Jump to content


Photo

Doctors With Narcolepsy??


  • Please log in to reply
37 replies to this topic

#21 purpley

purpley

    Member

  • Members
  • 706 posts
  • Gender:Female
  • Interests:Science and medicine. And staying awake, of course.

Posted 25 August 2014 - 06:37 PM

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.



#22 Lorax64

Lorax64

    Member

  • Members
  • 262 posts

Posted 25 August 2014 - 07:11 PM

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. 



#23 Hank

Hank

    Member

  • Members
  • 1,765 posts
  • Gender:Male

Posted 25 August 2014 - 07:58 PM

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.



#24 Ferret

Ferret

    Member

  • Members
  • 1,361 posts
  • Gender:Female

Posted 25 August 2014 - 09:59 PM

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.



#25 ErDoc

ErDoc

    Member

  • Members
  • 13 posts
  • Gender:Male
  • Location:Huntington Beach, CA

Posted 25 August 2014 - 10:14 PM

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. 



#26 rayraybaybay

rayraybaybay

    Member

  • Members
  • 193 posts
  • Gender:Female
  • Location:Richmond, VA
  • Interests:Rock and Roll, Vintage Jewelry, Decoupaging, Star Trek, Hiking, History, High Fantasy Books, Makeup Artistry, Tattoos, and Candy

Posted 26 August 2014 - 10:09 AM

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!  :(



#27 NetiNeti

NetiNeti

    Member

  • Members
  • 148 posts

Posted 01 September 2014 - 04:57 PM

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. 



#28 sleepydwarf914

sleepydwarf914

    Member

  • Members
  • 3 posts
  • Gender:Female

Posted 05 March 2015 - 06:27 PM

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?



#29 IdiopathicHypersomniac

IdiopathicHypersomniac

    Member

  • Members
  • 980 posts

Posted 05 March 2015 - 07:07 PM

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.



#30 purpley

purpley

    Member

  • Members
  • 706 posts
  • Gender:Female
  • Interests:Science and medicine. And staying awake, of course.

Posted 05 March 2015 - 09:03 PM

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.



#31 purpley

purpley

    Member

  • Members
  • 706 posts
  • Gender:Female
  • Interests:Science and medicine. And staying awake, of course.

Posted 05 March 2015 - 09:05 PM

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.



#32 Margeepoo

Margeepoo

    Member

  • Members
  • 3 posts
  • Gender:Female

Posted 05 March 2015 - 10:30 PM

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!



#33 purpley

purpley

    Member

  • Members
  • 706 posts
  • Gender:Female
  • Interests:Science and medicine. And staying awake, of course.

Posted 06 March 2015 - 12:30 AM

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.

#34 sleepydwarf914

sleepydwarf914

    Member

  • Members
  • 3 posts
  • Gender:Female

Posted 06 March 2015 - 01:13 AM

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.

#35 purpley

purpley

    Member

  • Members
  • 706 posts
  • Gender:Female
  • Interests:Science and medicine. And staying awake, of course.

Posted 06 March 2015 - 09:21 AM

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.



#36 ErDoc

ErDoc

    Member

  • Members
  • 13 posts
  • Gender:Male
  • Location:Huntington Beach, CA

Posted 06 March 2015 - 12:30 PM

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.   



#37 purpley

purpley

    Member

  • Members
  • 706 posts
  • Gender:Female
  • Interests:Science and medicine. And staying awake, of course.

Posted 06 March 2015 - 01:40 PM

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.



#38 Margeepoo

Margeepoo

    Member

  • Members
  • 3 posts
  • Gender:Female

Posted 21 May 2015 - 01:20 PM

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