(Login patlittlejohn) Moderators Posted Jun 26, 2009 9:43 PM
At a time when narcolepsy was usually undiagnosed,
during the height of attention to depressive disorders, and other long-overdue awareness,
we were (mis)treated with the popular psych modes: from serotonin reuptake inhibitors all the way to heavy hypnotics.
If by chance a narco was treated with "mood elevators" they actually saw improvement, both in EDS and in cataplexy. But then the system was unwilling to "continue that indefinitely" and called us "unresponsive depression".
In the last 25 years sleep disorders like apnea and snoring got bumped into public awareness, profitability and therefore medical attention. For the first time (to their credit) sleep problems in young adults were viewed apart from the fragmented sleep of menopause and old age.
Enter sleep lab testing, where they discovered (again by accident) that monitoring REM sleep, with enough wires and brain/muscle data to rule out the usual seizure symptoms, could pinpoint narcolepsy with cataplexy in many cases.
Sending us to sleep testing and neatly ridding doctors of responsibility for the mysteries of N and C, put us into the category of pulmonology, and later the new specialty of Sleep Medicine.
Now that we have a good advance in N as an endocrine/immunology disease, it will take availability of testing and some advance in treating through endocrinology, for us to begin to see those specialists.
I think Neurology and Psychiatry didnt really pick up the load with us because their usual medicine chest of treatments did not work, or were going to need continuing care.
I spoke to more than 50 docs in my adult life, who said the words "I dont prescribe that", or "I cannot continue to prescribe".
I think our best chance for longevity would be classification, and treatment by specialists in, Chronic Diseases. the psych treatment would be more effective, and somewhere there might be some Chronic docs who actually treat N.