- If you do have cells, you produce orexin
- And if you don't produce orexin, you don't have cells.
Orexin production fluctuates up and down regularly all day long in all people. That's how it works, high levels wakes us up and low levels puts us to sleep. 1
And many environmental triggers decrease orexin production without killing the cells. 2 3 4 5
Secondly- theres a pervasive idea that orexin cell loss is an all or nothing thing, either you have them or you don't, that they all get killed before you show symptoms. That is not true, even old dead narcoleptics still have between 5-10% of their cells left. 6
Most of this misunderstanding is the result of hasty conclusions. When orexin was first discovered, they had a bunch of old-time narcos who volunteered to be tested. And lo and behold they had no orexin. And normal people did. So it was clear: Narcolepsy is a lack of orexin. That's what the dog experiments showed. Those narcoleptic dogs are unable to produce orexin.
But then they started testing as many people as would let them stick a needle in their spines... and bam, they soon found people who still did produce orexin, but passed out and slept in the doctor's office anyway. So, since they couldn't go in those people's brains and figure out what was actually going on.... they just made another category to put those people into.
Since then, the evidence has clearly shown that there is a whole range of symptoms and cell loss and orexin levels that narcoleptic humans exhibit. Not only that, the symptoms are inversely correlated to orexin levels and these effects are cumulative. 7
Instead of two discreet diagnoses.... Type 1 and Type 2, the data actually indicates a progression of cell loss, orexin depletion and symptoms. Unfortunately, most sleep doctors cannot even name the five basic symptoms of narcolepsy, so yours is likely unaware of this development. 8
The current evidence supports the conclusion that narcolepsy is actually a combination of cell loss AND low production of orexin in the remaining cells. Erratic production causes symptoms in the beginning, but eventually the cells are killed.
This is why people who are tested close to the onset of symptoms may show orexin levels in the normal range.
And also why even if you do have viable cells, you still might not have any circulating orexin.
It is also why you should do something about it as soon as possible.