Yesterday, I had my last appointment with my current psychiatrist. He is retiring. Although I only see him for 20 minutes every 6 months, I will miss those appointments. My therapist has been a far better help as I continue to learn how to live with narcolepsy, but my psychiatrist definitely made an impact on me in our limited contact. Unfortunately, I have no idea who I will start seeing now. His position will remain vacant for at least 6 months, and the clinic is so overwhelmed that no one else is taking new patients for at least 3 or 4 months. Thus, I am adrift yet again. Fortunately, I have at least a year on my fluoxitene prescription, which is the med that my psychiatrist wrote for me, but I would like to continue to see someone.
Interestingly, my psychiatrist asked me about my “neurologist,” assuming that I see one for my narcolepsy. I tactfully said that I see a pulmonary specialist for my narcolepsy. We then chatted about how frustrating it can be with a disease like narcolepsy. Most diseases and conditions are handled by the doctors who specialize in that body system, but sleep issues affect MANY systems. Thus, the original sleep doctors were primarily psychiatrists. Certainly, some neurologists became interested, but there are so many neurological conditions that most neurologists have almost no experience with sleep issues (even narcolepsy). Due to the huge (and growing) numbers of people with obstructive sleep apnea (OSA), many pulmonary doctors achieved sleep certification, but most of them only handle OSA. They can diagnose more “classic” narcolepsy, but rarely recognize the wide variety of ways that narcolepsy can impact PWNs. Unfortunately, some pulmonary doctors have NEVER actually handled a narcolepsy case. One of my PWN friends was told by her initial doctor that he was transferring her to a different doctor because he had no idea what he should prescribe for her when her PSG and MSLT showed narcolepsy. Finally, the number of ENTs with sleep certification is also growing. Sadly, those doctors are also focused on OSA. The new research that has provided narcolepsy with cataplexy is definitely an auto-immune disease has raised hopes that immunologists will begin looking at sleep, but the bottom line is that most PWNs struggle to find a decent doctor.
My conversation with my retiring psychiatrist reminded me of my own frustrations with my current sleep doctor. Even though he is a pulmonary doctor, he does know a decent amount about narcolepsy, but he did not even talk to me the last time I was at his office. For him, it is all about getting me the right meds. I wish there was a decent neurologist in the Minneapolis/Saint Paul area who treated sleep issues, particularly narcolepsy. The only person I know of was not practicing until recently, and she could only begin working again recently in southern Minnesota. She is also a dear friend which would make it awkward for her to be my neurologist. A fantastic neurologist (almost as good as my friend) practices in Saint Cloud, but that is an hour and a half drive. Plus, I will likely have to pay for the appointments out of my own pocket. At the same time I desperately want to see a doctor who honestly gets narcolepsy. I must admit that my deepest desire would be to find a neurologist who specializes in sleep that is also a PWN. I firmly believe that many PWNs would travel across the country to such a doctor. Who knows, maybe someday!
Just stumbled upon your blog. I, too, have narcolepsy (diagnosed in the early 80’s).
How do I follow/subscribe? Perhaps I missed it, but I don’t see a link,
DAB,
I believe that clicking the “Entries RSS” link under “Knightly Admin Items” provides you a way to subscribe. You can also paste my blog’s address into your Blogger “Reading List” – in the Dashboard area. I hope that helps. Also, I am adding your blog to my blog roll. Cheers!
Hello,
I got diagnosed a little over a year ago with Narcolepsy, and have gone through 7 doctors thus far just trying to find a doctor that understands the meaning of the word “TEAM”. As well as the reasons to actually follow up on tests. I am 30 but have been having symptoms which gradually have gotten worse over the past 20 years.
I had my first cataplexy attacks prior to the age of 10 (I would be laughing at a joke and I fell into a snow bank, and nodded off after ice skating one day). My most abrupt and memorable cataplexy occurrence was at the age of 10 when I took my sister’s bike for a ride (it was exhilaratingly fast), I started to get dizzy, barely made it off the thing walked into where my parents and sister were, my speech started to slur, things went a bit gray, I dropped, and was carried into the next room, I heard the entire conversation, I was talking, but no one heard me. I guess one of the main ways it affected me is that I thought I wasn’t trying hard enough. I got angry, and never allowed my self to get any joy out of my accomplishments for fear I wouldn’t be able to concentrate or keep up. (Not to mention my family is really angry all the time anyway so it was acceptable).
Possible assistance:
Granted you are not going to like this…. I sure as heck didn’t, but if Narcolepsy symptoms began prior to the age of 22, it is classed as a developmental disability. And it may open up other areas of finding contacts and resources for assistance, (not to mention educational material for your physician) something that should have been made available to me over a year ago at least. I have a Psychiatrist treating the Narcolepsy too. What is pissing me off is that she is intimidated by me, and gets all flaky if she looks me in the eye, heck I think it would be easier to hook up with her then get proper medical care. (Granted, that was the deal the previous Psychiatrist was running with his female patients)… thats besides the point. Anyway: http://www.omr.state.ny.us/index.jsp and http://www.narcolepsyinstitute.org/index.html
In NYC there are programs that provide transportation for people with Narcolepsy since there is such a risk of missing stops. Granted since you are intelligent, this might be one of the reasons why this type of service or resource hasn’t been made available to you… as in my case. I was told by several women who work with people who are disabled… “man up” when I told them about the memory problems that I am dealing with.
By the way, there are patient assist programs available for the medication if the Cataplexy gets in your way. As far as I know (I have yet to start it) I am able to get free Xyrem direct from the company due to me being disabled without insurance. There are programs even for Provigil if you qualify.
I just found this link through the Narcolepsy Network site under support groups, yesterday. I also posted a reply or two on the NN forums to you.
Best of luck! Oh yeah, manic states are the only way I get anything done much of the time.
-Gary
BTW, I just realized I was confusing your blog with someone elses… my appologies I was just jumping from blog to blog. The reply I think in regards to information on additional assistance might prove useful. Good luck just the same.
I totally feel for you on this one-it sucks when you know more about your medical condition than the doc does!! I wish I had a great suggestion for you though other than for hang in there and keep writing…maybe your good doctor friend could recommend someone just as good?
Gary and Narcogirl,
Thanks for the kind words. Gary, no worries on the blog confusion, I simply appreciate the timed you took to read my blog and the other one, as well as the energy you put into your response. I published the post because you have awesome insights that will likely help many PWNs. Cheers!
I’ve missed your blogging the last couple of weeks. Thanks for the effort you make to keep it up. I was at the 2008 Narcolepsy Network conference in Milwaukee. I met a woman who is married to a sleep doctor with narcolepsy, and who has two sons with narcolepsy. I will have to go through my notes from the conference tonight, I think I have her name and number. Can’t remember where she is from, but like you, I would love to see a sleep doctor who really knows the ins and outs of N.
I have been thoroughly remiss in keeping track of this struggle with you.
No more.
Michele,
Thanks for the kind words. It would be great to get the doctor’s name. I love that you might give me the chance to test my own theory.
Dana,
You are too sweet! As always, I appreciate that anyone takes the time to read my ramblings. In many ways, the blog is one of my primary ways to help me. The fact that it brings me support and provides help to others is more than I ever could have asked.
Cheers!
This is too weird. I stumbled upon your blog doing a search for health insurance. We are the same age and live in the same metro area. I too was diagnosed with Narcolepsy in 2007 in a fluke, the referring doctor thought that I had Sleep Apnea after I took the Epworth inventory. I had been complaining of being tired for about 18 years at that point. Thanks for the blog…it is nice to know I am not alone!
hye..
i’m from malaysia!
just a blogwalker to find new narco friends.
be Happy! =)
SleepyMNLady,
I hope we can connect!
slaveofallah,
Welcome! I hope you stop by again.
Main Man