premednarc

Doctors With Narcolepsy??

42 posts in this topic

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. 

 

 

Over the past 3 weeks, I've experienced 4 or 5 nights where I got literally zero hours of sleep (including last night). It's bizarre, as I've never experienced it before. Normally I'm what you'd consider the "long-sleep"-type narcoleptic, though I do have very significant sleep fragmentation, like Hank.

 

Taking Adderall today was like putting a Band-aid on a bullet-wound. I'm not looking forward to this evening, to say the least... though I am looking forward to bedtime. Hopefully I'll sleep!  :(

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Hm, I do experience something like this. If I am woken up while I am falling asleep (usually within the first 30 minutes); about 75 percent of the time I cannot go back to sleep. It takes an hour or two. I can be exhausted, but its like my brain is awake. I often wonder if this is what insomniacs experience. 

I wonder if it is because we enter REM so quickly and gain some restorative benefits of sleep. 


On the topic though, I am a Mental Health Therapist. Undergrad was hard, Grad school was actually easier. Ended up working the night shift a lot of the time and my classes were in the evening. Ended up falling asleep on patients, which made me finally admit something was wrong and getting tested. 

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Hi Everyone,

I could use some advice, if you have a few minutes! I'm currently an MS2 - just diagnosed in August. I've been taking Modafinil (Provigil), and its helped tremendously. When taking my medication, my symptoms of EDS are completely controlled. To my disappointment, I had to share my diagnosis with the director of my medical school. (My entire class was randomly drug tested.) At the end of this spring, I'll be moving from a smaller, regional campus to the main center for my 3rd & 4th year rotations. My director instructed me to reach out to the school's Assistant Dean of Academic Advising. The Assistant Dean, who serves on the Committee for Disabilities & Accommodations, advised me to obtain a letter from my neurologist before starting rotations. She vaguely said he should include examples of how my disease may affect me during rotations - mostly for my protection. (I.e. What if a clerkship director gives me a bad evaluation b/c he thinks I'm bored and disinterested instead of fighting to stay awake.)

 

I understand the purpose of this letter, and I'm not opposed to it. However, I'm having a really hard time getting my physician to write it for me. At my appointment, he basically dismissed my request. In his words, "While your symptoms are so well controlled, you shouldn't have any issues." Then, he told me to follow up with his nurse (I get it. He's busy.) After playing phone-tag and messaging through my online portal, I've finally gotten him to agree to write it. Except, he wants to know "specifically what I want him to say".

 

The truth is, before I was diagnosed or medicated, I could have given you a dozen examples of how my narcolepsy affected me. Now, however, none of them are (thankfully) happening anymore. Additionally, I don't know EXACTLY what 3rd & 4th year rotations will be like. Therefore, I'm struggling on what to tell my physician. I was hoping he would have a generic letter that he could tailor to my case, but instead, I think he wants me to basically write the letter for him.

 

For those of you that have already completed medical school, rotations, training, etc. -- can you give me help me brain-storm scenarios to cover in this letter?

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It depends on how well Provigil will work for you in a very demanding and stressful environment.  If you are completely asymptomatic with Provigil with no side effects, that's all the letter has to say, that there is no impairment.

 

If crazy hours are involved, then that could be a problem.

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Hi Everyone,

I could use some advice, if you have a few minutes! I'm currently an MS2 - just diagnosed in August. I've been taking Modafinil (Provigil), and its helped tremendously. When taking my medication, my symptoms of EDS are completely controlled. To my disappointment, I had to share my diagnosis with the director of my medical school. (My entire class was randomly drug tested.) At the end of this spring, I'll be moving from a smaller, regional campus to the main center for my 3rd & 4th year rotations. My director instructed me to reach out to the school's Assistant Dean of Academic Advising. The Assistant Dean, who serves on the Committee for Disabilities & Accommodations, advised me to obtain a letter from my neurologist before starting rotations. She vaguely said he should include examples of how my disease may affect me during rotations - mostly for my protection. (I.e. What if a clerkship director gives me a bad evaluation b/c he thinks I'm bored and disinterested instead of fighting to stay awake.)

 

I understand the purpose of this letter, and I'm not opposed to it. However, I'm having a really hard time getting my physician to write it for me. At my appointment, he basically dismissed my request. In his words, "While your symptoms are so well controlled, you shouldn't have any issues." Then, he told me to follow up with his nurse (I get it. He's busy.) After playing phone-tag and messaging through my online portal, I've finally gotten him to agree to write it. Except, he wants to know "specifically what I want him to say".

 

The truth is, before I was diagnosed or medicated, I could have given you a dozen examples of how my narcolepsy affected me. Now, however, none of them are (thankfully) happening anymore. Additionally, I don't know EXACTLY what 3rd & 4th year rotations will be like. Therefore, I'm struggling on what to tell my physician. I was hoping he would have a generic letter that he could tailor to my case, but instead, I think he wants me to basically write the letter for him.

 

For those of you that have already completed medical school, rotations, training, etc. -- can you give me help me brain-storm scenarios to cover in this letter?

 

Here's my advice:  They're violating the ADA.  They have no right to ask you to submit a letter from your physician unless they have a REASONABLE concern about your ability to do your work safely, in which case all they need is a letter from your doctor saying that you are capable of doing your work safely.  They certainly have no right to a letter from your own physician listing all the possible ways you might be impaired.  That will be Exhibit #1 if they decide you're a liability to them.  

 

The "clerkship director" excuse is BS.  So what if you get a bad evaluation for looking bored.  Will the director suddenly change her evaluation because she finds out you have narcolepsy?  Of course not.  The school wants this letter to protect themselves.  Remember, the disabilities folks at any employer or school may seem like lovely people, but even though they'll tell you that their goal is to help you, in reality their goal is to protect the institution, NOT you.  They are not your allies.  If at some point you need accommodations, you'll have to submit a letter from your doctor to support the need for accommodations, which should be limited to the minimum amount of information possible.  Until then, don't submit a thing other than a letter saying you're fit to work, and only if they demand one.

 

I would suggest that you tell them very kindly that you're just a little puzzled by the request, and were wondering if there was an official academic policy on this issue.  Plus that if they want a letter from you, you just need them to give you a specific request in writing, listing exactly what information they would like to know.  At that point, if they have brains, they'll realize that you're on to them, and will back off.  If not, and they do give you the request, review it with a disabilities lawyer.

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P.S.  You'll be fine on your rotations.  Every single one of us with narcolepsy blended right in with other students and housestaff because everyone is sleep-deprived in training.

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Hi Sleepy,

 

I agree with the others who have posted. I'm an MS4 graduating in May and was diagnosed a little less than a year ago, so I wasn't on medications during my rotations during MS3. I mentioned in an earlier post that I was falling asleep during my exams, but other than that I would say that no one noticed anything. I think everyone else is right in saying that the letter is probably more to the benefit of the school than for you, especially if you are well controlled on your medications.

 

However, if you decide to go ahead with the letter the things I had the most trouble with were morning/noon reports or lectures when lights are off for ppt presentations and long surgeries where you aren't allowed to do anything but stand there and watch, or even helping but just holding something as still as you can while they do surgery. To be quite honest though, every one else has trouble with those as well, so I don't even think it would be terribly helpful to have a letter to that effect. People dose during reports all the time and during your surgery rotation just try to steer yourself towards surgeries where you get to do something or that are short in duration. I don't believe that having a letter detailing the things you could possibly have trouble with will change the evaluations that you will get.

 

You will be fine, I promise!

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Trust me, a friend of mine in medical school was convinced to report a medical issue to a physician health committee with the exact same reason -- "for her own protection" -- before starting internship. Her residency director was notified and she was harrassed to the point of having to take a year off and change to an entirely different specialty.

I'm fortunate enough not to have even known I had N until well after medical school, but I know enough about academic medicine as an attending now to tell you DON'T do it. There is absolutely no potential benefit to you and you have everything to lose. You need to be very clear in asserting your rights. No one should be telling the clerkship directors about your narcolepsy -- this is your private medical information.

Protect yourself. Doctors are some of the most prejudiced people with regard to disabilities.

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Thank you. Thank you. Thank you. To be honest, the idea of writing a letter that tells people to lower their expectations for me was repulsive. I was worried I was just being defensive and overreacting. I've had narcolepsy for 10 years AT LEAST, and I found ways to not only adjust but to excel despite it. In fact, I was in the top quarter of my class in medical school without medication. And that's when I was stuck at a desk all day either studying or attending lecture (the two activities that made me the most sleepy).

Margeepoo, thank you so much for the suggestions. Those scenarios are definitely ones that I experienced pre-mediation, but they haven't occured yet. I'm hopeful it will stay that way, but also realistic that my medication might not work as well when I'm getting less regular sleep.

This woman only has one email from me that vaguely mentions my condition. Beyond that, we had one phone conversation. She did try to follow-up with me a few weeks ago to ask how the letter was coming. I haven't responded yet. Purpley, would you recommend that I reply to her as you mentioned before (that I've changed my mind and will not be submitting a letter). Or do you think it'd be best to just not respond and hope she forgets about me? As I type that, it sounds like a childish tactic, but I go to one of the largest medical schools in the country. I can safely say I am no where near the top of this woman's priorities.

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Thank you. Thank you. Thank you. To be honest, the idea of writing a letter that tells people to lower their expectations for me was repulsive. I was worried I was just being defensive and overreacting. I've had narcolepsy for 10 years AT LEAST, and I found ways to not only adjust but to excel despite it. In fact, I was in the top quarter of my class in medical school without medication. And that's when I was stuck at a desk all day either studying or attending lecture (the two activities that made me the most sleepy).

Margeepoo, thank you so much for the suggestions. Those scenarios are definitely ones that I experienced pre-mediation, but they haven't occured yet. I'm hopeful it will stay that way, but also realistic that my medication might not work as well when I'm getting less regular sleep.

This woman only has one email from me that vaguely mentions my condition. Beyond that, we had one phone conversation. She did try to follow-up with me a few weeks ago to ask how the letter was coming. I haven't responded yet. Purpley, would you recommend that I reply to her as you mentioned before (that I've changed my mind and will not be submitting a letter). Or do you think it'd be best to just not respond and hope she forgets about me? As I type that, it sounds like a childish tactic, but I go to one of the largest medical schools in the country. I can safely say I am no where near the top of this woman's priorities.

 

I'm just so glad I read your post!  The words "for your own protection" sent a chill down my spine.  I really am very grateful I thought I had ADHD in med school.

 

I'm going to respond privately, so please look for a message from me.

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I'm just so glad I read your post!  The words "for your own protection" sent a chill down my spine.  I really am very grateful I thought I had ADHD in med school.

 

I'm going to respond privately, so please look for a message from me.

I concur, the only time you should heed the warning "for your own protection" is when it comes from a lawyer representing you.  On a related issue sharing with patients: IMHO I think sharing diagnosis with patients once in practice would be an issue since it would no longer be protected information under HIPAA. If a patient has an adverse outcome a plaintiff's attorney would have a field day.  Not blaming the doctor but the illness for the unfortunate outcome and the need for $$$$$. If you would like to know some of the issue you may face with disability insurance message me and I will share the information I have and my experience.   

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I concur, the only time you should heed the warning "for your own protection" is when it comes from a lawyer representing you.  On a related issue sharing with patients: IMHO I think sharing diagnosis with patients once in practice would be an issue since it would no longer be protected information under HIPAA. If a patient has an adverse outcome a plaintiff's attorney would have a field day.  Not blaming the doctor but the illness for the unfortunate outcome and the need for $$$$$. If you would like to know some of the issue you may face with disability insurance message me and I will share the information I have and my experience.   

 

I agree -- you shouldn't share your diagnosis with patients.  You should also never post a status update on Facebook or other forums -- no matter how high your privacy settings are, because they are never high enough -- that expresses anything that could be interpreted as indicating you might have the slightest bit of impairment at work.  That includes simply saying that you are "tired," "stressed out," that you were up too late or drank too much the night before, etc.  If you ever get accused of making a medical error, I guarantee that the plantiff's lawyer will be saying, "So, doctor, I see that your status update that day says that you were..."  

 

Also, and this is very important, physicians should NEVER, EVER post any status updates related to patients, patient care, or behavior of colleagues or staff, NO MATTER HOW VAGUE, eg, "Why don't Surgery residents ever return their pages??" "I got slammed with admits last night," or "Boy, the ED is really empty today."  Nothing, not a single word.  It can and will be used against you.  Plus you'd be amazed how broad most hospital policies are regarding posting things on social media and almost anything can be cause for being fired, which comes in handy if an employer wants an excuse to get rid of you because you have narcolepsy.

 

Paranoia is sometimes a very good thing.

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Any female MD's with N have any experience with pregnancy during residency?

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Wow..

 

So I just read through all of the posts on this topic, and I SO wish that I had found this website earlier.

 

I was formally diagnosed with narcolepsy at the beginning of my third year (just after taking Step 1), after having symptoms since I was 16. My sleep doc is absolutely wonderful, and he had recommended that I tell the Dean of Students at my school, thinking that it would truly help me. His thought was that it would allow me to obtain accommodations for my rotations so that I could take 15 minute naps 2x per day, at my own discretion. This would then supplement any medications we would work out so that I could be as awake as possible.

 

The Dean (a nice guy, but completely unaware like many of the discrimination we can face) immediately pointed me towards our accommodations office. Start: the nightmare that was third year. I was approved for the two 15 minute breaks as needed. But almost every single rotation was a fiasco, for some reason or another. Early on, the issues arose because all of my attendings got this ambiguous letter with my accommodations written on it without really ever having a conversation with me about what they meant for me. I didn't initiate a conversation with them because I wasn't aware that they got this letter. So it created some awkward moments, like when I would use one of the breaks over a lunch period and run into a scheduled lecture 5 minutes late because I used a break to nap instead of eat. To avoid this on the next rotation, I told everyone, residents and attendings. Massive mistake. I was immediately looked at like a wounded animal. One of my residents would ask me all the time if I needed to go take a break, even when I was fine. It was more than obvious that from the start, my capabilities were never valued on the same level as my peers. 

 

My next rotation was my surgery rotation. I decided to take the exact opposite approach and tell no one, unless I felt 100% comfortable with them. It worked. I told several attendings on one of the sub-specialties, after they had worked with me for a little while and had already seen my work ethic etc. They were like oh wow, well clearly you are doing great - please let us know if there is anything you need. I opted to not tell any of the transplant surgeons, and still got great reviews. On my four weeks of general surgery, I spent a lot of time with the residents. I had a conversation with the chief resident, again after he had worked with me for a week or two, and I got the same response. It was so refreshing. For the first time, I was looked at "normally" and treated as such. Not only that, but when those selected individuals did find out, they were more than understanding. They told me right away that they could understand how someone could view me with bias and that I was doing the right thing by being selective in my approach. 

 

Long story short, I took the long route in realizing that there really is no "accommodation" that is ideal for a medical student on the wards. The 15 minute naps were absolutely refreshing, but when it came at the expense of needing to explain why you were disappearing when your fellow medical student on the team was still present, or being viewed as this mysteriously mentally handicapped person that could potentially collapse at any time - it just wasn't worth it. And the accommodations office never understood this. They told me that everyone I would be working with was an attending at a top academic institution for a reason. "They want to help you - it is absurd to think that anyone would be biased against you." Wrong. So wrong. 

 

That all being said, what I am wondering now from all of you is - how did you approach residency applications? Did you choose to disclose/not disclose?

 

I had one very blunt but somewhat helpful attending tell me that she refused to give me advise on the matter. She said, if you choose to disclose, I would absolutely be biased against you compared to your equal on paper. However, if you didn't and you told me after the match, you would have started off our relationship by lying to me, and I wouldn't trust you.

 

.....

 

I was like great - I see your points, but that's not helpful. haha. 

 

Anyways, I reached a point very recently where I thought, why am I even working so hard to do all of this? I have wanted to be a physician my whole life, and I have always been the type of person to over-extend myself because I refuse to believe that I can't have it all. But my symptoms have gotten exponentially worse over the last year or two (crossing my fingers that it's just med school..), and narcolepsy is dominating every aspect of my life. It eats away at all of my free time because all I can do is sleep. I want this career very badly, but I also need more. I was feeling hopeless enough to start doing google searches to see if there were other physicians out there with narcolepsy, and I landed on this forum.

 

So thank you all so much for being willing to connect and share your thoughts - it is the first time I've felt like there's hope in quite awhile. :)

 

Back to studying for Step 2 CK ... 

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So, my advice would be to leave it out of your applications. I am a PGY1, and just finished the application process. I included it in my applications and only got 1 interview outside my home institution, and I firmly believe that is the reason why. No one understands N and they don't want to take a chance on a resident who has it. I ended up soap-ing into a prelim position at my home institution and have to re-apply again this year. I will not be including it on this year's application.

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That all being said, what I am wondering now from all of you is - how did you approach residency applications? Did you choose to disclose/not disclose?

 

I had one very blunt but somewhat helpful attending tell me that she refused to give me advise on the matter. She said, if you choose to disclose, I would absolutely be biased against you compared to your equal on paper. However, if you didn't and you told me after the match, you would have started off our relationship by lying to me, and I wouldn't trust you.

 

Gee, thanks, Random Attending!  Here's my blunt advice:  Don't disclose.  No way, no how.  Two reasons:  One, there's prejudice against medical students and residents with disabilities, as you've already seen.  Two, you'll be seen as having poor judgment for having disclosed it on your application, because you should have known point #1.  No residency director, given the choice between two equal candidates, will take someone with narcolepsy over someone without narcolepsy.  Even if they're knowledgable about narcolepsy, it's more work for them to arrange accommodations if you need them, they'll worry that you'll make a mistake and they'll get sued because they hired you knowing you had narcolepsy, and they'll worry that you'll need to take a leave if the narcolepsy gets worse.  And if they're not knowledgable, they'll even take someone less qualified than you because of the diagnosis.

 

So, my advice would be to leave it out of your applications. I am a PGY1, and just finished the application process. I included it in my applications and only got 1 interview outside my home institution, and I firmly believe that is the reason why. No one understands N and they don't want to take a chance on a resident who has it. I ended up soap-ing into a prelim position at my home institution and have to re-apply again this year. I will not be including it on this year's application.

 

Exactly.  Margeepoo, I'm really sorry you found that out the hard way.  Another thing I recommend for women, especially if they're married, is to think of some believable excuse for why you'd never get pregnant during your residency and be prepared in advance to use it in an emergency.  Legally, of course, they can't even ask you if you're married let alone about starting a family, and definitely don't even mention pregnancy or children if it's not brought up by the interviewer.  But if you have an interviewer that's dropping hints about starting a family or has made sexist comments, find a way to drop it into conversation.  For example, you might be ready to say, "Well, I'm so fortunate that I have a ton of nieces and nephews, I'm definitely in no hurry to start a family myself."  If you're prepared in advance, you won't be so shocked by the question that you won't know what to say.

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I know this is an older thread but reading through it has been so helpful and I hope some of you still follow it. I am actually a veterinary student and I am having trouble getting accommodations so that I can have enough time, out of the hospital, to take Xyrem. I think it is probably OK not to take it on occassion, but the prospect of being forced to give it up long term is really upsetting. Has anyone had to approach this issue in school? residency? beyond? any suggestions?

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