Health professionals who have narcolepsy

I am a psychiatrist who is able to work full time with the help of medication which allows me to stay awake at work. i would enjoy talking with other medical professionals who are dealing with this illness

Shrinkmom, it is so inspirational that you are able to work full time and help patients while dealing with narcolepsy. I don't know if we have other medical professionals in your situation here, but I'm sure our members would like to hear more about how you cope with staying awake. Which medication is helping you?

That is awesome that you have the ability to do that. I just started my new job yesterday at our new (first ever in our area) indoor gun range. I told my boss/ trainer about my Narcolepsy and he said he knew someone else who has it and he is already been accommodating as needed. The cool thing is I am going through to get my certifications because they want me to be someone teaching classes in the near future. I also do Search and Rescue on the side and as long as I can let people who need to know what to expect and how to deal with things, the better thing will go and I can still participate in things I love to do. If we dont take the opportunity to reach out or to educate or to ask for accommodations, no one is going to be able to help us out and we will continue to loose that independence and ability. I think the more we are open about what it is that we have and the more those of us who try not to let our disadvantages hold us back get out there and just keep trying, then maybe we can inspire others to try things again. Granted not everyone can get out there and be a go getter, but I sure hope they try. I love hearing how others help change the world, one moment at a time!!!

Thank you for the positive feedback. i take quite a lot of meds to be able to do what I do-Adderall 40 mg TID, Provigil 400 mg twice a day. As long as I time the doses right it works pretty well. My biggest problems are being able to say no to people making requests so that my hours do not get totally out of hand. I find that if I work too much, my fatigue is much worse. I have made a diagnosis of narcolepsy in a few of my patients who see other doctors who did not know what was wrong with them. It gives me a lot of insight into the struggles that my patients have regardless of what their medical or psychiatric disabilities is.

To Princess Notso Bright good luck with you work. The most important advice I can give you is to pace yourself, don't try to do too much, and listen to your body when it tells you to rest.

Shrinkmom, I am so happy to see a post like this. I have a very dear friend who is a lawyer and also works full time. It is not easy for her by any means, but she manages. Her Narcolepsy is not very severe at this point and she does not have cataplexy, this may be to her advantage when it comes to working. She is also still able to drive. I also have a friend who is a nurse who has Narcolepsy and another friend finishing nursing school. I believe they all are able to take Xyrem and this seems to be a great benefit to them all as well.

I myself am not able to work, but I have a very complicated medical situation. I ask also very limited on what medications I can take. I take Adderall 10 mg instant release every 3 hours during the day as needed to stay awake. I actually recorded a video of myself having a sleep attack the other day, it was pretty insane to see what I looked like. You really have no clue what is actually happening until you see something like that.

dear kristin

Thank you for responding to my post. I, like your friend do not have cataplexy and consider rmyself very lucky. My narcolepsy is moderate I would say, not severe. My biggest fear is becoming tolerant to the meds which help me make it through the day. A big issue which you mentioned is driving. Up until now I have been able to drive and still will to a limited extent, but had a car accident last week which really shook me up. I would be interested in hearing from other people who are still driving ,but have issues with it.

Hello Shrinkmom and Everyone else,

I live in Western Australia; about a two hour drive from the nearest city, Geraldton, where I go for most of my general medical appointments, and a four hour drive to Perth, for specialist appointments - (3rd fusion and laminectomy in Perth on 20 January 2015). Both of the cities, which I have referred to, are relatively small by comparison with most major cities around the world. Most of the townships along the way would be referred to as small villages,generally about sixty to eighty kilometres apart. Consequently, these trips, at most stages, can be rather monotonous. I often find that I am going into that place where I am dozing-off. When this happens, I know that I must pull off the road, set an alarm, if I am short of time, and lean my seat back to have a rest. Normally, I go to sleep fairly quickly. Sometimes I wake about 20 minutes later. At other times, particularly at night, I may wake some hours later. When I awake I am normally quite refreshed and able to continue the trip.

Another characteristic of that dozing feeling, when I am in a course lecture, watching TV sometimes, or reading a book or newspaper, my thoughts seem to evolve into a dream as I feel the sleep take over. I also have woken up when my head bumped the table. These issues have made it difficult to focus on academic course content.

The important thing for me is, that if I am in a situation that absolutely requires my attention, e.g. driving, and I begin to sense that overwhelming feeling, I have to stop, safely, and accept going to sleep. Not even getting out and walking for a while seems to dispel that irresistible tiredness.

When I was working in an office, I would hold on till lunch time when I could lie down and sleep for the half hour or so. I also remember, in a class at school, having a blackboard duster (yep - dinosaur material) thrown at me when, while trying to pay attention, my head fell backwards in the seat. I really don't know whether it was the duster that woke me or the involuntary snore, which i only vaguely remembered afterward, as my head lolled back. At other times I recall propping myself to make myself appear to be reading class material. In those days, it would have been considered laziness or poor sleep habits that would have been assessed as the cause of such events.

Interestingly, it is only since reading other peoples' experiences on this forum that I have recalled these events and been aware that I have what could be a diagnosable medical problem.

Cheers, Peter