What is the most effective way to get an er's staff accept that narcolepsy with cataplexy is a neurological problem not a psych problem?
Why to the ER? Why would a person go to the er for narcolepsy? And why would it be an issue in the er? Narcolepsy isn't an er kind of issue. Anyway if the er doesn't believe it's neurological then explaining hypocretin levels probably won't help and you won't be able to convince them.
Carry information. In addition to a medical alert bracelet or necklace, i would suggest carrying a brochure with you at all times describing the symptoms of narcolepsy and cataplexy. One such brochure can be downloaded at the narcolepsy network site (www.Narcolepsynetwork.Org). Even though it occurs at a rate of 1 in 2, 000 people, many physicians do not know much about the condition.
Misunderstood. I think that some of the docs answering this misunderstood the question and i hope nantucketer corrects me if I am wrong. I think the issue is how does someone with narcolepsy (n) who is in the er for some other reason make the staff aware of n? A cataplexy spell can easily be mistaken for a syncopal episode or catatonia. Hypnagogic hallucinations can be mistaken for psychiatric issues.
Go to a neurologist. Emergency departments are not equipped to make complex neurologic diagnoses. Did you make this diagnosis yourself? Then you need a real physician to verify. Then get a medic alert bracelet, and/or a note from your neurologist that you have this disease (if you do).
Probably none. It is not the emergency room duty to do more than treat acute findings. If you have known narolepsy and cataplexy you should be being treated and not have to present to the emergency room.If you present to the er for something else and they treat you differently because you are on meds or because of the diagnosis of narcolepsy even with another acute illness, you dr should educate the er staff.