wake me up and the embarrassment helped keep me awake (keep in mind this was back in the late 1970's)..

 

I hope this is helpful.

Share this post


Link to post
Share on other sites

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).

 

Thought I'd attach the article.  I'd point out that the absolute differences between narcoleptics and controls are small.  But they studied narcoleptics at their best, on medications, and the problems are consistent with what I'm noticing as I've gotten older, and I'm only 15 years out, not 25.  As ErDoc says, intelligence is definitely what allows us to compensate.  The first two years of medical school (all classes, in my day) was ten times harder than college because intelligence made absolutely no difference -- you either had the information memorized, or you didn't, period.  And memorization requires sustained attention.  Once you're no longer a memorization automaton, you get to use the rest of your brains again and you can still be a great physician.  Plus, intelligence helps you develop all sorts of compensatory strategies.

 

But it does create something else to think about -- in your future career, how many sick patients will you be juggling at once?  EDs and ICUs require that sort of divided attention.  On the other hand, shift work can give you a chance to catch up on sleep on your days off, some people really thrive on it.

narcolepsy cognition 2006.pdf

Share this post


Link to post
Share on other sites

Going forward, it is my belief that well developed IT solutions that assist in gathering information from patients, provide decisional support, and data analysis will be a god send for doctors with narcolepsy.  Poorly designed or misdirected IT solutions are a disaster for patients and health care professionals alike.  Case in point ProMed.  ProMed is an Electronic Medical Record that CHS & HMA hospitals used.  It was touted as a system to help capture billing and had quality measures built in.  However, the executives at the two for profit hospital chains used it to boost admissions to their hospitals from the emergency room.  Their quality measures were designed to admit more patients but did not follow national guidelines.  Sixty Minutes did a few programs devoted to Gary Newsome a VP at CHS after he became the CEO at HMA hospitals.  If you have an interest in Greed in healthcare read this article:  http://www.prweb.com/releases/2014/01/prweb11480799.htm

Back on topic, Tonic is a new IT solution that is truly designed by and with health care providers to meet the need for better data collection, decisional support and efficiency.  Tonic’s web site is:  https://www.tonicforhealth.com/    I have no financial interest in Tonic.  However, I wish I did.  If I was starting my career in medicine at this point in time I believe finding an IT system that works well with the way your brain is wired will be one of your greatest assets.  You may not have options based on where you train.  However, when you choose a location to practice you will have options.

Share this post


Link to post
Share on other sites

Any pracTice owners out there have advice on whether or not to come out to staff?

Share this post


Link to post
Share on other sites

I used to have a small practice -- 2 docs, one office manager.  I had no idea I had narcolepsy then, but I knew I needed more sleep than the average person.  Can't imagine how I would have gotten by without my office manager knowing I needed extra sleep and being able to tell her that I'd be napping in my office and to hold my calls for an hour.  Using the term narcolepsy has a whole different set of risks, though, namely, the risk of disgruntled staff reporting you for bogus reasons to medical boards which may be stuck in the dark ages about what the diagnosis means.

 

I think it just depends on how visible it is to others.  If you might have cataplexy in the office, it could be handy to let at least some staff people know so that no one freaks out and calls 911, and you can always just call them "drop attacks" if you don't want to reveal your diagnosis.  If you just tend to take naps, you don't have to tell anyone you don't want to tell.

Share this post


Link to post
Share on other sites

Like Margeepoo, I'm wondering if any of you all have applied for testing accommodations? As I prepare for Step II, I keep wondering whether I should have applied for accommodations, but I'm not sure what I'd ask for anyway. I've never fallen asleep during a big test, but I can come close enough that it doesn't matter, I'm basically asleep anyway.

 

Personally, I wasn't diagnosed until half way through second year and didn't get (inadequate--less than half my current regimen) treatment until a month before Step I. People expected me to suddenly do awesome after treatment, but it's a bit tough when you essentially missed out on the first two years of med school... lots of lacking foundational knowledge. I probably, in retrospect, should have repeated second year (I did pass everything, but barely.)

 

Nice to know there are others out there.

Share this post


Link to post
Share on other sites

Never got testing accommodations, but I didn't know I had N.  I was already taking stimulants for what I thought was ADHD.  I fell asleep briefly on my 10-yr board recertification exam, but probably because it wasn't that hard and I wasn't very anxious about it.  I did fine.  You'll do OK.  Trust me, N or no N, you won't even be the sleepiest one in the room!   :D

Share this post


Link to post
Share on other sites

Hi, my name is Taylor. I received my diagnosis only a couple weeks ago -- just a few days into my 2nd year of medical school. The only symptom I obviously exhibit is EDS, which in retrospect began my freshman year of high school. Because I've never experienced cataplexy (in its typical form at least), I never seriously considered that I might have this disorder. To be quite honest, I'm still processing the news and what this means for my future. With my emotions still so raw I could probably write a novel about my experiences, my thoughts, and my fears. Instead, I just want to say thank you to all of the physicians and medical students who have posted on this topic. Reading your experiences, especially of those who have been able to survive residency and/or continuing practicing, has given me hope that my dream can still become a reality. It's also nice to know that the immense debt I already owe won't be for naught. 

Share this post


Link to post
Share on other sites

This is off topic.  However, I have a question that I want to present to a smaller group before I present to a larger group.  Did any of you have a period of time greater than one week in which you could not sleep prior to you diagnosis ( this could predate your diagnosis by years)? 

Share this post


Link to post
Share on other sites

Hi, my name is Taylor. I received my diagnosis only a couple weeks ago -- just a few days into my 2nd year of medical school. The only symptom I obviously exhibit is EDS, which in retrospect began my freshman year of high school. Because I've never experienced cataplexy (in its typical form at least), I never seriously considered that I might have this disorder. To be quite honest, I'm still processing the news and what this means for my future. With my emotions still so raw I could probably write a novel about my experiences, my thoughts, and my fears. Instead, I just want to say thank you to all of the physicians and medical students who have posted on this topic. Reading your experiences, especially of those who have been able to survive residency and/or continuing practicing, has given me hope that my dream can still become a reality. It's also nice to know that the immense debt I already owe won't be for naught. 

 

Hi Sleepy!  Glad we could be helpful.  Feel free to send a private message if you're ever too shy to ask something in public.  ;)

Share this post


Link to post
Share on other sites

This is off topic.  However, I have a question that I want to present to a smaller group before I present to a larger group.  Did any of you have a period of time greater than one week in which you could not sleep prior to you diagnosis ( this could predate your diagnosis by years)? 

 

Nope.  I'm not even sure I've ever had a single night where I couldn't sleep, let alone a week.

Share this post


Link to post
Share on other sites

This is off topic.  However, I have a question that I want to present to a smaller group before I present to a larger group.  Did any of you have a period of time greater than one week in which you could not sleep prior to you diagnosis ( this could predate your diagnosis by years)? 

 

My son has never had a problem sleeping - just the opposite - once the symptoms started he wanted to sleep 75% of the day if he could. I've heard that PWN can have insomnia. He doesn't have the classic symptoms, so maybe that is why? He has horrid EDS when not treated, but no cataplexy, HH, etc. and he isn't even positive for the genes. His problems started after a concussion. 

Share this post


Link to post
Share on other sites

My inability to maintain sleep is my chief complaint with Narcolepsy. I have cataplexy, which has its own challenges. But sleep- without Trazadone for me- is like trying to sleep on a school bus. Misery.

 

Sometimes it is worse, sometimes it is less worse, and sometimes it is excruciating. To be so desperately exhausted and unable to stay asleep is aweful.

 

This is part of N for some. If you are among the chosen few, I am so sorry. Medication has been a Godsend for this. Just please avoid anything that creates a dependency.

Share this post


Link to post
Share on other sites

I have never had a problem with insomnia ever...in my whole life. If I sit still for five minutes, I'm asleep...and I'm usually asleep as soon as my head hits the pillow whether it's for my nap or my nighttime sleep. I also have N with C.

I know people who have insomnia and I am grateful that I don't have it.

Share this post


Link to post
Share on other sites

My reason for asking if anyone experienced a period when they could not sleep is because with my sleep apnea, even after starting treatment it was easy for me to fall asleep after a twelve hour day.  However, I had a period in which I could not sleep for a few weeks.  It was a time of turmoil for me and I attributed it to that despite having never have what I consider the most severe episode of insomnia that one could ever have.  Today while reading through another tread someone else mentioned experiencing such an episode years before being diagnosed as well.  It their is a subset of individuals with narcolepsy who have such an experience, and believe me if you had this experience you would never forget it, it might indicate a period of destruction of hypocretin producing cell with the unregulated release of hypocretin and prolonged period of alertness. 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now