How to find a good Sleep Specialist in the U.S.
Last updated 12/22/11 6:18pm EST
Word of Mouth
The best way to find a good sleep specialist is almost always to ask local people with narcolepsy (PWN) and people with idiopathic hypersomnia (PWIH) which sleep specialist they like best.
Post a request for recommendations in your area on PWN facebook pages and other narcolepsy support boards.
There's also this thread of doctor recommendations on talkaboutsleep.com's narcolepsy board. It's hit or miss, but worth a shot: http://www.talkaboutsleep.com/message-boards/viewtopic.php?t=12223&sid=19f8e0101cd7e22e3427ed66ae7f6fbe.
How to find a certified Sleep Specialist for an adult patient when you don't have a word of mouth recommendation
Right now, four different organizations keep different lists of certified Sleep Specialists that treat adults. There's not necessarily any reason to go with a Sleep Specialist with board certification from one organization or another. The consensus on our facebook PWN group seems to be that the best narcolepsy and idiopathic hypersomnia (IH) Sleep Specialists aren't necessarily neurologists, pulmonologists, or certified by one board or another.
One major exception to this is for people with additional neurological symptoms that are not explained by narcolepsy. If you might be in that category, you may be wise to look for a neurologist who is certified in sleep medicine.
Here are the fastest ways to track down sleep certified doctors near you, listed with the most user-friendly methods first:
1. Neurologist and Psychiatrist Sleep Specialists:
For neurologists and psychiatrists certified in sleep medicine by the American Board of Psychiatry and Neurology since 2007, go here: https://application.abpn.com/verifycert/verifycert.asp. You can search for Sleep Specialists, and sort by city and state.
If a particular neurologist or psychiatrist is not in this database, it does not necessarily mean that he/she is not certified in sleep medicine. He/she may be certified by the American Board of Sleep Medicine (see #2).
Also, be aware that some of the sleep certified doctors in this database have also been sleep certified by the American Board of Sleep Medicine for a very long time, and are conscientiously maintaining their knowledge and getting tested again more recently by this board.
2. Any Sleep Specialist of any type certified before 2007:
The American Board of Sleep Medicine lists Sleep Specialists certified before 2007. They only have a listing by last name, so you've got to scan their list for your state. Argh. But it's here: http://www.absm.org/listing.aspx.
If a particular doctor's sleep certification is listed only in this American Board of Sleep Medicine database, the doctor has not been required to learn a thing about sleep medicine since they were originally certified sometime between 1978-2006. That doesn't mean that the doctor is a bad Sleep Specialist, at all. It just means that it is the doctor's choice whether he/she has stayed up to date with the state of the art treatments for narcolepsy and IH.
3. Pulmonologist Sleep Specialists certified since 2007:
Many Sleep Specialists are pulmonologists. The American Board of Internal Medicine is the board that certifies pulmonologists in pulmonology. For pulmonologists getting certified in sleep medicine since 2007, it's also the board they go to for sleep medicine certifications.
Unfortunately, there is no directory on the American Board of Internal Medicine website on which you can find Sleep Specialists in pulmonology. What you CAN do on their site is type in the first and last name of a pulmonologist to see if that doc has been certified in sleep medicine by this board.
To do that, go to http://www.abim.org/ and look for the yellow "Verify a Physician's ABIM Certification" box in the lower left-hand corner.
When the results pop up, be sure to scan for "Sleep Medicine" under the heading "Certification Area." If it's not listed, or it has expired, then that doctor is NOT sleep certified by the American Board of Internal Medicine. However, he/she may be listed as sleep certified by the American Board of Sleep Medicine (see #2 above).
Be aware that some of the pulmonologists certified as sleep specialists by this American Board of Internal Medicine have also been sleep certified by the American Board of Sleep Medicine for a very long time, and are conscientiously demonstrating that they have updated their knowledge and getting tested again more recently by the Internal Medicine board as well.
4. Family Medicine Sleep Specialists certified since 2007:
The American Board of Family Medicine has certified an extremely small number of Sleep Specialists since 2007, and you can find those here: https://www.theabfm.org/diplomate/find.aspx.
Once you've found the name of a sleep specialist near you, don't just make an appointment!
I strongly advise doing two more things to find out whether this Sleep Specialist knows the difference between narcolepsy, IH, and his/her big toe. Many Sleep Specialists are competent in treating obstructive sleep apnea, and nothing else.
Find out if this Sleep Specialist has experience in treating Narcolepsy (or Idiopathic Hypersomnia, if that's what you've got):
I suggest calling the various Sleep Specialists' offices, and asking the receptionist how many narcolepsy patients the doctor has treated since 2002, or is treating now. If the receptionist says none or very few, you may be wise to find a different Sleep Specialist.
The reason to ask how many narcolepsy patients the Sleep Specialist has treated since 2002 is that 2002 was the year Xyrem first became available by prescription in the U.S. Sleep Specialists who have not treated people with narcolepsy (PWN) since 2002 may not be at all familiar with the state of the art medications now available for treating narcolepsy.
Finding an accredited sleep center:
If you need to get a sleep study done, there's also a site where you can find sleep centers that are accredited by the American Academy of Sleep Medicine. That site is here: http://www.sleepcenters.org/. If a particular sleep center is not accredited, there may be a very good reason for that.